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ICBT program for improving informal caregiver well-being: A qualitative study
Linköping University, Department of Behavioural Sciences and Learning, Psychology. Linköping University, Faculty of Arts and Sciences.ORCID iD: 0000-0002-9111-0891
Center for Psychotraumatology, Institute of Psychology, Vilnius University, Vilnius, Lithuania.
Center for Psychotraumatology, Institute of Psychology, Vilnius University, Vilnius, Lithuania.
Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, the Netherlands.
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2021 (English)In: Internet Interventions, ISSN 2214-7829, Vol. 23, article id 100361Article in journal (Refereed) Published
Abstract [en]

Background

Informal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.

Objective

The main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.

Methods

Following a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.

Results

Four themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).

Conclusions

Most of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.

Place, publisher, year, edition, pages
Elsevier, 2021. Vol. 23, article id 100361
Keywords [en]
ICBT, Thematic analysis, Qualitative, Informal caregivers
National Category
Applied Psychology
Identifiers
URN: urn:nbn:se:liu:diva-172567DOI: 10.1016/j.invent.2021.100361ISI: 000615885200007PubMedID: 33489781OAI: oai:DiVA.org:liu-172567DiVA, id: diva2:1517172
Conference
2019 16th International Symposium on Wireless Communication Systems (ISWCS), Oulu, Finland, 27-30 Aug. 2019
Note

This project has received funding from the European Union's Horizon 2020 research and innovation program under the Marie Skłodowska-Curie grant agreement No 814072 and is part of The European Training Network on Informal Care (ENTWINE).

Available from: 2021-01-13 Created: 2021-01-13 Last updated: 2022-01-17Bibliographically approved
In thesis
1. Care for the Caregiver: Internet intervention for informal caregivers in Lithuania
Open this publication in new window or tab >>Care for the Caregiver: Internet intervention for informal caregivers in Lithuania
2022 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Informal caregivers are individuals who provide care for significant others in need of support due to frailty or illness. Being able to support a family member can be a very rewarding but at the same time a demanding task. Consequently, informal caregivers are known to experience not only positive but also negative psychological health outcomes and should be offered appropriate support. The main goal of this thesis was to evaluate if Internet-based Cognitive Behavioural Therapy (ICBT) can be suited to provide Lithuanian informal caregivers with psychological support. In addition, a secondary aim was to collect information regarding Lithuanian informal caregiver characteristics, their experienced burden and support needs.

The results showed that Lithuanian informal caregivers experience unmet support needs and a high caregiver burden. The findings also show that ICBT can be an effective and acceptable support option for Lithuanian informal caregivers in reducing their burden, depression, anxiety, stress and increasing the perceived quality of life. In conclusion, ICBT should be considered a promising psychological support option for Lithuanian informal caregivers. Further research is needed to evaluate the suitability of ICBT in regular care.

Abstract [sv]

Informella vårdgivare är personer som tar hand om närstående som behöver stöd på grund av funktionsnedsättningar eller sjukdom. Att kunna stödja en närstående kan vara en givande men samtidigt krävande uppgift. Följaktligen är det känt att informella vårdgivare inte bara upplever positiva utan även negativa psykologiska hälsorisker och bör erbjudas lämpligt stöd. Huvudsyftet med denna avhandling var att utvärdera om internetbaserad kognitiv beteendeterapi (IKBT) kan vara ett lämpligt alternativ för att ge litauiska informella vårdgivare psykologiskt stöd. Dessutom var ett sekundärt mål att samla in information om litauiska informella vårdgivare, inklusive deras upplevda börda och behov av stöd.

Resultaten visade att litauiska informella vårdgivare har behov av stöd och en omfattande vårdgivarbörda. Resultaten visar också att ICBT kan vara ett effektivt och acceptabelt alternativ för litauiska informella vårdgivare för att minska deras börda, depression, ångest, stress samt öka den upplevda livskvaliteten. Sammanfattningsvis kan ICBT betraktas som ett lovande psykologiskt stödalternativ för litauiska informella vårdgivare. Ytterligare forskning krävs för att utvärdera om IKBT kan vara ett lämpligt alternativ i den reguljär vård.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2022. p. 79
Series
Linköping Studies in Arts and Sciences, ISSN 0282-9800 ; 831Linköping Studies in Behavioural Science, ISSN 1654-2029 ; 239
Keywords
Informal caregivers, Cognitive behavioural therapy, Internet interventions, ICBT, Caregiver burden, Informella vårdgivare, Närståendebörda, Internetbaserad intervention, Kognitiv beteendeterapi, Internetbaserad kognitiv beteendeterapi, IKBT, E-hälsa
National Category
Applied Psychology
Identifiers
urn:nbn:se:liu:diva-182174 (URN)10.3384/9789179291877 (DOI)9789179291860 (ISBN)9789179291877 (ISBN)
Public defence
2022-04-01, C3, C Building, Campus Valla, Linköping, 13:00 (English)
Opponent
Supervisors
Funder
EU, Horizon 2020, 814072
Available from: 2022-02-18 Created: 2022-01-17 Last updated: 2022-02-18Bibliographically approved

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Biliunaite, IevaAndersson, Gerhard

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