STRUCTURES AND SYSTEMS IN EVERDAY HOME CARE NURSING WORK: IMPACTS ON NURSE-PATIENT RELATIONSHIPS FROM THE PATIENT PERSPECTIVE by Rebecca M. Stent RN, BScN, Thompson Rivers University, 2011 THESIS SUBMITTED IN PARTIAL FULFULLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING UNIVERSITY OF NORTHERN BRITISH COLUMBIA April 19, 2024 © Rebecca M. Stent, 2024 ii Abstract This thesis examines the institutional structures and systems that coordinate everyday home care nursing work, and how they impact development of nurse-patient relationships from the perspective of patients. Using an institutional ethnographic methodology and incorporating patient-oriented research approaches, I interviewed patients and caregivers to gather rich descriptions of what actually happens in the day-to-day work of receiving home care nursing services, including the work of home care nurses that is visible to patients. Though institutional constraints related to efficiency and productivity can make providing relational care challenging, patients and home care nurses work around these ruling relations and find ways to meet the relational care needs of patients. The often-invisible labour of relational care needs to be recognized and valued at an institutional level to ensure home care nurses can meet the holistic care needs of patients and provide high quality, personalized, patient-centred care within a resource-constrained system. iii Table of Contents Abstract.............................................................................................................................. ii Table of Contents ............................................................................................................. iii List of Tables .................................................................................................................. viii List of Figures ................................................................................................................... ix List of Acronyms ............................................................................................................... x Acknowledgements .......................................................................................................... xi Dedication ........................................................................................................................ xii Introduction ....................................................................................................................... 1 Chapter One: Background ............................................................................................... 3 Overview ......................................................................................................................... 3 Study Context .................................................................................................................. 4 A Recent History of Home and Community Care in Canada............................................. 4 Home and Community Care in Northern British Columbia ............................................... 6 Meeting the Needs of Northern British Columbians Receiving Home and Community Care............................................................................................................................................ 9 The Nurse-Patient Relationship in Home and Community Care ...................................... 9 Chapter Two: Integrative Review of the Literature .................................................... 12 iv Identification of the Problem ........................................................................................ 13 Developing a Search Strategy ....................................................................................... 13 Selection of Databases and Search Terms ............................................................................. 14 Inclusion and Exclusion Criteria............................................................................................... 14 Conducting the Search .................................................................................................. 16 Evaluating the Data: Quality Appraisal and Sources Included ................................... 17 Analyzing the Literature: Abstraction and Synthesis.................................................... 17 Thematic Networks....................................................................................................................... 24 Presentation of Literature Review Findings ................................................................. 24 Hierarchy, Efficiency, and Productivity: Where do Relationships fit? ......................... 25 Construction and Cultivation of Relationships: The Impact on Care Quality ............. 30 How Context and Environment impact Relationships ....................................................... 39 Literature Review Summary .......................................................................................... 42 Future Research ............................................................................................................................. 46 Limitations of the Review .......................................................................................................... 47 Literature Review Conclusions ..................................................................................... 48 Chapter Three: Methodology and Methods ................................................................. 50 Objectives ...................................................................................................................... 50 Methods of Inquiry ........................................................................................................ 50 Theoretical Framework ............................................................................................................... 50 Methodology Selection ................................................................................................................ 52 v Characteristics of Institutional Ethnography ............................................................... 52 Standpoint........................................................................................................................................ 52 Daily Work ...................................................................................................................................... 53 Ruling Relations ............................................................................................................................ 53 Explication ...................................................................................................................................... 54 Disjunctures .................................................................................................................................... 54 Problematic ..................................................................................................................................... 54 How Institutional Ethnography Draws on Texts .................................................................. 55 The Lens of Institutional Ethnography ......................................................................... 55 What will be Examined and How? ................................................................................ 56 Characteristics of Patient-Oriented Research .............................................................. 57 Research Design: How to Read this IE......................................................................... 58 COVID-19 Considerations ......................................................................................................... 58 Role of the Researcher ................................................................................................................. 58 Ethical and Operational Approval ............................................................................................ 60 Participants ...................................................................................................................................... 61 Engagement of the Patient Partner ........................................................................................... 67 Data collection and analysis ....................................................................................................... 68 Rigour, Generalizability, and Validity .................................................................................... 74 Privacy, Confidentiality, and Anonymity .............................................................................. 74 Dissemination and Knowledge Translation .................................................................. 77 Chapter Four: Introduction to HCN: Busy Nurses and Good Patients .................... 78 vi A Description of HCN Services in a Northern BC City ................................................ 78 Accessing HCN Services ............................................................................................................ 78 Scheduling a Home Visit ............................................................................................................ 80 Visits from Regular Area Nurses versus Substitute Nurses .............................................. 82 Description of an Everyday HCN Visit .................................................................................. 84 During, Between, and Following HCN Visits ...................................................................... 87 The Work of Patients and Caregivers: The “Good Patient”........................................ 90 The “Good Patient”: Increasing Efficiency, Convenience, and Ease of Work ........... 90 The “Good Patient”: Prioritizing HCN Enjoyment of their Work .................................. 91 The “Good Patient”: Avoiding Conflicts and Decreasing Tensions .............................. 95 “Good Patient” Work: A Potential Source of Tension ................................................. 96 The Problematic in Good Patient Work .................................................................................. 97 Feeling Known and Developing Relationships ............................................................. 98 The Protective Factors of Being Known ..................................................................... 101 Chapter Five: Discussion .............................................................................................. 104 Ruling Relations and Patient-Centred Care: A Review of the Texts .......................... 105 Ruling Relations and HCN-Patient Relationships: Importance of Being Known ...... 107 Ruling Relations and HCN-Patient Relationships: Barriers to Being Known ........... 108 Prior Experiences within the Healthcare System ............................................................... 109 Efficiency and Productivity ...................................................................................................... 110 Continuity of Care....................................................................................................................... 112 vii The Potential Problematic in “Good Patient” Work ................................................. 114 Ruling Relations and Coordination of HCN-Patient Relationships ........................... 117 The Impact of Location, Language, and Power .......................................................... 119 Impact of this Research............................................................................................... 123 Implications for Future Research ............................................................................... 125 Contributions from the Patient Partner ...................................................................... 126 Limitations .................................................................................................................. 128 Conclusions ................................................................................................................. 131 References ...................................................................................................................... 133 Appendix A: Literature Review Search Strategy Keywords .................................... 144 Appendix B: Literature Review Matrix Sample ........................................................ 145 Appendix C: Ethical and Operational Approval ....................................................... 146 Appendix D: Recruitment Poster ................................................................................ 151 Appendix E: Information Letters and Consent Forms ............................................. 153 Appendix F: Letter of Transition: Patient Partner ................................................... 164 Appendix G: Preliminary Interview Questions ......................................................... 165 Appendix H: Maps of Social Relations ....................................................................... 167 viii List of Tables Table 1: Home Health Care vs. Home Support Services .................................................... 7 Table 2: Integrative Literature Review Inclusion and Exclusion Criteria ........................ 15 Table 3: Integrative Literature Review Sample Summary ............................................... 20 Table 4: Thematic Networks ............................................................................................. 23 Table 5: Inclusion and Exclusion Criteria for Study Participation ................................... 65 Table 6: Participant Demographics ................................................................................... 66 Table 7: Patient Partner Activities and the Steps Model .................................................. 68 Table 8: Preliminary Interview Guide Questions and Rationale ...................................... 70 ix List of Figures Figure 1: Timeline of Relevant Canadian Investments in Primary Health Care ................ 5 Figure 2: Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Diagram ...................................................................................................................... 16 x List of Acronyms Acronym Definition BC British Columbia CHCA Canadian Home Care Association HCN Home Care Nurse/Home Care Nursing IE Institutional Ethnography/Institutional Ethnographic PHCTF Primary Health Care Transition Fund PCP Primary Care Provider IV Intravenous CIHR Canadian Institutes of Health Research UNBC University of Northern British Columbia CINAHL Cumulative Index of Nursing and Allied Health Literature MEDLINE Medical Literature Analysis and Retrieval System Online MeSH Medical Subject Headings JBI Joanna Briggs Institute CASP Critical Appraisal Skills Programme CGT Constructivist Grounded Theory xi Acknowledgements Thank you to the participants who generously shared their time, energy, and experiences. Thank you to the home care nurses and Northern Health who supported this work. To my supervisor, Dr. Erin Wilson, thank you for being my tireless advocate and for the opportunities for growth along the way. You have inspired me to love research through the ups and downs. I am incredibly grateful for your support, mentorship, and guidance. Thank you to my committee members. Dr. Caroline Sanders, for teaching me how to ask questions and demonstrating how wonderfully creative and exciting research can be. Dr. Catherine Ringham, for guiding me in the complex and endlessly fascinating and inspiring world of institutional ethnography. It has been a pleasure working with and learning from both of you. To my patient partner, Angela Thomson, thank you for sharing your insights, knowledge, perspectives, and experiences, for your patience as we went on this learning journey together, and for the laughs and support along the way. You continue to inspire me. David, thank you for supporting my goals, handling countless meals and bedtimes, celebrating my successes, and letting me wallow (for a little while) in my struggles. Thank you for always telling me how proud you are, for your endless patience, and for having the faith to blend families in the middle of this journey (and a pandemic) without hesitation. To our children: I started as a single parent with a toddler and kindergartener and am finishing with four amazing children in my blended family. To Isla, Norah, Blake, and Madilyn. For your support and encouragement, patience when my days were long and exhausting, and times you forced me to step away from my computer for some fresh air, a meal, a movie, or a game – thank you. You gave more meaning to this work than you know. xii Dedication I dedicate this work to my parents, Paul and Norma Stent. You pushed me when I was uncertain, had more faith in me than I had in myself, saw the potential in my future, and supported me in a million ways, small and large, every day of my life. Thank you is not enough, but I will say it anyways: Thank you. 1 Introduction Home and community care in northern British Columbia (BC) encompasses a range of services that augment self-care and formal and informal supports. These services aim to help people remain in their homes and communities (Northern Health, 2024a). Under the umbrella of community care is home health, which includes home care nursing (HCN). This study focuses on publicly funded HCN services in northern BC. HCNs and patients alike value the therapeutic relationships that occur in this domain of nursing (Rapport et al., 2014; Strandås et al., 2019) which aligns with Northern Health values of person- and family-centred care (Northern Health, 2024c). Yet the organization and delivery of HCN work may not facilitate the operationalization of these values. System constraints such as staffing levels, heavy workload, time limitations, patient acuity and complexity, and demand for services (Strandås et al.) impact how patients receive care. This study seeks to understand the processes that coordinate how patients access HCN and how HCNs provide care so we may discover ways to better facilitate therapeutic relationships in HCN. An integrative literature review enhances understanding of the work of developing HCN-patient relationships, potential systemic barriers in the ways HCNs and patients engage, and how patients and HCNs work within these constraints, but gaps exist in what is currently known about the social organization of HCN within BC. Using an institutional ethnographic (IE) methodology, I gathered patient descriptions of everyday HCN work through interviews. Explications of these descriptions helped to answer the following question: in a time of transformation within the primary care system in northern BC, how do the institutional structures and systems coordinate everyday HCN work to develop nurse-patient relationships? 2 Study findings demonstrate that patients are aware of the workload and time constraints experienced by HCNs and engage in significant work to attempt to offset these challenges. Patients also carry forward prior healthcare experiences in ways that can impact how they relate with healthcare professionals and their care seeking behaviours. Patients describe ways HCNs maximize relational care within time limited visits in an apparent attempt to meet patients’ holistic care needs. HCN time needs to be valued and recognized at an institutional level so time allotments can account for not just the physical and mental needs of patients, but the emotional, social, and relational needs as well. To follow are several chapters that introduce and present the study. The literature review provides a conceptual framework for the current state of what is known about the topic, followed by a description of the approach and methodology taken in this study. The findings chapter presents a detailed description of the work involved in providing and receiving HCN services, from the perspectives of patients. Finally, the discussion chapter concludes with a deeper consideration of the descriptions of HCN work provided by participants. The daily work and ruling relations within HCN are explored, including how they relate to the standpoints presented in the current literature, as well as proposed research and practice implications. 3 Chapter One: Background Overview Home care nursing (HCN) in northern BC is a crucial part of the healthcare system. HCN entails professional healthcare services by registered or licensed practical nurses, providing nonemergency acute, chronic, palliative, and rehabilitative care to patients living at home and in community settings (Northern Health, 2024a). These services help promote independence, prevent or delay hospitalization, and keep people at home as long as possible (Northern Health, 2024a). HCNs and patients value the services provided and the relationships developed within HCN settings (Rapport et al., 2014; Strandås et al., 2019). However, systemic constraints can cause barriers and challenges. This study focuses on HCN-patient relationships in Northern Health from the perspective of patients, including the barriers within the systemic organization and coordination of HCN work. There is a systemic shift to cost-effectiveness, efficiency, and productivity within health care. A growing demand for HCN services (Gilmour, 2018b) and system constraints necessitating prioritizing certain types of care (Arnaert et al., 2009) leads to risks of patients’ relational care needs going unmet, with larger implications for health outcomes. The unique environment of HCN can create challenges and benefits in providing relational, patient-centred care and developing therapeutic HCN-patient relationships. HCNpatient relationships are valued by HCNs and patients (Rapport et al., 2014) but the patient experience and perspective are understudied. A greater understanding of how and whether relational needs of HCN patients are being met within a constrained system will help HCNs provide the best quality of care possible. Highlighting areas that need greater attention will facilitate improving HCN services. The structures and systems that organize patient and HCN work impact HCN-patient relationships. To understand these structures, it is crucial that the 4 history and context of the Canadian health care system be considered, with a focus on home and community care services. Study Context To follow is a discussion of the history of home and community care in Canada. This facilitates clarity of the services in northern BC and where and how they are situated within the Canadian healthcare system at a translocal level. A Recent History of Home and Community Care in Canada Home and community care is an important service in the Canadian healthcare system as part of primary health care. Canada invested heavily in primary health care from the early 2000s (see Figure 1). The Primary Health Care Transition Fund (PHCTF) (Health Canada, 2007) was established by the federal government in 2000 to support Canadian provinces and territories in developing and implementing primary health care initiatives. The fund was divided into five categories, including the Provincial-Territorial Envelope and the National Envelope. The Commission on the Future of health Care in Canada (2002), hereafter referred to as the Romanow Report, was commissioned in 2001 to make recommendations about how to improve the Canadian healthcare system and make it more sustainable. The Romanow Report recognized the value of and growing demand for home care services and proposed including home care services as part of the Canada Health Act (Health Canada, 2023). The report also proposed a Home Care Transfer to assist provinces and territories in developing services in these priority areas. 5 Figure 1: Timeline of Relevant Canadian Investments in Primary Health Care Access to the PHCTF allowed each province and territory to prioritize the issues most relevant to the unique needs of that region (Health Canada, 2007). With the Provincial-Territorial Envelope funding, BC prioritized PHCTF initiatives that supported family physicians in their care of priority populations. Initiatives included those aimed at improving health outcomes for patients with chronic conditions; professional development for family physicians; and implementing service frameworks to optimize care, such as the BC Nurse Line (Health Canada, 2007). Specific to home care, the National Envelope of the PHCTF included an initiative known as the National Home Care and Primary Health Care Partnership Initiative. This was implemented between 2003 and 2006, acknowledging that home care would be an important aspect of primary health care. This initiative had limitations, as it focused on case management, long-term chronic disease management, and initiation of interprofessional teams throughout BC, prioritizing the family physicians who would lead those teams (Health Canada, 2007). Home and community care remains an uninsured service under the Canada Health Act (Health Canada, 2023) and delivery and funding of home care services remains different between provinces and territories (Gilmour, 2018b). While these initiatives constituted significant investments in the Canadian healthcare system, home and community care is a large umbrella 6 encompassing many services. These investments were not sufficient to meet all the needs at the time, nor those to come with changing demographics. As such, significant gaps remain. The Canadian Community Health Survey is a national cross-sectional survey of Canadians over 12 years old. In the 2015-2016 data collection period, Canadians were asked to report formal home care services received by members of the household. Of those surveyed, 6.4% (or 881,800 households) reported a member of the household received some sort of formal home care service (Gilmour, 2018a). Of those, 49% received home health care services only and 19% received a combination of home health care and home support (Gilmour, 2018a). Home nursing care was the most frequently required service at 46% (Gilmour, 2018a). Of the respondents who needed home health care services in the past year, 35.4%, or just over one third, also reported having an unmet home care need (Gilmour, 2018b). Those who identified an unmet home health care need reported that the greatest barrier was service availability (28%) (Gilmour, 2018b). These statistics indicate that services provided do not fully meeting the needs of Canadians, pointing to a discrepancy between what is offered and what patients feel they need. Home and Community Care in Northern British Columbia Northern Health is responsible for delivering health care services to communities across northern BC, including acute care, mental health and addictions services, public health, and home and community care (Northern Health, 2019-2020). Northern Health serves around 300,000 people (Northern Health, 2019-2020), and spans a geographical area of almost 600,000 square kilometers (Northern Health, 2024b). Northern Health serves over two dozen communities, ranging in population size from a few hundred to the largest centre, with over 80,000 people (Northern Health, 2024b). 7 Total expenses for Northern Health’s 2019-2020 fiscal year were $947.0 million. Acute care leads the overall expenditure, while community services accounted for 24.3% of total expenses, or $229.8 million dollars (Northern Heath, 2019-2020). Community services include community care, mental health and substance use, and population health and wellness. Community care is further divided into additional separate sectors, meaning the funds are further divided between those departments. The umbrella of community care includes a wide range of services. Home care is one facet of community care, which provides the care patients need in the best setting, to “complement and supplement, but not replace” care individuals can provide for themselves or that they receive from family, friends, or other formal and informal community supports (Northern Health, 2024a, para. 1). There are two general types of home care services provided in Canada (see Table 1). Home health services are delivered by healthcare professionals, including HCN (Gilmour, 2018a). Home support services are provided by personal support workers or registered care aides (Gilmour, 2018a). While these roles often work together to support overall patient needs, they are distinct in the services they provide and level of training and scope of practice of the care providers. This study focuses on the home health service of HCN. Provided by Services offered Goal Services length Home Health Care Services Health care professionals (e.g., home care nurse) Professional services within patient home or community setting (e.g., wound care, IV antibiotics) Prevent hospital admission Faster hospital discharge Support patient to remain at home Avoid or delay residential care Short-term needs (e.g., surgery, illness, injury) Long-term needs (e.g., chronic conditions, aging, terminal illness, disability) Home Support Services Personal support workers (e.g., registered care aide) Activities of daily living (e.g., bathing, dressing, grooming, medication assistance) Prevent hospital admission Faster hospital discharge Support patient to remain at home Avoid or delay residential care Short-term needs (e.g., surgery, illness, injury) Long-term needs (e.g., chronic conditions, aging, terminal illness, disability) Table 1: Home Health Care vs. Home Support Services (Gilmour, 2018b; Gilmour, 2018a; Northern Health, 2024a) 8 Despite the importance of HCN in supporting patients to remain or return home, HCN remains a separate service and has not been fully integrated as part of the primary health care model. In reviewing publicly available texts on the Northern Health (2024c) website, HCNs are not listed as members of the healthcare teams described as supporting a patient’s total care in primary and community care services (Northern Health, 2024c). As such, though HCN is a critical service, it is organized outside of the primary health care model used by Northern Health. HCN is provided in a unique environment compared to other healthcare settings. In HCN most of the work is done autonomously, outside a clinical setting, with patients’ homes as the workplace. This creates distinct challenges and benefits, including with the experience of power (Giesbrecht et al., 2014). For instance, within hospital settings, nurses might enter a shared hospital room to provide patient care. In HCN, this care is provided while the HCN is a guest in a patient’s home. Some aspects of power may shift towards the patient within the home setting (Giesbrecht et al.), however, the organization continues to direct many aspects of services, shifting power back towards the HCN and organization. While there is some autonomy within home care service planning, much of the care is standardized at an organizational level. For instance, certain criteria must be met to initiate services, approve types of care tasks, and determine time allotted. In addition, some services change over time. Home support services at one time included meal preparation and light housework, both of which are no longer offered by Northern Health. Conversely, home intravenous (IV) therapy, such as delivery of IV antibiotics, has been added to the scope of HCNs. As demand changes and services evolve to meet needs, some patient-identified needs may go unmet within home care services to meet organizational priorities. 9 Meeting the Needs of Northern British Columbians Receiving Home and Community Care Demand for home health care services is multi-faceted. As the Canadian population ages (Canadian Institutes of Health Research [CIHR], 2019a; Gilmour, 2018b; Government of Canada, 2014) and chronic conditions and comorbidities become more prevalent (Gilmour, 2018b) demand continues to grow. The Government of Canada (2014) projected that from 2014 to 2030, Canadians aged 65 years or older will increase from 15.6% of the population (over 6 million) to 23% of the population (over 9.5 million). Statistics Canada (2020) found that 37.8% of Canadians aged 18 years or older have at least one underlying health condition, with numbers increasing with age. For those aged 18 to 59, 27.8% have at least one underlying health condition, while 72.1% of those aged 80 or older have an underlying health condition (Statistics Canada). These population demographics contribute to increased demand for home care services, and challenges meeting these demands are evident. Human resources and service capacity limitations mean HCN must prioritize what types of nursing care can be delivered within the community. With more acute and complex patients being discharged from the hospital to receive HCN services as they convalesce, prioritization of physical care needs may result in relational care needs going unmet. The Nurse-Patient Relationship in Home and Community Care Northern Health identifies person- and family-centred care as an important priority (Northern Health, 2024c). Person- and family-centred care occurs when care is provided in ways that work best for patients, using shared decision-making to identify patient preferences and needs (Brazil et al., 2011). Person- and family-centred care is an approach in which “healthcare providers come to know and understand the person’s life story, experience of health, the role of family in the person’s life, and the role they may play in supporting the person to achieve health” 10 (Registered Nurses’ Association of Ontario, 2015, p. 8). Developing nurse-patient relationships and coming to know patients is an important facilitator of patient-centred care. HCN-patient relationships are important to HCNs and patients (Adams et al., 2012; Carlson et al., 2014; Rapport et al., 2014) and have many benefits. However, therapeutic relationships require emotional labour (Arnaert et al., 2009), sufficient resources (Gantert et al., 2008), and willingness to engage (Gantert et al., 2009). Relational care is defined as “a humanely involved process of respectful, compassionate, and authentically interested inquiry into another’s (and one’s own) experiences” (Doane, 2002, p. 401). Relational care allows nurses to prioritize dignity and respect, know patients, identify strengths, and encourage stronger HCN-patient relationships (Eloranta et al., 2010; Gregory et al., 2017; Holmberg et al., 2012; Strandås et al., 2019). When relational care is impeded, this can have negative impacts (Hutchings et al., 2012; Rapport et al.; Strandås et al.). System constraints can make it difficult to develop and maintain these relationships to the degree often desired by HCNs and patients. HCN-patient relationships can be challenged when productivity and efficiency are prioritized (De Vliegher et al., 2011; Irani et al., 2018; Tourangeau et al., 2014). To increase efficiency in healthcare delivery, resources are allocated in ways intending to improve value in health care by closing the quality in care gaps. While efficiency is focused on sustainability, it risks relational nursing practice by diminishing patient-centred care. The efforts within the health care system to increase efficiency can result in organizational needs superseding other aspects of patient care, leaving patients vulnerable to negative impacts. It is crucial that external barriers to these relationships be identified and minimized to allow HCN-patient relationships to be fostered and patient-centred care to be provided. 11 I have worked as a HCN for approximately ten years, with many of those spent working in northern BC, I experienced increasing challenges with managing workload and time. I felt a push towards prioritizing acute, physical needs of patients in the limited time available, leaving less time for relational care. I heard similar challenges from colleagues and began to wonder how patients were experiencing these constraints. I wanted to know what was happening in the dayto-day work of receiving and providing HCN services, and how this was coordinated by the larger institution. A deeper exploration is needed regarding how the structures and systems coordinating HCN work impact the nurse-patient relationship from the patient perspective. Understanding how HCNs and patients navigate their day-to-day work within the system can highlight the ways work is organized at an institutional level. I will use an institutional ethnographic (IE) methodology, which focuses on the institutional processes themselves, to describe the structures and systems that organize everyday HCN work of those living and working in the setting. 12 Chapter Two: Integrative Review of the Literature I conducted an integrative literature review to gain an understanding of what is known about systemic factors that impact nurse-patient relationships in HCN. The literature review helped me understand my own positioning and standpoint as a clinician using an IE lens in the research setting (Campbell & Gregor, 2008). Some preliminary literature was reviewed for the research proposal, followed by a return to the literature for a more thorough review once data from the present study was gathered. The database search began spring of 2021, after interviews with participants for the present study. The search was re-run winter of 2023 to check for newly published citations. Initial analysis and writing of the literature review occurred after data collection was complete but before undertaking analysis of the findings from my own study. In keeping with an IE study, I considered the positioning and standpoint used in the literature as well as that of study participants and myself (Campbell & Gregor, 2008). An IE study holds that experiences presented in the literature may or may not align with those of the researcher and study participants (Campbell & Gregor). As such, I conducted this review with an understanding that participants in the present study may describe their experiences differently than those presented in the literature. I used methods described by Whittemore and Knafl (2005), which are well suited to examining complex concepts to find answers with “direct applicability to practice and policy” (Whittemore & Knafl, p. 546). While other methodologies prioritize evidence hierarchies, integrative reviews recognize different types of evidence add depth and breadth (Whittemore & Knafl). Integrative reviews combine experimental and non-experimental research with theoretical and empirical sources (Whittemore & Knafl). While a range of study methodologies are included, critical appraisal to assess quality is conducted to help determine inclusion. 