Logo: to the web site of Uppsala University

uu.sePublications from Uppsala University
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey
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, UK.ORCID iD: 0000-0001-5539-974x
Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Exeter, UK.
Faculty of Health and Life Sciences, University of Exeter Medical School, University of Exeter, Exeter, UK; Exeter Kidney Unit, Royal Devon University Healthcare NHS Foundation Trust, Exeter, UK.
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
Show others and affiliations
2023 (English)In: BMC Nephrology, E-ISSN 1471-2369, Vol. 24, no 1, article id 4Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study's primary objective was to examine informal caregivers' self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver's situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).

Methods: An online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver's mental health using the DASS-21. Data were analysed using descriptive statistics.

Results: Sixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver's physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.

Conclusions: Results suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023. Vol. 24, no 1, article id 4
Keywords [en]
Chronic kidney disease, Cognitive behavioural therapy, Informal caregiver, Intervention preferences, Mental health, Online survey, Self-help
National Category
Psychology Health Sciences
Research subject
Health Care Research; Psychology
Identifiers
URN: urn:nbn:se:uu:diva-492636DOI: 10.1186/s12882-022-03052-7ISI: 000908417900002PubMedID: 36600229OAI: oai:DiVA.org:uu-492636DiVA, id: diva2:1724575
Funder
EU, Horizon 2020, 814072Swedish Research Council, 2009–1093Uppsala UniversityAvailable from: 2023-01-09 Created: 2023-01-09 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

Open Access in DiVA

fulltext(1531 kB)521 downloads
File information
File name FULLTEXT01.pdfFile size 1531 kBChecksum SHA-512
e26bb4b31d0c95b59863a63b9aef2981e47b8fed910da0edde96e9f5bc6a7734b09a4c93b9b5c375ac791344900353d6e2564a7cd329784b82e2beb18cbe9691
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMed

Authority records

Coumoundouros, Chelseavon Essen, LouiseWoodford, Joanne

Search in DiVA

By author/editor
Coumoundouros, Chelseavon Essen, LouiseWoodford, Joanne
By organisation
Healthcare Sciences and e-Health
In the same journal
BMC Nephrology
PsychologyHealth Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 522 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 304 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf