Search

Accessible Summary: What is known on the subject?: Involuntary treatment orders are increasingly being used around the world to allow the treatment of individuals living with a mental illness deemed incapable of giving consent and who are actively refusing treatment.The use of involuntary treatment orders can impact the nurse–patient therapeutic relationship, which is essential to offer quality care and promote recovery. What the paper adds to existing knowledge?: Nurses and patients do not agree on the possibility to develop a therapeutic relationship, with nurses believing they can build a bond with the patients despite the challenges imposed by the involuntary treatment order, and patients rejecting this possibility.Nurses caring for patients on involuntary treatment orders feel obligated to apply the conditions of this measure, even if it damages the relationship with their patients. This difficult aspect of their work leads them to question their role in relation to the management of involuntary treatment orders. What are the implications for practice?: Nurses need to be aware of the reasons why patients on involuntary treatment orders do not believe in the possibility of building a therapeutic relationship.Nurses need to reflect on and express their concerns about the damaging effects that managing involuntary treatment orders conditions can have on the nurse–patient therapeutic relationship. Introduction: Involuntary treatment orders (ITO) can impact the nurse–patient therapeutic relationship (TR) negatively. Despite the increasing use of ITOs around the world, few studies have explored their influence on the TR from the perspectives of nurses and patients. Aim: To describe the TR in the context of ITOs as reported by nurses and individuals living with a mental illness. Method: Secondary data analysis of qualitative interviews with nurses (n = 9) and patients (n = 6) was performed using content analysis. Results: Participants described the TR as fundamentally embedded in a power imbalance amplified by the ITO, which was discussed through the conflicting roles of nurses, the legal constraints imposed on patients and nurses, the complex relation between the ITO and the TR, and the influence of mental healthcare settings' context. Discussion: Nurses and patients' views were opposed, questioning the authenticity of the relationship. Implications for Practice: Nurses should be aware of the patients' lack of faith in the TR to ensure that they are sensitive to patients' behaviours that may falsely suggest that a relationship is established. Further studies should explore ways to alleviate the burden of the management of ITOs on nurses and allow for a trusting relationship to be build. [ABSTRACT FROM AUTHOR]

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. [ABSTRACT FROM AUTHOR]

As part of the response to Canada's worsening overdose crisis driven by a toxic, adulterated drug supply, there has been increased attention to and expansion of drug treatment, options, including injectable opioid agonist treatment (iOAT). iOAT typically involves the, witnessed daily injection of opioids under healthcare provider supervision. There is a robust, evidence base on iOAT; however, there has been less focus on how people engage with this; treatment outside of clinical trials. This paper examines how people engage with iOAT programs, in expanded treatment settings in Canada, focusing on how the broader socio-structural context, shapes patient subjectivities in treatment. This study draws on critical ethnographic and community-based research approaches, conducted with people accessing four iOAT programs in Vancouver's Downtown Eastside; neighbourhood from May 2018 to November 2019. Data included in-depth baseline and followup, interviews and approximately 50 h of observation fieldwork conducted in one iOAT, program and with a subsample of participants in the surrounding neighbourhood. Analysis, leveraged the concepts of biological citizenship and structural vulnerability. This analysis characterized three narrative frames— regular long-term engagers, pain, patients, and sporadic and short-term engagers —through in-depth case presentations of participants with distinct types of engagement with iOAT programs. Participants within these, narrative frames described a dominant form of iOAT citizenship, an autonomous patient who, regularly engages in treatment and avoids pleasure. However, structural vulnerabilities, including, homelessness and housing instability, entrenched poverty, criminal-legal system engagement, and unmanaged pain, shaped the ability of participants to make claims to this normative model of citizenship. This study examined how structural vulnerabilities impact people's construction and ability to make iOAT citizenship claims. Findings point to the need for changes within and outside of iOAT programs, such as lower threshold treatment models, improved social services (e.g., secure housing), and pain management support. • Biological citizenship used to examine how people engage with iOAT. • Narrative frames used to explore patterns of iOAT engagement. • These served as alternate to iOAT citizenship framed by treatment. • Unmanaged pain, housing instability, and poverty impacted treatment engagement. [ABSTRACT FROM AUTHOR]