13 Although this type of review is not typically done in IE, the methodology was selected to complement the IE study and add depth of knowledge both to the topic and my own positionality. Incorporating different types of sources allowed multiple standpoints to be considered, including patients, caregivers, front-line staff, management, and organizational. In exploring the information found in the literature, I used mapping to make connections between abstract themes and what the literature reported is occurring within HCN in Canada. This deep dive into the current state of HCN gathered from multiple perspectives could then be considered in relation to what individuals in my current study described from their unique standpoint. Whittemore and Knafl’s (2005) stepwise process guided my inquiry: (1) identify the purpose of the review, (2) develop a well-defined search strategy, (3) evaluate the data, (4) analyze the data, and (5) present the findings. To follow is a description of the steps taken and a discussion of the dominant discourses in the literature about HCN work and HCN-patient relationships. Identification of the Problem The research questions arose from my personal experiences as an HCN. I sought to explore the following questions within a HCN context: (1) what is the value of nurse-patient relationships; (2) what structures and systems are facilitators and barriers to nurse-patient relationships; and (3) when HCN-patient relationships are hindered, how are patients and nurses effected? Exploring these questions helped to frame what is already known about HCN-patient relationships from various standpoints, and what gaps exist that this study can help to fill. Developing a Search Strategy After outlining the questions, I developed a search strategy. I identified four key concepts: (1) the field of HCN; (2) organizational structures and systems impacting HCN work; 14 (3) nurse-patient relationships and quality of patient care; and (4) the geographical location of Canada. I consulted with the University of Northern British Columbia (UNBC) Health Sciences Librarian Dr. Trina Fyfe to assist with selecting databases, honing key words and search terms, and ensuring search methods were comprehensive and appropriate. Selection of Databases and Search Terms Databases included Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Web of Science, and Business Source Complete. The first three are commonly used in nursing research, while Business Source Complete was chosen to capture discussions of the business-orientation of healthcare. I used Medical Subject Headings (MeSH) terms, browse features, and suggested terms to discover database-specific phrases; tree views and scope notes to review definitions; and exploded terms to maximize reach. To avoid discrepancies and ensure consistency, while meeting database-specific language, I completed the search in one database at a time. Any newly identified keywords were added to the overall search strategy. The final search included the same keywords for each database (See Appendix A). I used Boolean operators to link keywords into core concepts and link concepts together. Inclusion and Exclusion Criteria Sources were included if they discussed Canadian home and community care, addressed an aspect of nurse-patient relationships, and were from 2005 onward. I applied inclusion and exclusion criteria at each stage of screening (see Table 2). Northern Health HCN does not offer these specialized services, though in some cases they might be offered by other teams The focus on interactions between preceptors and student nurses was not relevant Experiences of nurses who are not in regular contact with patients was not relevant Relationships between informal caregivers and patients was not relevant. Relationships between nurses, patients and family caregivers were relevant and included in the review Translation services were not financially feasible for this graduate-level thesis There is potential risk of including data that has not been verified or corroborated Rationale Challenges in these environments may differ from home and community care The relationship of interest in this study was that between patients and nurses Rationale Community health care services have been implemented at different paces and extents internationally. Literature specific to BC was limited so a Canadian context was used Home health care is a unique work environment and context Aspects related to nurse-patient relationships (e.g., continuity, time with patients, patient satisfaction) were of interest, even if the relationships were not the central focus A variety of sources allows more comprehensive evaluation (Whittemore & Knafl, 2005) Sources focusing on development of measurement tools were excluded, but follow-up studies in which tools were used were included Published prior to 2005 The PHCTF ended in 2006 and marked a shift in Canadian health care in which primary health and home health received renewed focus Table 2: Integrative Literature Review Inclusion and Exclusion Criteria Home and community care Addressed aspects of the nurse-patient relationship Qualitative, quantitative, and mixedmethods studies; literature reviews; guidelines Exclusion Criteria Residential care and acute care Health care providers other than RNs (e.g., care aides, primary care providers) Specialized teams (e.g., post-partum home care, dialysis) Preceptors and students Non-front-line staff Informal caregivers (e.g., family) and patients Sources which were not in English Not peer reviewed; opinion or anecdotally based Tool development Inclusion Criteria Canadian context 15 16 Conducting the Search The initial search was conducted in April 2021 and identified 321 citations, including hand searches and reference tracking (see Figure 2). I completed full-text review on 101 citations, with 29 moving on to data extraction. I removed 8 sources during data extraction, including sources with only passing reference to HCN, focusing on long term care or home support, insufficient discussion of nurse-patient relationships, or opinion-based. Twenty-one sources were included. In December 2023 I re-ran the search, identifying 25 citations published between April 2021 and December 2023. Eleven sources came from CINAHL, one from MEDLINE, two from Web of Science, and 11 from Business Source Complete. Twenty citations were removed during the title and abstract screen and four during full text screen, for reasons outlined above. One source (Giosa et al., 2022) met inclusion criteria and was integrated into the literature review, bringing the total to 22 citations. CINAHL Apr. 22, 2021 56 Citations Dec. 2023 11 Citations Medline Ovid Apr. 22, 2021 171 Citations Dec. 2023 1 Citation Business Source Complete Apr. 22, 2021 47 Citations Dec. 2023 11 Citations Web of Science Apr. 22, 2021 26 Citations Dec. 2023 2 Citations Hand Searching Apr. 22, 2021 21 Citations 346 Citations Screened Remove Duplicates 24 Removed 322 Citations Remove before 2005 89 Removed 233 Citations Title and Abstract Screen 127 Removed 106 Citations Full Text Screen 76 Removed 30 Citations Data Extraction 8 Removed 22 Sources Included Figure 2: Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Diagram 17 Evaluating the Data: Quality Appraisal and Sources Included Whittemore and Knafl (2005) do not provide specific quality criteria. I reviewed each article for methodological quality and value. I used The Joanna Briggs Institute (JBI) (2017) Critical Appraisal Checklist for Analytical Cross-Sectional Studies, the JBI Critical Appraisal Checklist for Text and Opinion Papers for the best practice framework, Critical Appraisal Skills Programme (CASP) (2018) tools to evaluate the qualitative studies and literature review, and the Mixed Methods Appraisal Tool (Hong et al., 2018) for the mixed methods studies. Though some of the citations had missing criteria, overall quality was moderate to good, and no sources were removed due to quality. The final sample is outlined in Table 3. It included qualitative, quantitative, and mixed methods studies, a scoping literature review, and a best practice framework. Of the 22 sources, 11 focused solely on the HCN and/or leadership perspective, and three did not have a specific population. The remaining eight incorporated patient perspectives, with four focusing on a combination of HCNs, patients, and/or caregivers and four focusing solely on the patient and/or caregiver perspective. Analyzing the Literature: Abstraction and Synthesis Analysis of an integrative literature review can be challenging due to the use of diverse sources (Whittemore & Knafl, 2005). As such, clearly explicated and systematic analytical methods are applied. I used methods described by Attride-Stirling (2001) to cluster information into basic themes, then organizing themes, and finally global themes, making up thematic networks (see Table 4). Location Ontario Unclear Ontario Ontario Ontario Quebec Ontario Western Canada Western Canada Source ArmstrongStassen et al., 2005 Brown et al., 2006 Doran et al., 2007 Oudshoorn et al., 2007 Gantert et al., 2008 Arnaert et al., 2009 Gantert et al., 2009 Funk & Stajduhar, 2011 Penz et al., 2011 Qualitative; constructivist grounded theory Qualitative; ethnographic Qualitative; interpretive phenomenology Qualitative; interviews and focus group Qualitative; secondary analysis of ethnographic longitudinal study Qualitative; interpretive phenomenology Quantitative; crosssectional Qualitative; interpretive phenomenology Methodology Mixed methods; crosssectional descriptive field study Aim Identify CHN concerns and factors impacting job satisfaction and intention to remain employed in the field Explore nurses’ experiences and inform future efforts after a client-empowering partnering approach was implemented Investigate impact of managed competition on quality of nursing work, life, job satisfaction, and job security Examine client-nurse relationships and power in community-based palliative care Explore perceptions of senior clients about relationships with those providing care in the home Explore HCN attitudes to palliative care in rural communities Explore family caregiver perceptions of relationshipbuilding with in-home care providers Explore family caregiver accounts of relationships with HCNs when caring for dying family members at home Explore experience of hope with RNs who provide palliative care in community settings Palliative Palliative General Palliative General Palliative General General Care Type General HCN ICG ICG HCN HCN/P HCN/P HCN HCN Population HCN 18 Canada Western Canada Ontario Quebec BC Ontario Ontario Canada Schofield et al., 2011 Stajduhar et al., 2011 Brazil et al., 2012 Marchessault et al., 2012 Giesbrecht et al., 2014 Gray et al., 2014 Tourangeau et al., 2014 CHCA et al., 2016 Framework/national action plan Qualitative; exploratory descriptive Qualitative; secondary analysis of ethnographic study Qualitative; environmental scan, document analysis, interviews Qualitative; Heideggerian interpretive phenomenology Quantitative; crosssectional Qualitative; ethnographic Qualitative description; action-oriented Identify priority issues and recommendations for community nursing related to education, practice, research, and policy Examine how HCN-caregiver relationships and beliefs about relationships mediate or intersect with access to services Evaluate the patient-centredness of community palliative care from the perspective of family members Explore and describe practices and experiences of nonspecialized, generalist HCNs providing palliative care Explore how the place of home influences language, centering the unique context of the home Classify and examine accountability instruments in home and community care agencies to understand why tools are chosen and the policy tradeoffs associated with these choices Identify factors influencing HCN intention to remain employed in their current role to develop a conceptual model Advance home care as a priority for all Canadians; recommend actions and measurable General General General General Palliative Palliative General General Not applicable HCN Not applicable HCN/P/ICG HCN ICG HCN CHN/L 19 Ontario Ontario Canada Tourangeau et al., 2017 Woo et al., 2017 Ganann et al., 2019 Qualitative, Solutionfocused approach, semistructured interviews Scoping review Qualitative; descriptive Quantitative; crosssectional phase of larger mixed methods study Mixed methods: survey, focus groups, interviews General General Wound Care General General P/IC Not applicable IDT/HCN/ L/P HCN HCN/L Population Key: CHN = community health nurses (home care, public health, parish, occupational health, community mental health, street nursing) HCN = home care nurses IC = informal caregivers IDT = interdisciplinary care team members (physiotherapy, occupational therapy, nurse practitioner, family physician) L = leadership, management, coordinators, supervisors, advanced practice specialists, directors P = patients Table 3: Integrative Literature Review Sample Summary Giosa et al., 2022 Ontario Manitoba Klaasen et al., 2016 indicators with specific federal, provincial, and territorial considerations Discuss findings from a review of a new nursing care delivery model 9 months post-launch Test hypothesized model determining factors related to HCN intention to remain employed with current organization Explore patient and clinician perceptions and experiences of wound care by HCNs alone or by multidisciplinary teams Map existing Canadian literature examining factors that influence HCN optimization Understand how goal setting in home care can be re-oriented around patient goals, needs, and preferences of patients 20 Organizing Themes 1. Business models in health care result in prioritizing efficiency and productivity 2. Healthcare systems tend to focus on process measures despite the value of outcome measures 5. The healthcare system is based on an expert/hierarchical model (Brown et al., 2006; 3. Traditionally Oudshoorn et al., 2007; Gantert et al., 2008; Gantert et al., 2009; Giesbrecht et al., hierarchical systems 2014; Giosa et al., 2022) have skewed power 6. HCNs sharing “power with” patients is more conducive to relationships than dynamics “power over” (Brown et al., 2006; Oudshoorn et al., 2007; Gantert et al., 2008; Gantert et al., 2009; Stajduhar et al., 2011; Brazil et al., 2012; Marchessault et al., 2012; Giesbrecht et al., 2014; CHCA et al., 2016; Giosa et al., 2022) 7. HCNs may enact power over patients (Brown et al., 2006; Oudshoorn et al., 2007; 4. Patient and HCN Gantert et al., 2009; Penz & Duggleby, 2011; Stajduhar et al., 2011; Brazil et al., experiences and use 2012; Marchessault et al., 2012; Giesbrecht et al., 2014; CHCA et al., 2016; Giosa of power can impact et al., 2022) relationships 8. Patients may reclaim power in ways that conflict with relationships (ArmstrongStassen et al., 2005; Oudshoorn et al., 2007; Funk and Stajduhar, 2011; Schofield et al., 2011; Giesbrecht et al., 2014; Ganann et al., 2019) 9. Both patients and HCNs experience and display power and powerlessness (Oudshoorn et al., 2007; Funk & Stajduhar, 2011; Penz & Duggleby, 2011; Stajduhar et al., 2011; Marchessault et al., 2012; CHCA et al., 2016; Woo et al., 2017) 10. Nurses want to provide high quality care (Armstrong-Stassen et al., 2005; Brown et 5. Nurses knowing al., 2006; Doran et al., 2007; Arnaert et al., 2009; Penz & Duggleby, 2011; patients helps them Schofield et al., 2011; Stajduhar et al., 2011; Marchessault et al., 2012; Tourangeau to provide optimal et al., 2017) care Basic Themes 1. The healthcare system is influenced by business models, budgets, and financial constraints (Armstrong-Stassen et al., 2005; Brown et al., 2006; Schofield et al., 2011; Gray et al., 2014; CHCA et al., 2016; Ganann et al., 2019) 2. Efficiency and productivity are a priority in the healthcare system (Doran et al., 2007; Oudshoorn et al., 2007; Stajduhar et al., 2011; Ganann et al., 2019) 3. Process and outcome measurements are important to collect (Brazil et al., 2012; Gray et al., 2014; Woo et al., 2017) 4. Process measures are often the focus in health care (Gray et al., 2014; CHCA et al., 2016; Ganann et al., 2019) 2. Relationships must be actively constructed and cultivated for Global Themes 1. Hierarchical health care models prioritizing efficiency and productivity may not be conducive to relationship development and maintenance 21 11. Understanding context allows nurses to know patients and provide better care (Funk & Stajduhar, 2011; Stajduhar et al., 2011; CHCA et al., 2016; Woo et al., 2017; Giosa et al., 2022) 12. Negative or absent relationships decrease perceived care quality (Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011; Tourangeau et al., 2014; Woo et al., 2017) 13. Positive relationships and care quality seem to be related (Arnaert et al., 2009; Funk & Stajduhar, 2011; Penz & Duggleby, 2011; Stajduhar et al., 2011; Marchessault et al., 2012; Giesbrecht et al., 2014; Tourangeau et al., 2014; Woo et al., 2017; Giosa et al., 2022) 14. Relationships require emotional labour (Brown et al., 2006; Gantert et al., 2008; Arnaert et al., 2009; Gantert et al., 2009; Funk & Stajduhar, 2011; Penz & Duggleby, 2011; Stajduhar et al., 2011; Brazil et al., 2012; Giesbrecht et al., 2014; Woo et al., 2017; Giosa et al., 2022) 15. Relationships require time and physical presence (Armstrong-Stassen et al., 2005; Brown et al., 2006; Doran et al., 2007; Oudshoorn et al., 2007; Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011; Stajduhar et al., 2011; Brazil et al., 2012; Klaasen et al., 2016; Woo et al., 2017) 16. Emotional and enacted caring impacts relationships (Brown et al., 2006; Gantert et al., 2008; Funk & Stajduhar, 2011; Penz & Duggleby, 2011; Stajduhar et al., 2011; Marchessault et al., 2012; Woo et al., 2017) 17. Continuity and communication contribute to relationships (Oudshoorn et al., 2007; Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011; Penz & Duggleby, 2011; Stajduhar et al., 2011; Brazil et al., 2012; Marchessault et al., 2012; Giesbrecht et al., 2014; Tourangeau et al., 2014; CHCA et al., 2016; Klaasen et al., 2016; Tourangeau et al., 2017; Woo et al., 2017; Ganann et al., 2019; Giosa et al., 2022) 18. Mutual respect and trust are important to relationships (Penz & Duggleby, 2011; Stajduhar et al., 2011; Brazil et al., 2012; Marchessault et al., 2012; Giesbrecht et al., 2014; Giosa et al., 2022) 19. Being known contributes to relationships (Oudshoorn et al., 2007; Gantert et al., 2008; Funk & Stajduhar, 2011; Stajduhar et al., 2011; CHCA et al., 2016; Woo et al., 2017; Giosa et al., 2022) 8. There are intrinsic and extrinsic facilitators and barriers to relationships 7. Building and maintaining relationships involves work 6. Relationships impact care quality optimal care to occur 22 20. Patients must be open to relationships (Oudshoorn et al., 2007; Gantert et al., 2008; Gantert et al., 2009) 21. Patients engage in work to develop/maintain relationships (Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011; Ganann et al., 2019) 22. Patients may self-monitor or change their behaviour to enhance or protect relationships (Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011; Giesbrecht et al., 2014) 23. Heavy caseloads, inadequate staffing, and high acuity lead to time constraints (Armstrong-Stassen et al., 2005; Brown et al., 2006; Doran et al., 2007; Gantert et al., 2008; Arnaert et al., 2009; Schofield et al., 2011; Stajduhar et al., 2011; Tourangeau et al., 2014; CHCA et al., 2016; Klaasen et al., 2016; Woo et al., 2017; Ganann et al., 2019) 24. Time constraints lead to prioritization of physical/task-based care needs and less time for relational care (Oudshoorn et al., 2007; Arnaert et al., 2009; Funk & Stajduhar, 2011; Schofield et al., 2011; Stajduhar et al., 2011; Tourangeau et al., 2014; Klaasen et al., 2016; Woo et al., 2017; Ganann et al., 2019) 25. The home environment comes with unique challenges (Penz & Duggleby, 2011; Giesbrecht et al., 2014; Tourangeau et al., 2014; Ganann et al., 2019; Giosa et al., 2022) 26. The home environment can be a more comfortable location for care (Funk & Stajduhar, 2011; Giesbrecht et al., 2014; Tourangeau et al., 2014; CHCA et al., 2016; Woo et al., 2017) 27. The home environment allows understanding of context (Brown et al., 2006; Penz & Duggleby, 2011; Giesbrecht et al., 2014; Tourangeau et al., 2014; CHCA et al., 2016; Woo et al., 2017; Giosa et al., 2022) Table 4: Thematic Networks (Attride-Stirling, 2001) 11. Care in the home is conducive to relationships 10. Systemic challenges impact relationships 9. Patients take an active role in relationship building/maintenance 3. The environment and context matter in relationship development and maintenance 23 24 Thematic Networks Thematic networks are tools used to analyze textual data (Attride-Stirling, 2001). Textual data is methodically organized to identify explicit structures and implicit patterns to form an insightful and rich analysis. A basic theme is a simple statement or premise which, on its own, does not contribute significantly to the analysis. Organizing themes are middle-range clusters of related basic themes which say something more significant. Global themes are super-ordinate themes which tell a larger story, make claims, and provide interpretation (Attride-Stirling). One thematic network is comprised of a global theme broken down into multiple organizing themes, each further broken down into basic themes. An analysis can contain multiple thematic networks. Conceptualizing the Themes. I analyzed the texts using a literature review matrix (Appendix B). I organized the data into manageable segments, looking for recurrent issues, topics, or words that arose across multiple sources. I reread the original texts and matrix notes and highlighted keywords which I drafted into a concept map, providing a visual aid. AttrideStirling (2001) instructs that basic themes must be specific and non-repetitive, but broad enough to capture multiple textual data segments. Once the thematic networks were grouped in a clear, coherent way, I verified and refined the networks by returning to the sources to ensure they were supported. The addition of Giosa et al. (2022) from re-running the database search in 2023 did not elicit any new basic themes that were relevant to the questions being asked, but did add to the discussion and align with the experiences described in other citations included in this review. Presentation of Literature Review Findings Three global themes were identified: (1) hierarchical health care models that prioritize efficiency and productivity may not be conducive to HCN-patient relationships, (2) HCN-patient 25 relationships must be actively constructed and tended to for optimal caring to occur, and (3) the environment and context matter in HCN-patient relationships. Hierarchy, Efficiency, and Productivity: Where do Relationships fit? The first global theme asserts that hierarchical health care models and a focus on efficiency and productivity may negatively impact HCN-patient relationships. Four organizing themes make up the global theme: (1) business models in health care result in prioritizing efficiency and productivity; (2) healthcare system measures focus on process measures; (3) traditionally hierarchical systems have skewed power dynamics; and (4) patient and HCN experiences and use of power can impact relationships. Separately, the organizing themes are distinct abstract principles, but together they provide a map of connections to describe the whole. Business Models in Health Care: Prioritizing Efficiency and Productivity. The healthcare system is influenced by business models, budgets, and financial constraints (Armstrong-Stassen et al., 2005; Brown et al., 2006; Schofield et al., 2011; Gray et al., 2014) which frequently result in prioritization of efficiency and productivity (Doran et al., 2007; Oudshoorn et al., 2007; Ganann et al., 2019). Prioritizing efficiency and productivity can cause challenges such as decreasing time and frequency of visits and difficulty providing continuity (Stajduhar et al., 2011). When care is limited or constrained, informal caregivers may experience burnout and moral distress, and patients may be hospitalized due to insufficient resources (Canadian Home Care Association [CHCA] et al., 2016). Though the healthcare system can have multiple visions or goals, these are not equally prioritized or incentivised at a system level. One 26 way this social organization can be made visible is through examining the ways organizations evaluate and measure services. Healthcare System Measures: Process Measures vs. Outcome Measures. The measures collected communicate what is important to and prioritized by an organization (Gray et al., 2014). Measures can be driven by financial accountability to demonstrate value for funds spent or by political accountability and transparency to maintain public trust (Gray et al.). For effective, sustainable health care, both process and outcome measures are needed. Process measures, such as access to services and types of services delivered, are easy to measure and quantify (Gray et al.). Outcome measures are also important (Gray et al.; Woo et al., 2017) but are more difficult to measure, including factors such as patient satisfaction, care quality, or if patient-identified needs are met (Brazil et al., 2012; Gray et al.). Process measures can improve care quality but also take time away from patient care, can discourage creative ideas, and may not account for context (Gray et al.). For instance, staffing levels might make it challenging to accept new referrals in a timely manner, while meeting goals for accepting referrals might make it difficult to provide continuity to admitted patients. When process measures are prioritized to the exclusion of outcome measures, important aspects of care can be missed (Gray et al., 2014). Outcome measures should be met and reported to inform planning and delivery so that performance and capacity can be improved (CHCA et al., 2016) and HCN services optimized (Ganann et al., 2019). No sources specified how to overcome challenges collecting outcome measures, highlighting a gap in organizational priorities. If outcome data is not captured, information gaps can occur that could otherwise demonstrate value of certain services, potentially impacting allocation of funds (Gray et al.). Thus, the measures 27 chosen by organizations are an important aspect of understanding what is prioritized and how everyday work is socially organized at an institutional level. Hierarchical Systems and Power Dynamics. The healthcare system is historically based on a hierarchical expert model, much of which remains in practice. HCNs and patients largely perceive HCNs to be the experts within HCN-patient relationships (Brown et al., 2006; Gantert et al., 2009). There is a drive towards a more partnered approach, but typically providers direct care (Brown et al.; Gantert et al., 2009; Giesbrecht et al., 2014). Health care providers in turn are guided by organizational structures and regulations (Oudshoorn et al., 2007). Patients may respond negatively to paternalistic approaches (Gantert et al., 2008; Giosa et al., 2022) so finding ways to work together is crucial for HCN-patient relationships. Whether power is shared in HCN-patient relationships impacts patients and HCNs. HCNs can partner with patients to achieve optimal health (Brown et al., 2006; Gantert et al., 2009; CHCA et al., 2016, Giosa et al., 2022). An important aspect of power dynamics in HCN-patient relationships is whether HCNs and patients engage in shared decision-making (Oudshoorn et al., 2007; Stajduhar et al., 2011; Marchessault et al., 2012). Shared decision-making affects overall quality of care (CHCA et al.), but patients and caregivers report that joint decision-making or goal setting does not always occur in practice (Brazil et al., 2012; Giosa et al.) Using a team approach to decision-making, rather than dictating what patients need to do, helps patients feel empowered (Giesbrecht et al., 2014; Giosa et al.). Exerting power-over patients rather than using a power-with approach does not align with the professional values of nursing (Brown et al.). Rather, equitable relationships can be achieved by balancing the needs, expectations, and contributions of both HCNs and patients (Gantert et al., 2008). In Brown et al.’s study, nurses describe implementing a partnered approach, working with patients rather than simply treating 28 them. This enhances HCN and patient abilities to reach full potential in the relationship (Brown et al.). However, it does not always occur in practice. Patient and HCN Experiences and Use of Power: Impacts on Relationships. There is potential for domination or liberation in HCN-patient relationships (Oudshoorn et al., 2007). Nurses’ power is primarily of position and educational status (Oudshoorn et al.) which can result in nurses engaging in behaviours that contribute to patient powerlessness. Power can be enacted through language, such as using the phrase “my patients” which can imply ownership (Oudshoorn et al.). Bypassing patients to gather information from family members, providing positive reinforcement only when decisions align with the HCN’s view (Oudshoorn et al.), and not sharing decision-making (Brazil et al., 2012) are examples demonstrating the positional power HCNs can have over patients. Sometimes this is with positive intentions, such as HCNs in Brown et al.’s (2006) study who were concerned about burdening patients with a patient-drive care model. Other times, power-over dynamics may be more intentional, such as some of the HCNs in Brown et al.’s study perceiving patient-driven care as giving up professional power, rather than sharing it. Though the HCN role comes with some authority as the so-called expert, family caregivers in Gantert et al.’s (2009) study described a need for this must be balanced with consideration of the contributions, needs, and expectations of patients and families (Gantert et al., 2009). Shifting language from telling patients what to do to finding ways to get on the same side (Giesbrecht et al., 2014), offering choices, and including patients and caregivers in goal setting (Giosa et al., 2022) facilitates shared decisions-making. Shared decision-making can result in patients being more engaged in care plans (Stajduhar et al., 2011) and patient-centred, partnered care can increase patient autonomy, self-sufficiency, and foster patient strengths 29 (CHCA et al., 2016). When HCN and patient views do not align, they must find and accept common ground (Penz and Duggleby, 2011; Marchessault et al., 2012). In community settings, patients and informal caregivers – family and friends who provide some type of unpaid support – must be actively engaged in patients’ care. In these settings it is especially crucial that patient priorities, capacity, and preferences are included and that they have opportunities to direct their care (Giosa et al.). When HCNs and patients are not willing or able to share power, HCN-patient relationships are impacted. Patients may experience and enact power in ways that negatively impact HCN-patient relationships. Schofield et al. (2011) reference the positional power of HCNs to be a “voice for the voiceless” (p. 1060), implying patients hold the less powerful position of the voiceless. Patients’ power comes primarily from personal power (Oudshoorn et al., 2007). While they have little control over aspects of care such as time or continuity, they can control how they engage (Funk & Stajduhar, 2011). Patients may respond with passivity or resistance when experiencing domination in HCN-patient relationships (Oudshoorn et al.). Giesbrecht et al. (2014) reference the unique power of patients when care is provided in the home, as they hold the role of host inviting HCNs in as guests. This power is conditional, however, as HCNs still largely direct care. Patients may enact personal power through resisting services, refusing visits, or requesting service changes (Oudshoorn et al.). Nurses identified that dealing with patient and family behaviours can be challenging (Armstrong-Stassen et al., 2005; Ganann et al., 2019) and patients may have high standards for healthcare services, including a preference to remain at home and expectation for accessible, personalized, and individualized care (Schofield et al.). When expectations do not match perceived reality from either side, this may cause tension in a relationship. 30 Both HCNs and patients experience powerlessness within the healthcare system. HCNs’ professional autonomy regarding practice and care tasks is confined within the regulations of the healthcare system (Oudshoorn et al., 2007; Penz & Duggleby, 2011). This confinement can lead to helplessness and passive acceptance of a lack of systemic power (Penz & Duggleby). HCNs feel a sense of powerlessness when systemic constraints limit the services and care that can be provided (Oudshoorn et al.) or when care does not go how they expect or hope (Marchessault et al., 2012). Challenges stemming from resource constraints may contribute to HCNs’ need for boundaries within relationships as a way of coping (Stajduhar et al., 2011). Feelings of powerlessness may manifest in the ways patients engage in HCN-patient relationships (Oudshoorn et al., 2007; Funk & Stajduhar, 2011). Patients may feel resigned or passive (Oudshoorn et al.), isolated if concerns are disregarded (Woo et al., 2017), or experience moral dilemmas or distress for family caregivers if services are insufficient to support them in meeting their loved one’s needs at home. (CHCA et al., 2016). Recognizing and acting upon power imbalances has potential to improve quality of care and HCN-patient relationships, but if both HCNs and patients experience powerlessness, this can be challenging to reconcile. Construction and Cultivation of Relationships: The Impact on Care Quality The second global theme is that relationships must be actively constructed and cultivated for optimal care to occur. There are five organizing themes: (1) HCNs knowing patients helps them to provide optimal care; (2) HCN-patient relationships impact care quality; (3) building and maintaining relationships involves work; (4) there are intrinsic and extrinsic facilitators and barriers to HCN-patient relationships; and (5) patients must take an active role in relationships. How Knowing the Patient Leads to Better Home Care. HCNs report significant internal rewards in their work, including pride (Armstrong-Stassen et al., 2005), value and 31 enjoyment of relationships (Penz & Duggleby, 2011; Stajduhar et al., 2011), and confidence in their ability to provide care and comfort (Doran et al., 2007; Arnaert et al., 2009; Marchessault et al., 2012). HCNs want to go beyond physical care to provide holistic care (Arnaert et al.) and when they can provide high quality care, including meeting relational needs, HCNs describe receiving benefits back from patients that strengthens their commitment (Penz & Duggleby). Systemic constraints can impact the type or quality of care provided, which negatively impacts HCNs (Brown et al., 2006; Doran et al.; Penz & Duggleby). Organizational constraints can leave HCNs unable to make the differences they want for patients (Penz & Duggleby) and less able to provide holistic care (Schofield et al., 2011). Decreasing services or time per visit can result in HCNs feeling the loss of relational care in their work (Brown et al.). HCNs reported decreased job satisfaction when quality of care was less than optimal (Doran et al.; Tourangeau et al., 2017). These findings point to the value HCNs place on providing care that feels fulfilling and meets the needs of patients. Knowing patients’ contexts is key to providing optimal care. Patients and families want to be known beyond medical information, to include capacity, personality, traits, concerns, goals, preferences, family dynamics, and ability (Funk & Stajduhar, 2011; Giosa et al., 2022). Patients value when HCNs take time to understand their situations and show empathy (Woo et al., 2017). When HCNs take time to work with patients and schedule care around patients’ lives, care feels more coordinated (Woo et al.). HCNs who understand patients’ needs and capacity can better plan and justify frequency and type of care, thereby impacting patient access to appropriate care (Stajduhar et al., 2011). Optimal HCN services should include clinical expertise and evidencebased practice, incorporate patient experiences, and be personalized (CHCA et al., 2016). When care takes individual needs, history, capabilities, and goals into account, this demonstrates HCNs 32 are working with patients rather than trying to fit them into standardized systems (Giosa et al.). However, without adequate time, personalized care may not be consistently provided. The Impact of Relationships on Care Quality. HCN-patient relationships impact care experiences. When Funk and Stajduhar (2011) asked patients and caregivers to describe the quality of their relationships, they often focused on whether their needs were met and the quality of the HCNs’ work. However, patients want HCNs to attend to their holistic needs, and when they perceive the focus of care to be solely on practical tasks, they see the nurses as abrasive or uncaring (Funk & Stajduhar). Patients with ongoing needs sometimes feel like a burden and experience frustration, powerlessness, and apprehension, which is exacerbated when providers engage in ways that do not feel helpful or positive (Woo et al., 2017). When continuity in patient assignment is constrained, HCNs describe this as upsetting to patients and nurses and creating challenges in providing care (Tourangeau et al., 2014). Patients experience frustrations when seen by HCNs who do not know them (Gantert et al., 2008; Gantert et al., 2009) demonstrating that relationships and knowing one another is an important aspect of HCN. Positive HCN-patient relationships benefit patients and HCNs. They provide comfort and support, help people feel at ease (Arnaert et al., 2009; Marchessault et al., 2012; Giosa et al., 2022), and decrease adverse events and suffering (Arnaert et al.). Therapeutic relationships help HCNs meet holistic patient needs (Penz & Duggleby, 2011; Giosa et al.) and improve quality of care (Funk & Stajduhar, 2011; Tourangeau et al., 2014). Relationships can facilitate more accurate patient assessments and appropriate care plan development (Stajduhar et al., 2011) allowing HCNs to be responsive to patient needs and provide individualized care (Funk & Stajduhar; Stajduhar et al.; Giesbrecht et al., 2014; Giosa et al.). When patients trust HCNs, their access to health care improves as they may be more likely to call when needed (Stajduhar et al.) 33 and share personal information (Stajduhar et al.; Giesbrecht et al.). Good rapport enhances HCNs knowledge to justify what is needed, clarify jargon (Giesbrecht et al.), and increase patient understanding (Arnaert et al.; Giesbrecht et al.; Woo et al, 2017). Trusting HCN-patient relationships can lead to improved HCN retention (Tourangeau et al., 2014), more positive interactions, greater knowledge of patient needs and strengths, and better patient outcomes (Stajduhar et al.). However, building and maintaining relationships takes work. The Work of Building and Maintaining Relationships. HCN-patient relationships require emotional labour (Gantert et al., 2008; Arnaert et al., 2009) which is often invisible, easily overlooked (Gantert et al., 2008), draining, and may lead to HCN burnout (Brown et al., 2006; Arnaert et al.). Patients in Woo et al.’s (2017) study referred to relationships with the HCNs as the most beneficial aspect of their care, describing them as “caring”, “empathetic”, “friendly”, “vigilant”, “cheerful”, “gentle”, “knowledgeable”, “supportive”, having a “good sense of humour”, and showing “genuine interest” (p. S8). Relational work requires openminded and empathetic exchanges (Penz & Duggleby, 2011; Stajduhar et al., 2011), listening, being responsive to patient wishes, optimizing patient abilities (Brazil et al., 2012; Giosa et al., 2022), and sharing details about oneself (Funk & Stajduhar, 2011; Stajduhar et al.; Giesbrecht et al., 2014; Giosa et al.) as patients may feel more comfortable opening up when HCNs are also willing to share personal information (Gantert et al, 2008; Gantert et al., 2009; Stajduhar et al.). When HCNs show an interest in patients, patients feel seen and relationships are facilitated (Gantert et al., 2009). The significant labour of relational care requires sufficient time and resources. Quality time and physical presence facilitate HCN-patient relationships. Time allocations for length and frequency of visits have decreased (Doran et al., 2007; Oudshoorn et al., 2007). 