Sleeping with One Eye Open: The Sleep experience of Family Members Providing Palliative Care at Home

2011 ◽  
Vol 27 (2) ◽  
pp. 69-78 ◽  
Author(s):  
Brenda Hearson ◽  
Susan McClement ◽  
Diana E. McMillan ◽  
Michael Harlos
Keyword(s):  
Palliative Care ◽  
Family Members ◽  
Care At Home ◽  
At Home

scholarly journals Caring and Conflict-Palliative Care in the Armed Forces: The Challenges for Caregivers

2021 ◽  
Vol 0 ◽  
pp. 1-14
Author(s):  
Savita Butola ◽  
Sushma Bhatnagar ◽  
Fiona Rawlinson
Keyword(s):  
Palliative Care ◽  
Rural Areas ◽  
Family Members ◽  
Community Support ◽  
Armed Forces ◽  
Structured Interviews ◽  
Transfer Policy ◽  
Remote Areas ◽  
Care At Home ◽  
At Home

Objectives: In India, Palliative care remains inaccessible, especially in remote areas. This study aimed at exploring the experience of caregivers related to arranging palliative care at home, for personnel and family members of an armed force. Materials and Methods: Qualitative study based on thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. Results: Lack of palliative care in rural areas makes arranging home care challenging for Indian caregivers, especially in armed forces. The families stay alone and personnel cannot be there to look after loved ones. Constraints of leave, financial and legal problems, frequent movement and social isolation disrupt care as well as family and community support systems, leading to psycho-social problems and stress for the serving personnel as well as families. Educating staff, integrating palliative care into existing medical services, coordinating with other agencies to increase awareness and provide care at home, access to opioids, timely leave, reimbursement of expenses, increased family accommodation, guidance about benefits, and considerate implementation of transfer policy can help mitigate some of their problems. Conclusion: These caregivers face physical exhaustion, psycho-social, financial, legal, and spiritual issues- some common to all rural Indians and others unique to the armed forces. Understanding their experiences will help the providers find solutions, especially in relation to the unique needs of the men in uniform.

Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences

1998 ◽  
Vol 14 (2) ◽  
pp. 14-22 ◽  
Author(s):  
Kelli I. Stajduhar ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Qualitative Methods ◽  
Family Caregiving ◽  
Family Members ◽  
Loved One ◽  
The Family ◽  
Care At Home ◽  
Depth Interviews ◽  
Hiv Aids ◽  
At Home

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

Attending to the Suffering Other: A Case Study of Teleconsultation in Palliative Care at Home

2018 ◽  
pp. 1-17
Author(s):  
Jelle van Gurp ◽  
Jeroen Hasselaar ◽  
Evert van Leeuwen ◽  
Martine van Selm ◽  
Kris Vissers
Keyword(s):  
Palliative Care ◽  
Care At Home ◽  
At Home

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.

scholarly journals What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
M. G. Oosterveld-Vlug ◽  
B. Custers ◽  
J. Hofstede ◽  
G. A. Donker ◽  
P. M. Rijken ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Nursing Staff ◽  
Information Transfer ◽  
Essential Elements ◽  
Community Nursing ◽  
Structured Interviews ◽  
High Quality ◽  
Care At Home ◽  
At Home

Abstract Background In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. Methods Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. Results Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. Conclusions Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

Oncology to specialised palliative home care systematic transition: the Domus randomised trial

2020 ◽  
Vol 10 (3) ◽  
pp. 350-357
Author(s):  
Kirstine Benthien ◽  
Pernille Diasso ◽  
Annika von Heymann ◽  
Mie Nordly ◽  
Geana Kurita ◽  
...  
Keyword(s):  
Palliative Care ◽  
Fast Track ◽  
Symptom Burden ◽  
Assessment System ◽  
Place Of Death ◽  
Oncological Treatment ◽  
Care At Home ◽  
At Home

ObjectivesTo assess the effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on symptom burden, to explore intervention mechanisms through patient and intervention provider characteristics and to assess long-term survival and place of death.MeasuresThe effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on patient symptom burden was studied in the Domus randomised clinical trial. Participants had incurable cancer and limited treatment options. The intervention was provided by specialised palliative home teams (SPT) based in hospice or hospital and was enriched with a psychological intervention for patient and caregiver dyad. Symptom burden was measured with Edmonton Symptom Assessment System (ESAS-r) at baseline, 8 weeks and 6 months follow-up and analysed with mixed models. Survival and place of death was analysed with Kaplan-Meier and Fisher’s exact tests.ResultsThe study included 322 patients. Tiredness was significantly improved for the Domus intervention group at 6 months while the other nine symptom outcomes were not significantly different from the control group. Exploring the efficacy of intervention provider demonstrated significant differences in favour of the hospice SPT on four symptoms and total symptom score. Patients with children responded more favourably to the intervention. The long-term follow-up demonstrated no differences between the intervention and the control groups regarding survival or home deaths.ConclusionsThe Domus intervention may reduce tiredness. Moreover, the intervention provider and having children might play a role concerning intervention efficacy. The intervention did not affect survival or home deaths.Trial registration numberNCT01885637

scholarly journals 3 Palliative care at home in patients with oncological diseases: trends in characteristics and circumstances of the primary family caregiver

2020 ◽  
Author(s):  
MS Giménez Campos ◽  
Villaverde P Flors ◽  
Melchor E Soriano ◽  
Mulió A Bahamontes ◽  
Martinez B Valdivieso ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregiver ◽  
Oncological Diseases ◽  
Care At Home ◽  
Primary Family ◽  
At Home
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