Purpose - There is much evidence of bias in research on the effectiveness and efficacy of drugs as a result of the influence of the pharmaceutical industry. The purpose of this paper is to present the views of those involved in a major evidence-based policy initiative from Canada and examine the adequacy of existing academic conflict of interest (COI) rules. Design/methodology/approach - Data came from the Alzheimer's Drug Therapy Initiative in British Columbia, a coverage with evidence development (CED) initiative, where a form of action research collected insights from the authors' experiences, combined with qualitative interviews with members of the research team. Findings - The majority of researchers perceive the influence of pharmaceutical manufacturers as problematic. Even when the strictest of COI rules are followed, extending well beyond disclosure, the reach of industry is so great that existing COI rules lag far behind their expanding influence. Practical implications - The authors support others who call for the funding of independent research, enforcement of existing disclosure rules, and unfettered publication rights. In addition, the authors urge the education of all research team members, including clinicians, on the evidence indicating the variety of forms through which industry influence is exerted. The authors believe that this awareness-raising can help toward minimizing that influence in the analyses that are conducted. Originality/value - Consideration of pharmaceutical influence on CED research is important. There may be an untrue assumption that CED is functioning at arms-length from the drug companies. [ABSTRACT FROM AUTHOR]

Community-based organizations operate with limited resources and insecure funding in poor districts of Canada. With unpaid volunteers, they reach out to marginalized and underserved populations. Their activities take place in unpredictable settings. This paper looks at volunteerism as a research strategy. A systematization of experiences describes the volunteer work during a two-year participatory research project. A doctoral study became rooted in a coalition fighting against AIDS. The author witnessed what happened in terms of lived acts rather than only listened to discourse from interviews. By being there, one can visualize the level of volunteer engagement from civil society. The reflexive practice concentrated on socio-political contexts in which the research took place. Through this journey, traits such as conviviality, caring, festive links and militancy/fundraising emerged as reflective practice. The posture responded to ‘militant’ epistemological and ethical options: (a) the potential autonomy of community groups and their contribution to the social collective practice, and (b) an increased recognition of practical intelligence as an additional instrument for the production of understanding outside the institutional logic. [ABSTRACT FROM PUBLISHER]

This paper reports on and synthesizes new research that examines how a collaborative community response can promote successful aging in place for older adults with hoarding behaviour. Through interviews with older adults with hoarding behaviour, who used a particular community support and a focus group interview with members of the community collaborative that directed supports for this population, our findings suggest that there were valuable outcomes for both groups. These older adults with hoarding behaviour were able to remain in their own homes, their safety was enhanced, their sense of isolation was minimized, empowerment was fostered, and they gained valuable insight into their behaviour. The members of the community collaborative were able to access the expertise of other professionals, maximize their own expertise, and they generated an enhanced understanding of the experience of older adults living with hoarding behaviour in Edmonton. This study is a significant addition to the much too sparse literature about the community planning needs of older adults with hoarding behaviour. It offers knowledge that is integral to theories and principles of better aging in place but attempts to translate this into practice. [ABSTRACT FROM AUTHOR]

In 2010, Castleden and colleagues published a paper in this journal using the concept of 'place' as an analytic tool to understand the nature of palliative care provision in a rural region in British Columbia, Canada. This publication was based upon pilot data collected for a larger research project that has since been completed. With the addition of 40 semi-structured interviews with users and providers of palliative care in four other rural communities located across Canada, we revisit Castleden and colleagues' (2010) original framework. Applying the concept of place to the full dataset confirmed the previously published findings, but also revealed two new place-based dimensions related to experiences of rural palliative care in Canada: (1) borders and boundaries; and (2) 'making' place for palliative care progress. These new findings offer a refined understanding of the complex interconnections between various dimensions of place and palliative care in rural Canada. [ABSTRACT FROM AUTHOR]

In this article, we discuss how we used institutional ethnography (Institutional ethnography as practice, Rowman & Littlefield, Lanham, MD and 2006) to map out powerful ruling relations that organize nurses' wound care work. In recent years, the growing number of people living with wounds that heal slowly or not at all has presented substantial challenges for those managing the demands on Canada's publicly insured health‐care system. In efforts to address this burden, Canadian health‐care administrators and policy‐makers rely on scientific evidence about how wounds heal and what treatments are most effective. Advanced wound care exemplifies the growing authorization of particular forms of evidence that change the ways in which nurses come to know about and conduct their work. The focus of this paper's nursing inquiry is a critique of registered nurses' wound work as it arises within the established uptake of scientific evidence. [ABSTRACT FROM AUTHOR]

