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Higher levels of unmet support needs in spouses are associated with poorer quality of life: A descriptive cross-sectional study in the context of palliative home care
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative Care, Dalen Hospital, Stockholm.
Faculty of Health and Life Sciences, Linnaeus University, Kalmar; The Research Section, Region Kalmar County.ORCID iD: 0000-0002-0961-5250
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0003-0933-2741
Department of Nursing Science, Sophiahemmet University, Stockholm.
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2021 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, no 1, article id 132Article in journal (Refereed) Published
Abstract [en]

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.

Methods: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.

Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health.

Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

Place, publisher, year, edition, pages
2021. Vol. 20, no 1, article id 132
Keywords [en]
Family caregivers, Life-threatening illness, Palliative care, Quality of life, Support needs
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-9123DOI: 10.1186/s12904-021-00829-9ISI: 000690946800001PubMedID: 34454454OAI: oai:DiVA.org:esh-9123DiVA, id: diva2:1596291
Available from: 2021-09-22 Created: 2021-09-22 Last updated: 2024-01-17Bibliographically approved
In thesis
1. A person-centred approach to support family caregivers in specialised home care: The Carer Support Needs Assessment Tool Intervention
Open this publication in new window or tab >>A person-centred approach to support family caregivers in specialised home care: The Carer Support Needs Assessment Tool Intervention
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Family caregivers are crucial providers of support and care for patients with lifethreatening illness and many report unmet support needs. With the use of quantitative and qualitative methods this thesis aimed to evaluate the Carer Support Needs Assessment Tool (CSNAT) and explore experiences and potential effects of utilising the Carer Support Needs Assessment Tool Intervention (CSNAT-I) among family caregivers and registered nurses in the context of specialised home care. The results showed that the CSNAT tool was valid and reliable for use among family caregivers in specialised home care (I). Family caregivers reported most the need for additional support concerning “Knowing what to expect in the future” (I, II). They reported and described how higher levels of need for more support were associated with poorer quality of life (II). The intervention was effective in significantly increasing family caregivers’ preparedness for caregiving (p = 0.002) (IV). Participating nurses expressed that their everyday clinical practice changed while learning to use the CSNAT-I and they experienced professional and personal growth (III). Their assessments and supportive inputs shifted from reactive towards proactive and more in collaboration with family caregivers. When utilizing the CSNAT-I, family caregivers experienced their conversations with nurses as co-created, providing new perspectives and insights which increased their involvement and helped in finding solutions (V).

In conclusion, this thesis gives further weight to the importance of addressing family caregivers' support needs as a part of nursing.

Place, publisher, year, edition, pages
Stockholm: Marie Cederschiöld högskola, 2023. p. 126
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 17
Keywords
Family caregivers, Home care, Intervention, Nursing, Palliative care, Preparedness, Quality of life, Support
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-10404 (URN)978-91-985806-6-2 (ISBN)
Public defence
2023-10-13, Marie Cederschiöld högskola, 13:00
Opponent
Supervisors
Available from: 2023-09-22 Created: 2023-09-21 Last updated: 2023-09-25

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Norinder, MariaÅrestedt, KristoferLind, SusanneHolm, MajaAlvariza, Anette

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