Crowdfunding Campaigns for Children Diagnosed With Spinal Muscular Atrophy in Türkiye From a Rights‐Based Social Work Perspective
Year: 2026
Type: article
Abstract: ABSTRACT This study examines the experiences of families with children diagnosed with spinal muscular atrophy (SMA) in Türkiye regarding crowdfunding campaigns from a rights‐based social work perspective, within the framework of Rawls' ‘Justice as Fairness’ and Daniels' ‘Health Equity Approach’. The research was conducted using a qualitative design, and data from semi‐structured interviews with 10 parents (seven mothers and three fathers) were analysed using thematic analysis in MAXQDA. The analysis revealed the themes of ‘Transformation from Entitlement to Philanthropy’ and ‘The Issue of Fairness: Campaigns as an Obligation’. The findings show that access to SMA treatment relies heavily on philanthropic mechanisms, driving families to utilize crowdfunding campaigns. It was determined that these processes impose severe burdens on families, marked by geographic inequalities in access to treatment and intense bureaucratic barriers, the pressure for continuous public visibility on social media, and subsequent institutional restrictions on domestic supportive medications after returning from abroad. The study analyses how crowdfunding functions as a tool to fill gaps in health equity, making visible the inequalities in access to health and social services. In this context, it is emphasized that health and social work policies for rare diseases should be re‐evaluated through a rights‐based, equitable approach.
Source: Child & Family Social Work
DOI: 10.1111/cfs.70303
Authors: Merve Nur Oktar, Berra Cansız Kösesoy
Institutions: Burdur Mehmet Akif Ersoy Üniversitesi, Fırat University
Language: English
Subfield: Genetics (clinical)
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W7225467996