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Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer: A basis for developing internet-based support
Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden.
Department of Information Technology, Division of Visual Information and Interaction, Uppsala University, Uppsala, Sweden.
Department of Information Technology, Division of Visual Information and Interaction, Uppsala University, Uppsala, Sweden.
Department of Public Health and Caring Sciences, Lifestyle and Rehabilitation in Long-Term Illness, Uppsala University, Uppsala, Sweden.
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2023 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 64, article id 102347Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving.

METHODS: Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed.

RESULTS: The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care.

CONCLUSION: This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer.

Place, publisher, year, edition, pages
Elsevier, 2023. Vol. 64, article id 102347
Keywords [en]
Caregiver burden, Head and neck cancer, Informal caregiver, Internet-based intervention, Preparedness, Qualitative research, Thematic analysis
National Category
Nursing Cancer and Oncology
Identifiers
URN: urn:nbn:se:oru:diva-106393DOI: 10.1016/j.ejon.2023.102347ISI: 001015131000001PubMedID: 37290161Scopus ID: 2-s2.0-85161003511OAI: oai:DiVA.org:oru-106393DiVA, id: diva2:1774831
Funder
Swedish Research Council, 2019-01231Swedish Cancer Society, 201014 PjFRegion Uppsala, ALF-941900
Note

Funding agency:

Oncology Department Foundations Research Fund in Uppsala (grant number N/a)

Available from: 2023-06-26 Created: 2023-06-26 Last updated: 2023-08-01Bibliographically approved

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Ohlsson-Nevo, Emma

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