Rehabilitation clinicians need information about patient activities in the home/community to inform care. Despite active efforts to develop technologies that can meet this need, clinicians' perspectives regarding how information is collected and used in outpatient rehabilitation have not been comprehensively described. Therefore, we aimed to describe: (1) what data pertaining to a patient's health, function and activity in their home/community are currently collected in outpatient rehabilitation, (2) how these data can impact clinical decisions, and (3) what challenges clinicians encounter when they manage the care of outpatients based on this information. Eight clinicians working in outpatient rehabilitation programs completed qualitative interviews that were analyzed using an inductive thematic analysis. Four themes were identified: "Nature of data about a patient's health, function and activity in the home/community and how it is collected by clinicians," "Value of data from the home/community," "Perceived drawbacks of current data collection methods," and "Improving data collection to understand patient trajectory." Clinicians described the importance of understanding patient activities in the home/community, but perspectives varied regarding the suitability of current methods. These perceptions may inform the design of solutions to bridge the gap between the clinic and the community in outpatient rehabilitation. Clinical decision-making in outpatient rehabilitation is guided by verbal and written reports about a patient's health and function in the community and adherence to treatment plans. Differing perceptions on the suitability of current data collection methods indicate that the development of new solutions, such as rehabilitation technologies, needs to carefully consider clinician workflows and what data are perceived as meaningful. Potentially impactful directions for new solutions include providing well validated data on adherence, movement quality, or longitudinal progression, presented in formats that match clinical decision criteria. [ABSTRACT FROM AUTHOR]

Information is lacking on the role shared decision making plays in the care of transgender (trans) youth. This qualitative, descriptive study explored how trans youth, parents and health care providers engaged or did not engage in shared decision-making practices around hormone therapy initiation and what conditions supported shared decision-making approaches in clinical practice. Semi-structured interviews were conducted with 47 participants in British Columbia, Canada, and analyzed using a constructivist grounded theory approach. While formal shared decision-making models were not used in practice, many participants described elements of such approaches when asked about their health care decision-making processes. Others described health care interactions that were not conducive to a shared decision-making approach. The key finding that emerged through this analysis was a set of five conditions for supporting shared decision making when making decisions surrounding initiation of hormone therapy with trans youth. Both supportive relationships and open communication were necessary among participants to support shared decision making. All parties needed to agree regarding what decisions were to be made and what role each person would play in the process. Finally, adequate time was needed for decision-making processes to unfold. When stakeholders meet these five conditions, a gender-affirming and culturally safer shared decision-making approach may be used to support decision making about gender-affirming care. Implications for clinical practice and future research are discussed. [ABSTRACT FROM AUTHOR]

Background: Canadian specialty clinics offering gender-affirming care to trans and gender diverse children and youth have observed a significant increase in referrals in recent years, but there is a lack of information about the experiences of young people receiving care. Furthermore, treatment protocols governing access to gender-affirming medical interventions remain a topic of debate. Aims: This qualitative research aims to develop a deeper understanding of experiences of trans youth seeking and receiving gender-affirming care at Canadian specialty clinics, including their goals in accessing care, feelings about care and medical interventions they have undergone, and whether they have any regrets about these interventions. Methods: The study uses an adapted Grounded Theory methodology from social determinants of health perspective. Thirty-five trans and gender diverse young people aged 9 to 17 years were recruited to participate in semi-structured interviews through the specialty clinics where they had received or were waiting for gender-affirming medical interventions such as puberty blockers, hormone therapy, and surgery. Results: Young people felt positively overall about the care they had received and the medical interventions they had undergone, with many recounting an improvement in their well-being since starting care. Most commonly shared frustrations concerned delays in accessing interventions due to clinic waiting lists or treatment protocols. Some youth described unwanted medication side-effects and others said they had questioned their transition trajectory at certain moments in the past, but none regretted their choice to undergo the interventions. Discussion: The results suggest that trans youth and gender diverse children are benefiting from medical gender-affirming care they receive at specialty clinics, providing valuable insight into their decision-making processes in seeking care and specific interventions. Providers might consider adjusting aspects of treatment protocols (such as age restrictions, puberty stage, or mental health assessments) or applying them on a more flexible, case-by-case basis to reduce barriers to access. [ABSTRACT FROM AUTHOR]