34 Patients and HCNs are not always satisfied with the time available for patient care (Doran et al.; Klaasen et al., 2016; Woo et al., 2017). When systemic changes or service cuts result in less time per visit, this may mean care is rushed or physical care is prioritized over relational care (Stajduhar et al., 2011). HCNs having limited time can have negative impacts on relationships (Oudshoorn et al.; Gantert et al., 2008; Funk & Stajduhar, 2011). Patients rate their care more highly when HCNs are able to give them time to do what they can for themselves (Brazil et al., 2012) and Oudshoorn et al. found patients were less open to relationships when HCNs had limited time with them. In fact, investing extra time in visits early in relationships may allow visit frequency and time to decrease once baseline relationships are formed (Stajduhar et al.). HCNs often take on the strain of patient reactions to higher level service decisions (ArmstrongStassen et al., 2005) while also navigating their own feelings about impeded HCN-patient relationships (Brown et al., 2006). These findings demonstrate the impact systemic constraints can have on individual relationships. HCNs and patients demonstrate caring within relationships. Caring can include caring for patients through meeting physical needs and caring about patients on an emotional level (Funk & Stajduhar, 2011). Caring is a central presence in HCN-patient relationships (Brown et al., 2006). HCNs report feeling fulfilled professionally when they provide quality care while connecting with patients (Penz & Duggleby, 2011) and describe genuine affection for the people they serve (Marchessault et al., 2012). HCNs engage in caring through demonstrating competence and knowledge, building trust, ensuring patient comfort, sharing emotional connections (Funk & Stajduhar; Penz & Duggleby; Woo et al., 2017), and acts of affection, familiarity, and closeness (Funk & Stajduhar). Informal caregivers want their loved ones cared for in a way that displays respect (Funk & Stajduhar). They appreciate HCNs who prioritize 35 patient needs, make patients feel comfortable, and make visits enjoyable (Funk & Stajduhar). Patients want to connect with and feel important to HCNs (Gantert et al., 2008; Funk & Stajduhar) and make efforts to demonstrate caring and friendship for the HCNs (Gantert et al., 2008). Feeling well cared for and being known often go hand in hand for patients (Stajduhar et al., 2011), however there are additional factors that can impede developing therapeutic relationships. Factors Impacting Relationships. Several factors can facilitate or impede HCN-patient relationships, including having a regular team of people who know the patient and effective communication. This ensures smooth, coordinated care rather than fragmentation, and is otherwise known as continuity (Haggerty et al., 2003). Continuity in HCN is a system-level issue over which patients rarely have control (Oudshoorn et al., 2007). CHCA et al. (2016) recommend continuity be prioritized at an organizational level. However, systemic constraints can make it challenging to have consistent staff see the same patients (Klaasen et al., 2016; Ganann et al., 2019). When continuity does not occur, opportunities to build relationships may be barred (Gantert et al., 2008; Funk & Stajduhar, 2011; Stajduhar et al., 2011), resulting in poorer care quality, decreased patient satisfaction (Tourangeau et al., 2014), patient frustration, lack of motivation to rebuild relationships (Gantert et al., 2009), and difficulty keeping track of providers (Funk and Stajduhar). When regular staff cannot be consistently assigned to the same patients, HCNs can minimize the negative impacts by preparing patients that they may be seen by multiple HCNs and optimizing other forms of continuity (Stajduhar et al., 2011). Continuity of information can be provided through documentation, communication, and ensuring HCNs have time to review charts (Stajduhar et al.). This can reduce reliance on patients to share information and allow 36 smoother transitions in care (Ganann et al., 2019). Continuity helps patients feel known (Funk & Stajduhar, 2011), improves HCN job satisfaction (Tourangeau et al., 2014; Tourangeau et al., 2017), and fosters trust and comfort (Stajduhar et al.; Tourangeau et al., 2014). It increases HCN understanding and knowledge of patient needs (Stajduhar et al.; Ganann et al.), and increases accuracy of health monitoring (Tourangeau et al., 2014). Continuity can increase efficiency as time can be saved not having to rebuild relationships or become familiar with new people (Stajduhar et al.). Continuity is closely related to effective communication, which is another factor impacting HCN-patient relationships. Open communication and good rapport are essential for providing quality HCN services (Penz & Duggleby, 2011; CHCA et al., 2016; Giosa et al., 2022) and for building relationships between patients and HCNs. HCNs expressed that positive experiences with communication were primary reasons they intended to remain in their roles (Tourangeau et al., 2014). Communicating in a meaningful way can allow HCNs to see beyond demographic or medical information to understand and treat people them as individuals (Giosa et al.). Families receiving HCN describe effective communication as important for patientcentred care (Brazil et al., 2012). They deem communication necessary to provide holistic care, demonstrate respect, and ensure patients have a clear understanding of their health needs (Brazil et al.). Effective communication has been described as cheerful, using humour, taking time to explain, showing genuine interest (Woo et al., 2017), supportive, and demonstrating empathy (Giesbrecht et al., 2014; Woo et al.). Communication can offer guidance, respond to emotions, minimize embarrassment, relieve tension, help HCNs and patients understand one another, and clarify and explain (Giesbrecht et al.). Effective communication includes listening (Penz & Duggleby, 2011; Marchessault et al., 2012), sharing (Giosa et al., 2022), and honouring silence 37 (Marchessault et al.). It requires language to be adapted across different settings and circumstances, with context, topic, and patient needs and abilities taken into account (Giesbrecht et al.). For communication to be effective, it must demonstrate mutual respect. Maintaining patient dignity is crucial (Marchessault et al., 2012; Giosa et al., 2022) and mutual trust and respect are important in therapeutic HCN-patient relationships. Both HCNs (Penz & Duggleby, 2011) and patients (Brazil et al., 2012) want to feel valued and be treated respectfully. Being aware of and honouring patient boundaries (Giesbrecht et al., 2014), arriving on time, following through with what the HCN said they will do, showing preparation and knowledge of patients’ needs and context (Stajduhar et al., 2011), and looking beyond a person’s demographic or medical states (Giosa et al.) are ways HCNs can maintain patient dignity, demonstrate respect, and build trust. How trust and respect are demonstrated may vary with individual needs and context, so coming to know and understand one another is a crucial step. Being known happens over time (Stajduhar et al., 2011) and is facilitated by consistent care providers, sufficient time, clear communication, and appropriate documentation (Funk and Stajduhar, 2011). Patients who feel connected to HCNs may be more likely to verbalize concerns, enhancing HCN understanding of patient needs (Gantert et al., 2008; Stajduhar et al.). When HCNs know patients, more effective and patient-centred care can be provided (Gantert et al., 2008; Stajduhar et al.; Woo et al., 2017; CHCA et al., 2016). HCNs in Oudshoorn et al.’s (2007) study described the importance of knowing patient values and priorities so that patientidentified needs and goals can be met. Patients and caregivers in Giosa et al.’s (2022) study also highlighted the importance of HCNs seeing patients as individuals with unique capacity, goals, and needs, rather than making assumptions. Knowing patients not only benefits relationships but also facilitates higher quality care. 38 The Role of Patients in Relationship Building and Maintenance. Relationship building and maintenance requires mutual efforts and active engagement between nurses, patients, and informal caregivers (Gantert et al., 2008; Gantert et al., 2009; Funk & Stajduhar, 2011). Patients and families benefit from being open and willing to develop relationships, but several factors can impact this. When HCNs have limited time, patients may be less willing to develop relationships (Oudshoorn et al., 2007; Gantert et al., 2008). Alternatively, families may use HCN time as respite or time to run errands, which can impact relationship development (Gantert et al., 2009). Patients and caregivers may find it difficult to require support or assistance, taking pride in their independence, which can make reliance on HCNs challenging (Gantert et al., 2008; Gantert et al., 2009). At times, care in the home can feel intrusive, or relationships with HCNs may not feel necessary to all families (Gantert et al., 2009). When these types of barriers are present, HCNs may need extra time to understand what a patient or family needs from them to develop trust, identify any barriers, and form a relationship that is therapeutic for the patient. When patients and families are open and willing to connect with HCNs, they engage in work to do so. Patients are active rather than passive in building relationships (Gantert et al., 2008). They might share details of their lives (Gantert et al., 2008; Funk & Stajduhar, 2011), ask about the HCNs’ lives or initiate personal conversations (Gantert et al., 2008; Gantert et al., 2009; Funk and Stajduhar), and make time to connect and relate (Gantert et al., 2009). Patients and caregivers who want to develop relationships may find ways to work with the HCNs (Gantert et al., 2009) and communicate about care plans, capacity, and needs (Gantert et al., 2008; Ganann et al., 2019). However, not all efforts are effective in fostering therapeutic HCNpatient relationships. 39 Patients may monitor or adjust their behaviours, intending to protect HCN-patient relationships, while unintentionally working against the relationships. Funk and Stajduhar (2011) noted decreased assertive behaviours in family caregivers who saw a good relationship as one without disagreements. Patients in Gantert et al.’s (2008) study saw HCNs as the experts and were sometimes reluctant to voice preferences or perspectives for fear of being misinterpreted as telling the HCNs how to do their jobs. Gantert et al. (2009) elaborated on patient avoidance of voicing concerns, citing fears of losing services or being treated poorly. Patients must also navigate the complicated dynamics and sometimes-burdensome roles of host and patient, with behaviour alternating between these roles during HCN visits (Giesbrecht et al., 2014). Considering the unique access HCNs have to the intimate and at times vulnerable contexts of patients’ home and family environment, awareness of these potential behaviours is important. How Context and Environment impact Relationships The final global theme identified in this review is that the environment and context matter in relationship development and maintenance. Two organizing themes make up this global theme: (1) systemic challenges impact HCN-patient relationships; and (2) care in the home is conducive to HCN-patient relationships. Systemic Challenges can Impact HCN-Patient Relationships. Healthcare system constraints related to organizational priorities, resource allocation, and service demand impacts HCN-patient relationships. There is a high demand for HCN services (Ganann et al., 2019; Gantert et al., 2008; Klaasen et al., 2016; Tourangeau et al., 2014), with patients discharged home from hospital more quickly and with increasingly acute and complex health needs (Schofield et al., 2011; Woo et al., 2017). Armstrong-Stassen et al. (2005) found that insufficient staffing coupled with complex and vulnerable patients leads to overwhelming workload 40 demands, with CHCA et al. (2016) reporting that demands on HCNs exceed current available human resources. Organizational demands can lead to decreases in frequency and length of visits (Doran et al., 2007; Arnaert et al., 2009; Stajduhar et al., 2011; Klaasen et al.; Woo et al.) and make it challenging for HCNs to provide holistic (Schofield et al.), empowering, patient-centred care (Brown et al., 2006). HCNs are left in a position of needing to quickly and efficiently prioritize care within organisational and operational system constraints. When HCNs work under time constraints this can result in prioritization of biomedical, physical, and acute needs (Arnaert et al., 2009; Stajduhar et al., 2011; Klaasen et al., 2016; Ganann et al., 2019) often at the expense of relational care (Stajduhar et al.; Ganann et al.). HCNs may feel pressured to “get in and… get on with things” (Oudshoorn et al., 2007, p. 1439) or perceive that a task-oriented approach means they are supposed to “do your care and… leave” (Arnaert et al., p. 205). HCNs may feel powerless (Oudshoorn et al.), devalued or invisible to the general public (Schofield et al., 2011) and patients may see discrepancies between their expectations and the care they receive (Woo et al., 2017). These pressures may contribute to HCN frustrations about perceived care quality (Tourangeau et al., 2014) and negatively impact HCN-patient relationships (Stajduhar et al.; Woo et al.). A personal versus task-oriented approach is preferable when it comes to relationship development (Funk & Stajduhar, 2011) but systemic constraints may make HCN-patient relationship development challenging. Contextual factors related to location of care can help combat some of these barriers. Care in the Home is Conducive to HCN-Patient Relationships. The setting of HCN is intimate, which can come with challenges. HCNs must navigate the patient home being a personal space (Tourangeau et al., 2014) which may result in HCN presence feeling intrusive. During HCN services, the home is simultaneously a workplace and a personal space, which can 41 lead to tensions. Giosa et al. (2022) discuss a case in which a patient preferred their home warm, while a provider felt more comfortable working in a cooler space and would open a window. The result was that the workplace was comfortable for the provider, but the patient was not empowered to control their own home environment (Giosa et al.). HCNs should maintain an awareness of the competing and conflicting roles of patient and host, and nurse and guest, remaining mindful of the burden these dual roles can place on patients (Giesbrecht et al., 2014). Seeing unfamiliar patients can increase the challenges in the home environment (Tourangeau et al., 2014), as the HCN may not have knowledge of important contextual information. Challenging behaviours, interactions (Ganann et al., 2019), or family dynamics (Penz & Duggleby, 2011) can be difficult to navigate when HCNs do not know patients well. Despite potential challenges, the home is seen as a more comfortable location for care. CHCA et al.’s (2016) best practice framework identifies the home as the ideal location to recover, manage conditions, and spend final days. Patients express appreciation for receiving care in their homes (Tourangeau et al., 2014) and patients and HCNs speak favourably about care in the home when compared to hospital (Funk & Stajduhar, 2011). Care in the home has greater potential for uninterrupted one-on-one time (Giesbrecht et al., 2014; Tourangeau et al., 2014). The home environment allows non-verbal communication of patient and family states and contexts, such as how space is used, seating options, and who else is present (Giesbrecht et al.). It allows patients and families to communicate with HCNs in formal ways, such as selecting the location of care, and informal ways, such as narrative storytelling about a personal item (Giesbrecht et al.). The informal setting allows natural and organic conversations to unfold, can lead to deeper conversation, building trust, finding commonalities, and developing rapport (Giesbrecht et al.). 42 Care in the home allows an opportunity to understand patient context. The home environment can enhance personal connections and relationships (Penz & Duggleby, 2011; Giesbrecht et al., 2014; Tourangeau et al., 2014), encourage natural conversations (Giesbrecht et al.) enhance understanding of context, and allow opportunities for flexible and patient-driven care (Brown et al., 2006). Ability to engage relationally within the home can bring a sense of humanity into the care-planning and goal-setting process (Giosa et al., 2022). Understanding context and psychosocial concerns of patients with complex needs ensures care plans account for patient priorities and abilities (Woo et al., 2017). Patient-centred care should attend to physical, psychosocial, and cultural needs, strengths, and capacity to engage in effective partnered care (CHCA et al., 2016). If systemic constraints are not conducive to this type of care, the benefits of the home environment may be impeded. Literature Review Summary This integrative review of the literature explores the following questions: (1) what is the value of the HCN-patient relationship; (2) what are the facilitators and barriers to developing relationships within the structures and systems of HCN; and (3) when development of the relationships is hindered, how does this impact patients and HCNs? Twenty-two citations were included, and three global themes were identified: (1) hierarchical health care models prioritizing efficiency and productivity may not be conducive to HCN-patient relationships; (2) HCN-patient relationships must be actively constructed and tended to for optimal caring to occur; and (3) the environment and context matter in HCN-patient relationship development and maintenance. The literature review illuminated the systemic, organizational, and personal factors that can act as barriers to HCN-patient relationships. At the systemic and organizational level, challenges such as time, staffing, resource constraints, scheduling, workload demands, and 43 continuity of care arose as potential barriers to HCN-patient relationships. Despite an organizational focus on efficiency and productivity in the healthcare system, HCN-patient relationships are valuable and beneficial and need to be recognized and prioritized. Relational care requires significant work from the HCN, patient, and family, who must be willing to engage and put forth effort to connect. In their study, Gantert et al. (2009) identified hurdles to establishing partnerships when patients or their families are unwilling or unable to engage in such relationships. This phenomenon may also be interconnected with systemic limitations. If a family caregiver uses HCN visit time to run errands or seek relief from their caregiver responsibilities, it could suggest that they lack sufficient resources and assistance to provide care for their family member effectively. Patient-centred care and quality of life are crucial considerations in community health care services. As such, it is important to demonstrate patient outcomes (Gray et al., 2014; Woo et al., 2017). However, these can be challenging and are often neglected in measures routinely collected at the health authority level. What is officially measured and tracked communicates the highest priorities within an organization and emphasizes the types of care that should be prioritized. When factors connected to relational care are not measured, this work becomes invisible at an organizational level, making it difficult to incentivize and incorporate into the times allotted for patient care. Experiences of power also impact relationships. Synthesis of the literature highlights that patients and HCNs experience power and powerlessness within the healthcare system. Despite a push towards patient-centred and empowering, partnered care, such as the program changes described by Brown et al. (2006), some HCNs found it difficult to engage in partnered care and expressed concerns about relinquishing professional control or burdening patients with too much 44 responsibility. HCNs were conflicted between wanting and valuing HCN-patient relationships but feeling a need to maintain firm boundaries (Stajduhar et al., 2011). This may in part be related to the systemic constraints experienced within HCN. Resource constraints may make HCNs feel a need for boundaries or a sense of control to cope with the challenges of service cuts, as Stajduhar et al. queried. Or perhaps as Oudshoorn et al. (2007) posited, HCNs who feel powerless may simply be less equipped to empower others. Either way, this has the potential to further exacerbate the experience of powerlessness for patients and must be addressed. There is added burden or complication within the home environment related to dual roles. Giesbrecht et al. (2014) described patients and caregivers holding a dual role of host and patient, while HCNs hold the dual role of guest and provider. Both patients and HCNs must decide how and when to enact each role, and home care visits may involve shifting back and forth between roles depending on the context and situation. For example, home cleanliness has been expressed as a challenge in the work environment by some HCNs (Tourangeau et al., 2014). This burden may weigh heavily on patients as they must choose to take the host role of preparing their home for a guest – the HCN – or saving energy as a patient. If the patient role takes precedence, by choice or necessity, they may experience guilt or embarrassment about an untidy home. When HCN-patient relationships are fostered, HCN and patient experiences improve. Quality of care is impacted by HCN-patient relationships as patients may be more open with their concerns, HCNs are better able to conduct assessments, and more appropriate, patientcentred care plans can be developed (Stajduhar et al., 2011). When patients described the quality of their HCN-patient relationships, they sometimes described aspects of the HCN work and whether their needs were met (Funk & Stajduhar, 2011). Other times, patients described the relationships as the most beneficial aspects of their care and the HCNs as caring, genuinely 45 interested in them, knowledgeable, and vigilant (Woo et al., 2017). The overlap in patient descriptions between clinical knowledge and competence, and emotional and relational connection, may indicate that patients perceive quality of care and quality of relationships as intertwined and closely linked. The literature highlighted that when HCN-patient relationships are not facilitated, there is a cost to care quality, patients, HCNs, and the health care system. Many of the sources indicated that patients want to know the HCNs and value when there is mutual sharing within HCN-patient relationships. Though many sources focused on patients feeling known by specific nurses, Funk and Stajduhar (2011) reported how communication and documentation by HCNs facilitated continuity of care and contributed to patients being known, as this allowed other HCNs to arrive at a patient’s home with knowledge beyond the medical needs of a patient, including their preferences, goals, capacity, family dynamics, and other personal and contextual details. Despite systemic constraints and challenges, the literature demonstrated that the environment and context of HCN is well-suited to development and maintenance of relationships. The home allows one-on-one time and intimacy that is conducive to relational connection. Patients and HCNs frequently feel a desire to connect and form relationships. Despite potential challenges in the home environment, such as difficult family dynamics, HCN presence feeling intrusive at times, or a need to balance dual roles, care in the home is often preferable. Having an opportunity to witness the context in which a patient lives adds valuable knowledge that can help personalize care to be appropriate, relevant, and meet individual needs. However, if HCNs do not have the time needed to come to know patients, develop personal connections, and understand the contextual details, the benefit is largely lost. It is important that systemic constraints that are not conducive to this type of care be identified. Strategies for 46 overcoming barriers can then be implemented to maximize the benefits of the home environment and HCN-patient relationships. Future Research This thesis project explores how the structures and systems in everyday HCN work impact the HCN-patient relationship from the perspectives of patients. The literature review reinforced the importance of context and environment as key factors in understanding how HCNpatient relationships are experienced within the health care system. Considering that home health services vary across the country, it is important to understand the challenges experienced by people living in northern BC. However, very few of the sources in this review were conducted in western Canada or BC, highlighting a gap in the research. The nursing voice is over-represented in the literature, and patient voices need to be amplified in future studies. This thesis, which takes the standpoint of patients and caregivers, is thus an important contribution to the discussion of HCN-patient relationships. Although 17 of the 22 citations used qualitative methodologies (two of which were mixed methods), only four used ethnography. None of these used institutional ethnography. Although many of the sources touched on the systemic and organizational issues contributing to challenges within HCN-patient relationships, none of the studies centred the structures and systems that organize HCN work. This thesis, which uses an institutional ethnographic lens to explore how the work of HCNs and patients is coordinated and organized at an institutional level, will help to fill this gap in the literature. The literature review highlighted several other gaps in the literature that should be addressed in future studies. It would be beneficial for more Canadian locations outside of Ontario to be studied as Ontario’s managed competition model is not always applicable to other 47 regions. Most citations included in this review were qualitative, which is not unexpected given the subjective nature of HCN-patient relationships. However, larger studies using quantitative or mixed methodologies may provide valuable generalizable information about patient, caregiver, and HCN satisfaction, perceived systemic barriers to relationships, and other quantifiable details about HCN-patient relationships. Exploring ways to meaningfully incorporate outcome measures into practice would be valuable. Finally, incorporating more ethnographic studies, particularly institutional ethnography, may be a step towards actionable recommendations for systemic improvements in this area. Limitations of the Review This review drew on important IE concepts, focusing on exploring the social organization of the topic while remaining critical and aware of the ruling standpoint through which many research projects were conducted (Campbell & Gregor, 2002). Through this lens, efforts were made to ensure that the dominant perspectives and ideas within the current literature did not become the dominant perspective within my own study (Campbell & Gregor). From this standpoint, it is important to recognize that some of the potential limitations discussed below may not be considered limitations to the same extent within an IE study. Due to a lack of specific quality requirements in integrative reviews (Whittemore & Knafl, 2005), it is feasible that weak evidence may have been included. However, each citation was assessed using various quality appraisal tools, and no citations were deemed to be poor quality requiring removal from the review. Restricting sources to English and excluding grey literature may have resulted in language and publication biases, thus missing some information. Including diverse methodologies can result in lack of rigour, biases, or challenges with accuracy (Whittemore & Knafl) which can be a limitation. However, explicit and systematic data analysis 48 can address this risk (Whittemore & Knafl). Attride-Stirling’s (2001) thematic networks were used to attend to rigour and accuracy. In addition, through an IE lens, including diverse methodologies and types of sources can be a benefit, as it allows exploration of the topic through various standpoints and encourages a critical reflection on whose voices are being amplified. Including data from both a best practice framework authored by large organizations, and from a smaller qualitative study of front-line HCNs, patients, and families allows both standpoints to be considered and presented within the review. Lack of role clarity in community health nursing, a variety of terms used to refer to roles, and occasional overlap between primary care nurses and HCNs made delineating each role challenging. Due to the high volume of qualitative studies conducted in Ontario, generalizability of findings is limited and some of the strengths and limitations specific to BC may be missed. However, in IE it is recognized that there is potential for an endless variety of subjective experiences. Literature Review Conclusions Within the finite resources of the healthcare system, decisions are made regarding who will receive care and the type and quantity of care they will receive (Rankin & Campbell, 2006). As demographics, demand, and needs change, so too do the structures and systems that govern how services are delivered. HCNs must be supported to make their daily work visible, highlighting the benefits of this work to patients and the healthcare system. In the Canadian healthcare system, there is a simultaneous recognition of the value of relational and patientcentred care, and a need for sustainable, efficient, financially viable health care services. If a balance between these two priorities is to be struck, an exploration of the structures and systems present in the daily work of HCN, and how these facilitate or act as barriers to relational care, is warranted. Clarification of how the priorities of efficiency and patient-centredness are related, 49 whether they are in competition or can occur simultaneously, and how they are manifested within the daily processes of HCN work would be a valuable contribution to the literature. 50 Chapter Three: Methodology and Methods Objectives The literature review highlights the importance of HCN-patient relationships and some of the systemic barriers present within the Canadian healthcare system. This study focuses on a method that will further elicit how prioritization of sustainability, efficiency, and cost effectiveness within the healthcare system impact the ways care is provided and received in a publicly funded home care context. I explored the structures and systems present in daily HCN work and how they interact with the development and maintenance of HCN-patient relationships from the standpoint of patients. In this chapter I present an overview of institutional ethnography (IE) as a method and why it is an appropriate approach for this study. I describe the study design, including how and why patient-oriented research (POR) approaches were incorporated. Methods of Inquiry Qualitative methodologies allow researchers to explore settings, contexts, or environments through the standpoint of individuals who live within them (Hannes & Bennett, 2017). In IE, the phenomena of interest are the institutional processes themselves, which in this case are present in the daily work of receiving and providing HCN services. In the previous chapter, gaps in the literature were identified, including a shortage of studies in a BC context, studies from a home care patient perspective, and studies using IE. With this study focusing on both subjective experiences of nurse-patient relationships and the institutional structures and processes impacting these experiences, IE is a natural fit. Theoretical Framework I align with critical theories that recognize reality to be dynamic, impacted and shaped by political, social, and cultural contexts (Streubert, 2011a). I selected methods that could spur 51 action to improve HCN-patient relationships. A feminist lens is used to maintain awareness of the power a researcher can hold (Campbell & Gregor, 2008), and to consider the power dynamics present within daily HCN work. Research has long focused on issues predominately impacting men or conducted from perspectives of men (Criado Perez, 2019). Smith’s work developing the IE methodology is built on feminist sociology, and in part responded to the lack of representation of women’s voices in research (Campbell & Gregor). IE was developed to take the standpoint of women, grounding exploration within the experiences of women (Smith, 2005). In the decades since IE’s inception, this has been expanded beyond women’s standpoint to a sociology for all people (Smith, 2005). In BC 90.6% of registered nurses and registered psychiatric nurses employed in 2021 were women (Government of Canada, 2023). Informal caregiving is taken on more frequently by women than men in Canada, and can cause stress, injury, poorer quality of life, and financial strain (Health Council of Canada, 2012). Women who provide informal caregiving are less likely to receive support and more likely to feel isolated and depressed than their male counterparts (Criado Perez, 2019). A feminist lens is particularly important when considering femaledominated work such as nursing and informal caregiving. Smith (2005) described traditionally female work as the “invisible work of caring and the human encounters involved” (p. 179) as much of this work goes unnoticed. For example, in the nursing profession, work such as filling in flow sheets and check boxes while providing nursing care cannot possibly convey the additional invisible caring work in which nurses engage every day. A crucial aspect of IE is to take the standpoint of those often excluded from discussions (Grahame et al., 1998). I incorporated POR approaches during data analysis and knowledge 52 translation by working with a patient partner. The partnership helped amplify the patient voice while describing the work of receiving HCN services. Methodology Selection Other potential methodologies were considered, including constructivist grounded theory (CGT). Both IE and CGT align with the worldview of multiple realities and critical theories, and CGT would be well suited to exploring the subjective lived experiences and challenges of navigating HCN. IE analysis focuses on the institutional processes, providing an opportunity to discover and explicate how institutional processes, structures, and systems coordinate the social organization of daily work (Grahame, 1998). The intention in IE is not to theorize about everyday, taken-for-granted processes, but simply to examine them closely to understand how peoples’ work (or activities) are coordinated (Campbell & Gregor, 2008). In selecting a methodology, I considered the overall aims of the study. I wanted to gain a deeper understanding of the challenges present within the structures of the organization of HCN, rather than categorize, theorize, conceptualize, or understand subjective experiences. To uncover the ruling relations and the problematics within everyday HCN work, IE methodology is most appropriate. Characteristics of Institutional Ethnography There are several key terms that are important to IE. These include how Smith talks about standpoint and work. Other terms used in IE are ruling relations, explication, disjunctures, and problematic, as well as how IE draws on texts to inform analysis. Standpoint Participants in an IE study provide a standpoint or location from which the researcher attempts to understand the world (Rankin, 2015; Rankin, 2017). One’s standpoint refers to the way a person is positioned within the setting. Each individual has a different standpoint, which 53 impacts how they see and experience their daily work. In this study, the setting is the location where HCN services are provided. The HCN services under discussion are located in northern BC. The standpoint is that of patients and caregivers who receive HCN services in this setting. Daily Work In an IE study, work refers not only to paid employment, but to anything that requires time and effort and is done intentionally under specific conditions (Smith, 2005). The “generous concept of work” includes recognition of both visible and invisible, unrecognized, and unacknowledged work (Campbell & Gregor, 2008, p. 72). Caregiving, housework, grocery shopping, and taking public transportation would all be defined as work within IE. In this study, work includes the work of HCNs that is visible to patients and caregivers and the work in which patients and caregivers engage as they receive HCN services. By exploring the daily work of individuals in depth, we begin to understand how the ruling relations coordinate this work. Ruling Relations Ruling relations are the processes and systems that regulate, coordinate, and organize the actions and participation of the people engaging in everyday work (Rankin & Campbell, 2006). Discovering and describing the ruling relations helps us to understand how participation within an organization is regulated and how choices and judgements about daily work are coordinated by structures and systems of the institution (Rankin & Campbell). Exploring with people “what they do and how they are organized to do it” is the method used in IE to discover the ruling relations (Rankin & Campbell, p. 17). Ruling relations become visible as we explore the routine tasks and texts with which individuals engage during their daily work. This goes beyond explicit rules and policies to include the ways settings are organized and the implicit, often unconscious knowledge of how one must navigate a setting (Campbell & Gregor, 2008). The discovery and 54 explication of how ruling relations organize a setting not just in one location but across the organization is at the centre of an IE study (Campbell & Gregor). Explication Explication describes the depth of critical inquiry and goes beyond simply explaining a phenomenon (Campbell & Gregor, 2008). It is a detailed description of what actually happens, and how, to the people living in the local setting, and how everyday life is coordinated on an organizational scale (Campbell & Gregor). An explication in this study provides a comprehensive description of what occurs within the social organization of HCN. This facilitates understanding of how the social organization of HCN work impacts the HCN-patient relationship. Within this explication, I examine areas of disjuncture. Disjunctures Disjuntures occur when there is tension between different ways of knowing (Rankin & Campbell, 2006). The different ways of knowing in IE encompass what is known from the perspective of the ruling relations and what is known from the actual people who experience the day-to-day work in a setting (Campbell & Gregor, 2008). For example, a disjuncture may result if an organization publicly promotes one value while embedding practices in daily work that result in different outcomes. Problematic The problematic is a technical term used in IE to bring attention to exploring and understanding the situations in which people live (Campbell & Gregor, 2008). The problematic emerges from participant descriptions of their daily work. It often represents a difference, disjuncture, or tension between what is known and experienced by those engaging in everyday work and what is understood within the ruling relations (Rankin, 2017). The IE researcher seeks 55 not only to describe what is going on, but to explicate it, with the problematic revealed in the explication. How Institutional Ethnography Draws on Texts Texts coordinate everyday activities and provide a visual into the ruling relations of everyday work (Rankin, 2017; Smith, 2006). These might include “informal textual domains”, such as a note or email between HCNs, or “bureaucratic textual domains” such as documentation flow sheets (Rankin & Campbell, 2006, p. 78). Texts, often taken-for-granted, shape the thoughts, actions, and decisions of people involved in an organization, coordinating work not just in one location, but across sites or settings (Campbell & Gregor, 2008). People living and working in a setting will, often unconsciously, bring the ruling relations into action through textually-mediated practices (Campbell & Gregor). Policies, flow sheets, charting documents, logbooks, notes, emails, referrals, and countless other textually-mediated processes are used in daily work to rule and prioritize institutional knowledge between people and across settings. The Lens of Institutional Ethnography IE is a “sociology for people” founded by Canadian sociologist Dr. Dorothy Smith (Smith, 2005, p. 10). Smith saw IE as an alternative to other approaches, which she viewed as being potentially objectifying (Campbell & Gregor, 2008). Smith wanted to explore phenomena in a way that starts by looking at the issues or concerns experienced within the daily work of real people, and how these are coordinated and organized (Smith, 2005). This exploration begins from a specific standpoint, wherein the researcher attempts to view the world from the perspective of participants (Campbell & Gregor). Understanding how an institution is organized comes from detailed descriptions of the daily work of those in the setting. Explicating the daily 56 work makes visible the ways organizational agendas are embedded, coordinating and organizing how things are done and what is prioritized (Rankin & Campbell, 2006). IE explores the activities in which people engage and how these are coordinated socially on a large scale across multiple sites at local and translocal levels (Smith, 2006). Translocal social relations impact local settings, as in Smith’s (2006) example of a local hospital closure. This would require significant translocal coordination and organization, also known as ruling relations (Smith, 2006). Tension can occur between what is known by those living and working in the setting and what is understood within the ruling relations, and from this tension or disjuncture emerges the problematic (Rankin, 2017). The result of an IE study is a detailed description of what is actually happening to the people in the local setting, why it matters, and how it is organized by the ruling relations (Campbell & Gregor, 2008). The standpoints of patients and caregivers are taken for in study. I began by exploring the details of everyday work with participants. Explication of the daily work allowed me to examine how HCN-patient relationships are facilitated and impeded by the ruling relations. What Will be Examined and How? Using an IE approach allows exploration of what patients and caregivers do in the course of their daily work. Describing the ways participants engage with the HCNs illustrated how the organizational structures and systems present barriers to HCN-patient relationships, and how patients and HCNs work around these barriers. Gaining an understanding of these systems facilitated discussions of why HCN-patient relationships are important, how HCN-patient relationships can be promoted, and how HCN work can be organized to facilitate HCN-patient relationships. In examining these relationships, the patient voice is crucial. 