Informal Caregivers Connecting on the Web: Content Analysis of Posts on Discussion Forums

About 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US $600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role.

This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others. It also aimed to gain insights into the informal caregiver experience from the content these informal caregivers posted.

The study population consisted of participants who posted on 5 web-based forums for informal caregivers between February and April 2024. Researchers extracted the first 6 responses to the first 20 questions and comments to appear posted by the informal caregivers in each of the 5 forums, removing any individually identifying information. We used a codebook thematic analysis approach to examine the data with Dedoose (SocioCultural Research Consultants). Researchers independently read all posts and coded the data. The author group discussed the codes, reiteratively refined them, and identified themes within the data.

The data consisted of 100 initial posts and 600 responses. Over half of the initial posts included specific questions, with the remaining initial posts sharing experiences or reflections. Posts ranged in length from a sentence to more than 500 words. Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations. Negative interpersonal interactions were mentioned 123 times, with 77 posts describing challenging situations with extended family. Posters inquired about accessing resources, with health care and health insurance included 51 times, while legal and financial concerns were addressed 124 times. Caregiving challenges were mentioned hundreds of times, including discussion of hygiene (n=18), nutrition (n=21), and desire for a caregiving break (n=47). Posters expressed emotion in their comments 180 times, which included 32 mentions of guilt and 26 mentions of positive emotion. The importance of web-based group support was mentioned 301 times.

Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face. The domains identified on these forums may be helpful, as clinicians provide information to care recipients and their informal caregivers along their health journeys.