This qualitative study explored the experiences and patterns of recovery of Chinese-born women living in Canada with a history of suicidal behaviour. It explores a number of dimensions of recovery including clinical, existential, functional, physical, and social. The women described engaging in "survival" recovery in the short term and "thriving" recovery in the long term, with survival strategies extending into the thriving phase of recovery during their complex path to it. The survival recovery phase included accessing culturally sensitive mental health care and obtaining social and instrumental support to help ensure safety, manage stress, and treat psychiatric symptoms. The thriving phase of recovery was described as involving six components: developing an explanatory model with their health care provider; undertaking a process of narrative reflection and prioritizing self-care; engaging in interdisciplinary care team support; engaging the support of family and friends; exploring spiritual and existential supports; and creating goals for the future and a sense of mastery. Through these six avenues, the women began to experience a sense of self-efficacy and agency that improved their ability to cope with stress and pressure, leading to building a life with meaning. The interviews provided insights into how clinical care can be improved and how practitioners can implement a more recovery-oriented approach to practice. [ABSTRACT FROM AUTHOR]

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement. [ABSTRACT FROM AUTHOR]

Background: Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed.Objective: To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments.Method: Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants.Results: In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring.Conclusions: Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. [ABSTRACT FROM AUTHOR]

Barriers associated with treatment engagement exist at multiple levels for immigrant parents (IP) raising a child with a disability (e.g. divergent beliefs between family and service providers (SP) concerning the child's diagnosis and treatment, poor therapeutic alliance, limited language skills, daily stresses, lack of flexibility and complexity of the health care system, the SP's lack of training in cultural sensitivity). The SP have a primary role to play in the families' engagement process. Presently, little is known about SP's knowledge of barriers and strategies to enhance the engagement in treatment by IP raising a child with a disability. The aim of this qualitative study is to contribute to filling this gap. Semi-structured interviews were conducted with 21 SP from three large cities from Canada. Participants are SP including speech language pathologists, social workers, physiotherapists, occupational therapists, specialized educators, and psychologists who work with children with a language, motor, hearing or visual disability on a regular basis. Data analysis included inductive and iterative processes typically used for qualitative research as well as a thematic content analysis approach. To address the barriers that diminish the IP's engagement in their child's treatment, the SP highlighted three primary strategies: (a) overcoming the language barrier; (b) developing a shared understanding of the child's disability, and (c) helping the parents to understand the treatment process. A conceptual framework is presented which illustrates barriers and facilitators of IP's engagement. These findings suggest that several adaptations are needed within the health care services for the IP. They can help guide clinical practice in order to increase the level of treatment engagement of the IP raising a child with a disability. [ABSTRACT FROM AUTHOR]

Within a global context of growing health inequities, the fostering of partnerships and collaborative research have been promoted as playing a critical role in tackling health inequities and health system problems worldwide. Since 2004, the Canadian Coalition for Global Health Research (CCGHR) has facilitated annual Summer Institutes for new global health researchers aimed at strengthening global health research competencies and partnerships among participants. We sought to explore CCGHR Summer Institute alumni perspectives on the Summer Institute experience, particularly on the individual research pairings of Canadian and low- and middle-income countries researchers that have characterised the program. The results reveal that the Summer Institute offered an enriching learning opportunity for participants and worked to further their collaborative projects through providing dedicated one-on-one time with their international research partner, feedback from colleagues from around the world and mentorship by more senior researchers. Positive individual relationships among researchers, as well as the existence of institutional collaborations, employer and funding support, and agendas of local and national politicians were factors that have influenced the ongoing collaboration of partners. There is a need to more fully examine the interplay between individual and institutional-level collaborations, as well as their social and political contexts. [ABSTRACT FROM PUBLISHER]

