JMIR Publications

ABSTRACT

Background:

A growing number of people are living with comorbid dementia and cancer (CDC), and they are especially likely to require support from family caregivers. Carers of people with CDC play a vital supportive role, but have reported unmet support needs, including a lack of CDC-specific information resources and peer support. A targeted online peer support forum may provide an accessible way to help address unmet needs of carers of people with CDC.

Objective:

To explore the types and frequency of social support provided on an online peer support forum for caregivers of people with CDC, hosted by a dementia charity in the United Kingdom.

Methods:

All posts on the forum since its launch in November 2018 to April2024 were exported into Excel for analysis (N=893). Posts were analysed using deductive content analysis according to an adapted version of Cutrona and Suhr’s (1992) Social Support Behaviour Code (SSBC), consisting of five main categories of support: informational, emotional, esteem, network and tangible. Coding was completed independently by two coders and any coding disagreements resolved by reaching a consensus through discussion.

Results:

258 unique usernames had posted on the forum since its inception. There were a total of 893 posts, 583 (65.29%) were coded as providing social support. All five SSBC categories of social support were present in the forum posts. Informational support was the most common type of social support provided on the forum, which mostly involved providing suggestions of caregiving and coping strategies and sharing personal experiences that provide CDC-specific knowledge or insight. This was followed by emotional support, which consisted mostly of expressing shared understanding and empathy for caregivers in their unique situation of CDC, and providing expressions of care for the recipient’s wellbeing. Esteem, network and tangible support were less common, though included providing validation and relief of blame to other caregivers, typically in relation to cancer treatment decision-making; reminding caregivers that others were available on the forum for support; and expressing willingness to answer questions about their CDC caregiving experience.

Conclusions:

This study demonstrates the use and value of a CDC-specific online forum as a source of social support for carers of people with CDC, facilitating users’ access to CDC-specific information and peer support. The relatively new forum shows promise as a free and accessible resource that can contribute to addressing carers’ informational and peer support needs.