Cultural influences on palliative family caregiving: service recommendations specific to the Vietnamese in Canada

10.1186/s13104-015-1252-3BMC Research Notes8128

Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care

This article applies a micro-meso-macro analytical framework to understand clinicians’ experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients’ and their family caregivers’ quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians’ use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice

End-of-life Care and Interprofessional Communication: Not Simply a Matter of More

INTRODUCTION A well-functioning interprofessional team has been identified as a central requirement for high quality palliative care. In particular, interprofessional communication and teamwork have been directly linked to patient and family health outcomes. However, evidence suggests that substandard communication and team collaboration between healthcare providers is a persistent challenge that is heightened during palliative care in in-patient settings. This research examined the mechanisms of communication that shaped and impeded interprofessional team practice and coordinated palliative care on acute medical and long-term care units. METHODS This participatory action research project was informed by planned-action and educative-research strategies. The research team worked with healthcare practitioners who cared for dying people in acute and long-term care settings to develop and change practices and institutional arrangements through concurrent phases of ongoing analysis, dialogue, action, and reflection. Data-gathering methods included audio-recorded baseline interviews, observations and on site interactions with field notes, focused group discussions, and meetings. All data was coded using NVivo 9 and a subsequent second level analysis was conducted using Critical Discourse Analysis and Relational Inquiry as an analytical framework. FINDINGS Two main findings included (a) the way in which participants drew upon socio-cultural knowledge to structure and enact communication processes and to describe and interpret their communication experiences within the team, and (b) four recurring relational disjunctures in which conflicting and/or competing messages, goals, or processes hindered the flow and processes of communication and interprofessional team practice. CONCLUSION Given the way in which ideologies and normative practices shape and contribute to ineffective communicative patterns, the findings suggest that the issue is not only how much communication is happening, but the nature of that communication. Thus, addressing the conflicting and/or competing messages, goals, or processes shaping the flow and processes of communication within the interprofessional team is necessary. In particular, explicitly addressing the complex interplay between autonomous professional practice and interprofessional team collaboration is a crucial step in supporting more effective communication and team cohesion

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

Canada\u27s Compassionate Care Benefit: Is it An Adequate Public Health Response to Addressing the Issue of Caregiver Burden in End-of-Life Care?

Background: An increasingly significant public health issue in Canada, and elsewhere throughout the developedworld, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economicconsequences. In this article, we specifically examine how Canada’s Compassionate Care Benefit (CCB) - acontributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response insustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects ofcaregiver burden that are addressed within the population health promotion (PHP) model.Methods: As part of a national evaluation of Canada’s Compassionate Care Benefit, 57 telephone interviews wereconducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths andweaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software andemerging themes were identified by the research team, with such findings published elsewhere. The purpose ofthe present analysis was identified after comparing the findings to the literature specific to caregiver burden andpublic health, after which data was analyzed using the PHP model as a guiding framework.Results: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that areimplicated in their burden experience: gender, income and social status, working conditions, health and socialservices, social support network, and personal health practises and coping strategies. They recognized the need forimproving the CCB to better address these determinants.Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up toits full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfillthe potential it holds for serving as one public health response to caregiver burden that forms part of a healthypublic policy that addresses the determinants of this burden

The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain

“You can’t die here”: an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada

Abstract Background One measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of ‘choice’ people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied. Methods Drawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed. Results Participants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay ‘in-place’ at the end of life. Analysis reveals three main barriers impeding their ‘choice’ to remain in-place at the end of life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams. Conclusions Findings demonstrate how the rhetoric of ‘choice’ in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals’ control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. Re-defining ‘home’ within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care can help to overcome existing barriers to delivering palliative care in various settings and increase the opportunity for all to spend their end of life in the places that they prefer

Team-Based Integrated Knowledge Translation for Enhancing Quality of Life in Long-term Care Settings: A Multi-method, Multi-sectoral Research Design

Multi-sectoral, interdisciplinary health research is increasingly recognizing integrated knowledge translation (iKT) as essential. It is characterized by diverse research partnerships, and iterative knowledge engagement, translation processes and democratized knowledge production. This paper reviews the methodological complexity and decision-making of a large iKT project called Seniors - Adding Life to Years (SALTY), designed to generate evidence to improve late life in long-term care (LTC) settings across Canada. We discuss our approach to iKT by reviewing iterative processes of team development and knowledge engagement within the LTC sector. We conclude with a brief discussion of the important opportunities, challenges, and implications these processes have for LTC research, and the sector more broadly

The caregivers of persons living with HIV/AIDS: the experience of caring for a dying family member at home

While some research has been conducted on HIV/AIDS family caregiving, it is limited in addressing the experience of family members who provide care to persons with HIV/AIDS (PWHIV/AIDS) who are dying at home and planning for a home death. Furthermore, much of the general family caregiving research focuses on caregiving tasks and related effects on the caregiver. The purpose of this study was to explore the day-to-day experiences of family members who care for their dying loved one at home with HIV/AIDS. Seven family members who were caring for or had cared for a PWHIV/AIDS at home in the last year were interviewed using an unstructured interview format. Verbatim transcripts of the interviews were analyzed using the constant-comparative method and the methodological guidance of grounded theory. The data analysis contributed to the development of a substantive theory of HIV/AIDS family caregiving. The findings revealed that work characterized the experiences of family members while they lived in a world of uncertainty and stigma. Promising to fulfill the wishes of the loved one lead family members to engage in both personal and pragmatic work. In order to manage their work, caregivers developed various strategies such as seeking support and working as a team. Several conditions affected the caregivers' strategies such as the accessibility of services and the nature of support. These conditions and strategies ultimately resulted in a variety of consequences that affected the caregivers' bereavment. HIV/AIDS family caregiving was an intense, emotional, and powerful experience. It was an experience filled with pride and enrichment, or conversely, with anger and disillusionment. Coping with the extensive demands of HIV/AIDS family caregiving required considerable time, energy, and commitment that often went unrecognized and unsupported. Findings reflect a significant need for interventions designed to provide direct and effective support for HIV/AIDS family caregivers. Failure to address the needs of caregivers is not only morally and ethically unacceptable but also demonstrates a myopic view of the caregivers' experiences. The richness of the caregivers' stories and the impact on their lives cannot be denied and they demand creative, professional solutions.Applied Science, Faculty ofNursing, School ofGraduat