57 Characteristics of Patient-Oriented Research I incorporated POR into this study to ensure findings are relevant to patients, to inform future research by co-identifying important questions that recognize patient priorities, and to develop research capacity. POR refers to research including patient partners that asks and answers questions that are important to patients and improves healthcare and patient outcomes (CIHR, 2019b; Michael Smith Health Research BC, 2024). While patients are included in this study as participants, the study design also included engagement with a patient partner. This aspect of the project was supported by the BC SUPPORT Unit Northern Centre (Michael Smith Health Research BC). Although POR is not commonly present in IE studies, an IE methodology is well-suited to pair with a POR approach. Both approaches emphasize giving voice to those who are often excluded from discussions at an institutional level (Grahame et al., 1998) and denied entry into the research process (CIHR, 2019b). Both IE (Campbell & Gregor, 2008) and POR (CIHR, 2019b) take the standpoint or highlight the perspectives and expertise of patients or informants, from their unique experience and knowledge gained through living and working in the setting or with the condition being studied. While POR aims to engage patients in work to improve policies, practices, and the overall healthcare system, priorities seem to focus primarily on capacity development and engagement (CIHR, 2019b). Pauly et al. (2019) identified a gap within the POR framework in terms of examining and addressing the ruling relations that govern and coordinate the healthcare system – the social organization, environment, economic factors, and policies that impact peoples’ health in varying ways depending on their social location within the hierarchical organization (Pauly et al.). Pulling from both IE and POR approaches in research is a way to fill this gap. In this study, efforts were made to ensure that the inclusion of a patient 58 parter did not shift the study away from an IE methodology, such as engaging in initial education about the methodology and ongoing discussions about the intended focus of an IE study. Research Design: How to Read this IE To follow is a description of how the study was conducted. The organizational structures and systems present in daily work are examined. Of interest is how patients see structures and systems coordinating the care they receive, particularly related to HCN-patient relationships. Detailed accounts of the daily work of receiving HCN services were gathered from the standpoint of patients and caregivers, illuminating the ways work is coordinated. I aimed to show how the ruling relations either facilitate or act as barriers towards development of nurse-patient relationships. COVID-19 Considerations The COVID-19 pandemic impacted this study. Significant revisions to the study plans were required and delays occurred in receiving operational approval from Northern Health. All plans for face-to-face interactions, including field observations and in-person interviews, were canceled or changed to virtual or telephone interviews. No interviews were permitted with HCNs due to workload concerns. As such, this study focused solely on the standpoints of patients and/or informal caregivers. Role of the Researcher I have been employed in Home and Community Care in several communities, including the community under study. At the time of data collection, I had been away from the setting for several years. Insider research can have benefits and the study location was chosen purposefully. I gained entry to the site through prior relationships with staff and management and understood the work processes that occur in the local HCN setting. With the dual roles as HCN and student 59 researcher, I was aware of and cautious about potential biases, assumptions, and power dynamics. I implemented a critical approach emphasizing reflexivity to attend to this. I used reflexive journaling to record and reflect on assumptions, thoughts, and observations throughout the research process. Reflexive journaling allowed small details that could not be captured in the transcripts to be reflected upon as the study unfolded. For instance, the transcripts could record nonverbal cues such as pauses, laughter, or tone of voice, while the reflexive journal could record things I noticed, such as links between interviews, a sense of hesitancy or that something was held back, or things that may have been left unsaid. While these interpretations are not appropriate to use in the data, they indicated potential disjunctures between what I observed and what was being described by participants and thus helped guide future interview questions and prompt discussions with the patient partner. Frequent discussions with the thesis committee and patient partner aided in reflexivity through sharing feedback, insight, and alternative perspectives. At times, these discussions raised questions, prompting me to revisit the transcripts and various threads, aiding identification of potential areas of tension. The insider role can have challenges. Wilkinson and Kitzinger (2013) described strategies for managing prior experiences when conducting insider research, including minimizing, utilizing, maximizing and incorporating. For this study, I used and incorporated my experiences in data analysis. My previous experiences led to identification of the research question based on challenges in my work, and my professional connections were used to gain access to the setting. Smith (2006) cautions to avoid making assumptions to fill in gaps or jumping to conclusions about steps behind actions. I considered what I already knew about HCN work and reflected on assumptions I held. Though I initially considered using my insider knowledge to add to data collection and analysis, I made a conscious decision not to. For instance, when a participant 60 referenced HCNs having a set amount of time per visit, I did not insert a description of the points system used to determine how much time each patient should be allotted. Although incorporating experiences of the researcher into the collection and analysis of data can be acceptable and even beneficial in IE research (Smith, 2006), the insider status can make it challenging to see the underlying tensions due to prior knowledge and assumptions (Rankin, 2017). I felt that, if I focused too much on describing the HCN work that was not visible to participants, I may miss important disjunctures from the standpoint of patients. As such, I actively attempted to set my own knowledge aside and focus on what could be gathered from participant accounts, even if this meant some processes could not be described in detail. Even with this conscious effort, I did experience some “institutional capture”, which occurs when descriptions of experiences are translated into the institutional discourse rather than focusing on what is actually happening (Smith, 2005, p. 156). This can occur both in the transcripts of interviews and the researcher’s interpretations. It is particularly challenging to avoid institutional capture when both the participants and researcher have experience with the institutional setting (Smith, 2005) as in the case of this study. This occurred at times, such as when I initially missed or assumed an underlying tension which was not reflected in the data. Discussions with the patent partner were helpful in these instances. Her experiences and questions prompted more critical review of what was actually being described in the transcripts. Ethical and Operational Approval Ethical approval for harmonized minimal risk behavioural study, with UNBC and Northern Health as boards of record, was granted on July 31, 2020. I decided to include patientcaregiver dyads as participants as well as individual patients, and so an REB amendment was 61 submitted, with approval on November 20, 2020. Operational approval from Northern Health was delayed by the COVID-19 pandemic and was granted December 1, 2020 (see Appendix C). Participants Participants include patients and patient-caregiver dyads who receive HCN services. Patient-caregiver dyads are comprised of both a patient who receives HCN services and an informal caregiver. Informal caregivers are family members or social contacts who provides ongoing unpaid support. The term “participants” is used intentionally, despite IE studies typically referring to participants as informants. Informant is defined as “a person who gives information” and “one who supplies cultural or linguistic data in response to interrogation by an investigator” (Merriam-Webster, n.d.). Meanwhile, participant is defined as “one that participates” (Merriam-Webster). The words “informant” and “interrogation” have connotations that could contribute to a sense of power imbalance. Striving to minimize power imbalances and amplify patient voices, it is crucial that I consider both the technical definitions and potential interpretations of terms used. Upon discussion with the patient partner, we agreed that the term “participant” better represents the intended nature of this study. Participants in an IE study are understood to be experts in the social processes being investigated (Campbell & Gregor, 2008; Ng et al., 2017). Participants engage in the daily work of a setting and are both “active in, and subject to, the organized power of the institution” (Rankin, 2017, p. 2). Individuals living in or navigating a particular setting are not located in identical ways, but rather have unique subjective realities (Campbell & Gregor). In IE, a group of participants is not referred to as a “sample”. The goal is not to report themes across an entire population but rather to explore a variety of experiences (Smith, 2006). The data collected from 62 participants brings to light different information depending on individual experiences, as each viewpoint comes from different locations. Recruitment. In an IE study, selection and recruitment of participants is open-ended and guided by emerging data as threads arise (Smith, 2006). Typically, participants are selected purposefully during fieldwork, seeking a variety of experiences (Smith, 2006). Field work was not possible in this study, so I relied on volunteers who responded to recruitment flyers. The goal of IE recruitment is to include “active subjects who are knowers of their everyday world”, especially those often excluded from discussions at an institutional level (Grahame, 1998, p. 356). Recruitment is not based on categorical descriptions such as class, age, or sex, as this has potential to encourage a categorical focus during analysis (Smith, 2006). I focused on recruitment of participants with diverse experiences, such as reasons for accessing HCN, length of time on the program, frequency of visits, and level of independence (see Table 6). Specific goals for sample size is not feasible in IE, as emerging data guides recruitment. Saturation is not typically a feature (Jones & Smith, 2017; Streubert, 2011b) as there is endless potential for variety in human experiences (Streubert, 2011b). I loosely aimed to recruit between six and twelve participants. I continued recruitment until satisfactory depth of data was reached to enable a detailed description of the institutional processes expressed through everyday work. Recruitment Activities. There were potential power implications in relationships between me, the HCNs, prospective participants, and patient partner. Due to the COVID-19 pandemic and to avoid actual or perceived coercion of potential participants, the HCNs assisted with passive recruitment activities by distributing flyers to patients. Interested patients contacted me after their HCN visit, and their identity was not disclosed to the HCNs. 63 HCNs distributed recruitment flyers (see Appendix D) on nine days. The first round of recruitment was in December 2020. HCNs delivered flyers to patients on December 14, 16, 18, 22, 24, and 26. The second round of recruitment was in April of 2021. HCNs delivering flyers to patients on April 22, 25, and 28. Flyer delivery was spread over multiple weeks and different days, aiming to reach a variety of patients on different schedules. The first round of recruitment resulted in five interviews, (four individual patients and one patient-caregiver dyad). The second round of recruitment resulted in four interviews (three individual patients and one patientcaregiver dyad). I also posted flyers in pharmacies. No participants were recruited this way. Recruitment days were scheduled in collaboration with the Clinical Team Lead. I arrived at the HCN office at 8:00am to deliver flyers prior to the HCNs leaving the office for patient visits. I put flyers into the bin of HCNs who had not yet started their shift. Delivering flyers in person provided an opportunity to give a brief overview of the study, directions about handing out flyers, and invite questions. HCNs were asked only to deliver flyers and advised that any questions should be directed to me. This was to avoid additional workload, ensure patients received accurate answers, and avoid potential or perceived coercion if patients felt they were being encouraged or discouraged to participate. It is difficult to determine how many patients received flyers. I was not able to observe the number of patients seen each day. HCNs see some patient multiple times a week, so may have handed out less flyers some days. One HCN mentioned not giving a flyer to a patient she deemed ineligible due to cognitive impairment. It is possible HCNs used their discretion to determine which patients should and should not receive recruitment flyers, which was not part of the instructions. This may have meant patients were missed if a HCN’s judgment of the inclusion 64 and exclusion criteria differed from mine. However, the clinical judgement of the HCNs in relation to patients’ cognitive capacity was likely sound and so I did not intervene. Consent Process. Interested participants contacted me by telephone or email. I introduced myself, provided a summary of the study, and confirmed interest and eligibility. I then sent an Information Letter and Consent Form (see Appendix E) via mail or email. I offered to review the Information Letter and Consent Form with potential participants and answer any questions. I provided instructions for how to contact me to request more information or consent to the study. After patients or patient-caregiver dyads reviewed the Information Letter and Consent Form, they returned a signed copy or provided verbal consent. Once consent forms were completed, we scheduled a date, time, and method for the interview. Inclusion and Exclusion Criteria. The inclusion and exclusion criteria for participants is outlined in Table 5. Initially, only patients were to be included. During recruitment I received requests for interviews with patients and informal caregivers. When a patient met inclusion criteria, was able to consent, and wished to have their experiences included, but had health issues that precluded them from being the primary interviewee, a caregiver could be included. For example, weakness or fatigue, progression of illness, or disability such as hearing loss may impact a patient’s ability to engage in an extended interview. Both the caregiver and patient were required to consent to the interview. Patients were present and encouraged to interject to provide further detail, offer differing perspectives, or express agreement or disagreement. Inclusion Criteria Patient or patient-caregiver dyad receiving HCN services Seen by HCN at least once weekly for at least one month in the previous four-months Able to participate in an interview Exclusion Criteria Rationale The setting of interest was HCN, with a focus on HCN-patient relationships Patients with regular, ongoing service needs may have different priorities and expectations than patients with short-term or infrequent service needs An interview was the method of collecting information. Informal caregivers could assist when needed with consent Rationale 65 Cognitively unable to consent to participate Under 19 years of age Unable to speak and understand English The topics discussed had potential to be sensitive and private. All participants needed to consent to involvement, including patient-caregiver dyads Healthcare relationships within pediatric populations may have added complexity beyond the scope of this project Hiring translation services was outside the scope of this project Table 5: Inclusion and Exclusion Criteria for Study Participation Included Participants. A total of twelve potential participants expressed interest in the study, including four patient-caregiver dyads and eight individuals. Of the four patient-caregiver dyads, one withdrew prior to the interview due to an exacerbation of health issues, and one was ineligible to participate as the patient could not consent. Of the eight individual patients, one was only seen by the HCNs monthly and so was ineligible. Seven individual patients and two patientcaregiver dyads ultimately participated in the study (see Table 6). Participants displayed a range of experiences in length of time on the program, frequency of visits, reasons for admission, type of care received, level of familial and social support, and length of time receiving HCN services. In this way, the goal of gathering descriptions from participants with a variety of experiences was achieved. Male Female Female Female Male Female Female Male (patient) Female (caregiver) Male (patient) Female (caregiver) P1 P2 P3 P4 P5 P6 P7 PC1 PC2 “Many” years 6 months 3 years 3 months 4 months (home visits) seen in clinic previously “A few” years 8 months 2 months 5-6 years locally, decades elsewhere Time on Program Table 6: Participant Demographics Sex Pseudonym Daily Every 2 days to weekly Wound: as needed Catheter: monthly Every 3 days and as needed Daily to every 2 days Daily to every 3 days Daily to every 2 days Every 2 days Daily Frequency of Visits 15 minutes (wound) Time varies 5 minutes or more, depends on care 15-20 minutes (wound) 40 minutes (wound and IV) Not specified 10 to 25 minutes 10 minutes (wound) 30-45 minutes (wound and IV) 7 to 15 minutes Not specified Length of Visits Wound care, IV antibiotics Palliative care Wound care, IV antibiotics, Catheter care Wound care Wound care, IV antibiotics Wound care Wound care, IV antibiotics Wound care Wound care HCN Service Needs Home support services Awaiting home support services Private home support services Physiotherapy None None Previously had home support services None Other Home Care Services Accessed Home support services Activities of daily living, primary caregiver Activities of daily living, primary caregiver None mentioned Advocacy, support Activities of daily living support Help with minor activities if home support cannot come Activities of daily living support Managing health (e.g., check-ins, discharge planning) Activities of daily living support Informal Support: type Wife Wife N/A Daughter Wife Husband Brother Husband Neighbour / Friend Informal Support: source 66 67 Engagement of the Patient Partner The role of patient partner differed from patient participant. The objectives for the partner were to help highlight aspects that may be invisible from researcher and nurse perspectives, inform the study direction, and bring attention to things that might have gone unnoticed or questions that might have gone unasked. I engaged a patient partner as a study team member after data collection and interviews were complete. The Information Letter and Consent Form (see Appendix E) included a section inviting all study participants to indicate whether they would like to receive additional information about the study and give permission to be contacted following their interview. Participants were considered for engagement as a patient partner if they gave permission for contact following interviews and showed interest in the study, such as asking questions about the study goals, research progress, or possible outcomes of the study. Participants who requested additional information about the study but did not become engaged as a patient partner received a final report of study findings. After completing the interviews, A.T. emerged as a potential patient partner and fit the above criteria. I approached her about becoming engaged and she expressed interest. A.T. was provided with the Letter of Transition: Patient Partner (see Appendix F). The letter described the role of the patient partner and outlined when the role of participant ended, and the role of patient partner began. The partnership involved relationship development and capacity building for the patient partner and me as a student researcher. We collaborated to define expectations around roles, goals, and fears. We co-developed a shared language, discussing jargon, defining terms, clarifying language, and ensuring titles and terms used were patient-centred. The term “patient partner” was selected in collaboration with A.T., ensuring she felt comfortable with the way she 68 would be described and referred to in study materials. As the study progressed, we co-created research and knowledge translation activities. The Steps Model (Adams et al., 2017) helped guide the incorporation of a patient partner into this project. Three key elements of community-engaged research include building trust, mutually beneficial outcomes, and ensuring impact can be assessed and measured. The model describes five steps of engagement, beginning with no engagement, to preliminary engagement, initial partnership, extended parthernship, and finally full partnership (Adams et al., 2017). In this study, the patient partner was involved in the research during data analysis and knowledge translation, engaging up to step four of an extended partnership. Table 7 outlines the study activities that took place at each step. Steps Model Study Activities Step 1: No Conducted prior to patient partner engagement: Develop the research engagement question, recruitment, and data collection Step 2: Preliminary Identify potential patient partner, develop trust, create mutual engagement understanding Step 3: Initial Discuss how goals and interests align, create work plan, identify what partnership the patient partner wants to be involved in, begin early data analysis Step 4: Extended Develop research skills and capacity, engage in knowledge translation partnership through co-presenting at conferences Step 5: Full Not incorporated into this study partnership Table 7: Patient Partner Activities and the Steps Model (Adams et al., 2017) Data collection and analysis Data collection and analysis occur concurrently in IE. The data is not one-sided, and the researcher takes an active role in coinvestigation, producing narratives and constructing data with participants (Smith, 2006). A reflexive journal, committee discussions, and work with a patient partner aided in reflexivity. Data Collection. IE can involve diverse data collection methods, selected to fit the topic and context and determined through emerging data (Campbell & Gregor, 2008). In this study 69 data was collected through interviews with patients and patient-caregiver dyads, supplemented by a reflexive journal, discussions with a patient partner, and exploration of public texts. I conducted unstructured interviews as participants were deemed eligible. A preliminary interview guide was used (see Appendix F and Table 8). As is common in IE, emerging data guided data collection, as there is no requirement to maintain standardization between interviews (Smith, 2006). The preliminary questions were drafted to open broad conversation, with probing questions to draw out detailed descriptions of what actually happens. Why do you think that happens? Have you asked for this to change? If so, what happened? If not, what prevented you from asking? None pre-planned What do you think contributes to that? Is there anything you can think of that is not helpful during a visit? Can you think of a time where a home care visit did not go as you expected? What contribute to that? How was it handled? What influences your relationship with the nurses providing your home care? Has your relationship changed over time with the nurses? In what ways? Possible Probes How long have you had home care services? How was it initially set up? What other supports do you receive for home care? Has anything about your home care services changed over time? What sort of things? Why do you think that is? How has it impacted you? How do you know when the nurse is going to come for your appointment? How do you prepare for their visit? What happens while the nurse is there? How often do the nurses typically see you in one week? Do you usually see the same nurse or different nurses? What is your understanding of why you receive care from (different/same) nurses? How do you share information about changes to your health or your condition? What do the nurses ask about your health? Do you discuss issues not related to your home care with the nurse? Why or why not? How are home care nurses part of your health care team? Who else makes up your health care team? Can you tell me more about that? Table 8: Preliminary Interview Guide Questions and Rationale Is there anything you would change about the care you receive from home care nurses? Is there anything you would like to tell me about your experiences with home care that we have not already talked about? Can you describe the relationship you have with the home care nurse or nurses who provide your care? If you have a health concern between visits from the nurse, do you call the home care nurse or someone else? What are some of the things the nurses do that are most helpful during their visits? Can you tell me some of the ways you communicate with the nurses during the visit? Can you tell me about a typical appointment with your home care nurses (e.g., maybe your last appointment)? Interview Question Can you tell me about your experience with home care? Explored relationships from a different angle, opening a general discussion on the emotional or experiential aspects, with probing questions to gather more detail of how things actually happened Expanded upon the probe of what was not helpful to learn what steps were taken or not taken, outcomes, and barriers to taking action to address issues Allowed the last word to go to the participant, to fill gaps in information that may not be visible from the standpoint of the researcher Gained information about tasks HCNs perform that are most/least helpful, intending to explore aspects of a relationship from a practical, rather than emotional, starting point Illuminated further detail on communication practices and whether they reached out to HCN when concerns arose Intended to gain information about a particular aspect of HCN-patient relationships, communication, but starting with a focus on the tasks involved rather than emotional or experiential aspects of communicating Went from broad to specific details of a typical appointment, bringing forth details the patient may have thought were unimportant, but which may be revealed as important when data is viewed as a whole Rationale Beginning with a general question about experiences allowed participants to guide the discussion and share what was important to them, guiding the direction of subsequent questions. Probes seek greater detail about actual processes 70 71 Interviews. Nine interviews were conducted. Eight were conducted verbally, with seven occurring via telephone and one via video conference. One interview was submitted in written format to accommodate health needs. Verbal interviews were audio-recorded with participant consent, and later transcribed verbatim. This allowed me to engage in conversation without the distraction of taking extensive notes. Verbal interviews ranged from approximately twenty minutes to just over one hour, with an average length of about thirty minutes. The written interview produced significantly less data. However, despite the lack of breadth in the written interview, it was beneficial to the overall data collection and enhanced inclusivity in the study by accommodating a participant with differing needs. Data was collected over approximately 5 months, based on the availability of participants for interviews. The first interview was completed on January 18, 2021, and the final interview was completed on June 4, 2021. Notes were made in a reflexive journal and included observations about non-verbal communication noticed during interviews as well as researcher thoughts, reactions, and perceptions. Texts. In IE, texts refer to the often taken-for-granted written items that coordinate everyday work across multiple locations (Smith, 2006; Rankin, 2017). COVID-19 restrictions barred access to the HCN office and patient homes, so internal documents and texts could not be reviewed and included in the data, aside from passing mentions by patient and caregiver participants. Working with a patient partner allowed entry into some of the text-based practices involved in the work of receiving HCN services. For instance, A.T. described how patients track medications, items included on admission forms, and textual work HCNs engage in during patient visits. In addition, public texts available on the Northern Health website were reviewed to gain insight into the publicly stated values, goals, and strategic priorities of the organization. 72 Data Analysis. The focus of data analysis in IE is not exploring experiences, beliefs, or values of participants, but rather the routine social and institutional processes involved in daily work (Campbell & Gregor, 2008; Ng et al., 2017). Development of the problematic requires collecting multiple accounts of experiences from differing viewpoints (Campbell & Gregor). Participant descriptions of everyday experiences that differed from others sparked discussions and encouraged a deeper look at the data. These were the entry-points through which I could begin to understand the ways work is organized and coordinated by the ruling relations (Balcom et al., 2021). Specifically of interest is coordination that organizes work at the local level but comes from outside the local setting (Grahame et al., 1998). When I discovered differing perspectives or areas of tension or disjuncture in participant descriptions, these were noted in the reflexive journal and on a data map (see Appendix H). This allowed identification of the potential problematic. Data analysis was iterative and deductive, beginning with specific experiences and leading to a general analysis (Smith, 2006). I identified connections between the way things happen in everyday work and the underlying structures and systems that coordinate them. Organizing data into themes or categories during analysis can result in abstraction of data and gloss over small details and differences that are important to IE (Rankin, 2017). Formal strategies such as coding are generally not used (Smith, 2006). However, some thematic coding can be used to guide early organization of data and identify descriptions that may be relevant or important (McGibbon et al., 2010) or discourses that continually arise in descriptions (Campbell & Gregor, 2008). I used these strategies to find common threads and experiences that diverged from the majority of participant accounts. Once these areas were identified, I returned to the transcripts to pull forth detailed descriptions of what actually happened. 73 Several tasks and processes assisted with data analysis. Reflexive journaling was used to take notes during the initial stage of data collection and analysis. These reflections allowed me to identify potential threads to follow and explore assumptions that arose during interviews. Each interview was recorded and transcribed verbatim. Transcribing these myself with no assistive technology allowed me to listen closely and consider common language and tasks repeated across descriptions. This facilitated reflection on arising threads and areas that would benefit from greater detail in subsequent interviews. I read each transcript in whole multiple times and drafted descriptions of the work in which patients and caregivers engaged. I incorporated these details into maps and discussed these descriptions with my committee and patient partner. Data Mapping. Institutional practices are ruled directly and indirectly (Rankin, 2017) such as through policies, setting appointments, scheduling, and language. Creating a map of what individuals do and linking these activities to other individuals, settings, and between individuals and policies is an important part of data analysis (Ng et al., 2017). The map guides exploration of the complicated organization of the ruling relations within the organization (Campbell & Gregor, 2008) and provides a visual of the complex relationships (Rankin, 2017). Mapping helps make sense of the findings and contributes to discovering how practices are linked across locations, where disjunctures occur, and the problematic, without organizing data into themes and categories (Rankin, 2017). I created maps to identify links in the work described by participants (Appendix H). This provided a visual of common behaviours and patterns patients knowingly and unknowingly participated in, the ruling relations organizing HCN services, and the implicit social processes that organized daily work. Multiple versions of a map were created as the transcripts were 74 reviewed and discussions took place. The map was updated, redrafted, and corrected as analysis progressed, resulting in a final map laying out, in order, the steps of receiving HCN services. Rigour, Generalizability, and Validity Rigour can be addressed by ensuring experiences of participants are accurately captured (Streubert, 2011c). In this study, I used a map of social relations, member checking of transcripts upon request, and discussing portions of de-identified data with the patient partner. Generalizability is typically not a focus of IE, though the ruling relations can be considered generalizable (Smith, 2006). Participant randomization was not attempted, though I aimed to include diverse experiences. Demographic data such as age or ethnicity were not collected, as this constituted an unnecessary added risk of participant identifiability. Length of time receiving services, reasons for admission to HCN, and frequency of visits were collected, as this helped to ensure a variety of experiences were included. Techniques for ensuring validity were not described in IE literature. Campbell and Gregor (2008) indicate validity is established in accordance with the worldview and epistemology of the researcher as appropriate in the context. Validity was attended to through discussions with the patient partner, acting as a consultant in the drafting of the final analysis. Member checking increased validity through sharing final transcripts with participants and offering channels for follow-up discussion, clarification, or correction. Privacy, Confidentiality, and Anonymity Efforts were made to maintain the confidentiality of participants. There is some risk that anonymity may not be guaranteed due to the small number of participants and the size of the city. These risks were explained to participants in the Information Letter and Consent Form (Appendix E). Pseudonyms were used in all records, with individual patients identified by the 75 letter P and a number (e.g., P1), and patient-caregiver dyads identified by the letters PC and a number (e.g. PC1). Identifiable details in the transcripts, such as names, uncommon diagnoses or allergies, or potentially recognizable situations were removed or replaced with generic terms. In all presentations and publications resulting from this work, the community being studied will only be identified as a community in northern BC. The patient partner, A.T., declined anonymity after discussing the potential privacy and confidentiality risks of disclosing her identity. She opted to be included publicly as a coresearcher on this project and included on future publications, thereby being open about both her involvement in this study and her history of accessing HCN services. Digital Security and Data Storage. A digital audio recorder was used to record interviews with verbal consent from participants. Recordings were transcribed verbatim and deidentified, and audio recordings permanently and securely deleted immediately after transcription. Written transcripts were stored in password protected files on the UNBC Server using VMWare software. De-identified transcripts which were printed in whole or in part, and the reflexive journal, which included de-identified data, were stored in a private, locked filing cabinet in my home office to which only I have access. I was the only team member with access to the raw data. Data reviewed by the thesis supervisor, committee members, and patient partner was limited to de-identified excerpts and drafts of the final manuscript. With a small number of participants, there is potential for relinking data if aspects of a participant’s experience was recognized by the patient partner. The Patient Partner Letter of Transition (Appendix F) and a verbal discussion addressed this risk and made clear the expectation of maintaining confidentiality of participants. 