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Informal caregiver support needs and burden
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, Lithuania.ORCID iD: 0000-0002-6654-6220
Department of Health Psychology, University Medical Center Groningen, University of Groningen, The Netherlands; Department of Psychology, Health and Technology, University of Twente, The Netherlands.
Linköping University, Department of Behavioural Sciences and Learning, Psychology. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Biomedical and Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.ORCID iD: 0000-0003-4753-6745
2022 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 12, no 1, article id e054607Article in journal (Refereed) Published
Abstract [en]

Introduction A demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers experiences and needs.

Objectives The main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregivers and care receivers well-being was investigated.

Methods The study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).

Results A total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.

Conclusion Most of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

Place, publisher, year, edition, pages
London, United Kingdom: BMJ Publishing Group Ltd, 2022. Vol. 12, no 1, article id e054607
Keywords [en]
adult palliative care, public health, COVID-19, international health services, health policy, quality in health care
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-182170DOI: 10.1136/bmjopen-2021-054607ISI: 000739490700019PubMedID: 34983768Scopus ID: 2-s2.0-85122725079OAI: oai:DiVA.org:liu-182170DiVA, id: diva2:1625795
Note

Funding: European Unions Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant SKA South Africa [814072]

Available from: 2022-01-10 Created: 2022-01-10 Last updated: 2023-08-28Bibliographically 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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