Service Availability in Assisted Living and Other Community-Based Residential Settings at the End of Life

2021 ◽  
Author(s):  
Melissa D. Aldridge ◽  
Katherine A. Ornstein ◽  
Karen McKendrick ◽  
Jennifer Reckrey
Keyword(s):  
End Of Life ◽  
Assisted Living ◽  
Service Availability ◽  
Community Based ◽  
Residential Settings

scholarly journals Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Assisted Living ◽  
End Of Life Care ◽  
Life Care ◽  
Term Care ◽  
Care Partners ◽  
Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

scholarly journals Concordance of Family and Staff Member Reports About End of Life in Assisted Living and Nursing Homes

2009 ◽  
Vol 50 (1) ◽  
pp. 112-120 ◽  
Author(s):  
S. E. Rich ◽  
C. S. Williams ◽  
S. Zimmerman
Keyword(s):  
Nursing Homes ◽  
End Of Life ◽  
Assisted Living ◽  
Staff Member

Rural community-based nurses’ self-reported knowledge and skills in the provision of psychosocial care to palliative and end-of-life clients and carers

2021 ◽  
pp. 1-9
Author(s):  
Eli Ristevski ◽  
Michael Leach ◽  
Ellen Bolton ◽  
Melissa Spargo ◽  
Anny Byrne ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Rural Community ◽  
Psychosocial Care ◽  
Assessment Tools ◽  
Formal Training ◽  
Educational Strategies ◽  
Community Based ◽  
Knowledge And Skills ◽  
Practice Gaps

Abstract Objective This study examined rural community-based nurses' self-reported knowledge and skills in the provision of psychosocial care to rural residing palliative and end-of-life clients and carers. We further sought to determine correlates of knowledge gaps to inform workforce education and planning. Method Nurses from a rural area of Victoria, Australia, were invited to complete an electronic questionnaire rating their knowledge against 6 national palliative care standards and 10 screening and assessment tools. A 5-point scale of (1) No experience to (5) Can teach others was used to rate knowledge. Results were classified into three categories: practice gaps, areas of consolidation, and strengths. Descriptive and logistical regression was used to analyze data. Results A total of 122 of 165 nurses (response rate = 74%) completed the survey. Of these nurses, 87% were Registered Nurses, 43% had ≥10 years' experience in palliative care, and 40% had palliative care training. The majority of practices across the standards and screening and assessment tools were rated as knowledge strengths (N = 55/67, 82%). Gaps and areas of consolidation were in the use of client and carer assessment tools, the care of specific populations such as children, supporting carers with appropriate referrals, resources, and grief, and facilitating the processes of reporting a death to the coroner. Lack of formal training and lower years of experience were found to be associated with practice gaps. Significance of results Our study found rural nurses were confident in their knowledge and skills in the majority of psychosocial care. As generalist nurses make up the majority of the rural nursing workforce, further research should be undertaken on what educational strategies are needed to support and upskill rural community-based nurses to undertake formal training in palliative care.

scholarly journals 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 ◽  
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.

Theory-driven role model stories improve palliative care knowledge among a diverse older population

2020 ◽  
pp. 1-7 ◽  
Author(s):  
Deborah F. Hoe ◽  
Kayla Johari ◽  
Anna Rahman ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Los Angeles ◽  
Assisted Living ◽  
Role Models ◽  
Role Model ◽  
Community Based ◽  
Real People ◽  
English Speaking ◽  
Knowledge Scale ◽  
Cognitively Intact

Abstract Objective To test the effectiveness of theoretically driven role model video stories in improving knowledge of palliative care among a diverse sample of older adults. Method We developed three 3–4 min long theoretically driven role model video stories. We then recruited cognitively intact, English-speaking adults aged 50 and older from senior centers, assisted living, and other community-based sites in the greater Los Angeles area. Using a pretest–posttest study design, we surveyed participants using the 13-item Palliative Care Knowledge Scale (PaCKS) and also asked participants about their intentions to enroll in palliative care should the need arise. Participants first completed the pretest, viewed the three videos, then completed the posttest comprised of the same set of questions. Results PaCKS score improved from an average of 4.5 at baseline to 10.0 following video screening (t(126) = 12.0, p < 0.001). Intentions to enroll oneself or a family member in palliative care rose by 103% (χ2 = 7.8, p < 0.01) and 110% (χ2 = 7.5, p < 0.01), respectively. Regression analysis revealed that participants who believed the role models are real people (β = 2.6, SE = 1.2, p < 0.05) significantly predicted higher change in PaCKS score. Conversely, participants with prior knowledge of, or experience with, palliative care (β = −5.9, SE = 0.8, p < 0.001), non-whites (β = −3.6, SE = 0.9, p < 0.001), and widows (β = −2.9, SE = 1.1, p < 0.01) significantly predicted lower changes in PaCKS score. Significance of results This study suggests that theoretically driven role model video stories may be an effective strategy to improve palliative care knowledge. Role model video stories of diverse palliative care patients provide one way to mitigate health literacy barriers to palliative care knowledge.

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

2014 ◽  
Vol 17 (5) ◽  
pp. 589-591 ◽  
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

scholarly journals STAFFING AND SERVICE AVAILABILITY IN ASSISTED LIVING: THE IMPORTANCE OF NURSE DELEGATION POLICIES

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 787-787
Author(s):  
A S Beeber ◽  
S Zimmerman ◽  
C Madeline Mitchell ◽  
D Reed
Keyword(s):  
Assisted Living ◽  
Service Availability

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

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.

Sign in / Sign up

Export Citation Format

Share Document