Exploration of family members’ perceptions of an online resource to provide information and support for patients with head and neck cancer and their informal carers: a qualitative study

Abstract

Purpose

Family members of HNC (head and neck cancer) patients report the highest level of unmet needs compared to other tumour groups. They are integral in supporting treatment decision-making and provide physical and emotional care. Availability of the internet increases access to health information. Currently, HNC websites provide minimal person-centred information to assist family members in their pivotal role. This is paramount to improve outcomes for patients and family members. This study explores family members’ perceptions surrounding the development and utility of an online resource to support carers and patients across treatment trajectories.

Methods

A qualitative research design was adopted using semi-structured interviews. 13 family members of HNC patients were interviewed in a United Kingdom healthcare trust, from March–May 2022. Key themes were inductively developed using reflexive thematic analysis.

Results

Three themes emerged from 13 family members: (1) Information is pivotal to improve understanding of journey ahead and promote decision-making and coping; (2) Family members need for information and support to equip them for new role as care-provider and (3) Family members perceptions of how to promote acceptability of an online resource.

Conclusion

Family members require detailed, reliable information, promoting decision-making, self-management and coping. A blended approach of clinician-led face-to-face information augmented by online information is favourable, enabling information on-demand, reducing feelings of bombardment and isolation. Patient narratives within an online resource could provide clear and real-life insights, facilitating contextualisation of clinical information. These findings will inform the co-design of a HNC online resource for patients and family members.