76 Security of Data Sent to Participants. Any de-identified transcripts sent via email were encrypted and password protected, with passwords sent in a separate email. Participants without access to email who requested de-identified transcripts received these by mail. Risks of this delivery method were reviewed, and verbal permission was granted by participants. Participants were informed they could share concerns regarding the content of their transcripts and request all or part of their interview to be excluded from analysis. Participants were given details about how to contact me or my thesis supervisor to share concerns or to arrange a meeting to discuss the transcript. No participants requested follow-up or expressed concerns about their transcripts. Zoom Videoconference Security Measures. One interview was conducted via videoconference using the UNBC-licensed version of Zoom on a Canadian hosting service. A Zoom link and passcode was sent to the participant’s email address. A waiting room was set up for manual admission. Once the participant entered the meeting room, the meeting was locked. Screen sharing was restricted. I did not use Zoom recording features or chat logs. A randomized Personal Meetings ID (PMI) was used to avoid unintended access by other individuals. The use of the video feature was not disabled, as observation of non-verbal cues during an interview can add valuable data. Participants were informed they could choose not to share video if they preferred and advised to use a pseudonym rather than their legal name when signing in. Storage and Destruction of Data. I stored data in password protected files on the UNBC server using VMWare software. Hard copies will be permanently and confidentially destroyed by shredding at the conclusion of the thesis defense. Electronic versions will be securely stored on the UNBC server for up to five years after completion of the study to allow for publications. After this, they will be permanently and confidentially deleted. Identifiable information, such as the master participant list and consent forms, are stored in separate password protected files on 77 the UNBC server. All consents were collected verbally or electronically and saved electronically. No hard copies of consent forms were stored. Emails were permanently deleted as soon as electronic versions were saved. Security Considerations for Written Interviews. The written interview was submitted via email. Risks of electronic communications were reviewed with the participant and instructions on how to encrypt and password protect a document in an email were provided. Dissemination and Knowledge Translation The primary presentation of study results is a thesis document and defense through UNBC. Secondary to this will be wider dissemination and knowledge translation. I will communicate findings to stakeholders, participants, and partners of the study. I was awarded the BC SUPPORT Unit Northern Centre Graduate Studentship Award in support of this research. Research activities and findings have been and may be presented at Northern Centre knowledge sharing events and a written summary of this work was submitted to the Northern Centre. I will continue to seek out appropriate avenues to present this research in academic, professional, and public settings. For each of these opportunities, I will invite collaboration from the patient partner, as this is an important aspect of POR partnerships. 78 Chapter Four: Introduction to HCN: Busy Nurses and Good Patients IE studies describe what actually happens in daily work and activities to understand participant experiences and how they occur (Campbell & Gregor, 2008). Descriptions from the people who live and work in a setting at the local level help us understand what is missing, where disjunctures exist, and how daily work is organized on a translocal level (Campbell & Gregor). This chapter provides a description of the daily work of receiving HCN services in a northern BC city. The standpoint is that of patients and informal caregivers. Through interviews with participants, it was possible to explore the complicated, co-constructed social relations of HCN. This section explicates the ways patients engage in and respond to the daily work of HCN, and how they navigate the ruling relations that organize HCN services. A Description of HCN Services in a Northern BC City To explicate how the structures and systems of everyday HCN work are organized, I explored the everyday experiences of patients and caregivers situated in the local setting of HCN services in northern BC. I began with how participants initially accessed services. Accessing HCN Services Participants often described a smooth process of referral to HCN services. One person described experiencing: “No complications at all. Once the, the nurses got the papers on me… it was good” (P1). He vaguely remembered initiating a phone call to the HCN office: “I would imagine I called them ‘cause I moved up here with a wound” (P1). However, he could not recall specific details. He had been on the program for decades which seemed to give him a sense of familiarity navigating the system: “I used to live up here in the ‘90s… some of the staff remember me from back then” (P1). Other participants were not aware of or did not remember 79 specifics of the referral process: “Oh, I don’t know, they just came” (P7) The majority of participant descriptions of the referral process were unremarkable. One participant with complex care needs described challenges with the initial referral process, though this seemed primarily related to hospital discharge planning: “My brother refused to take me home from the hospital until he knew it was set up… he knows… somebody’s had home care set up, and it took two months before they arrived” (P3). This participant described having limited informal supports in the home and significant care needs, requiring wound care and IV therapy from HCNs and personal care from home support services. This required more time and coordination between the patient, informal caregiver, hospital, and home health services. Another participant coming home from hospital did not recall work required once referrals were received by the HCNs: “It was all arranged by the day I got out of the hospital. Home care… knew the whole plan, and it just went off like nothing.” (P2). This participant required only HCN services and had an informal caregiver living in the home and did not describe the same tension as P3 initiating services after hospitalization. Participants described being referred through their PCP: “I guess his doctor’s office sent in a bunch of forms… next thing I knew we were getting a phone call and someone was here” (PC1). Others described being referred upon hospital discharge: “when [my husband]… was sent home from [hospital]… there was a whole round table of, of people that… arranged it all for us” (PC2). Only P3 had to wait to have services arranged. However, her needs extended beyond HCN services, and it is unclear where the delay occurred. Describing her experience with HCN once she was home from hospital, P3 stated: “they phoned me and said that my doctor had said that this was needed… seemed to be pretty quick” (P3). Participant descriptions of the ease of accessing HCN services may demonstrate a well-coordinated process, or a lack of patient 80 awareness of activities happening outside of patient view. Either way, the result was most participants did not describe tension in this aspect of HCN services. Scheduling a Home Visit When scheduling daily appointments, participants typically found out what time the HCN would come when they received a phone call in the morning: “Normally I get a call between 8:00 and 8:30, thereabouts… they tell me approximately when they’ll be here” (P3). Sometimes the phone call comes in the afternoon: “Well they phone… sometimes early afternoon if it was the afternoon shift that would be coming.” (P3). One participant mentioned: “it might be better to have it, kind of in a time-frame, like say, between 9:00 and 11:00 in the morning or 2:00 and 4:00 in the afternoon” but added: “but that doesn’t really matter, because… I’m housebound anyhow” (P3). Though most participants were homebound, they did report impacts on informal caregivers: “It sort of concerns the whole family… [my husband] likes to be here in case he’s needed” (P2). Participants appreciated HCNs calling ahead with a time: “it allows you to schedule the rest of your life… it certainly allows [my husband] to plan his day” (P2). Overall, scheduling did not appear to be a source of tension. One patient-caregiver dyad had standing appointment times to coordinate visits with allied team members: “They are scheduled to come after the home support worker… our time is very routine” (PC2). In this case, care was coordinated because the supportive care tasks might compromise the bandage and cleanliness of the wound. Another participant spoke about coordination being helpful: “I usually ask them… to try to make it… before [home support] comes… Otherwise [home support] comes, gets me up, and then I have to end up going back to bed” (P7). However, her supportive care tasks were not connected to her HCN tasks, so P7 found ways to manage when sequencing care was not possible: “they try to accommodate that… 81 sometimes they can and sometimes they can’t. And if they can’t, that’s fine. I just get back into bed… and they would help me get up again… after they finished” (P7). Although preferences were expressed, participants made accommodations when these could not be met. Participants were prepared for a HCN visit any time. Some left the entire day open: “I don’t go anywhere really… I make sure I’m here all the time for them” (P1). Flexibility and availability were described as part of the daily work and responsibility of receiving HCN services and helping balance HCN workload: “I make sure I’m not doing anything on the day they’re coming… they’re doing their job and they have to be here at a certain time… it’s my responsibility to make sure I’m free” (P4). Some participants postponed other tasks to remain available: “I’d just make sure I was near the phone to let them in… make sure I wasn’t, you know, putting laundry or something in” (P3). Participants expressed appreciation and put their own needs into perspective: “I appreciate what they’re doing… if they have to go change the schedule, I’m fine with that… my leg’s not going to fall off” (P5). They described the importance of being accommodating: “if you’re needing some particular care, you shouldn’t complain. You’re getting it” (P3). This suggests participants see flexibility in the scheduling process as an expected part of the work of receiving HCN. Some participants described asking for adjustments to their schedule. One explained: “If the time doesn’t work for me, I let them know and then we go back and forth and pick a time” (PC1). Another was mindful of challenges for the HCNs when patients request changes to times: “The home care nurses set their schedule… They phone all their clients and tell them what time they’re going to be there… if our time has been changed by a half an hour… that messes up their whole day” (PC2). When patients had other appointments, HCNs and patients coordinated schedules: “I keep them advised of our appointments… So, they knew what time we’re not 82 available” (PC1). Another participant described the importance of balancing social needs: “we go out… To have breakfast… it’s an outing… I really, really look forward to” (P5). He explained: “I’ll say to the nurses… ‘can we do it… between 9:30 and 10:30 so that I can… go for brunch’ …and they’re really, really good at that” (P5). This simple, straightforward exchange around scheduling carried significant weight: “I don’t ask, and I don’t expect terribly much more from them… they’re looking after my, my needs. Rather than… just there to change a bandaid… I’m not asking for something, um, that I don’t deserve” (P5). Although participants perceived the scheduling process weighted somewhat in favour of HCNs’ schedules, there did seem to be mutual effort to ensure schedules worked for everyone involved. Visits from Regular Area Nurses versus Substitute Nurses Continuity refers to how well care is coordinated as patients move through the healthcare system. One aspect of continuity is whether patients see the same providers over time. Participants might be seen by a smaller, consistent group of area HCNs or by a larger, irregular group of substitute HCNs. When participants were seen by their regular area HCNs this typically meant two individuals whose schedules rotated: “I’ve had basically no more than five different nurses. I typically have two” (P2). Participants who experienced less continuity described frequently seeing multiple HCNs. Participants perspectives on this varied. Some seemed either neutral or positive, such as one who explained: “Well, you never see the same person. So, you don’t know who’s coming” (P3) but went on to add: “I get a variety of nurses… they’re all pleasant” (P3). Others felt positively about seeing a variety of HCNs: “I would see different nurses from time to time. I find this to be quite satisfactory because each has her own approach and offers new insights” (P6). Some participants preferred continuity: “I wish it could always be 83 [our regular area HCNs]. I understand why it can’t be” (PC1) but seemed to accept that it was not always possible. Participants described reasons continuity may not always be feasible. Staff scheduling was mentioned: “I don’t think it’s their planning… they aren’t in total control of exactly when they work” (P2). Another factor was sick calls: “if some nurses get sick and they can’t come to work… the area nurse [for another area] will come up to [my area]” (P1). General time off was mentioned: “vacation time, or you know holidays, Christmas time” (P2). Participants described heavy workloads contributing: “Oh, because they have so many patients… yeah, they are busy.” (P7). It was clear that participants, while perhaps not knowing specific scheduling logistics, had a sense of the complexity involved in coordinating HCN schedules. However, the topic of HCN continuity, and related challenges, came up repeatedly throughout interviews. The Impact of HCN Continuity. Participant experiences varied regarding continuity. For PC1, a patient-caregiver dyad receiving palliative care, the patient and caregiver each had a unique experience and standpoints. The patient felt it did not matter whether they were seen by different HCNs: “it doesn’t have any impact on my care. They’re all quite well informed about my situation, and what’s happening.” His spouse agreed to a certain extent but added: “when [a particularly challenging situation arose]… that day, we got a substitute nurse… it was just bad timing. That day would have been better for me to have one of the regular nurses who knows what I’m normally like” (PC1). This account highlighted that tolerance of lack of continuity may at times depend primarily on contextual factors surrounding a specific visit. Participants who had a strong preference for seeing regular area HCNs described negative experiences and dynamics with substitute HCNs, and positive experiences and dynamics with regular area HCNs as the reasoning for this preference. One participant described a substitute 84 HCN missing an important care plan step: “I didn’t want to say anything, because she’s there to help me… But obviously she didn’t pay attention to what was on the chart” (P5). He described his regular area HCN with whom he had developed a positive relationship: “She’s very, very kind, and helps a lot… doing what the chart says” (P5). He stated: “if I had her every day, I would be… happy… I would know that she is working, not just to what’s on the chart, but to make sure that I’m on my way to being on my two feet” (P5). Another participant felt the regular area HCNs better met her care needs: “for a while there I had different ones… they used to just come in and do a half-assed job sort of [laughs]… then they’d leave… then I got [my regular area HCNs… and they do a good job” (P4). She elaborated about the substitute HCNs: They come in… and do their job really, really fast, and leave… I feel like they didn’t take the time… I do have tender skin… I didn’t feel like they put the stuff on there so that the next bandage… it’s not gonna rip my skin” (P4) I asked P4 if, when visits went quickly, steps were missed: “Yup… My regular nurses… they know how my skin is… that was in the notes… the other nurses… don’t seem to, uh, take the time” (P4). These accounts demonstrate the importance of continuity from patient perspectives, particularly HCN knowledge of care plans, health needs, health goals, and patient potential. Description of an Everyday HCN Visit Each patient experiences their HCN visits differently depending on various contextual factors, thus at attempt to describe a typical visit is difficult. To follow is an explication highlighting aspects that recurred within participant descriptions of recent HCN visits. Understanding One’s Health Care Needs. Participants were well-versed in what to expect from HCN visits. They paid attention to visit frequency: “They did have to come every single day… maybe[for] two weeks now… we’ve done every second day” (P2). Participants were knowledgeable about reasons they received HCN: “The home care nurses we only get when he… needs wound care” (PC2) and what might happen at a visit: “he has, uh, pressure wounds… if 85 he’s needed to have, um, IV therapy… that’s always been administered by the home care nurses” (PC2) Participants knew details of care plans and products: “they… remove the packing… irrigate the wound with saline… dry everything… pack it with, uh, Kerlix… apply, um, a barrier cream… The wound is dressed with, um, Mesorb and then a Super Soaker, and then his brief” (PC2). Participants described how visits unfold and why. One caregiver described the length of her spouse’s palliative visits: “they’re here a long time… they have to fill an awful lot of vials… they examine him, they change the butterflies… we discuss any appointments… questions, or any issues” (PC1). Participants described the order tasks are completed in and why: “I was getting intravenous antibiotics… they would time it right so that they hooked the antibiotics up first before they did the leg [dressing change] and so both things were finished at the same time” (P2). The knowledge of details of care needs demonstrates the level of expertise of patients and caregivers and the engagement of patients, informal caregivers, and HCNs in co-creating and carrying out care plans and. Participants described collaborative work between HCNs and patients to learn about health needs. One participant described: “we know what we’re doing, what’s expected of us” (P2). Such interactions serve multiple purposes, such as teaching patients about potential adverse effects: “when they put this, uh, bandaid on, it would rip my skin… they put some other stuff on there [now] to make sure it doesn’t” (P4). Participants were informed about changes to care plans and why these were made: “the nurses have made decisions about… something they’re putting on my wound… they talk to me about it… why they think they wanna change” (P2). HCNs educated patients and caregivers about why tasks were performed in certain ways: “the nurse said… because [they’re] wearing… sterile gloves… [they] can feel how far [they’re] pushing the packing so that [they’re] not pushing too far… it’s nice for me to know why they’re 86 doing it that way” (PC2). Participants described performing self-care when needed, decreasing the frequency of HCN visits: “they taught me how to… disinfect it and bandage it. So, I did it myself for a while” (P7). These collaborative efforts comprised significant work for participants, time and effort from HCNs, but ultimately can help decrease HCN workload over time. HCN Workload. Participants described heavy HCN workloads and tight schedules. One person explained: “they are so very, very busy… I know they’re busy and have to get on… with their next clients” (P7). Another expressed empathy, describing HCN workloads as being beyond their control: “it’s not their fault that the hospital sends more patients home… we just have to be patient with them too” (P4). Participants recognized that unplanned care needs could arise and HCNs had to be flexible: “they’re dealing with palliative care patients, diabetics, um, who knows what else… things happen, and extra visits have to be squeezed in” (PC1). Another described how unplanned or unexpected needs meant someone else was experiencing a challenge: “if they’re late, well, who knows? Maybe, that other patient, something happened to him” (P4). In addition to unplanned patient care needs, participants recognized the added strain of staff scheduling, sick calls, weather, and road conditions causing tight schedules. However, PC1 described: “when I’ve had a horrible morning like I did this morning… when the nurse arrived… she took the time to listen to me… Always, always made the time” (PC1). This highlights that participants know despite time constraints, when issues arise HCNs will prioritize needed care. Preparing for the Visit. After receiving an expected visit time, participants described engaging in preparatory tasks. They might shower: “once I know what time they’re coming, I’ll have my shower just shortly before they get here” (P2) or begin to remove a dressing: “if I get it wet I… take the outer part of the bandage off” (P2). Participants might set out supplies or get the 87 space ready for care: “I usually have… my bag… ready there for them to use. And then I have a table set up for them to put their stuff on” (P4). Some had mobility challenges and prepared by getting into position: “If it’s just the two wounds, I’ll stay in my wheelchair. If there’s more than two wounds, I’ll take the sling… I’ll be in bed by the time they get here” (P1). Some preparatory tasks were related to HCN policies or staff safety: “I ask them to phone before they’re to arrive because we do have pets. And that’s part of… [the] regulations… they can’t be bothered by pets… I tell the dogs to go to the bedroom” (P5). Many of the preparatory tasks were related to making visits more convenient, such as establishing a routine: “we have a little thing between us… I have the door unlocked… they simply knock on the door, and we yell ‘come in’… We don’t even have to get up and go to the door” (P2). While tasks varied depending on specific needs and abilities, each participant described some sort of preparation prior to HCN arrival. While several participants described engaging in taken-for-granted tasks, it was notable that they denied being instructed by the HCNs: “I chose to do it on my own” (P4). P2, who described showering and removing the wet bandage, explained: “I have made that little plan myself, but they definitely have told me… That if the bandage were to get wet it’s better if I take it off than to, than to sit there with the wet thing” (P2). Despite not receiving specific direction to be in position and ready for care upon HCN arrival, participants regularly took initiative to do so. During, Between, and Following HCN Visits Participants described engaging in tasks during, between, and following HCN visits related to organization, convenience, health care needs, and communicating information. Organization and Convenience. HCNs may not have access to the tools, equipment, and resources of hospital settings, making some tasks challenging. Participants described thinking about strategies to make care more convenient in the home, such as hanging an IV 88 antibiotic bag: “my husband had hooked up [laughs] this thing from a flower basket hook that I had in the ceiling… the hook from the antibiotic bag could hang up there” (P2). Another described helping to keep the HCN supplies tidy and organized: “they have to always root through it to find stuff… I put the stuff all together in [a tote bag], I thought that would just be better than having it scattered all over the place” (P3). Another purchased items to organize medications: “I ordered, uh, a cart… I’ve got all the meds in there and they’re all labelled and… alphabetical” (PC1). Some practical tasks were required to manage health, such as delivering test specimens to the lab: “if we had taken blood [my husband] leaves with the blood to the hospital” (P2) and picking up supplies or medications: “I’d go to the hospital… they’d give me my [IV antibiotics]… to take home.” (P7). At times, the daily work for patients and informal caregivers to coordinate and manage care required significant efforts. Communication of Information. In describing the work of receiving HCN services, patients and caregivers also described communicating information with the HCNs. Participants described various ways this might occur. One caregiver participant organized, documented, and tracked her spouse’s health details so information could be shared: I… give them the information on the meds… I have an app that tracks them… I also keep a copy of the medication schedule, which I have done up in a spreadsheet… And I’ve got this binder… any information the nurses need I can just grab and give to them” (PC1) Sometimes, unplanned care needs arise that require further action. One participant described: “once the catheter didn’t, uh, work… So, she said, ‘Give me a call if, if it doesn’t work. And I’ll come back and, and change it’” (P7). She continued: “So that’s what happened. It didn’t work so I gave her a call and as soon as she had time she came back” (P7). This patient engaged in the work of self-monitoring a health issue and responding appropriately after the HCN left. When care issues arose between visits, participants described how they were navigated. Sometimes they called the HCN office: “I had a miserable night… [my wife] phoned home care 89 and the home care nurse basically was working with her and said, ‘this is what you should do.’ And [my wife] started to do that” (P5). Participants informed the HCNs of evolving healthcare needs: “I phoned the nursing line and told them… I had called an ambulance… so they were aware of it… ‘cause he was due for a visit” (PC1). These examples illustrate that participants must decide actions to take and when and how to share information with the HCNs when unexpected issues arise. Some participants described hesitation to call the HCNs. One person did not want to add to the HCN burden: “I shouldn’t be bothering the [HCNs]… it shouldn’t be my first call… they’ve got a job to do, and they’ve only got so much time… it may mean that they could get a little longer lunch… They need that” (P5). Participants described avoiding calling the HCN office between visits when they were uncertain about the appropriate scope of concerns for HCN attention: “I would probably call my family doctor… I wouldn’t feel that fair putting it on home care nurses… there’s… the feeling that I’d be putting them on the spot? I, I don’t feel it’s up to them to determine” (P2). P2 elaborated: “I don’t get alarmed very easy, and by the time I ever would be concerned, it would be more than I would expect the home nurse to, to do.” (P2). Reluctance to call the HCNs was not universal: “I would not hesitate to discuss… issues with the nurse if the occasion arose… The nurses have left their contact cards so that we can call if we need assistance extra to their planned visits” (P6). The varied descriptions of whether and when participants reach out to the HCN office was interesting and highlighted how context can impact patient engagement. P2’s reluctance was related to a perception of the scope of HCNs compared to the PCP, while P5 was concerned with feeling burdensome. 90 The Work of Patients and Caregivers: The “Good Patient” Participants engaged in significant work receiving HCN services. The work was collaborative with the HCNs, and tasks were often self-directed. An interesting dynamic was observed in participant motivations for this work, particularly in situations where participants put the perceived needs, preferences, or comfort of HCNs above their own. As participants described the everyday work of receiving HCN services, they alluded to attempts to increase efficiency, convenience, ease, and enjoyment of HCN work and avoid conflicts and tensions. Some descriptions indicated that participants may be motivated to be perceived as a “good patient” within the HCN-patient dynamic. The “Good Patient”: Increasing Efficiency, Convenience, and Ease of Work Participant accounts of busy HCN schedules illuminated that patients are aware of time, schedule, and workload constraints of HCNs. Participants described visits as efficient and quick: “they do their job, and, and go. Because they are so very, very busy… lots of times they wouldn’t be here more than five minutes” (P7). Participants were aware that HCNs had organizational expectations around how much time should be spent with each patient: “They’ve only got so much time that they’re allotted with a patient, from what I understand” (P5). Despite descriptions of quick, efficient work, most participants denied needing more time with the HCNs: “I get what needs to be done in that [time]. And I know they’re busy and have to get on… with their next clients… They give me the time that is needed” (P7). Participant descriptions indicated that HCNs find ways to engage in relational care within limited time allotments: “It’s not all just ‘we’re here to do a job, we’re gonna be efficient’, and they are, they’re very efficient and they’re in and out quickly, but… they make it a pleasant, worthwhile experience” (PC1). It 91 is possible that the social and relational exchanges described by participants contribute to their sense of high-quality care within a system that prioritizes efficiency. Participants described tasks to make work easier for the HCNs. P3 explained the thought process behind moving care from the kitchen to the bedroom: I thought… well, would it be better to go in and on the bed? …that just worked way better because then they didn’t have to crouch down and… I didn’t have to hold my leg up two miles in the air… there was my dresser they could put their stuff on… much easier to deal with… accessibility was much easier (P3) She described HCN body mechanics being an important consideration: “if you’re… crouched for a period of time… That can be a strain on your legs… [it’s] important… the body mechanics… to make it easier for them ‘cause they’ve got the whole day to work” (P3). P3 explored the small cost in her privacy when considering why it took time to suggest moving care: “I don’t know why that didn’t come to mind in the first place… maybe you just don’t invite people into your bedroom? [laughs] …But… that made it easier for them… it should be as easy for them as possible” (P3). Though perhaps benefiting P3 as well, as she no longer had to hold her leg up, it seemed the physical ease of the HCNs was the primary motivator in this decision. Another participant did extra work to save HCN time: It’s very time consuming… they have to hand fill a tag for every single injection. I’ve started asking them… please bring me some blank pink sheets, and I’ll have the hydromorphone ones all filled out… all they have to do is sign and initial… there are more valuable uses of their time (PC1) Though patients may benefit from efficiency as well, it seemed that making visits efficient and convenient was focused primarily on helping the HCNs. The “Good Patient”: Prioritizing HCN Enjoyment of their Work Beyond tasks to increase convenience and efficiency, participants described trying to make HCN visits enjoyable. Some tasks seemed intended to display hospitality or create a pleasant environment. One participant described ensuring her home was tidy: “They did 92 compliment me… On how clean my house was… it means some of my efforts were worth it” (P3). Another described welcoming the HCNs into their home, offering food and drink: “Whatever I can do… I’ve got a pot of coffee there, you want me to fill up your thermos? …do you want a cookie, do you want a Christmas cake” (P5). Across multiple interviews participants seemed driven to create a pleasant, welcoming space in their homes. As well as creating a pleasant environment and being hospitable, participants described social and relational engagement with HCNs. One participant used humour: “our family has always been trying to be a little bit humorous. I’m always suggesting, you know, ‘You have to deal with me because I’m such a cranky old bugger’” (P5). The use of humour was described often and seemed to be an aspect of visits that participants enjoyed: “just general conversation. Sometimes jokes and stuff… I tell them a lot of jokes… it’s, conversational. It’s pleasant. It’s [pause] very nice” (P3). Humour was also a mechanism to develop positive relationships: “some of the nurses… have kids… I’ll tell the nurses jokes… and then she tells the kids the jokes and the kids like it… I get a kick outta that… and… they get a kick out of it too” (P1). P5 described efforts to demonstrate appreciation and ensure the HCNs were happy to care for him: “they’ll say, ‘the nurses want to… come and see you! …you don’t complain, you don’t make… our lives seem miserable!’ …I like to… keep [the HCNs] …happy with me… I don’t belittle them. I appreciate what they’re doing” (P5). Expressing appreciation arose across descriptions as a priority. Participants wanted HCNs to know their efforts were appreciated and made a difference. Participants engaged socially with the HCNs. One described: “I just talk to them, and ask them how their day was… tell them to drive safely… ask if it’s cold outside… just talk” (P4). Conversations could become more personal, covering topics such as family: “We just chat with them… about the weather or the kids” (PC2).The topics described were often small talk. For 93 example, sharing details about lives and families demonstrated mutual self-disclosure. Participants and HCNs both seemed to engage in and benefit from making their time together more enjoyable. Participants described the value of the social connection with the HCNs and the importance of receiving relational care: “[our regular area HCNs] like to laugh at us… I guess we’re goofy… Humour is the only thing that keeps you going… pick me up by being joyful and cheerful” (PC1). This highlights enjoyment experienced when HCNs and patients can laugh together. Time with the HCNs constituted a primary aspect of some participants’ social lives. One person described the HCNs as a connection to the world: “as much with COVID as it is with my injury… you become very blocked off… It’s almost like being in the hospital because you, uh, aren’t out and about and seeing things” (P2). Another described the HCNs as a source of social support and connection: Talking with other people… they will tell me that… visits from home care… they look at it almost as being a social visit because they don’t get to see people… whether it’s five minutes or fifteen minutes. Just a little bit of company… sort of pulls you out of that dark spot (P5) P5’s mention of “five minutes or fifteen minutes” indicates that, though HCNs may be working within tight time constraints, extensive time may not be required to provide the benefits of social connection and emotional support within therapeutic relationships. The social aspects of HCN visits were described by participants as positively impacting HCNs as well. One participant described the HCNs as: “very positive. They come in with a, with a happy look on their face… make me believe they’re quite satisfied seeing us as well.” (P2). Some participants perceived that their personalities and the work they did to make visits enjoyable brightened the HCNs’ days: “I think I’m a friendly person… I think the nurses feel like I’m a breath of fresh air when they come here” (P1). They described efforts to uplift the HCNs: 94 “I like to tell jokes. And I think that lightens their day a little bit” (P3). When participants described the ways they interacted with the HCNs, it went beyond professional relationships, stating: “like it was your neighbour… or your kid’s friend” (P2), and “they’re all like sisters” (P1). It was common for participants to describe that the HCNs acted in ways that demonstrated the patients were important to them: “I just feel really special [laughs] and well looked after” (P2). Participants had a sense that these connections were mutual: “It almost feels like we miss each other… we’ve got some conversations that… run on and goes from week to week” (P2). These excerpts demonstrate that close, comfortable relationships can be formed within the context of HCN work. Descriptions of the closeness in HCN-patient relationships may bring forth questions of professional boundaries. One participant described having a sense that home health providers, HCNs and care aides, were not encouraged to develop strong bonds with patients. She expressed, however, that these bonds are inevitable: “you build relationships… they kind of get to be… like friends… I know you’re not supposed to get too close… they kind of frown on that, but how can you not? When they’re in your home every day” (PC2). This participant had received messaging that emotional bonds are discouraged at some level within the organization. Certain processes may contribute to these types of implicit understanding, such as the policy of rotating staff out of geographical areas: “There’s a rotation, uh, they’re in one area for a year and then they… all switch around then they’ve got different areas” (P1). Regardless of the explicit or implicit ruling relations, the reality of the daily work described by participants demonstrated that bonds naturally occur, and that within these bonds participants engaged in work to avoid or minimize tension or conflict. 