Interactions between healthcare personnel and family caregivers of people with dementia from minority ethnic backgrounds in home‐based care—An explorative qualitative study

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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Designing a web-application to support home-based care of childhood CKD stages 3-5: Qualitative study of family and professional preferences

BMC Nephrology ◽

10.1186/1471-2369-15-34 ◽

2014 ◽

Vol 15 (1) ◽

Cited By ~ 16

Author(s):

Veronica M Swallow ◽

Andrew G Hall ◽

Ian Carolan ◽

Sheila Santacroce ◽

Nicholas JA Webb ◽

...

Keyword(s):

Qualitative Study ◽

Web Application ◽

Home Based ◽

Home Based Care ◽

Professional Preferences

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Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

Palliative Medicine ◽

10.1177/0269216316673552 ◽

2016 ◽

Vol 31 (8) ◽

pp. 726-733 ◽

Cited By ~ 24

Author(s):

Nathan Davies ◽

Greta Rait ◽

Laura Maio ◽

Steve Iliffe

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Psychological Impact ◽

Third Sector ◽

Life Care ◽

People With Dementia ◽

Diagnosis Of Dementia ◽

Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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Home-Based Pediatric Cancer Care: Perspectives and Improvement Suggestions From Children, Family Caregivers, and Clinicians

JCO Oncology Practice ◽

10.1200/op.20.00958 ◽

2021 ◽

pp. OP.20.00958

Author(s):

Lindsay A. Jibb ◽

Julie Chartrand ◽

Tatenda Masama ◽

Donna L. Johnston

Keyword(s):

Family Caregivers ◽

Pediatric Cancer ◽

Cancer Care ◽

Care Center ◽

System Level ◽

Pediatric Care ◽

Children With Cancer ◽

Key Informants ◽

Home Based ◽

Home Based Care

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.

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Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: A feasibility study

European Journal of Oncology Nursing ◽

10.1016/j.ejon.2014.09.006 ◽

2015 ◽

Vol 19 (2) ◽

pp. 154-161 ◽

Cited By ~ 12

Author(s):

K. Luker ◽

M. Cooke ◽

L. Dunn ◽

M. Lloyd-Williams ◽

M. Pilling ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Feasibility Study ◽

Home Based ◽

Home Based Care ◽

Support Family

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Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study

PLoS ONE ◽

10.1371/journal.pone.0228924 ◽

2020 ◽

Vol 15 (2) ◽

pp. e0228924

Author(s):

Nomaxabiso Mildred Mooi ◽

Busisiwe Purity Ncama

Keyword(s):

South Africa ◽

Qualitative Study ◽

Family Caregivers ◽

Nutritional Therapy ◽

Perceived Needs ◽

Home Based

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Supporting people with dementia and their family caregivers through a home‐based, dyadic, multisensory stimulation intervention: A feasibility study

Alzheimer s & Dementia ◽

10.1002/alz.038836 ◽

2020 ◽

Vol 16 (S7) ◽

Author(s):

Patrick Pui Kin Kor ◽

Clare Yu ◽

Justina Yat Wa Liu ◽

Daphne Sze Ki Cheung ◽

Rick Yiu Cho Kwan ◽

...

Keyword(s):

Family Caregivers ◽

Feasibility Study ◽

Multisensory Stimulation ◽

People With Dementia ◽

Home Based

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Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

International Psychogeriatrics ◽

10.1017/s1041610219001017 ◽

2019 ◽

Vol 32 (2) ◽

pp. 255-265

Author(s):

Mayumi Nishimura ◽

Ayako Kohno ◽

Jenny T. van der Steen ◽

Toru Naganuma ◽

Takeo Nakayama

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

Life Experience ◽

Central Position ◽

Structured Interviews ◽

Cultural Backgrounds ◽

Term Care ◽

Family Structures ◽

People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

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