Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support

Ulrica Langegård; Åsa Cajander; Awais Ahmad; Maria Carlsson; Emma Ohlsson Nevo; Birgitta Johansson; Ylva Tiblom Ehrsson

doi:10.1016/j.ejon.2023.102347

Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support

Eur J Oncol Nurs. 2023 Jun:64:102347. doi: 10.1016/j.ejon.2023.102347. Epub 2023 May 2.

Authors

Ulrica Langegård¹, Åsa Cajander², Awais Ahmad³, Maria Carlsson⁴, Emma Ohlsson Nevo⁵, Birgitta Johansson⁶, Ylva Tiblom Ehrsson⁷

Affiliations

¹ Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden. Electronic address: ulrica.langegard@igp.uu.se.
² Department of Information Technology, Division of Visual Information and Interaction, Uppsala University, Uppsala, Sweden. Electronic address: asa.cajander@it.uu.se.
³ Department of Information Technology, Division of Visual Information and Interaction, Uppsala University, Uppsala, Sweden. Electronic address: awais.ahmad@it.uu.se.
⁴ Department of Public Health and Caring Sciences, Lifestyle and Rehabilitation in Long-Term Illness, Uppsala University, Uppsala, Sweden. Electronic address: maria.carlsson@pubcare.uu.se.
⁵ Department of Surgery, Örebro University, Örebro, Sweden. Electronic address: emma.ohlsson-nevo@regionorebrolan.se.
⁶ Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology, Uppsala University, Uppsala, Sweden. Electronic address: birgitta.johansson@igp.uu.se.
⁷ Department of Surgical Sciences, Otorhinolaryngology and Head and Neck Surgery, Uppsala University, Uppsala, Sweden. Electronic address: ylva.tiblom.ehrsson@surgsci.uu.se.

PMID: 37290161
DOI: 10.1016/j.ejon.2023.102347

Abstract

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.

Keywords: Caregiver burden; Head and neck cancer; Informal caregiver; Internet-based intervention; Preparedness; Qualitative research; Thematic analysis.

MeSH terms

Caregivers* / psychology
Focus Groups
Head and Neck Neoplasms* / therapy
Humans
Internet
Social Support