95 The “Good Patient”: Avoiding Conflicts and Decreasing Tensions Participants described instances when tension could arise in HCN-patient relationships, often alluding to ways they avoided these conflicts. When participants described times their services did not go the way they expected or they were unhappy with services, their reactions varied. One participant had a challenging relationship with a previous HCN who was no longer working at the time of this study. He described quietly accepting the issue: “I never wanted to say… ‘Look it, it’s important that I get somebody new.’ …when that nurse would come… I would just say to myself, ‘It’s best that I just say nothing.’ So that’s what I would do” (P5). Even with his current relationships with the HCNs that he described more positively, there was reluctance to share concerns: When things have not gone well, I’ve always told the nurse… I don’t want anybody to get in trouble for it… I don’t want anybody to figure that I’m pointing the finger at them… when I’ve said things, the next time I’m receiving help, it’s not exactly as, as nice as it’s been in the past” (P5). Beyond not wanting to get anyone in trouble, P5 had complicated feelings related to fear of losing his HCN services: “I don’t know if I’m deserving… and I don’t really want to lose the help that I get” (P5). He spoke about times he knew the new dressing was not going to remain intact: “they’ll sometimes… put the bandaid on… I know… it’s going to pull open… I won’t say anything… I don’t want to ruffle their feathers and… make it seem like I’m… trying to… suggest that they’re not doing their job” (P5). He described that he or his wife could reinforce the dressing after the HCN left, indicating a preference to increase his self-care work rather than face possible relational consequences of voicing concerns and preferences. Participants described times they did voice concerns or preferences in their care. One caregiver felt most comfortable bringing concerns to the HCN manager: “I have contacted the supervisor, if I’ve had… concerns about something” (PC2). She described how she has 96 developed confidence over time to speak up in the moment: “Now I, I’m confident enough to say it in the moment. It took me a long time to get to that point. But I’ve learned, you have to advocate for yourself, or your person… I speak up now” (PC2). One participant described recording notes about concerns of substitute HCNs working too quickly and not being as thorough as the regular area HCNs: “I usually just write it down… I never write nothing about [my regular area HCNs] because, they do their job” (P4). When asked whether she records this to keep track of concerns, P4 confirmed this was her intention. She described taking further action: “I phoned, uh, the office, and I told them… I’d like to have [my regular area HCNs] …as much as I can” (P4). She indicated that she is now mostly seen by her regular area HCNs. When further probed whether she ever voiced concerns in the moment, she stated: “No, I, I just write it down.” (P4). These accounts highlight that some patients limited or avoided self-advocacy, while others strengthened this skill as a result of relational practice with the HCNs. “Good Patient” Work: A Potential Source of Tension So called “good patient” work demonstrated in participant descriptions is not always a source of tension or problematic. I determined that the problematic within good patient work lies in the motivations, rather than the work itself. While reviewing transcripts and creating a map of the work involved in HCN services (Appendix H: Map of Social Relations). I noticed that participants described aspects of care differently. While differing experiences are not inherently indicative of underlying tension, there were times these descriptions pointed to a potential problematic and became the entry point into exploring how the ruling relations organize and coordinate the work of HCNs, patients, and caregivers. 97 The Problematic in Good Patient Work Participant descriptions of the busyness and efficiency of HCN, continuity of provider and information, and how concerns are or are not voiced, were often followed with positive statements or disclaimers. Participants explained issues away with comments like: “I mean, everybody has an off day” (P5) or “I know that… they are overworked” (P7). Most participants hesitated to complain to or about the HCNs when issues arose and seemed to, consciously or unconsciously, distance the HCNs from complaints or concerns about services. Two potential threads emerged that may illuminate why these differences occurred, and the potential problematic in HCN services: (1) prior experiences in the healthcare system can have lasting impacts on future healthcare relationships and care seeking behaviours, and (2) when work is done to ensure patients feel known in HCN-patient relationships, this can be a protective factor in having care needs met, even in resource constrained systems. Past Healthcare Experiences of Patients and Caregivers. Participants referred to other healthcare relationships when describing their HCN services. P5 contrasted his experiences with the current HCNs with relationships with other healthcare providers: “I don’t know if it’s part of [HCN] training, but… the relationship is… not… like a doctor relationship where you just listen to what I say and do as I say… it’s nice. Being able to… work with them” (P5). He described exchanges with his current regular area HCN: “you don’t get the feeling that they’re… like a doctor. Distant in the way they talk to you… They’re down to earth” (P5). One participant described interactions with HCNs as: “very casual… there’s nothing hoity toity. There’s no time that I feel… we’re somehow being treated as if we’re not smart enough… or talked down to” (P2). While not actively comparing HCNs to other healthcare experiences, P2’s description, and 98 the fact that the HCNs not speaking down to them was notable to P2, may indicate prior experiences of being spoken to in this way in healthcare interactions. How care was provided in the home compared to the hospital was another topic that arose in participant accounts. One participant stated: “If you’re in the hospital and you’re in pain and you call, and they say, ‘Don’t worry about it. You’re not due for another 4 hours.’ Instead of trying to work with, with the patient” (P5). He described that his HCN services allowed him to remain home and avoid readmission to the hospital: “once you go to the hospital, you know darn well… there’s no relationship... They have… little time to deal with you. And they won’t have time to talk to you” (P5). P5 described his difficult relationship with a former HCN: “she would ask questions that almost sounded as though… this was a self-inflicted injury… she’s looking after me because I, I made this happen… Well, I did make it happen… my infection had gone on for about 30 years” (P5). Contrasted with this, P5 described the approach of his current HCNs as more encouraging: “the nurses say, ‘Listen, if you don’t mind helping, uh, yourself’, I said, not at all”. He described his perception that the current HCNs have the same priorities he has and show concern about his health outcomes: “they’re doing it because they care, and they don’t want to… hear… ‘we [closed] that chart because he died.’ ...you know darn well they’re on your side, and they’re looking after you as, as good as they can” (P5). He described how the HCNs understand and share his health goals: “I know darn well that the end result is trying to keep me out of the hospital and that’s the last place that I want to be”. How P5 perceives his prior experiences in the hospital may be a factor in his fears of losing the much-needed help at home. Feeling Known and Developing Relationships Participants described HCN behaviours while developing relationships. HCNs initiated conversations about things that were important to participants: “I had gotten new pictures of my 99 grandchildren, and they pay attention and talk about them and let me tell them stories” (P2). HCNs acknowledged and showed interest in what brought joy to participants: “they usually admire my… [potted plant] in the corner” (P7), and recognized sources of pride: “A couple of them expressed jealousy because [my husband] gets too well fed… she looked at [my husband], ‘Do you get to eat like this all the time? Or only when we’re coming over so that we have to be tortured’” (PC1). HCNs showed an interest in participants as individuals: “they’re concerned with, with me as a person. My life, and my family… my dogs… my relationship with my wife and, and friends” (P5). In each excerpt, participants described specific aspects of their lives that were noticed and acknowledged. The HCNs paid attention to what mattered to participants. Mutual self-disclosure fostered patient and HCN connection. Participants described how the HCNs opened up: "[Area Nurse] has [a food intolerance]… we’ve discussed different ways to make broths” (PC1). Sometimes self-disclosures went deeper: “a conversation can get started that’s pretty… surface… before you know it, you’re telling the story of, ‘…well one time this happened…’ one nurse is trying to get pregnant, and I’ll ask her about that. You know… personal stuff” (P2). One participant shared a poignant exchange after he lost a beloved pet: The ones that I’ve had on a regular basis know the names of my pets… a little one that we had for 17 years [passed] away a week ago… [Our regular area HCN], she was quite, quite emotional about that. As I was when I was telling her… you know… they’re there. They become almost a part of your family (P5) He explained how the HCN shared her own experiences: “we talk about everything from, you know, the loss of my little dog, how it affected me. And listening to their stories of their loss” (P5). While the emotional labour of mutual self-disclosure can be high, this work can have multiple benefits. One participant described how mutual self-disclosure helped them feel more comfortable opening up: [The HCNs are] very eager… or they certainly aren’t, uh, devoid of wanting to share some of their personal life … maybe that makes a difference… we’re quite private … 100 having an outsider come in could be a, a little bit of a balk to us. But… they… are willing to share some of their personal life with us as well (P2) Sharing details of one’s life and connecting over common interests and experiences entailed important relational work. When asked what the HCNs did that was most helpful, participants described the expected aspects of physical care they could not perform themselves, the convenience of being seen at home, and HCN skill and professionalism. However, the main descriptors were related to relationship-building rather than nursing care tasks. Participants described how HCNs built rapport: “comfort and camaraderie … They joke, they smile, they’re human” (PC1). They spoke of HCN approaches: “Just their demeanor, I think? …they always say hello, have a smile on their face… it’s not like they’re somebody coming in and they just go right to work and don’t speak… it’s just, it’s comfortable” (PC2). The importance of tasks related to relationship building stood out, based on the frequency with which they were included in participant accounts. When participants described times they felt uncomfortable or dissatisfied with care, they often highlighted situations in which they did not feel known, seen, or heard. P5 described not connecting relationally with HCNs and the potential negative impacts: There was a nurse… She was an old school nurse, just her disposition you could tell she… got up on the wrong side of bed more times than, than normal… I couldn’t even, joke with her… She would just look at me as if to say, ‘Don’t tell me, I’m a nurse and I’m smart and you’re just a dumb person’ (P5) The language used here by P5, referring to an “old school nurse” stereotype, might suggest impacts of the ruling relations of the healthcare system. Participants described the value of feeling known and receiving relational care. P5’s descriptions of his experiences receiving HCN services currently and in the past were an entry point into seeing the differences that occur when 101 a patient does not feel known compared to when they do feel known, and the way this can manifest in perceived care quality and power dynamics. The Protective Factors of Being Known Participant 5 described interactions with a former HCN, who was no longer employed at the HCN office during this study. He also spoke about his interactions with his current regular area HCN who saw him most often. As described, he referred to the previous HCN as an “old school nurse”, stating: “I think they had to weed out a few, they weren’t ‘bad apples’, but they… got along less with the people that they were sent to help… they were stuck in their ways”. He described how he felt when this individual left: “she was gone, and, was I sad to see her go? I was happy with what she did for me, but I was elated that she wasn’t going to come around any longer”. It was interesting to note that even while describing a challenging interpersonal relationship, P5 expressed gratitude, reinforcing the importance he placed on HCN services. Some ways P5 described interactions with the former HCN alluded to instances in which he did not feel known. He described how she entered his home, not adhering to requests: “she would bang on the door… I had always instructed the nurses, ‘the door will be unlocked, if you wish just give it a couple of light knocks and come on in’” (P5). This is a simple, concrete example of how HCNs can provide standardized and objective care, or can engage in the work of knowing patient preferences and providing individualized, patient-centred care. While the way a HCN enters a home might seem unimportant, this was a notable part of P5’s care from his standpoint. He described how he connected with some HCNs better than others, such as in the ways he used humour: “our family… always have a bit of a drier humour… when I say anything, it’s, it’s sometimes [pause] not received” (P5). P5’s interpretation of their exchanges included that the former HCN preferred he not speak during visits: “not like that old nurse was before 102 where, you know… she wanted me to just shut up.” (P5). Contrast this with P5’s earlier accounts of interactions with the current regular area HCN, who made P5 feel she enjoyed their visits and understood his humour. This type of invisible work does not fit easily into categories or textual processes such as charting and flow sheets but emerged as important work to build and maintain relationships. P5 described the relationship he developed with his current HCN with whom he had more positive interactions: [My regular area HCN]… the one that I’ve seen the most and has done the most for me… seems to be the one that [says], ‘Well, let’s get this under way …It’s not that I don’t want to come here, I just want to see you get on your feet’ (P5) He described HCN effort to provide continuity and coordinate efforts to see him: “She will tell me, ‘Well I’m going to try to get your chart for tomorrow’”. He described a time the HCN supported him during a health crisis between visits, and shared: “I don’t want to rock the boat and lose, lose somebody that’s just looking after me that well” (P5). He made frequent comments about not wanting to lose his services, being uncertain if he deserved services, and worrying about damaging relationships. P5 alluded to a power imbalance, even while showing that he perceives his current HCN-patient relationship as positive and supportive. P5 valued his HCN services: “I really appreciate what they do… without them I would’ve been gone a long time ago” (P5). Clearly, HCN services can feel like, and perhaps sometimes are, life and death. P5 was deeply grateful, even when he perceived his previous HCN-patient relationship was lacking in relational care. The relational care between the current HCNs and P5 increased his feelings of safety, thereby allowing P5 to voice his concerns and receive reassurance from the HCN. He did continue to experience fear and hesitation about the concerns he shared with his regular area HCN being communicated to the larger team, worrying that it might look like he was pointing a finger or trying to get someone in trouble. He described his 103 current HCN giving reassurance that there would not be adverse outcomes, and that she would simply make a note on his chart regarding these concerns so future HCNs were aware. Still, P5’s concerns remained that he would be treated differently if he behaved in ways he perceived as difficult. This may demonstrate the lasting damage that can be carried forward into future health care experiences when patients experience powerlessness in healthcare relationships, and the time and effort required to rebuild a level of trust. 104 Chapter Five: Discussion In this study I explicated how prioritization of sustainability, efficiency, and cost effectiveness within the healthcare system impact the ways care is provided and received in a publicly funded home care context. Using IE, I focused on the daily work of patients and HCNs and the structures and systems that organize their work. Despite the challenges of the COVID-19 pandemic limiting some research activities, the descriptions provided in interviews were rich. Data mapping, reflexive journaling, and discussions with the patient partner and committee helped identify where and how patient stories overlapped and diverged, facilitating understanding of tensions and disjunctures in the work of receiving HCN services. While patients, caregivers, and HCNs value and recognize the importance of HCN-patient relationships, the organizational structure and ruling relations do not always facilitate relationships and may act as barriers. The data highlighted the work patients and nurses do to support HCN work and maintain relationships. Though the data suggests that HCNs find ways to work around the institutional constraints and meet the relational care needs of patients and their families, the effect of this work on HCNs is unclear within the present study. Two major threads arose from data analysis, supported by participant descriptions. Patients may carry forth previous negative experiences in the healthcare system, which can impact their engagement in HCN-patient relationships. However, when patients feel known by healthcare providers, they feel more secure and empowered and ultimately their care quality is enhanced. At first, I assumed these were two parallel threads within the larger discussion. As data analysis progressed, it became evident that when healthcare experiences do not go well for patients, this has potential to become a barrier to current and future healthcare relationships. 105 Meanwhile, how HCNs and patients develop a relationship can be a crucial protective factor for patients, perhaps especially those who have had prior experiences that have been negative. In the literature, Eriksen et al. (2023) found that patients who had previous negative experiences in the healthcare system may experience lasting impacts, including loss of trust and feelings of insecurity navigating future healthcare interactions. Ivynian et al. (2020) found that even patients with good health literacy, knowledge about their health concerns, and a generally strong sense of self-efficacy may delay care-seeking when negative healthcare interactions have occurred. This aligns with P5’s experiences, described previously, and demonstrates the impact negative healthcare interactions can have on care quality. Ivynian et al. found that relationships were an important factor in whether patients seek or avoid care, and that patients who felt well supported, had good communication, and were able to develop a sense of trust with a provider were more likely to access healthcare. Their findings indicated that, though prior negative experiences may have long-lasting impacts, patients who subsequently developed positive relationships could, to a degree, reshape their view of the healthcare system. Despite intentions and efforts of HCNs, ruling practices in the healthcare system can impede development of HCNpatient relationships, impacting care quality. Ruling Relations and Patient-Centred Care: A Review of the Texts As described, restrictions related to the COVID-19 pandemic meant access to the HCN office and patient homes were not permitted for this study. Therefore, review of texts was limited and the textually mediated ruling relations remain partially invisible. Though participant descriptions allowed a glimpse into the ruling relations and how patient work and nurse-patient relationships are coordinated, the social organization could not be understood completely due to the lack of textual analysis within the confines of this study. I examined publicly available texts 106 online, to explore how Northern Health institutional values, priorities, and strategies were communicated to the public. I reviewed Northern Health’s (2020) Strategic Plan: Looking to 2023. Though there is a newer version recently release, this is the version that covered the time period during which this study occurred. Four overarching organizational values were identified in the Strategic Plan: empathy, respect, collaboration, and innovation. Participants described how HCNs demonstrate these values in their work, and the patient partner stated: “not all health care professionals show these values, but the [HCNs] live them, and it shows.” (A. Thomson, personal communication, August 22, 2021). In addition to the stated values, Northern Health (2020) lists priorities the organization strives to meet. Priority number three, “Quality”, lists an action item that staff will “embed a person- and family-centred approach in everything we do.” (p. 7). Though there are changes in the newly released Strategic Plan, the stated organizational values remain the same, and person-centred care remains an important part of the overarching vision of Northern Health (Northern Health, 2023). However, public facing texts offer no further description of what this approach entails and what is actually being done. Despite public messaging, evidence emerged in the study and literature review indicating that actual work processes may not be fully patient-centred. Some ways HCN work is organized includes heavy workloads, challenges providing continuity, and limited time allotted per visit. These may in fact work against the organizational priority of patient- and family-centred care by making it more challenging for HCNs to attend to relational care needs of patients and caregivers in the time allotted, needing to prioritize acute and/or physical care needs. Providing care centred around patients, including relational care, can increase efficiency and save money over time (Stajduhar et al, 2011). Waters and Rankin (2019) stated that 107 “[m]oney is saved when nursing time is rationed, but when time is short, nurses avoid having genuine conversations with patients… Focusing nurses exclusively on the wound… may actually cost more money in products and technology.” (p. 8). When treating patients, having knowledge of their life context is an important aspect of developing appropriate and effective care plans. Ruling Relations and HCN-Patient Relationships: Importance of Being Known Participants recognized the importance of having healthcare providers know patients in their healthcare relationships. This included knowing patients’ medical needs, family context, preferences, strengths, and other personal information. Being known in this way has a positive impact on care. When contextual factors such as home circumstances or challenges within a family are known, care plans can be tailored to the individual rather than standardized to a condition or illness (Waters & Rankin, 2019). Participants in this study believed the HCNs wanted to know them, as demonstrated by the relational tasks and behaviours they described HCNs engaging in as they provided care. This was reflected in the literature as HCNs described a sense of fulfillment and enjoyment when they were able to connect with patients (Penz & Duggleby, 2011). Funk & Stajduhar (2011) highlighted the value of patients feeling understood, which was echoed in P5’s description of how his humour was received within two very different HCN relationships. Stoddart’s (2012) study echoed similar sentiments, with one patient describing his regular nurse as genuine, because she “puts up with my stories and moans and groans… she doesn’t make me feel like a silly old fool” (p. 7). In the present study, there was evidence that when participants felt known by HCNs, they were more likely to feel their overall needs were met. Patients in Stoddart’s (2012) study described that being able to express themselves, have nurses remember them, and engaging in comfortable conversation helped them relax. Being able 108 to “just talk” during care tasks resulted in patients sharing important information that otherwise may have been missed (Stoddart, p. 7). The ability to provide relational care while simultaneously performing complex physical care tasks likely requires a high level of clinical competence and confidence. Ensuring HCN workloads account for appropriate orientation, mentorship, and professional development may enhance these skills. Feeling known was shown to enhance patient trust and willingness to disclose important information, thus improving health outcomes (Stajduhar et al., 2011) and better understanding of patient preferences, needs, and priorities (Funk & Stajduhar, 2011). As described, participants did not always require a significant quantity of time in order to feel their relational care needs were met. Some described as little as five to seven minutes being sufficient. However, participants also described ways the HCNs demonstrated knowing their preferences, needs, and priorities within that short time period. When participants in this study described feeling comfortable with the HCNs, they were more likely to call between visits when needed and have their priorities and mutual goals incorporated into their care. However, participant descriptions also highlighted times they did not feel known by HCNs, and how this impacted their perceived care quality. Ruling Relations and HCN-Patient Relationships: Barriers to Being Known Participants alluded to barriers to being known in HCN. including prior healthcare experiences, a culture of efficiency and productivity, and continuity. Comparisons were made to prior healthcare experiences, including within HCN, that impacted the ways participants engaged and made decisions in HCN services and relationships. A focus on efficient and productive services can impact the ways patients interact. When patients perceive HCNs as overworked, with limited time and heavy workloads, they are reluctant to add work, which can affect quality 109 of care and patient outcomes. Whether HCNs are able to provide continuity of care, information, and provider can also influence the ways patients and caregivers engage in care. Prior Experiences within the Healthcare System A.T., the patient partner, described her experiences navigating the healthcare system. She described inconsistent reactions from healthcare providers when patients voice dissatisfaction or concerns with their care. This was, in her experience, of particular concern for patients living with chronic health or lifestyle-related conditions. A.T. described the experiences of people in her life living with chronic conditions, who felt their interactions with healthcare providers have been impacted by judgmental attitudes, biases, and assumptions. P5 described similar experiences, including feeling blamed for his wound, talked down to, and dismissed. When patients feel they are being treated as a diagnosis rather than an individual, they may feel disrespected and dehumanized. This can be perceived by patients through tone of voice or body language, or more explicitly through lack of shared decision-making, denial of care if patients do not adhere, or ignoring, not believing, or not taking a patient’s concerns seriously (Eriksen et al., 2023). When patients experience or perceive this type of treatment, they may feel insecure, lose trust in the healthcare system, or like a burden on providers and the system (Eriksen et al.). This may result in reluctance to share concerns or delaying or avoiding future healthcare encounters or services, which can further damage patients’ health (Eriksen et al.). Funk and Stajduhar (2011) described acknowledgement and respect as crucial to developing relationships. This aligns with P5’s experiences in his current HCN-patient relationships. With his current regular area HCN, P5 described interactions in which she acknowledged his priority goal of avoiding hospitalization, engaged in positive reinforcement, recognized and encouraged 110 his capacity for self-care, and engaged in relational care through mutual self-disclosure about shared experiences and receptivity of his humour. Caregivers in Funk & Stajduhar’s (2011) study described hospital care as being on the healthcare provider’s schedule, while HCN can take patient needs more into account. This was echoed by P5’s descriptions of prior hospital experiences. Tourangeau et al. (2014) described the home environment allowing more one-on-one time, longer relationships, and patient appreciation of the services being rewarding for HCNs. This was also reflected in this study, as participants expressed significant appreciation for the care the HCNs provide even within the constraints described. Ivynian et al. (2020) identified negative hospital experiences as having potential to trigger feelings of loss of control, emotional turmoil, memories of pain, and reminders of illness. This aligns with P5’s experiences of feeling blamed for his health condition, and with the patient partner’s descriptions of challenges with biases and assumptions embedded in the healthcare system, particularly for patients with chronic conditions. When patients have had negative healthcare experiences, this may impact their future decisions about how and when to seek care, or avoidance of the healthcare system altogether. Efficiency and Productivity Cost-effectiveness and business models in health care result in nursing care being organized in a way that prioritizes shorter appointments, rationed time, and meeting care goals as quickly as possible (Waters & Rankin, 2019). Patients who perceive the HCNs as having heavy workloads, limited time, and being very busy, as P7 described, may modify their behaviour within HCN-patient relationships and the work of receiving HCN services. Research shows that patients may hold back if HCNs seem rushed or have limited time for care (Oudshoorn et al., 2007; Gantert et al., 2009). Recall PC1’s description of calling to inform the HCNs about her 111 spouse going to the hospital or P5’s description of his spouse receiving HCN telephone support to navigate a health crisis at home. These accounts highlight how HCNs are reliant on patients being active and engaged in their health management. In this study, though, P5 also described avoided sharing concerns with HCNs at times, as he was concerned about bothering them between visits or adding to their workload. Whether this is detrimental or not depends on what work is left unfinished or needs unattended. If P5 simply adds another layer of tape to his dressing, perhaps no harm is done. If a patient neglects to share a troublesome symptom, crucial care plan steps are missed, or a patient does not call for assistance when needed, the consequences may be more serious. Funk and Stajduhar (2011) reported that HCNs who took their time were seen as caring, while those who rushed were seen as abrasive or uncaring. This echoes some of P5’s descriptions of a former HCN who did not take time to connect. P4 also had concerns about rushed care, though hers focused more on clinical competence. Woo et al. (2017) indicated that patients experienced a disconnect between what they felt they needed and what they received when heavy workloads led to time constraints. Participants in the present study largely described receiving what they needed despite limited time. The concept of time and time spent was challenging to explicate in this study, however, as interpretations and experiences differed. Where one participant described getting what was needed from the HCNs, both physically and relationally, in a five to seven minute visit, another described that when visits were rushed, they felt care was incomplete or performed with less diligence. Whether these were differences in the actual quality of HCN work performed, or differences in how participants perceived the work of HCNs, is not possible to determine within the confines of this particular study. 