Background: The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for HNC patients to explore their experiences and needs; to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice.
Methods: Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening, selection, data extraction and quality assessment were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual.
Results: Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes).
Conclusion: New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool, to elicit carers needs and delivery of targeted support.
SN Rogers 1, 2 , M Tsai 3 , MG Cherry 4 , JM Patterson 5 , CJ Semple 6
1 Dept of Maxillofacial Surgery, Wirral University Teaching Hospital, Wirral, England
2 Faculty of Health, Social Care and Medicine, Edge Hill University
3 Dept of Maxillofacial Surgery, Royal Brisbane and Women's Hospital, Brisbane, Australia
4 Dept of Primary Care and Mental Health, University of Liverpool
5 Institute of Population Health / Liverpool Head and Neck Centre, University of Liverpool
6 Institute of Nursing & Health Research, Ulster University / Cancer Services, Belfast