The Provision of Social Support in an Online Support Forum for Caregivers of People With Comorbid Dementia and Cancer: Content Analysis Study.

Abstract

Background: A growing number of people are living with comorbid dementia and cancer (CDC), and they are particularly 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: This study aimed 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: We conducted a mixed methods study using descriptive statistics and qualitative content analysis. All posts (N=893) on the forum since its launch in November 2018 to April 2024 were exported into Microsoft Excel for analysis. Descriptive statistics were used to examine forum use and user characteristics. Deductive content analysis was conducted to explore the types and frequency of social support provided on the forum. Posts were analyzed according to an adapted version of Cutrona and Suhr's Social Support Behavior Code, consisting of 5 main categories of support: informational, emotional, esteem, network, and tangible. Coding was completed independently by 2 coders, and any coding disagreements were resolved by reaching a consensus through discussion.

Results: A total of 258 usernames posted on the forum since its inception. There were 893 posts; 583 (65.3%) were coded as providing social support. All 5 Social Support Behavior Code categories 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 for 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 well-being. Esteem, network, and tangible support were less common, though they included providing validation and relief of blame to other caregivers, typically in decision-making regarding cancer treatment; 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.