112 Continuity of Care Continuity can be attained in several ways and helps to avoid fragmentation of care and enhance coordination of care (Haggerty et al., 2003). This can include informational continuity, in which previous information is carried forward in a patient’s care; management continuity, in which care approaches are consistent and coherent, and responsive to changing needs; and relational continuity, in which patients are able to form therapeutic relationships with a healthcare provider or group of healthcare providers (Haggerty et al.). Though each type of continuity has its own challenges and may not always be feasible to provide, HCNs can make efforts to supplement when one kind of continuity cannot be met. Participants described tasks and work that were being completed or missed when they discussed how HCN provide or do not provide various types of continuity. HCNs recalled topics of conversation from previous visits which helped participants experience relational continuity. This type of continuity, noted by Stajduhar et al. (2011), described how HCNs can break the ice and develop trust by having knowledge of patient context. Some participants in this study were not bothered by lack of relational continuity, but several valued and desired having ongoing relationships with a select few HCNs. The literature shows that having pre-established relationships with healthcare providers can foster trust and communication, with adolescent patients in Weaver et al.’s (2016) study describing a reluctance to share health concerns when there was not an established care relationship. Stajduhar et al. (2011) described patients wanting HCNs to demonstrate knowledge of their medical needs and current condition, such as asking how a new medication dose is working. This aligned with P4’s desire for HCNs to be thorough and use the correct products during wound care. Ivynian et al. (2020) also found patients had a preference for provider continuity, 113 and that when patients received care from providers with whom they had trusting relationships, they felt safer and had more confidence in the provider’s ability to make decisions. Tourangeau et al. (2014) indicated that having the same patients regularly on one’s caseload allows HCNs to provide better monitoring and more effective responses to patient needs. PC1 concurred, indicating that when challenging situations arose, she preferred to have a HCN who was familiar with them and knew their baseline states. This aligns with Ivynian et al. who found that patients may avoid or delay care when continuity could not be maintained, until they could see their regular provider. Processes can be used to maximize continuity, such as HCN assignment to geographical areas, kardexes on the charts summarizing care needs and preferences, or flow sheets for standard care pathways. However, Haggerty et al. (2003) highlight that these processes are not sufficient to ensure continuity if the actual care experiences are not “connected and coherent” (p. 1221). This was notable in the current study as participants described times their charts or care plans were not read or HCNs neglected or forgot instructions for how to enter their home. When these situations arose, participants might view this as HCNs not knowing them or not understanding their needs or concerns. This begs the question of whether a lack of relational continuity can in fact be addressed through prioritizing other types of continuity. For instance, if HCNs cannot always see the same patients, could the institutional structures and systems instead better prioritize time both for charting relational care and for reviewing patient charts prior to attending visits in the home. In addition to the work HCNs engage in to work around barriers to developing HCNpatient relationships, participants also described the tasks and behaviours in which they as patients and caregivers engaged. Some of this work facilitated relationships, while some efforts 114 patients and caregivers described engaging in might actually unintentionally contribute to further barriers within HCN-patient relationships. The Potential Problematic in “Good Patient” Work Participants described patient and caregiver behaviours that could be interpreted as attempts to be good patients. This idea of the good patient and good patient work comes up often in the literature. Waters and Rankin (2019) noted a patient describing herself as “bad” (p. 2) for being unable to adhere to her treatment plan, and “bossy” (p. 2) for making a request that would help her achieve the treatment plan moving forward. Weaver et al. (2016) explored what adolescents with cancer viewed as a good patient role, with patients describing tasks such as being willing to do what was asked of them, adhere to treatment plans, and participate in their care. The participants spoke of adhering and complying, but interestingly, focused on compliance within relationships rather than medical compliance. The patients focused on ways they could ease the work of the medical staff, show gratitude, cooperate, minimize burden, and communicate openly. Meanwhile, in Zimbabwe, Campbell et al. (2015) explored how a good patient is socially represented in the context of antiretroviral treatment for HIV positive individuals. Patients had similar ideas of what good patient work looks like, describing expressing gratitude, initiating greetings, showing enthusiasm or positivity, and avoiding complaints. Nurses in Stoddart’s (2012) study, meanwhile, described a good patient as one who was involved and engaged in their care and decision-making and took responsibility for their own health. While there are some positives to the good patient work described, such as promoting healthy behaviours, smoother visits, and positive social exchanges, Campbell et al. (2015) identified some potential negative outcomes that can occur when patients cannot fulfill the good 115 patient role or when their idea of what it means to be a good patient does not align with the healthcare provider. Relationships can be hindered or break down, treatment plans can be undermined, and patients may feel distressed, uncertain, hesitant, or even delay or avoid healthcare services. In the present study, patients described times that good patient work was mutually beneficial. For example, using organizational and communication tools to share information, giving back to the HCNs by making them laugh or offering refreshments, and showing gratitude and empathy towards the HCNs. The present study also revealed examples of good patient work having negative impacts, such as not speaking up when care plan steps were missed, avoiding calling the office between visits so as not to increase HCN work, and changing the way they communicated in order to avoid unpleasant interactions. I began to identify these descriptions as a potential problematic. Initially, the patient partner was uncertain. She wondered whether these were simply examples of common decency, politeness, compassion, or sociocultural norms. Upon further discussion, we determined together that there seemed to be differing underlying motivation between participants. When participants engaged in good patient work for reasons that were mutually beneficial or neutral, this did not present a source of tension. When good patient work was motivated by discomfort, fear, selfpreservation, or concerns of being labelled, this indicated a potential problematic in the organization of HCN services and brought forth the question of what ruling relations organize this work. Patients are aware of staffing issues, wait times, difficulty accessing primary care, and other resource constraints. This influences the more positive motivations for good patient work, such as gratitude, compassion, and respect for time limitations. It also influences some of the problematic motivations for good patient work, such as being afraid of losing access to a much- 116 needed service, guilt over taking up space in a resource constrained system, or previous negative experiences in the healthcare system. Participants described organizational structures and systems that made it challenging for HCNs to provide relational care. Recall P7’s description of how busy the HCNs are and P5’s description of HCNs having set time allotments. The literature shows that families struggle to open up to HCNs when time is limited (Oudshoorn et al., 2007; Gantert et al., 2009). One can presume that patients, particularly those wanting to be perceived as a good patient, may modify behaviour to decrease their perceived burden if they believe the HCNs are overworked. Participant accounts demonstrated times they monitored and changed their behaviour. PC1 wrote labels for the nurses for her spouse’s pre-drawn medications and P5 avoiding voicing concerns about his care. The descriptions of their reasons differed, however. PC1 described her work as aiming to relieve HCN time, while P5 described fears of losing his services. Both situations resulted in behaviour modification, but while PC1’s behaviours may not be problematic, the fear motivating P5’s behaviours did represent a source of tension in the organization of his services. However, even a seemingly positive trait such as gratitude can be problematic in some contexts. A culturally accepted practice of expressing gratitude that is embedded within the ruling relations can advantage certain people over others (Day et al., 2020). For instance, if a patient in the midst of a health crisis is not equipped to express gratitude, they may not fit into the ruling relations that coordinate and organize good patient work. P5 relayed concerns about losing services if he behaved in ways he perceived as difficult, which aligned with caregivers in Gantert et al.’s (2009) study, who feared loss of service or poor treatment of their loved ones. A.T. recalled HCN policies relating to home and clinic visits, and that patients may be asked to come to the clinic even if initially being seen at home. A.T. 117 wondered whether conversations about policies such as this might leave some patients feeling a need to be compliant to avoid being penalized by losing home visits. This may be especially relevant to those with difficult prior healthcare experiences or those who are in a grey zone of finding it difficult to leave the home but not being completely homebound, such as P5. This discussion prompted consideration of why motivations behind daily HCN patient work differed and how HCNs and patients can work around the ruling relations leading to these tensions. Ruling Relations and Coordination of HCN-Patient Relationships Some participants described the work in which they engaged for relationship development and becoming known. They spoke of what feeling known looked like. This included practical aspects of being known such as whether HCNs reviewed care plans and charts. It also included relational aspects such as HCN knowledge of preferences, hobbies, and family dynamics. These descriptions were consistent with Funk and Stajduhar’s (2011) study, noting the importance of HCN knowledge of patients that extends beyond their medical information to include details of their context. While knowing a patient’s medical care needs is crucial to providing high quality care, both participants in this study and data from the literature indicated that it was not sufficient to know only a patient’s medical information for patients to feel known. The mutual efforts required to know one another were common threads throughout the study and the literature. Gantert et al. (2008) and Funk and Stajduhar (2011) described how relationships were built through sharing stories and details about one’s life context. This was reinforced in the findings of this study, with participants describing forming connections through mutual self-disclosure and shared experiences with the HCNs. Participants described a bond that developed through interactions and conversations about hobbies, shared food intolerances, loss of pets, and pregnancy and parenting. The literature showed mutual self-disclosure helps patients 118 and caregivers feel comfortable connecting with HCNs (Gantert et al., 2009; Funk & Stajduhar). This was echoed by P2, who described the private nature of her family and that the HCNs sharing about themselves made it easier to open up. Participants described sharing their own stories and asking HCNs about their lives, giving patients a way to express their interest in and caring for the nurses. This too was reiterated in Gantert et al.’s (2008) study, in which patients described wanting to hear about their nurses’ life experiences to connect. Recall PC1 describing the uplifting effect of being able to laugh with the HCNs during difficult times. This highlights the ways laughing together can uplift spirits and improve quality of life. Beyond being a good patient or HCNs gathering knowledge needed to do their work, there seemed to be a genuine desire for human connection within HCN and patient work. As alluded to earlier, there is a system in place determining how much time is allocated for each patient. Though one patient did refer to this, and others to the time limitations, what was overwhelmingly visible in the descriptions was when participants felt valued by and connected to the HCNs, the time limitations were not at the forefront of participant experiences. HCNs treated participants in ways that made them feel cared about and like they had a special bond. This arose in the literature as well, with patients and caregivers appreciating connections that felt like friendship (Funk & Stajduhar, 2011; Gantert et al., 2008). Participants both in this study and in Woo et al.’s (2017) study described clinical competence, knowledge of care plans, and remembering routines as contributing to feeling known, but relational aspects of their care were more notable to participants in discussions of what HCNs did that helped most. HCNs identified goals that were important to participants, such as when P5 described how HCNs drew on his priority goal of avoiding hospitalization to encourage his independence. Compared with a former HCN who, P5 perceived, used more negative reinforcement to try to encourage 119 behaviour change, the current HCNs had developed rapport and come to know the approaches that would be most effective for P5. This aligned with Oudshoorn et al.’s (2007) study that found patients feel empowered if HCNs identify their goals and what is important to them and incorporate it into their care. The Impact of Location, Language, and Power HCN services are organized by the ruling relations of the home and community care and the larger healthcare system. The work in which participants and HCNs collaboratively engage while receiving and providing HCN services involve interactions between location, language, and power. Though these are occurring at a local level, within patient homes, they are organized at a translocal level. The location of the home is described in the literature as a more comfortable care environment than the hospital (Giesbrecht et al., 2014; Funk & Stajduhar, 2011; Ganann et al., 2019). Location does not refer only to the home, hospital, or facility, but also to how space in the home is used. Recall P3’s thought process behind moving the location of care from the kitchen to bedroom. She referenced it being strange to invite someone into your bedroom, but became comfortable with this over time. This demonstrates how location of care can have important implications to patients. It highlights both the intimacy of the location and the ways relationships between patients and HCNs can become more comfortable, allowing boundaries and access to shift. The social space in the home is useful in relationship development, as described by Giesbrecht et al. (2014) and reflected in this study. The space can be used to connect, such as by asking about photos, and can be used to show respect for boundaries, such as allowing patients to select the location for care. In a broader sense, care in the home is cost effective when compared to the hospital and likely has equal effectiveness (Curioni et al., 2023). When patients have 120 difficulty leaving the home, HCN can relieve the burden on patients and families to attend a clinic. Thus, the social organization of HCN aims to reduce overall healthcare expenditures, improve efficiency, and increase comfort and support of patients. The language and discourse commonly used within HCN services arose both in the literature and in this study. An earlier discussion centred around P5’s description of a prior relationship with an HCN. He referred to her as being “old school” and felt that she preferred he not speak. Whether P5’s accounts of these interactions aligned with the HCN’s actual behaviours or intentions, or his perceptions were influenced by other contextual factors such as prior healthcare experiences or beliefs about what old school nursing means, is impossible to determine. This view aligns with Stoddart’s (2012) findings of power imbalances between patients and nurses. They reported that older patients who held beliefs about healthcare providers being the experts or knowing best were reluctant to challenge or question providers. Nurses in their study indicated these views created imbalances in the nurse-patient relationships. Stoddart found that this seemed to decrease with younger patients. Current trends in the use of particular language is moving away from the hierarchical, expert-model upon which healthcare has long been based. Despite change slowly occurring, remnants of the hierarchical social organization of the healthcare system remain firmly in place in many areas. The outcome of P5’s experiences were fear and anxiety about losing his services or being treated poorly if he was not compliant with what he perceived to be the expectations. This highlighted a concerning power imbalance. In the literature, Gantert et al. (2008) described a patient who, when a HCN was too busy to show interest beyond the medical needs, felt like “just another… little piece of her work” (p.28). Stoddart (2012) described patients who had previous institutional experiences, whether healthcare system or otherwise, that led to feelings of 121 powerlessness within an institutional setting. Patients described needing to “jump through the hoops” and fit into the “way of working” of the healthcare staff (Stoddart, p. 6). These descriptions represent what happens when the ruling relations of standardized care and patient compliance lead to patients being treated as a diagnosis or case, rather than an individual who should be seen, respected, and understood beyond their medical needs to receive personalized care. Other sources of power imbalance arose in the study data and correlated with the literature. Oudshoorn et al. (2007) described the types of power held by HCNs and patients, with HCNs holding positional power in their roles as healthcare providers within the ruling relations of the healthcare system. Meanwhile, patients lack positional power and primarily hold personal power in their roles of receiving health care services. Personal power was visible in varying degrees in the present study. PC2 described her journey of developing confidence to act as an advocate for her spouse, while P4 described keeping track of concerns that arose within HCN work and calling the HCN manager to request changes to services. Other participants described situations in which they lacked or consciously limited their personal power, such as P5 withholding complaints due to concerns of losing services. Campbell et al. (2015) described the limited control patients have over factors of their clinical experiences such as access, but that they can control how they behave and are perceived in interactions. Patients might try to avoid causing irritation or annoyance to improve relationships, increase support, and make visits more pleasant. Returning to P5, his descriptions demonstrated how the social organization of good patient work in HCN can be problematic, and how developing positive therapeutic HCN-patient relationships can be a protective factor for those with previous negative healthcare experiences. 122 P5 was afraid of losing services that he highly valued. Ivynian et al. (2020) found that when patients and providers can communicate effectively, and when patients can be seen by the same provider or small group, they feel more supported, develop stronger trust, and are more likely to seek the care they need. Though P5 still felt some reluctance, it was clear that he felt increased safety in his care seeking as his relationship with his current area HCN developed. Campbell et al. (2015) found that patients would engage in work to create a “good patient persona” (p. 9) as a way to influence their healthcare experiences to be more positive, receive better care, and demonstrate that they deserved the services they received. When healthcare services are organized in a way that allows these types of ongoing relationships to form, patients will both feel and likely be safer in the care they receive. Prioritizing continuity, communication, and adequate time for care, charting, and chart reviews will improve patient care. Patients described the value of feeling known and receiving relational care. When this does not or cannot occur in the way patients want or need, especially for patients who have had challenging healthcare experiences in the past, this reinforces power imbalances in the organization of HCN and the healthcare system. However, there are ways to counter these negative experiences. Ivynian et al. (2020) found that when patients have positive interactions and relationships within the healthcare system this can help reshape, to some extent, their view after negative or traumatic experiences. While relational care and therapeutic relationships can be maintained for some patients through 5-minute visits, there needs to be an awareness that some patients, especially those with significant history in the healthcare system, require more time to develop trust. Campbell et al. (2015) posited that patients who find it challenging to engage in good patient work often receive harsher treatment. Rather than intentionally not adhering to care plans or aligning with the implicit expectations that govern healthcare services, 123 some patients may not be able to navigate and determine the unwritten rules and roles they are supposed to be following (Campbell et al.). These patients may have poorer quality of life, find care interactions exhausting, or feel overwhelmed within institutional settings, and often require more support, not less. Although significant challenges and barriers exist within the constraints of the healthcare system, when HCNs and patients engage in therapeutic relationships, this can be a major protective factor towards ensuring care quality is high and patient needs are identified and met. Impact of this Research This study contributes three overarching discussions to the literature and HCN practice. First, the findings highlight the importance of ensuring the ruling relations that organize HCN work acknowledge and prioritize relational care of patients. Second, this study demonstrates how HCNs and patients find ways to work around systemic constraints to come to know one another and meet patient’s relational care needs. Third, this study illuminates some important questions to answer in future research. It is important that HCNs know the positive impact of the relational care they are providing, and that relatively small efforts can have large benefits to patients. In the current study, participants described the impact of shared jokes, running conversations, and acknowledgments of efforts. Regardless of time constraints, participants described that, when they have unplanned care needs, the HCNs always make the time to provide the needed care. The social and relational exchanges described by participants demonstrate that high-quality relational care can be and is being provided within a system that prioritizes efficiency. Acknowledgment and recognition of the importance of this work at a managerial and leadership level is crucial, particularly following the pandemic and in the current human resources crisis for nursing. It is 124 crucial that the often-invisible labour of relational care be prioritized at an organizational level so that time allotments account for this important care. Weaver et al. (2016) described ways medical staff could better support patients, through open conversations with patients about what they perceive their roles to be and ways they try to be good patients. This can help the health care team engage in ways that meet the social and relational roles that patients define as embodying good care. It can allow providers to reassure patients that calling between visits, correcting mistakes in care plans, and voicing preferences and concerns are important ways patients can participate in managing their own health. Being aware of patients’ prior healthcare experiences can help HCNs develop a better understanding of patient goals, priorities, and needs. An important consideration is that it may not always be possible to provide equitable care in developing HCN-patient relationships. If patients are not willing and able to engage in the work of developing and maintaining relationships, or if their engagement is made difficult or impossible due to system or societal constraints, a therapeutic relationship is unlikely to be formed (Gantert et al., 2008; Gantert et al., 2009). Alternatively, if a patient is very wellsupported by friends and family and has a PCP who is easily accessible, perhaps they need less support than another person who does not have the same resources. As such, HCNs need to consider a patient’s context, strengths, and needs when prioritizing how time is spent. Advancements in incorporating HCN more actively into primary care teams, as opposed to remaining a largely separate service would facilitate more collaboration and role clarity and create a wider, more comprehensive safety net for patients. Austin (2012) discussed the risk of nurses experiencing moral distress, describing how systemic shifts to prioritize efficiency and productivity can result in nurses feeling, or being 125 pressured to feel, greater accountability to the organization than to patients and families. Humphries and Woods (2016) found that moral and ethical issues in nursing tend to be predictable, recurring, widespread, and related to the organization rather than individual nurses. These issues tend to be practical in nature and linked to constraints that cause tensions between what a nurse feels they should do compared to what they are able to do. Identifying the strains under which staff provide care in a resource-constrained system is crucial if burnout and staff turnover is to be prevented. Implications for Future Research Future studies should explore whether and how patients share concerns about their services. Attention must be paid to reasons for hesitancy to share concerns. Exploration into patient concerns about over-burdening already busy HCNs, fearing negative consequences to voicing concerns, or other barriers to reporting concerns would add to this topic. Exploring the work patients and caregivers do to increase efficiency, convenience, and ease of work for HCNs, and the impact this has on patients and caregivers, would be valuable, particularly what guides or coordinates the work within the ruling relations. Seeking a greater understanding of patient motivation for how they prepare for a visit from the HCNs would facilitate greater understanding of those behaviours. Facilitating participation in research for recipients of HCN services who have experienced marginalization or have had negative experiences in the healthcare system is important. This can allow us to describe and address potential inequities that arise between patients who are able to engage in good patient work and those who may not have the capacity to do so. Studies to examine how HCNs incorporate relational care into time-constrained visits to improve overall care are needed, sharing what works well and highlighting activities that need to 126 be accounted for in planning workload. Exploring how HCNs who do incorporate relational care into their time-constrained daily work are feeling, especially experiences of strain or burnout, missing breaks or expending effort beyond paid hours, or distress about perceptions of care quality not being sufficient, is important. These crucial conversations are especially relevant in the current nursing shortage and may highlight the hidden costs to HCNs of attempting to provide relational care within a constrained healthcare system. Finally, as this study was limited due to the COVID-19 pandemic, a more comprehensive IE study incorporating field work, observations of HCN work and patient visits, and a thorough review of the relevant texts would add value to the literature. Contributions from the Patient Partner Working with a patient partner on this study was a valuable learning experience, adding significant benefits to the study. In POR, patient partners improve research through sharing their perspectives and ideas, guiding potential directions research can take (Ludgwig et al., 2020). A.T. provided input that participants could not, as her contributions went beyond interviews regarding her own experiences with HCN. She engaged in data analysis, contributing knowledge of her own experiences while considering the overlapping and diverging experiences of others who had received HCN services. This facilitated discussions of why some experiences aligned while others did not. Discussions with A.T. were enlightening, and often led to what we referred to as “ah-ha” moments. Often, these came as a result of A.T. asking a question borne from her own experiences. These often prompted me to recall something from the transcripts that, at first glance, may not have seemed important. Once illuminated by A.T. I was able to identify areas in the descriptions that required further exploration and explication. This allowed us to come to a 127 deeper understanding of why some experiences differed from others. A.T. helped identify assumptions I held prior to engaging in this study by asking questions and sharing her perspectives. At times, A.T. refocused our discussions in directions aligned with IE. When discussing the fears one participant had about losing services or being treated differently, A.T. brought up HCN policies that are communicated in a document at the initial HCN admission visit. She considered how these policies may be understood differently depending on one’s prior healthcare experiences. This example demonstrates the value a patient partner can bring to an IE study when they are provided with appropriate information and knowledge to develop their research capacity in the methodology. Beyond contributing to the study, A.T. enjoyed personal gains through her engagement. She described appreciating the opportunity to give back to the HCNs who had provided care to her and her partner. She felt that her involvement in the study, and the potential to explore ways to improve HCN services, was a way to pay forward to future recipients of HCN services. A.T. described a catharsis involved in engaging as a patient partner. The POR literature describes consistent experiences to what A.T. described, with Black et al. (2018) finding that many patient partners describe POR work as rewarding, meaningful, and that patient partners find value in being able to give back. My experiences as a novice student researcher were valuable. I was able to see first-hand the importance of including patient partners in healthcare-related research. Both A.T. and I developed and strengthened skills around communication, knowledge translation, and collaboration, benefits which were reiterated by Black et al. (2018) and Ludwig et al.’s (2020) works. We found that we developed a sense of comradery and solidarity in working together, as 128 referenced by Abma (2019). These benefits highlighted the importance and value of incorporating POR approaches into research. Some key learnings about POR included that this approach is appropriate for a wide range of individuals and teams. In this study, the process was led by a novice student researcher and a patient partner with limited research experience. We were able to learn, develop skills, and ultimately collaborate to add value to this study. POR does not have to follow a strict, one-sizefits-all approach. In this study, a traditional POR approach was not followed as the patient partner was not involved until data analysis. However, I learned that adding some POR approaches is preferable to neglecting to incorporate POR at all. Finally, I learned that POR must not be paternalistic. The patient partner was navigating a challenging period of her life as a recently bereaved wife. I initially hesitated to approach her about becoming engaged as a patient partner. However, rather than taking it upon myself to determine whether a potential patient partner with perceived vulnerabilities was able to engage in the study, I gave her the opportunity to determine this for herself. Once she expressed her willingness and excitement to become engaged, I focused on ensuring there were appropriate supports and safeguards available, should a need arise. This was a shift from my initial paternalistic instinct of wanting to protect, to one of support and collaboration. Limitations Many of the limitations of this study arose from the COVID-19 pandemic and resulting constraints upon healthcare-related research. Ideally, this study would have included interviews with patients, patient-caregiver dyads, and HCNs; observations of HCN work and HCN-patient interactions; field work in the HCN office; and review of the texts that coordinate and organize the work of HCN services. Unfortunately, only virtual or telephone interviews with patients and 129 patient-caregiver dyads were permitted during the pandemic. As such, there are gaps in the descriptions and potential for missed sources of tension or problematic. One limitation, unavoidable due to the pandemic, is the impact of being unable to engage in more thorough textual analysis. This gap results in a portion of the ruling relations remaining invisible and unknowable. Future work should examine the important texts in HCN to understand the social organization of patient work and HCN-patient relationships more completely. Inability to engage in a fulsome textual analysis impacted my ability to clearly explicate the extralocal ruling relations in HCN, which is a gap that should be addressed in future studies. Another potential limitation was related to recruitment methods. Being able to engage in field work would have facilitated in-person recruitment. This may have led to increased engagement from patient and caregiver participants, as I could have introduced myself and the study prior to patients deciding whether they wanted to participate. I had to rely upon the HCNs to deliver the flyers to patients. Limitations may have arisen from this, such as inability to determine how many patients received flyers through this method of recruitment. HCNs may have consciously or unconsciously spoken about the study in a way that encouraged or discouraged patients from participating, which may have been a limitation. The HCNs may have applied the inclusion and exclusion criteria of the study in deciding which patients would receive flyers. Although the first limitations could not be mediated, the second two were mediated by giving instructions to the HCNs that they should simply hand flyers out to each patient seen that day, and that any questions should be directed to me to answer. However, despite these attempts, I had no control over the actual processes used by HCNs in the field. 130 As recruitment relied on patients and caregivers volunteering in response to a flyer, it is likely that the volunteer pool included a higher proportion of people who have the personality traits of so-called good patients described in the study findings. Patients who struggle to engage in the extra tasks of good patient work, or who experience marginalization in the healthcare system, were probably less likely to volunteer to be involved in this study. Volunteer participants might have felt that it would be helpful to contribute to research, share praise for the HCNs, or assist me in my student role. This may have skewed the results in favour of demonstrating patients who put forth significant efforts to assist the HCNs, who were engaged and active in their health and care plans, and who felt largely positively about their HCN services. During data collection, I accommodated one participant’s request to engage in a written rather than verbal interview due to health challenges. The written interview produced significantly less data than the verbal interviews, and there is strong likelihood that valuable depth of data was lost using this format. However, I recognized the importance of inclusive research and so, despite considering this a limitation, it added value by allowing this participant to engage and have her voice included in the study. For future studies, I would consider alternative methods of gathering written interview data, such as scheduling multiple written exchanges to allow for a back-and-forth or utilizing technology that allows for more of a conversational style of written interview. Of the interviews conducted, only one patient-caregiver dyad selected a video conference interview, and the rest were conducted via telephone. This meant I was unable to pick up on some of the non-verbal communication cues that are visible when in person or on video, which could have enhanced the conversation. However, many of the participants were older and less comfortable with technology. In-person interviews would have been ideal had there not been restrictions due to the pandemic. 131 Conclusions This study reinforces the value of HCN-patient relationships and the importance of attending to patients’ relational needs. It highlights the systemic challenges around workload, time constraints, and continuity of care, and the mutual work required by patients and HCNs to develop and maintain relationships. The study findings added to the literature by demonstrating that it is possible for patients to feel their relational needs are met even in limited timeframes. The descriptions of how patients and HCNs accommodate having limited time per visit were enlightening and provided insight into how HCNs and patients can work around these constraints and find ways to connect relationally in short timeframes. Findings highlighted that knowing and being known within HCN-patient relationships can be a protective factor in a constrained healthcare system. This is particularly important for vulnerable patients who may have had negative experiences accessing healthcare services in the past or who engage in work that may result in neglecting their own needs to fulfil a good patient persona. Participants described HCNs as friendly, supportive, and engaged despite working within resource constraints. Patients are perhaps more aware than expected of the way HCN work is coordinated at an institutional level, referencing heavy workloads, limited time, and staffing struggles. Despite this, patients were, by and large, extremely complimentary towards the HCN and demonstrated deep levels of gratitude. HCNs can engage in small relational efforts while providing care that have large impacts on patients, such as having a cheerful mood, remembering small details about a patient’s life, asking about family, or complimenting a hobby or the home. HCNs sharing small details about their own life helps patients feel comfortable and connected. Encouraging patients to voice concerns, call the office when needed, and express care 132 preferences can help combat some of the negative outcomes that may occur when patients strive to fit into a good patient role in ways that potentially neglect their own health needs. Further research using an IE approach incorporating the standpoint of HCNs, patients, informal caregivers, and management would be beneficial. Observations of how these individuals engage and how their work is organized would help to answer some of the remaining questions and gaps in this study. This may illuminate systemic changes that can help make prioritizing relational care more feasible within HCN. 133 References Abma, T. A. (2019). Dialogue and deliberation: New approaches to including patients in setting health and healthcare research agendas. Action Research, 17(4), 429-450. https://doi.org/10.1177/1476750318757850 Adams, A., Williamson, A., Sorkness, C., Hatfield, P., Eggen, A., & Esmond, S. (2017). 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Journal of Wound Care, 26(7), s4-s13. https://doi.org/10.12968/jowc.2017.26.Sup7.S4 144 Appendix A: Literature Review Search Strategy Keywords Database: Key words to capture the area of home care nursing Key words to capture patient care and nursepatient relationship Key words to capture location CINAHL Home health agencies OR home nursing, professional MEDLINE Home care services OR home care agencies Quality of nursing care OR quality of health care OR patient-centred care OR continuity of patient care OR nursepatient relations Canada Quality of health care OR patient-centred care OR nurse-patient relations OR continuity of patient care Canada Table A1: Keywords for database searching for search “A” – CINAHL and MEDLINE Database: Key words to capture the area of home care nursing Key words to capture structures and systems impacting nursing work Key words to capture location CINAHL Home health agencies OR home nursing, professional MEDLINE Home care services OR home care agencies Task performance and analysis OR workload OR workload measurement OR nurse-patient ratio OR health services needs and demand OR organizational efficiency Canada Task performance and analysis OR workload OR personnel staffing and scheduling OR health services needs and demand OR efficiency, organizational Canada Table A2: Keywords for database searching for search “B” – CINAHL and MEDLINE Database: Key words to capture structures and systems impacting nursing work Key words to capture area of home care nursing, patient care, nurse-patient relationship, and location Web of Science Health N2 service* N2 need* N2 demand* OR organization* N2 efficien* OR productivity* OR workload OR nurse-patient ratio Home N2 nurs* AND Canada AND continuity N3 care OR Home N2 nurs* AND Canada AND “nurse-patient relations*” OR Home N2 nurs* AND Canada AND patient N1 cent$red OR Home N2 nurs* AND Canada AND quality N2 care Table A3: Keywords for database searching for search Web of Science Database: Key words to capture area of home care nursing Key words to capture patient care and nurse-patient relationship Key words to capture structures and systems impacting nursing work Key words to capture location Business Source Complete Home health care OR home care OR home nursing OR home health OR homecare OR community-based care OR community care AND Nurs* OR registered nurse Not applicable – adding these concepts yielded no results Efficien* OR productiv* OR workload OR “need* and demand*” OR “nursepatient ratio” OR care N2 quality British Columbia OR British Columbian OR BC OR Canada Table A4: Keywords for database searching for Business Source Complete Canadian Journal on Aging, 27(1), 23-34 The key to me: Seniors’ perceptions of relationshipbuilding with in-home service providers Author(s), Title, Journal Gantert, T. W., McWilliam, C. L., WardGriffin, C., & Allen, N. J. Sample: 15 senior clients receiving care from a south western Ontario home care program Method: Interpretive phenomenology Face-to-face semistructured indepth interviews; field notes; immersion and crystallization strategy for interpretive analysis; member checking; peer review Location: Ontario Year of Publication 2008 Aim: to gain an in-depth understanding of the facilitators and barriers encountered in relationship building within in-home context; inform more client-centred approaches to health care delivery to seniors Aim / Method / Sample / Model Purpose: to explore senior clients’ perceptions of their relationships with those who provided their inhome care Organization / System / Work Environment -contextual factors as facilitators or barriers to relationship building: (1) have/not have time to build relationship; (2) have/not have continuity -relationship building requires time; no time leads to frustration and inability to build relationships (limited length of time, don’t have time to talk) -Continuity: contact with same providers facilitates relationship; infrequent contact with multiple providers impeded relationship (don’t have to go through explaining, easier) -when continuity disrupted by scheduling, had to continually restart relationship-building process (may see what needs to be done, but not familiar with the routine, don’t know me and I don’t know them”) Relational / Interpersonal -relationship building: dynamic, non-linear; facilitators/barriers: (1) relate (appreciate/don’t appreciate); maintain independence vs. resign to care can be difficult; (2) connect through context (prioritize/don’t prioritize connecting); desire connection, feel important/valued by provider; (3) mutual knowing (make/don’t make effort); becoming acquainted/known, time for conversation, mutual disclosure; (4) balance knowledge, status, authority (accept/don’t accept contribution); balance own needs, motives, contributions, expectations with provider; equity; (5) create shared pattern (facilitate/impede contributions); discover strengths/limitations, achieve goals; (6) build/maintain bonds (facilitate /impede reciprocity); value emotional connection; self-monitor; offer caring/friendship Appendix B: Literature Review Matrix Sample -providers: beyond biomedical focus -mutual knowing -active vs. passive to build relationship -paternalistic approaches seen negatively -emotional labour of relationships invisible/overlooked -investment in staffing to provide time/continuity for relationshipbuilding; cost incurred may be offset - relationshipbuilding in HCP curricula -care providers well positioned to refine relationships Research Implications: -better understand discrepancies in ways of relating to care providers; types of services provided and/or context in which care is delivered? Implications Limitations: -not generalizable Strengths / Limitations Strengths: -several insights may be applicable in other health care contexts, particularly community-based health care -consistent with the literature 145 146 Appendix C: Ethical and Operational Approval University of Northern British Columbia Certificate of Ethical Approval for Harmonized Minimal Risk Behavioural Study Research Ethics Board University of Northern British Columbia 3333 University Way Prince George, BC V2N 4Z9 Tel: 250-960-5555 Also reviewed and approved by: Principal Investigator: Board of Record REB Number: Primary Appointment:  Northern Health Board of Record: University of Northern British Columbia Erin Wilson UBC REB Number: H20-01420 Study Title: The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the NursePatient Relationship in Northern British Columbia Study Approved: July 31, 2020 Expiry Date: July 31, 2021 Research Team Members: Sponsoring Agencies: Caroline Diane Sanders Rebecca Stent - BC SUPPORT Unit - University of Northern British Columbia Document Name Version Consent Forms: UNBC Information and Letter of Consent - PatientsInformal Caregivers-Substitute Decision Makers 3 July 29 UNBC Information and Letter of Consent - Nurse 3 Informants July 29 Advertisements: Documents included in this Proposed Script for HCNs 1 approval: Questionnaire, Questionnaire Cover Letter, Tests: Preliminary Interview Questions for Nurse 1 Informants Preliminary Interview Questions for Patient 1 Informants Letter of Initial Contact: Letter of Initial Contact for Nurses 1 Other Documents: Reference List (Section 5.1.B.) 1 Date July 29, 2020 July 29, 2020 May 14, 2020 May 14, 2020 May 14, 2020 May 14, 2020 May 14, 2020 This ethics approval applies to research ethics issues only and does not include provision for any administrative approvals required from individual institutions before research activities can commence. 