District nurse advocacy for choice to live and die at home in rural Australia

2014 ◽  
Vol 22 (4) ◽  
pp. 479-492 ◽  
Author(s):  
Frances M Reed ◽  
Les Fitzgerald ◽  
Melanie R Bish
Keyword(s):  
End Of Life ◽  
Rural Areas ◽  
End Of Life Care ◽  
Research Question ◽  
Empirical Literature ◽  
Life Care ◽  
District Nurse ◽  
District Nurses ◽  
Rural Australia ◽  
At Home

Background: Choice to live and die at home is supported by palliative care policy; however, health resources and access disparity impact on this choice in rural Australia. Rural end-of-life home care is provided by district nurses, but little is known about their role in advocacy for choice in care. Objectives: The study was conducted to review the scope of the empirical literature available to answer the research question: What circumstances influence district nurse advocacy for rural client choice to live and die at home?, and identify gaps in the knowledge. Method: Interpretive scoping methodology was used to search online databases, identify suitable studies and select, chart, analyse and describe the findings. Results: 34 international studies revealed themes of ‘the nursing relationship’, ‘environment’, ‘communication’, ‘support’ and ‘the holistic client centred district nursing role. Discussion: Under-resourcing, medicalisation and emotional relational burden could affect advocacy in rural areas. Conclusion: It is not known how district nurses overcome these circumstances to advocate for choice in end-of-life care. Research designed to increase understanding of how rural district nurses advocate successfully for client goals will enable improvements to be made in the quality of end-of-life care offered.

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.

scholarly journals Exploration of the Factor Structure of the Burden Experienced by Individuals Providing End-of-Life Care at Home

2018 ◽  
Vol 2018 ◽  
pp. 1-9 ◽  
Author(s):  
Chizuru Nagata ◽  
Hironori Yada ◽  
Junko Inagaki
Keyword(s):  
Factor Analysis ◽  
End Of Life ◽  
Factor Structure ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Life Care ◽  
Term Care ◽  
Care At Home ◽  
At Home

In Japan, the number of elderly people who require long-term care is increasing as a result of the country’s aging population. Consequently, the burden experienced by caregivers who provide end-of-life care at home has become a social problem. This study aimed to confirm the factor structure of such caregiver burden by analyzing the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI). The J-ZBI was administered to 389 caregivers providing end-of-life care, and 247 answers were analyzed, with exploratory factor analysis performed on the results. Consequently, a four-factor structure emerged (sacrificing life, personal strain, severe anxiety, and captivity); these four factors, constituting 15 items, were cumulatively named “J-ZBI_15.” In regard to reliability, Cronbach’sαcoefficient for each factor was high; in terms of validity, a confirmatory factor analysis was conducted to examine the four-factor structure, and the goodness of model fit was determined to be satisfactory. Further, the convergent validity was also high. The care burden experienced by those providing end-of-life care at home differs from the burden of caregivers of individuals with other diseases, such as Alzheimer’s. For assessing the burden felt by this population, the 15-item four-factor ZBI model is more appropriate than the single-factor 22-item ZBI, and we also determined that J-ZBI_8 is unsuitable for this task. Thus, measurement of family caregivers’ burden in regard to providing end-of-life care at home should be performed using the 15-item four-factor J-ZBI model.

scholarly journals General practitioners' provision of end-of-life care and associations with dying at home: a registry-based longitudinal study

2020 ◽  
Vol 37 (3) ◽  
pp. 340-347 ◽  
Author(s):  
Camilla Kjellstadli ◽  
Heather Allore ◽  
Bettina S Husebo ◽  
Elisabeth Flo ◽  
Hogne Sandvik ◽  
...  
Keyword(s):  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Interdisciplinary Collaboration ◽  
Home Visits ◽  
Community Dwelling ◽  
Life Care ◽  
Out Of Hours ◽  
Dying At Home ◽  
At Home

Abstract Background General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. Objective To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. Methods Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012–13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. Results Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which <3% died at home. GP office consultations decreased towards the end of life. The likelihood of home death versus another location increased in relation to GP home visits [one home visit odds ratio (OR) 1.92, confidence interval (CI) 1.71–2.15; two or more OR 3.49, CI 3.08–3.96] and GP interdisciplinary collaboration (one contact OR 1.76, CI 1.59–1.96; two or more OR 2.52, CI 2.32–2.74). Conclusions GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.

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.

Planning and Providing End-of-life Care in Rural Areas

2006 ◽  
Vol 22 (2) ◽  
pp. 174-181 ◽  
Author(s):  
Donna M. Wilson ◽  
Christopher Justice ◽  
Sam Sheps ◽  
Roger Thomas ◽  
Pam Reid ◽  
...  
Keyword(s):  
End Of Life ◽  
Rural Areas ◽  
End Of Life Care ◽  
Life Care

scholarly journals NP-012 Standardisation of analgesia and sedation infusion solutions in paediatric palliative patients receiving end-of-life care at home

2019 ◽  
Author(s):  
B Garcia-Palop B ◽  
A Morgenstern Isaak ◽  
C Cuso Cuquerella ◽  
I Jimenez Lozano ◽  
A Fernandez-Polo A ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care At Home ◽  
Palliative Patients ◽  
Sedation Infusion ◽  
At Home
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