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
2021 ◽  
pp. OP.20.00958
Author(s):  
Lindsay A. Jibb ◽  
Julie Chartrand ◽  
Tatenda Masama ◽  
Donna L. Johnston

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.


Dementia ◽  
2016 ◽  
Vol 16 (2) ◽  
pp. 158-177 ◽  
Author(s):  
Lill Sverresdatter Larsen ◽  
Hans Ketil Normann ◽  
Torunn Hamran

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.


2021 ◽  
Vol 97 ◽  
pp. 104507
Author(s):  
Yuhei Otobe ◽  
Mizue Suzuki ◽  
Yosuke Kimura ◽  
Shingo Koyama ◽  
Iwao Kojima ◽  
...  

2012 ◽  
Vol 27 (1) ◽  
pp. 61-66
Author(s):  
Seiichi TAKEMASA ◽  
Ryoma NAKAGOSHI ◽  
Masahito MURAKAMI ◽  
Masayuki UESUGI ◽  
Yuri INOUE ◽  
...  

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