scholarly journals Home-Based End of Life Care for Children and their Families – A Systematic Scoping Review and Narrative Synthesis

2020 ◽  
Vol 55 ◽  
pp. 126-133 ◽  
Author(s):  
Cari Malcolm ◽  
Katherine Knighting ◽  
Charlotte Taylor
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Home Based

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

DEVELOPING TRAINING FOR SUPPORTERS OF LAY-CARERS INVOLVED WITH HOME BASED END OF LIFE CARE: A PARTICIPATORY APPROACH

2014 ◽  
Vol 4 (1) ◽  
pp. 107.3-107
Author(s):  
B Hardy ◽  
G Caswell ◽  
G Ewing ◽  
G Grande ◽  
S Kennedy ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Participatory Approach ◽  
Life Care ◽  
Home Based

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

2012 ◽  
Vol 18 (4) ◽  
pp. 491-516 ◽  
Author(s):  
Catherine Ward-Griffin ◽  
Carol L. McWilliam ◽  
Abram Oudshoorn
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Relational Experiences ◽  
Home Based

scholarly journals Measuring indicators of health system performance for palliative and end-of-life care using health administrative data: a scoping review

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 1438
Author(s):  
Suman Budhwani ◽  
Ashlinder Gill ◽  
Mary Scott ◽  
Walter P. Wodchis ◽  
JinHee Kim ◽  
...  
Keyword(s):  
Performance Measurement ◽  
End Of Life ◽  
Administrative Data ◽  
Scoping Review ◽  
System Performance ◽  
End Of Life Care ◽  
Population Level ◽  
Health System Performance ◽  
Life Care ◽  
Health Administrative Data

Background: A plethora of performance measurement indicators for palliative and end-of-life care currently exist in the literature. This often leads to confusion, inconsistency and redundancy in efforts by health systems to understand what should be measured and how.  The objective of this study was to conduct a scoping review to provide an inventory of performance measurement indicators that can be measured using population-level health administrative data, and to summarize key concepts for measurement proposed in the literature.  Methods: A scoping review using MEDLINE and EMBASE, as well as grey literature was conducted.  Articles were included if they described performance or quality indicators of palliative and end-of-life care at the population-level using routinely-collected administrative data.  Details on the indicator such as name, description, numerator, and denominator were charted. Results: A total of 339 indicators were extracted.  These indicators were classified into nine health care sectors and one cross-sector category.  Extracted indicators emphasized key measurement themes such as health utilization and cost and excessive, unnecessary, and aggressive care particularly close to the end-of-life.  Many indicators were often measured using the same constructs, but with different specifications, such as varying time periods used to ascribe for end-of-life care, and varying patient populations.  Conclusions: Future work is needed to achieve consensus ‘best’ definitions of these indicators as well as a universal performance measurement framework, similar to other ongoing efforts in population health.  Efforts to monitor palliative and end-of-life care can use this inventory of indicators to select appropriate indicators to measure health system performance.

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

End-of-Life Care in Patients Exposed to Home-Based Palliative Care vs Hospice Only

2019 ◽  
Vol 67 (6) ◽  
pp. 1226-1233 ◽  
Author(s):  
Susan E. Wang ◽  
In-Lu Amy Liu ◽  
Janet S. Lee ◽  
Peter Khang ◽  
Romina Rosen ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Home Based

scholarly journals Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review

2018 ◽  
Vol 99 (4) ◽  
pp. 301-316 ◽  
Author(s):  
Daniel S. Gardner ◽  
Meredith Doherty ◽  
Gleneara Bates ◽  
Aliza Koplow ◽  
Sarah Johnson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Ethnic Disparities ◽  
Racial And Ethnic Disparities ◽  
Life Care ◽  
Search Terms ◽  
Communities Of Color ◽  
Social Environmental

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.

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