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Cited by 60Palliative Care and End-of-Life IssuesPalliative and Oncologic CareNursing care and research

Family caregivers’ preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home – a grounded theory study

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Nysaeter, Toril Merete, Olsson, Cecilia, Sandsdalen, Tuva, Hov, Reidun, Larsson, Maria·2024·BMC Palliative Care
DOI 10.1186/s12904-024-01350-5PMC PMC10782637
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Abstract

Background: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient’s illness trajectory. Therefore, the aim was to explore family caregivers’ preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. Methods: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. Results: The findings are captured in the core category “hold out in duty and love”. The categories “having control and readiness for action” and “being involved in care” describe the family caregivers’ preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient’s care and decision making. The categories “being seen and confirmed” and “having a respite” describe family caregivers’ preferences for support according to their own needs to be able to persevere in the situation. Conclusion: Despite deterioration in the patient’s illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient’s illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers’ preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers’ needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.

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Cited by

Sorted by citations

Authors
Nysaeter, T. M., Olsson, C., Sandsdalen, T., Hov, R., & Larsson, M.
Affiliations
  • Lovisenberg Diakonale Høgskole (NO)
  • University of Inland Norway (NO)
  • Karlstad University (SE)
ORCID
Venue
BMC Palliative Care
Publisher
Springer Science and Business Media LLC
Published
2024-01-11
Volume
23
Issue
1
Pages
15-15
ISSN
1472-684X (ISSN-L)
DOI
10.1186/s12904-024-01350-5
PMC
PMC10782637
OpenAlex
W4390749549
Cited by
60
References
5
Citations by year
2026: 26 · 2025: 27 · 2024: 7
FWCI
24.85
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Palliative Care (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Diva portal (Dalarna University Library) (submittedVersion, other-oa)
  • NORA - Norwegian Open Research Archives (submittedVersion, other-oa)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
Høgskolen i Innlandet
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
family caregivers, caregiver preferences, home death, end-of-life care, cancer, home care, caregiver support needs, illness trajectory, person-centred care, psychoeducational intervention, respite care
MeSH terms
Adult, Death, Family, Humans, Neoplasms, Palliative Care, Caregivers, Qualitative Research, Grounded Theory

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