147 The Board of Record (as noted above) has reviewed and approved this study in accordance with the requirements of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2018). The "Board of Record" is the Research Ethics Board delegated by the participating REBs involved in a harmonized study to facilitate the ethics review and approval process. Your application has been approved, however research can only proceed in accordance with the following. Due to the Public Health Agency of Canada’s recommendations regarding COVID-19, UNBC has suspended all research that involves in-person/face-to-face contact until further notice and curtailed all research activities on campus. For further information, please see https://www.unbc.ca/research/covid-19-updates-on-research-activities-and-supportpersonnel. The REB expects that researchers will follow the University's directive for all their research activities. Thank you. The application for ethical review and the document(s) listed above have been reviewed and the procedures were found to be acceptable on ethical grounds for research involving human subjects. This study has been approved either by the Board of Record’s full REB or by an authorized delegated reviewer. 148 University of Northern British Columbia Certificate of Ethical Approval: Amendments for Harmonized Minimal Risk Behavioural Study Research Ethics Board University of Northern British Columbia 3333 University Way Prince George, BC V2N 4Z9 Tel: 250-960-5555 Also reviewed and approved by: Principal Investigator: Board of Record REB Number: Primary Appointment: · Northern Health Erin Wilson REB Number: H20-01420 Study Title: The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the NursePatient Relationship in Northern British Columbia from the Perspective of Patients Approval Date: November 20, 2020 Expiry Date: July 31, 2021 Research Team Members: Sponsoring Agencies: Caroline Diane Sanders Rebecca Stent - BC SUPPORT Unit - University of Northern British Columbia Document Name Consent Forms: UNBC Information Letter and Consent Form Patients Informants Advertisements: Documents included in this Patient Recruitment Flyer - in Community approval: Patient Recruitment Flyer - by Home Care Nurses Version Date 5 November 19, 2020 1 1 Questionnaire, Questionnaire Cover Letter, Tests: Preliminary Interview Questions - Patient 2 Informants October 28, 2020 October 28, 2020 October 28, 2020 This ethics approval applies to research ethics issues only and does not include provision for any administrative approvals required from individual institutions before research activities can commence. The Board of Record (as noted above) has reviewed and approved this study in accordance with the requirements of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2018). The "Board of Record" is the Research Ethics Board delegated by the participating REBs involved in a harmonized study to facilitate the ethics review and approval process. The application for ethical review and the document(s) listed above have been reviewed and the 149 procedures were found to be acceptable on ethical grounds for research involving human subjects. Your amendment has been approved, however research can only proceed in accordance with the following. Due to the Public Health Agency of Canada’s recommendations regarding COVID-19, UNBC suspended all research that involves in-person/face-to-face contact without a Safe Research Plan in place with UNBC as the Board of Record, and curtailed all research activities on campus. Any changes or amendments to the protocol or consent form must be approved by the REB. For further information, please see https://www.unbc.ca/research/covid-19-updates-onresearch-activities-and-support-personnel. The REB expects that researchers will follow the University's directive for all their research activities. Thank you. This study has been approved either by the Board of Record’s full REB or by an authorized delegated reviewer. 150 Northern Health Regional Office 600-299 Victoria Street, Prince George, BC V2L 5B8 Telephone: (250) 565-2649, Fax: (250) 565-2640 www.northernhealth.ca December 7, 2020 File # RRC-2020-0028 REB #H20-01420 Via email to: erin.wilson@unbc.ca Erin Wilson, Clinical Instructor University of Northern British Columbia 3333 University Way Prince George, BC V2N 4Z9 Dear Erin: Re: The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the Nurse-Patient Relationship in Northern British Columbia On behalf of the Northern Health Research Review Committee, I would like to thank you for submitting your application for research approval. The study has received ethical approval through BC Harmonized Ethics Review process (Certificate of Approval issued by the UNBC Research Ethics Board as the Board of Record dated November 20, 2020) and achieved operational and ethical approval through the Northern Health Research Review Committee. We look forward to hearing about your findings. Please share your results with us at ResearchCommittee@northernhealth.ca at the completion of your project. Sincerely, Tamara Checkley, Chair Research Review Committee TC/dt CC: Rebecca Stent, UNBC Julie Dhaliwal, Director, Community Services, Northern Health 151 Appendix D: Recruitment Poster TELL US ABOUT YOUR EXPERIENCE RECEIVING HOME CARE » Have you been receiving home care in Prince George for at least one month? » Are you seen at least once a week by the home care nurses? » Are you at least 19 years of age? What is this about? • We are interviewing people who receive home care to learn more about patient perspectives of the ways home care services are designed and delivered, how home care nurses do their work, and how it impacts nursepatient relationships • This project is for a Master’s degree in Nursing What will be expected of me? • We invite you to participate in a virtual interview (by telephone or video) lasting 30-60 minutes, to learn more about your perspectives of home care nursing and the relationships between home care nurses and patients When will interviews be held? • Dates for interviews will be chosen based on your availability between AprilandJune2021. Choosing to participate or not participate in this study is entirely voluntary and will not impact your health care services or treatments in any way For more information or to sign up, please contact the student researcher: Student Researcher: Rebecca Stent, BScN, RN MScN student UNBC School of Nursing 250.540.1161 | stent@unbc.ca Version 1: October 28, 2020 Poster 1: HCN Recruitment Principal Investigator/Supervisor: Erin Wilson, PhD, NP(F) Assistant Professor UNBC School of Nursing 250.960.6746 | erin.wilson@unbc.ca 152 TELL US ABOUT YOUR EXPERIENCE RECEIVING HOME CARE » Have you received home care in Prince George within the past four months? » Did you receive home care for at least one month and were you seen by the home care nurses at least once a week? » Are you at least 19 years of age? What is this about? • We are interviewing people who receive home care to learn more about patient perspectives of the ways home care services are designed and delivered, how home care nurses do their work, and how it impacts nursepatient relationships • This project is for a Master’s degree in Nursing What will be expected of me? • We invite you to participate in a virtual interview (by telephone or video) lasting 30-60 minutes, to learn more about your perspectives of home care nursing and the relationships between home care nurses and patients When will interviews be held? • Dates for interviews will be chosen based on your availability between December 2020 and February 2021 Choosing to participate or not participate in this study is entirely voluntary and will not impact your health care services or treatments in any way For more information or to sign up, please contact the student researcher: Student Researcher: Rebecca Stent, BScN, RN MScN student UNBC School of Nursing 250.540.1161 | stent@unbc.ca Version 1: October 28, 2020 Poster 2: Community Recruitment Principal Investigator/Supervisor: Erin Wilson, PhD, NP(F) Assistant Professor UNBC School of Nursing 250.960.6746 | erin.wilson@unbc.ca 153 Appendix E: Information Letters and Consent Forms The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the Nurse-Patient Relationship in Northern British Columbia from the Perspective of Patients Information Letter and Consent Form for Patients Insert Date Principal Investigator/Supervisor: Erin Wilson PhD, NP(F) Assistant Professor School of Nursing UNBC Prince George, BC V2N 4Z9 Erin.Wilson@unbc.ca 250.960.6746 Student Researcher: Rebecca Stent BScN, RN Master of Science in Nursing Student School of Nursing UNBC Prince George, BC V2N 4Z9 stent@unbc.ca 250.540.1161 This project is part of a Master of Science in Nursing degree through the University of Northern British Columbia (UNBC). The final thesis will be a public document. Funded by: Rebecca is a recipient of the following funding to support this research and the completion of her Master of Science in Nursing degree: • Elizabeth Kellie Chapter IODE – Josephine Swann Bursary • University of Northern British Columbia Graduate Scholarship • BC SUPPORT Unit Northern Centre Graduate Studentship Award Why are we doing this study? The goal of this study is to examine how home care nurses do their work and how it impacts nurse-patient relationships. We want to find out about patient perspectives of how home care nursing services are designed and delivered and patient experiences of receiving home care. Why are you being invited to take part in this study? You are being invited to participate because of your experience with home care. Voluntary Participation 154 Participation is voluntary. You may refuse to participate or withdraw from the study at any time, without giving a reason. If you choose to, any information that has been provided by you up to that point will be withdrawn and securely destroyed, unless you give us permission to keep previous information in the study. What will happen during the study? If you decide to take part in this study, you will be invited to participate in an interview over the phone or through Zoom (a video conference platform) at a time that works for you, to ask about your perspectives of home care nursing and the relationships between home care nurses and patients. Is there any way that participating in the study could harm you? We do not think there is anything in this study that could harm you. Some of the questions we ask might be upsetting if they bring up feelings about past situations that were upsetting to you. You do not have to answer any question you do not want to. You can contact the student researcher or supervisor if you have any concerns. If at any point you want to end your participation, please notify the researcher immediately and your wishes will be respected. Will being in this study benefit you in any way? This study may not benefit you directly. However, what we learn may help identify how the daily work of home care nurses impacts relationships with patients, and whether there are areas for change or improvement to home care service design or delivery. How will your identity be protected and your privacy, confidentiality, and anonymity maintained? The researcher will not be reviewing your chart and will not be collecting any additional personal health information aside from what you choose to share in your interview. Your anonymity is of highest priority. Any information that may reveal your identity will not be shared. All documents connected with your information will be assigned a code or number, and you will not be identified by name in any reports associated with this study. While we will do everything possible to protect your identity, due to the small size of the study population, confidentiality cannot be guaranteed. For instance, if details are shared that are unique to a relationship or known incident, there is the possibility that other individuals who have knowledge of the situation may recognize some of the details. To avoid this, you are invited to share any concerns with the researcher and request that specific details be removed or altered to maintain confidentiality. If you would like an opportunity to review a copy of the transcript of your interview when it is completed, please provide an email address below at which the researcher can contact you. If you request a copy of your transcript you will receive it by email in a password protected document with the password sent separately. The transcript will also be anonymized, meaning your name will not appear on it. If you wish to discuss your transcript with the researcher, please email the researcher using the contact information on this form. If you 155 wish any or all of your information to be removed from the study, all information will be promptly, and confidentially, destroyed. Only the student researcher will have access to the consent forms, containing identifiable information. Scanned or electronic copies of the consent forms will be stored in encrypted and password protected files on the secure UNBC server using VMWare software. Any other data that is shared with the supervisor or committee members will be de-identified, which means that identifying information will be removed. Hard copies of data that are printed, such as written transcripts of interviews, will be de-identified and stored in a private, locked filing cabinet in the student researcher’s secure home office, to which only the student researcher will have access. All electronic data, including written transcripts and audio recordings, will be stored in encrypted and password protected files on the secure UNBC server using VMWare software. The master participant list will be stored electronically in a password protected file on the secure UNBC server using VMWare software, separately from all other research data, with only the student researcher having access. Hard copies of data will be permanently and confidentially destroyed by shredding any paper files following the student researcher’s thesis defense of this study. All electronic versions will be securely stored as described above for up to five years after the study is complete, after which they will be permanently and confidentially deleted. Hard copies of papers will be destroyed by shredding, and digital files will be permanently deleted. Future publications in academic journals or presentations of the findings of this study will only identify the community as a community in northern British Columbia. If you choose to be interviewed through Zoom, you will be emailed a link and passcode to access the secure Zoom meeting. A UNBC-licensed version of Zoom will be used, which is hosted on a Canadian service. Once the interview begins, the meeting room will be locked so that nobody else can enter. Zoom recording features will not be used. Instead, with your permission, the researcher will use a digital audio recorder to record the interview. The recording will be uploaded to a password protected file on the UNBC server immediately after the interview, and securely deleted from the digital recorder. If you are uncomfortable sharing video over Zoom, you can choose not to share video during the interview or choose to have your interview conducted over the phone. To further protect your identity, you may choose to use a nickname or made up name when signing into the Zoom meeting, rather than entering your full name. Will you be paid for taking part in this research study? There is no compensation for participating in the study. What will happen with the results of the study? The findings of this study will be presented in a graduate thesis. They may also be published in journal articles and books and presented at conferences. 156 We highly value the contributions of research participants and appreciate that many people are interested in learning about the results of studies to which they have given time and effort. If you would like to receive information about the results of the study, please include your contact information below so we can share findings with you. CONTACT FOR INFORMATION ABOUT THE STUDY: Questions, Concerns or Complaints about the project If you have any questions or concerns, please do not hesitate to contact the Student Researcher and/or the Supervisor of this study. The Student Researcher, Rebecca Stent, can be reached at 250.540.1161 or via email at stent@unbc.ca. The Supervisor of this study, Dr. Erin Wilson, can be reached at 250.960.6746 or via email at Erin.Wilson@unbc.ca. CONTACT FOR CONCERNS OR COMPLAINTS: If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the UNBC Office of Research at 250-9606735 or by e-mail at reb@unbc.ca PARTICIPANT CONSENT AND SIGNATURE: Taking part in this study is entirely up to you. You have the right to refuse to participate. If you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impacts. Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study. CONSENT I have read or been described the information presented in the information letter about the project: YES NO I have had the opportunity to ask questions about my involvement in this project and to receive additional details I requested. YES NO I understand that if I agree to participate in this project, I may withdraw from the project at any time up until the report completion, with no consequences of any kind. 157 YES NO I have been given a copy of this form. YES NO I agree to be recorded (if applicable). YES NO I would like to be contacted by the researcher following my interview so that I can review the anonymized transcript of my interview: (This is optional. Selecting “NO” does not impact participation in the study or prevent you from contacting the researcher with any concerns following your interview) YES NO e-mail address (if yes): __________________________________________________ I would like to receive information about the results of this study. Follow-up information can be communicated to me via the following telephone number or e-mail or mailing address: (This is optional and selecting “NO” does not impact participation in the study. Please indicate which method of contact you prefer): YES NO _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ If consent is provided by the participant: Signature (or note of verbal consent): Name of Participant (Printed): Date: 158 The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the Nurse-Patient Relationship in Northern British Columbia from the Perspective of Patients Information Letter and Consent Form for Patient-Caregiver Dyads Insert Date Principal Investigator/Supervisor: Erin Wilson PhD, NP(F) Assistant Professor School of Nursing UNBC Prince George, BC V2N 4Z9 Erin.Wilson@unbc.ca 250.960.6746 Student Researcher: Rebecca Stent BScN, RN Master of Science in Nursing Student School of Nursing UNBC Prince George, BC V2N 4Z9 stent@unbc.ca 250.540.1161 This project is part of a Master of Science in Nursing degree through the University of Northern British Columbia (UNBC). The final thesis will be a public document. Funded by: Rebecca is a recipient of the following funding to support this research and the completion of her Master of Science in Nursing degree: • Elizabeth Kellie Chapter IODE – Josephine Swann Bursary • University of Northern British Columbia Graduate Scholarship • BC SUPPORT Unit Northern Centre Graduate Studentship Award Why are we doing this study? The goal of this study is to examine how home care nurses do their work and how it impacts nurse-patient relationships. We want to find out about patient perspectives of how home care nursing services are designed and delivered and patient experiences of receiving home care. Why are you being invited to take part in this study? You are being invited to participate because of your experience with home care. Voluntary Participation Participation is voluntary. You may refuse to participate or withdraw from the study at any time, without giving a reason. If you choose to, any information that has been provided by you up to 159 that point will be withdrawn and securely destroyed, unless you give us permission to keep previous information in the study. What will happen during the study? If you decide to take part in this study, you will be invited to participate together in an interview over the phone or through Zoom (a video conference platform) at a time that works for you, to ask about your perspectives of home care nursing and the relationships between home care nurses and patients. You will be asked to both be present during the interview, even if the person who receives home care services does not wish to or is unable to contribute to the conversation. This is to ensure that the patient continues to agree to the interview. The patient is invited to interject at any point to clarify, correct, or corroborate your caregiver’s responses to questions. Is there any way that participating in the study could harm you? We do not think there is anything in this study that could harm you. Some of the questions we ask might be upsetting if they bring up feelings about past situations that were upsetting to you. You do not have to answer any question you do not want to. You can contact the student researcher or supervisor if you have any concerns. If at any point you want to end your participation, please notify the researcher immediately and your wishes will be respected. Will being in this study benefit you in any way? This study may not benefit you directly. However, what we learn may help identify how the daily work of home care nurses impacts relationships with patients, and whether there are areas for change or improvement to home care service design or delivery. How will your identity be protected and your privacy, confidentiality, and anonymity maintained? The researcher will not be reviewing your chart and will not be collecting any additional personal health information aside from what you choose to share in your interview. Your anonymity is of highest priority. Any information that may reveal your identity will not be shared. All documents connected with your information will be assigned a code or number, and you will not be identified by name in any reports associated with this study. While we will do everything possible to protect your identity, due to the small size of the study population, confidentiality cannot be guaranteed. For instance, if details are shared that are unique to a relationship or known incident, there is the possibility that other individuals who have knowledge of the situation may recognize some of the details. To avoid this, you are invited to share any concerns with the researcher and request that specific details be removed or altered to maintain confidentiality. In addition, interviewing in a patient-caregiver dyad may make it more challenging to ensure your anonymity. To minimize this risk, the specific nature of your relationship (i.e. spouse, parent and child, friend, etc.) will not be described in any reports of this 160 study. Instead, your will simply be identified as having a “patient-caregiver” relationship. If you would like an opportunity to review a copy of the transcript of your interview when it is completed, please provide an email address below at which the researcher can contact you. If you request a copy of your transcript you will receive it by email in a password protected document with the password sent separately. The transcript will also be anonymized, meaning your name will not appear on it. If you wish to discuss your transcript with the researcher, please email the researcher using the contact information on this form. If you wish any or all of your information to be removed from the study, all information will be promptly, and confidentially, destroyed. Only the student researcher will have access to the consent forms, containing identifiable information. Scanned or electronic copies of the consent forms will be stored in encrypted and password protected files on the secure UNBC server using VMWare software. Any other data that is shared with the supervisor or committee members will be de-identified, which means that identifying information will be removed. Hard copies of data that are printed, such as written transcripts of interviews, will be de-identified and stored in a private, locked filing cabinet in the student researcher’s secure home office, to which only the student researcher will have access. All electronic data, including written transcripts and audio recordings, will be stored in encrypted and password protected files on the secure UNBC server using VMWare software. The master participant list will be stored electronically in a password protected file on the secure UNBC server using VMWare software, separately from all other research data, with only the student researcher having access. Hard copies of data will be permanently and confidentially destroyed by shredding any paper files following the student researcher’s thesis defense of this study. All electronic versions will be securely stored as described above for up to five years after the study is complete, after which they will be permanently and confidentially deleted. Hard copies of papers will be destroyed by shredding, and digital files will be permanently deleted. Future publications in academic journals or presentations of the findings of this study will only identify the community as a community in northern British Columbia. If you choose to be interviewed through Zoom, you will be emailed a link and passcode to access the secure Zoom meeting. A UNBC-licensed version of Zoom will be used, which is hosted on a Canadian service. Once the interview begins, the meeting room will be locked so that nobody else can enter. Zoom recording features will not be used. Instead, with your permission, the researcher will use a digital audio recorder to record the interview. The recording will be uploaded to a password protected file on the UNBC server immediately after the interview, and securely deleted from the digital recorder. If you are uncomfortable sharing video over Zoom, you can choose not to share video during the interview or choose to have your interview conducted over the phone. To further protect your identity, you may choose to use a nickname or made up name when signing into the Zoom meeting, rather than entering your full name. Will you be paid for taking part in this research study? 161 There is no compensation for participating in the study. What will happen with the results of the study? The findings of this study will be presented in a graduate thesis. They may also be published in journal articles and books and presented at conferences. We highly value the contributions of research participants and appreciate that many people are interested in learning about the results of studies to which they have given time and effort. If you would like to receive information about the results of the study, please include your contact information below so we can share findings with you. CONTACT FOR INFORMATION ABOUT THE STUDY: Questions, Concerns or Complaints about the project If you have any questions or concerns, please do not hesitate to contact the Student Researcher and/or the Supervisor of this study. The Student Researcher, Rebecca Stent, can be reached at 250.540.1161 or via email at stent@unbc.ca. The Supervisor of this study, Dr. Erin Wilson, can be reached at 250.960.6746 or via email at Erin.Wilson@unbc.ca. CONTACT FOR CONCERNS OR COMPLAINTS: If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the UNBC Office of Research at 250-9606735 or by e-mail at reb@unbc.ca PARTICIPANT CONSENT AND SIGNATURE: Taking part in this study is entirely up to you. You have the right to refuse to participate. If you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impacts. Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study. CONSENT I have read or been described the information presented in the information letter about the project: YES NO 162 I have had the opportunity to ask questions about my involvement in this project and to receive additional details I requested. YES NO I understand that if I agree to participate in this project, I may withdraw from the project at any time up until the report completion, with no consequences of any kind. YES NO I have been given a copy of this form. YES NO I agree to be recorded (if applicable). YES NO I agree to allow my caregiver to share my experiences receiving home care nursing services (patients only). YES NO Caregiver’s Name: ________________________ I would like to be contacted by the researcher following my interview so that I can review the anonymized transcript of my interview: (This is optional. Selecting “NO” does not impact participation in the study or prevent you from contacting the researcher with any concerns following your interview) YES NO e-mail address (if yes): __________________________________________________ I would like to receive information about the results of this study. Follow-up information can be communicated to me via the following telephone number or e-mail or mailing address: (This is optional and selecting “NO” does not impact participation in the study. Please indicate which method of contact you prefer): YES NO _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ 163 If consent is provided by the patient participant: Signature (or note of verbal consent): Name of Patient Participant (Printed): Date: If consent is provided by the primary caregiver participant: Signature (or note of verbal consent): Name of Caregiver Participant (Printed): Date: 164 Appendix F: Letter of Transition: Patient Partner June 8, 2021 Re: The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the NursePatient Relationship in Northern British Columbia from the Perspective of Patients Dear __________, Thank you for considering joining this study as a patient partner. I want to provide some details about how we can formally conclude your role as a participant in the study in order to transition you to a partner role. This letter marks the end of your participation in the above-named study as a participant, and the beginning of your role as a patient partner on the research team. The definition of a participant in this study is someone who was interviewed to share their experiences, as you have in your role as a person receiving home care or a caregiver for a person receiving home care. The key role of participants is to contribute to the inputs of a research study, by providing their unique perspectives. A patient partner, in contrast, has a key role related to the outputs of a research study. This person joins the research team to provide guidance, as someone with lived experience. To mark the start and stop of the roles you have undertaken with this project, I would like to note that your role as a participant ended on ________, and your role as a partner begins on ________. I look forward to talking about how you would like to engage as a patient partner. Some ideas include reviewing parts of the final thesis draft, giving feedback on identified themes, or engaging in sharing findings. As we move through the phases of the study, you will have time to decide whether you wish to have your name publicly associated with the study. For example, through engaging in presentations or having your name included on final reports. To protect your anonymity and confidentiality, your role as a participant will never be identified or disclosed publicly, unless you wish to disclose it. You will not have access to raw data (which means data that has identifiable information, such as participant names). However, in a study with a small sample size, there is the possibility that you might know a participant outside of this study and may recognize someone based on details they shared about their experience. If this happens, you will be expected to keep this confidential and avoid discussing this with anyone. I would be happy to answer any questions or go over any concerns you may have. As we move forward on this work, there are several resources that will be available to you. You will see contact information for my supervisor, Dr. Erin Wilson, below. I will also connect you with the BC SUPPORT Unit, which is an organization supporting patient-oriented research in British Columbia. I sincerely look forward to working with you and appreciate you taking the time to contribute to this project. Sincerely, Rebecca Stent Principal Investigator/Supervisor: Erin Wilson PhD, NP(F) Assistant Professor, School of Nursing, UNBC Prince George, BC V2N 4Z9 Erin.Wilson@unbc.ca 250.960.6746 Student Researcher: Rebecca Stent BScN, RN MScN Student, School of Nursing, UNBC Prince George, BC V2N 4Z9 stent@unbc.ca 250.540.1161 165 Appendix G: Preliminary Interview Questions The Impact of Structures and Systems present in Everyday Home Care Nursing Work on the Nurse-Patient Relationship in Northern British Columbia from the Perspective of Patients Preliminary Semi-Structured Interview Questions: Patient Informants Preamble: Thank you for volunteering for this interview. I am studying how home care nurses do their work and how it impacts nurse-patient relationships. I’m interviewing patients to find out about patient perspectives of receiving home care. With your permission, I’ll turn the recording on now and then say the date and a code to identify this interview later. Is it OK if I turn on the recorder now? 1. Can you tell me about your experience with home care? • Possible Probes: o How long have you had home care services? How was it initially set up? o What other supports do you receive for home care? E.g., home support workers, informal care? How was that initially set up? o Has anything about your home care services changed over time? What sort of things? Why do you think that is? How has it impacted you? 2. Can you tell me about a typical appointment with your home care nurses (e.g., maybe your last appointment)? • Possible Probes: o How do you know when the nurse is going to come for your appointment? o How do you prepare for their visit? o What happens while the nurse is here? o How often do the nurses typically see you in one week? Do you usually see the same nurse or different nurses? What is your understanding of why you receive care from (different/same) nurses? 3. Can you tell me some of the ways you communicate with the nurse during the visit? • Possible Probes: o How do you share information about changes to your health or your condition? What do the nurses ask about your health? o Do you discuss issues not related to your home care with the nurse? Why or why not? o How are home care nurses part of your health care team? o Who else makes up your health care team? 4. If you have a health concern between visits from the nurse, do you call the home care nurse, or someone else? 166 • Possible Probe: o Can you tell me more about that? 5. What are some of the things the nurses do that are most helpful during their visits? • Possible Probes: o What do you think contributes to that? Is there anything you can think of that is not helpful during a visit? o Can you think of a time where a home care visit did not go as you expected? What contributed to that? How was it handled? 6. Can you describe the relationship you have with the home care nurse or nurses who provide your care? • Possible Probes: o What influences your relationship with the nurses providing your home care? o Has your relationship changed over time with the nurses? In what ways? 7. Is there anything you would change about the care you receive from home care nurses? • Possible Probes: o Why do you think that happens? Have you asked for this to change? If so, what happened? If not, what prevented you from asking? 8. Is there anything you would like to tell me about your experiences with home care that we have not already talked about? Thank you very much for your time, I’ll turn the recording off now. 167 Appendix H: Maps of Social Relations 168 169