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
Abstract 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...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2021-08-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-021-00829-9 |
| _version_ | 1818661610258956288 |
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| author | Maria Norinder Kristofer Årestedt Susanne Lind Lena Axelsson Gunn Grande Gail Ewing Maja Holm Joakim Öhlén Inger Benkel Anette Alvariza |
| author_facet | Maria Norinder Kristofer Årestedt Susanne Lind Lena Axelsson Gunn Grande Gail Ewing Maja Holm Joakim Öhlén Inger Benkel Anette Alvariza |
| author_sort | Maria Norinder |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-17T04:47:47Z |
| format | Article |
| id | doaj.art-833d2cb3ebd64cd6aa511ce5bec339d4 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-17T04:47:47Z |
| publishDate | 2021-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-833d2cb3ebd64cd6aa511ce5bec339d42022-12-21T22:03:01ZengBMCBMC Palliative Care1472-684X2021-08-0120111110.1186/s12904-021-00829-9Higher 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 careMaria Norinder0Kristofer Årestedt1Susanne Lind2Lena Axelsson3Gunn Grande4Gail Ewing5Maja Holm6Joakim Öhlén7Inger Benkel8Anette Alvariza9Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University CollegeFaculty of Health and Life Sciences, Linnaeus UniversityDepartment of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University CollegeDepartment of Nursing Science, Sophiahemmet UniversityDivision of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of ManchesterCentre for Family Research, University of CambridgeDepartment of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University CollegeInstitute of Health and Care Sciences and the Centre for Person-Centred Care, Sahlgrenska Academy, University of GothenburgThe Palliative Care Unit, Sahlgrenska University HospitalDepartment of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University CollegeAbstract 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.https://doi.org/10.1186/s12904-021-00829-9Family caregiversLife-threatening illnessPalliative careQuality of lifeSupport needs |
| spellingShingle | Maria Norinder Kristofer Årestedt Susanne Lind Lena Axelsson Gunn Grande Gail Ewing Maja Holm Joakim Öhlén Inger Benkel Anette Alvariza 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 BMC Palliative Care Family caregivers Life-threatening illness Palliative care Quality of life Support needs |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | Family caregivers Life-threatening illness Palliative care Quality of life Support needs |
| url | https://doi.org/10.1186/s12904-021-00829-9 |
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