Summary: Nowadays, it is estimated that a billion individuals are affected by rare diseases (RDs) and the scarcity of knowledgeable physicians has led caregivers to turn to social media for support and information sharing. This shared knowledge may offer more insight than what is known in the medical literature and is highly unexploited in research. In this study, we addressed this knowledge gap by mapping the collective wisdom of Facebook groups dedicated to a rare disease: FOXP1 syndrome. Utilizing a data donation approach, this study aims to capture the dynamics of information exchange and community support within the FOXP1 Facebook group. Participants voluntarily donated their Facebook activity data, such as posts and comments, related to the Facebook group: Friends and Family of FOXP1. This approach was complemented by an online survey to gather information on 1) the use of Facebook and other information sources (i.e., Facebook use, the use of other sources to gather information regarding FoxP1, privacy concerns regarding their Facebook information, Facebook community belonging), 2) caregivers’ characteristics (i.e., healthy literacy, coping style, intolerance of uncertainty, perceived social support, and demographic variables). We are now in the phase of data analysis. For the data analysis, we will first conduct correlation analysis to find associations among the group engagement measure (i.e., comment and post frequencies) and the survey measures (i.e., use of Facebook and caregivers’ characteristics). Next, we will use a mixed method approach whereby we will combine topic modeling with thematic analysis. We will first conduct keyword-assisted topic modeling and use the topic modeling results as input for further qualitative analysis. The qualitative results are anticipated to provide a nuanced understanding of how caregivers of individuals with FOXP1 syndrome leverage online platforms for knowledge sharing and community support. This research not only aims to enhance our comprehension of the online behaviors of rare disease communities but also sheds light on studying similar dynamics in other rare disease groups across social media.
Data collection period: January – February 2024
Participant recruitment: Participants were recruited from the Friends and Family of FOXP1 Facebook group.
Instructions: Instructions to perform the data access and download can be found here.
Codebook: This study included a questionnaire that was carried out by Qualtrics. The codebook of the questionnaire is available upon request at the PI.
Ethical review: This study was approved by the Ethics Review Board, University of Amsterdam (Reference: FMG-4422). The informed consent can be found here, and the privacy policy can be found here.
Software: The data donations were collected using Port.
Local processing: The Python script for local processing of the Netflix data is available on Github.
