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"Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom .ORCID iD: 0000-0001-5539-974x
Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom .
Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands .
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.ORCID iD: 0000-0001-5816-7231
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2024 (English)In: BMC Nephrology, E-ISSN 1471-2369, Vol. 25, no 1, article id 7Article in journal (Refereed) Published
Abstract [en]

Background: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease.

Methods: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis.

Results: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met.

Conclusions: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2024. Vol. 25, no 1, article id 7
Keywords [en]
informal caregiver, chronic kidney disease, support, unmet needs, social networks, thematic analysis
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health Care Research; Psychology
Identifiers
URN: urn:nbn:se:uu:diva-512211DOI: 10.1186/s12882-023-03444-3ISI: 001136271300002PubMedID: 38172754OAI: oai:DiVA.org:uu-512211DiVA, id: diva2:1799522
Funder
Swedish Research Council, 2009–1093EU, Horizon 2020, 814072U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleUppsala UniversityAvailable from: 2023-09-22 Created: 2023-09-22 Last updated: 2024-07-04Bibliographically approved
In thesis
1. E-mental health interventions for informal caregivers: Development with a focus on implementation
Open this publication in new window or tab >>E-mental health interventions for informal caregivers: Development with a focus on implementation
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The four studies within this thesis contributed to the identification of key factors to be considered when designing and implementing e-mental health (e-MH) interventions for informal caregivers. 

Study I was a mixed-methods systematic review to examine factors related to the effectiveness and implementation of e-MH interventions for informal caregivers of adults with chronic diseases. A thematic synthesis with deductive coding using the Consolidated Framework for Implementation Research (CFIR) identified 152 implementation barriers and facilitators. Barriers and facilitators primarily related to intervention and user characteristics. Exploration of barriers and facilitators related to the implementation setting or wider context was limited.

Study II was a cross-sectional survey to examine contextual factors related to informal caregivers (e.g. intervention preferences, caregiving situation) to inform the development of a cognitive behavioural therapy (CBT) self-help intervention to support the mental health of informal caregivers of people living with chronic kidney disease (CKD). The majority of participants were caring for a male spouse or partner living with CKD, and over half were experiencing at least mild depressive symptoms. Informal caregivers reported preferences for CBT self-help interventions to be delivered via the internet, a workbook, or individually in-person, with additional support provided in-person or via email by a trained professional at a non-profit organisation.

Study III was a qualitative study to explore the perspectives of professionals (i.e. potential implementers) anticipated to play key roles in the future implementation of an e-MH intervention for informal caregivers of people living with CKD regarding the intervention’s design, delivery, and implementation. Manifest content analysis with primarily deductive coding using the CFIR led to identification of 29 generic categories representing implementation determinants. Potential implementers considered an e-MH intervention as fitting within some existing healthcare delivery models and work routines, however, capacity to be involved with intervention delivery was low. Equitable support access was important to ensure intervention acceptability.

Study IV was a qualitative study to explore informal caregivers’ experiences of accessing and receiving support while caring for someone living with CKD. Reflexive thematic analysis generated three themes: (1) “Systems seem to get in the way” – challenges within support systems, describing challenges encountered when navigating complex systems; (2) Relying on yourself, describing how informal caregivers relied on their own skills and networks to find support; and (3) Support systems can “take the pressure off”, describing how support systems were perceived as supportive when empathetic and reliable. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2023. p. 81
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1977
Keywords
informal caregiver, e-mental health, mental health, implementation, chronic kidney disease
National Category
Health Sciences Psychology
Research subject
Health Care Research; Psychology; Medical Science
Identifiers
urn:nbn:se:uu:diva-512372 (URN)978-91-513-1908-7 (ISBN)
Public defence
2023-11-21, Sal IV, Universitetshuset, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2023-10-30 Created: 2023-09-29 Last updated: 2023-10-30

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Coumoundouros, Chelseavon Essen, LouiseWoodford, Joanne

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