scholarly journals 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

2015 ◽  
Vol 19 (2) ◽  
pp. 154-161 ◽  
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

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

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

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.

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

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

scholarly journals Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Dementia ◽  
2016 ◽  
Vol 16 (2) ◽  
pp. 158-177 ◽  
Author(s):  
Lill Sverresdatter Larsen ◽  
Hans Ketil Normann ◽  
Torunn Hamran
Keyword(s):  
Family Caregivers ◽  
User Participation ◽  
Positioning Theory ◽  
People With Dementia ◽  
Home Based ◽  
Decision Making Processes ◽  
Care Practices ◽  
Home Based Care ◽  
Legal Consent ◽  
Depth Interviews

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.

scholarly journals Continuity of home-based care for persons with dementia from formal and family caregivers’ perspective

Dementia ◽  
2016 ◽  
Vol 18 (3) ◽  
pp. 846-863 ◽  
Author(s):  
Lill Sverresdatter Larsen ◽  
Hans Ketil Normann ◽  
Torunn Hamran
Keyword(s):  
Family Caregivers ◽  
Home Based ◽  
Home Based Care

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Assessment Tools ◽  
Theory Approach ◽  
Home Based ◽  
Number Of Patients ◽  
Primary Family

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

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