Background: Overuse of computed tomography (CT) for minor head injury continues despite developed and rigorously validated clinical decision rules like the Canadian CT Head Rule (CCHR). Adherence to this sensitive and specific rule could decrease the number of CT scans performed in minor head injury by 35%. But in practice, the CCHR has failed to reduce testing, despite its accurate performance. Objectives: The objective was to identify nonclinical, human factors that promote or inhibit the appropriate use of CT in patients presenting to the emergency department (ED) with minor head injury. Methods: This was a qualitative study in three phases, each with interview guides developed by a multidisciplinary team. Subjects were recruited from patients treated and released with minor head injuries and providers in an urban academic ED and a satellite community ED. Focus groups of patients (four groups, 22 subjects total) and providers (three groups, 22 subjects total) were conducted until thematic saturation was reached. The findings from the focus groups were triangulated with a cognitive task analysis, including direct observation in the ED (>150 hours), and individual semistructured interviews using the critical decision method with four senior physician subject matter experts. These experts are recognized by their peers for their skill in safely minimizing testing while maintaining patient safety and engagement. Focus groups and interviews were audio recorded and notes were taken by two independent note takers. Notes were entered into ATLAS.ti and analyzed using the constant comparative method of grounded theory, an iterative coding process to determine themes. Data were double-coded and examined for discrepancies to establish consensus. Results: Five core domains emerged from the analysis: establishing trust, anxiety (patient and provider), constraints related to ED practice, the influence of others, and patient expectations. Key themes within these domains included patient engagement, provider confidence and experience, ability to identify and manage patient anxiety, time constraints, concussion knowledge gap, influence of health care providers, and patient expectations to get a CT. Conclusions: Despite high-quality evidence informing use of CT in minor head injury, multiple factors influence the decision to obtain CT in practice. Identifying and disseminating approaches and designing systems that help clinicians establish trust and manage uncertainty within the ED context could optimize CT use in minor head injury. [ABSTRACT FROM AUTHOR]

Background: Complementary and Alternative Medicine (CAM) is becoming a pillar in the rehabilitative efforts for many living with HIV/AIDS. A community-based research program called the Living Well Lab (LWL) was established in 2007, operating out of Friends For Life (FFL), a non-profit wellness center in Vancouver, Canada offering free CAM therapies to people living with HIV/AIDS. Therapies range from naturopathy to yoga. The LWL partnered with academic and community organizations to evaluate CAM use and changes in health and quality of life outcomes of FFL's HIV+ members. Methods: A longitudinal, combined methods approach assessed the health- and quality-of-life-related outcomes and experiences of CAM users. Participants completed outcome packages (5 time points) over 18 months, which focused on changes in physical and emotional states, satisfaction with services and social support. Interviews were conducted at baseline, 9- and 18-month time points. Quantitative analyses were descriptive while content analysis and thematic coding were used in the qualitative analysis. Results: Two hundred and seven members enrolled in the LWL. Quantitative data demonstrated improvement in mental and physical wellbeing, social support and patient satisfaction specifically: SF-12, Arizona Integrative Outcomes Scale and three visual analog scales (stress, pain and energy). Participants felt several factors contributed to these changes such as managing anxiety, accepting their illness, learning to relax, an increased capacity for self-care and social support. Conclusions: CAM use may be associated with changes to physical, social and mental wellbeing. Issues throughout the study provided important lessons for future research. [ABSTRACT FROM AUTHOR]

Objective:Risks have been a central concern in stem cell research overall, and in clinical trials of individuals with spinal cord injury (ISCIs) in particular. We sought to elucidate how two important stakeholder groups-health-care professionals (HCPs) and ISCIs-view and value both the physical and non-physical risks of stem cell interventions.Setting:The study was conducted in Canada, and included participants from both Canada and the United States America.Study design:We used semi-structured interviews to gain perspectives on risk from HCPs and ISCIs.Methods:We applied a constant comparative analytic strategy to derive themes from the discourse collected through the interviews.Results:We identified three major themes about risk from 12 HCP and 24 ISCI participants: focus, rationale and approach. The salient components of the themes differed: HCPs focus on the physical causes of risks, and the ISCIs on their downstream consequences as well as on non-physical risks; HCPs are concerned about evidence, and ISCIs about experience; and HCPs approach risk narrowly, whereas the approach of ISCIs is more broad and contextualized.Conclusion:Although major themes were common to the two stakeholder groups, the components of the themes were dissociable and illustrate differences in what HCPs and ISCIs worry about, why they worry and how they approach their worries. We draw upon these findings to make recommendations for improving risk communication and informed consent for stem cell research for spinal cord injury. [ABSTRACT FROM AUTHOR]

Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB's purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs ( n = 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed 'expectations' as a key finding. Through participants' discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike. [ABSTRACT FROM AUTHOR]