Experiences and needs of carers of patients with head and neck cancer: A systematic review

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).

Conclusions

A more informed appreciation of the HNC carers experience of sense of loss and what they perceive promotes coping, allows healthcare providers to adapt and refine existing patient support initiatives, to target carers needs. It allows the formulation for items for a pilot prompt tool, and this will be a future project of codesign with HNC carers. More support targeted at the carer in conjunction with the patient will provide a platform for better outcomes.