scholarly journals Symptom Experiences and Needs of Older Persons Living with Hemodialysis in Relation to Integrating Home Telehealth into Holistic End of Life Care: Phase I

2021 ◽  
Vol 20 (4) ◽  
Author(s):  
Wanicha Pungchompoo ◽  
◽  
Warawan Udomkhwamsuk ◽  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Older Persons ◽  
Demographic Data ◽  
Spiritual Support ◽  
Life Care ◽  
Care Needs ◽  
Symptom Experiences ◽  
Home Telehealth ◽  
At Home

Abstract The integration of home telehealth into holistic end of life care with nurse oversight for older persons living with hemodialysis is still limited in Thailand. This study explains the symptom experiences and health care needs related to integrating a home telehealth model into end of life care for older persons living with hemodialysis (OPLH). The paper represents the first phase of a mixed methods exploratory sequential study with dominant quantitative components, carried out over a six-month period. Purposive sampling was used to collect data from 100 OPLH. The instruments included the VOICES (View of Informal Carers Evaluation of Service-ESRD/Thai – patients’ version) questionnaire, the 9-item Thai Health Status Assessment questionnaire, and a demographic data form. The quantitative data were analysed using the statistical package SPSS version 17. Most of the participants had comorbid conditions (98%). The most common of these were hypertension (41.02%) followed by diabetes mellitus (23.25%). 25% had shortness of breath, and some had pain (31%), swelling (31%), anorexia some of the time (30%), and nausea and vomiting (15%). Moreover, participants also had symptoms of anxiety (23%), and moderate stress (10%). 8% had to be readmitted to hospital at least twice per month. Most participants had never received home care. The needs of the participants in relation to their holistic end of life care at home were reported in terms of: 1) knowledge of symptoms management at home; 2) activity and role management; 3) emotional management; and 4) spiritual support. The telehealth provision was mentioned by participants as an important part of their care, requiring VDO visiting, telephone counselling, and web-based education/ monitoring. Keywords: ESRD, Older persons living with hemodialysis (OPLH), Home telehealth.

End‐of‐life care needs for noncancer patients who want to die at home in South Korea

2020 ◽  
Vol 26 (2) ◽  
Author(s):  
Jong‐Eun Lee ◽  
Jiwon Lee ◽  
Hanul Lee ◽  
Jin‐Kyoung Park ◽  
Younghye Park ◽  
...  
Keyword(s):  
South Korea ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Needs ◽  
At Home

End-of-life care in a nursing home: Assistant nurses’ perspectives

2018 ◽  
Vol 26 (6) ◽  
pp. 1721-1733 ◽  
Author(s):  
Bodil Holmberg ◽  
Ingrid Hellström ◽  
Jane Österlind
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Persons ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Life Care ◽  
Care Needs ◽  
Assistant Nurses

Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses’ perspectives of providing care to older persons at the end of life in a nursing home. Research design: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; “Death a natural part of life”; “The older person’s well-being”; and “Care in the moment of death”; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons’ dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.

scholarly journals We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

2021 ◽  
Vol 18 (9) ◽  
pp. 4415
Author(s):  
Mirinae Kim ◽  
Minju Kim
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Treatment Needs ◽  
Focus Group Interviews ◽  
Care Needs ◽  
Basic Care ◽  
Life Sustaining Treatment ◽  
Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

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.

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