Effectiveness of a Holistic Capacity-Building Program for Volunteers in Community-Based End-of-Life Care

Objective: Despite the importance of volunteers in end-of-life care (EoLC), ways to empower their engagement therein remain unclear. The aim of our study was to examine the effectiveness of a holistic capacity-building program for volunteers in community-based EoLC. Methods: Applicants completed a capacity-building program in four steps: motivational screening, core competence training, internships, and in-service supervision. Screening involved completing a self-administered risk assessment and being interviewed by a social worker, and a questionnaire was developed to evaluate the effectiveness of training at pretraining, posttraining, and 6-month follow-up. Results: Of 171 applicants, 88 completed core competence training after screening, and 53 continued volunteering for the 6 months that followed. Their competence in EoLC, awareness of self-care, and death work competence significantly improved after training and remained intact at 6-month follow-up. Conclusions: The four-phase capacity-building program effectively empowered volunteers to provide EoLC for elderly persons in their communities.

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End-of-Life Doulas: Documenting Their Backgrounds and Services

OMEGA - Journal of Death and Dying ◽

10.1177/00302228211047097 ◽

2021 ◽

pp. 003022282110470

Author(s):

Amy Dellinger Page ◽

Jonelle H. Husain

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Qualitative Interviews ◽

Family Members ◽

Demographic Characteristics ◽

Life Care ◽

Healthcare Settings ◽

Survey Results ◽

Original Survey

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

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Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives

BMJ Open ◽

10.1136/bmjopen-2020-037466 ◽

2020 ◽

Vol 10 (8) ◽

pp. e037466

Author(s):

Patricia Harasym ◽

Sarah Brisbin ◽

Misha Afzaal ◽

Aynharan Sinnarajah ◽

Lorraine Venturato ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Long Term Care ◽

Symptom Assessment ◽

Assessment Tools ◽

Life Care ◽

Community Based ◽

Term Care

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

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Cultural Values, Preferences and Goals and of End of Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (TH370C)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2019.12.100 ◽

2020 ◽

Vol 59 (2) ◽

pp. 439-440

Author(s):

Anita Eseenam Agbeko ◽

Ronit Elk ◽

Michael Owusu-Ansah

Keyword(s):

End Of Life ◽

Cultural Values ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Community Based

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End-of-Life Care for Children Enrolled in a Community-Based Pediatric Palliative Care Program

Journal of Palliative Medicine ◽

10.1089/jpm.2013.0576 ◽

2014 ◽

Vol 17 (5) ◽

pp. 589-591 ◽

Cited By ~ 20

Author(s):

Lisa M. Niswander ◽

Philene Cromwell ◽

Jeanne Chirico ◽

Alyssa Gupton ◽

David N. Korones

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Care Program ◽

Pediatric Palliative Care ◽

Life Care ◽

Palliative Care Program ◽

Community Based

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Meeting complexity with collaboration: a proposed conceptual framework for participatory community-based music therapy research in end of life-care

Qualitative Research in Medicine & Healthcare ◽

10.4081/qrmh.2018.7850 ◽

2018 ◽

Vol 2 (3) ◽

Author(s):

Wolfgang Schmid

Keyword(s):

Music Therapy ◽

Conceptual Framework ◽

End Of Life ◽

End Of Life Care ◽

Quality Care ◽

Life Care ◽

Educational Strategies ◽

Community Based ◽

Team Members ◽

Participatory Music

Research in end-of-life care is complex with specific ethical and practical challenges related to epistemology, methodology and recruitment of people approaching the end of life. However, to ensure the provision of high-quality care research efforts need to be aligned with the priorities of patients, their families, and interdisciplinary team members. A more systematic engagement of all three groups in research is needed to promote tailored and appropriate end-of-life care. In this methodological article I propose a conceptual framework for community-based participatory music therapy research in end-of-life care scenarios as one promising strategy to respond to ethical and practical challenges, to handle complexity and advance integration of perspectives. The conceptual framework consists of two thematic clusters i) Participlinarity across contexts, and ii) Community-based participatory music therapy research in end-of-life care scenarios. Though in the early stages of development, the framework addresses issues of educational strategies and continuity of care, and aims to contribute to innovative music therapy research in the future.

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The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis

Journal of General Internal Medicine ◽

10.1007/s11606-019-05482-w ◽

2019 ◽

Vol 35 (3) ◽

pp. 874-884 ◽

Cited By ~ 5

Author(s):

Markus Schichtel ◽

Bee Wee ◽

Rafael Perera ◽

Igho Onakpoya

Keyword(s):

Heart Failure ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Meta Analysis ◽

Care Planning ◽

Life Care ◽

Advance Care

Abstract Background Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs). Methods We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method. Results Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients’ satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient’s disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP. Conclusions ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.

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