Examining the online sharing of parents with children diagnosed with Spinal Musküler Atrophy through virtual communities using netnographic method

This study was conducted to identify how parents of children diagnosed with Spinal Muscular Atrophy express themselves through online platforms via virtual communities, sharing their experiences, feelings, and thoughts regarding the diagnosis, treatment, side effects, and search for support related to Spinal Muscular Atrophy, and to ensure that the original data is used to improve the quality of care in paediatric nursing. The research was conducted retrospectively using the netnography method, one of the qualitative research types, between 01/01/2023 and 01/06/2025, using data shared by parents in the online virtual environment, after obtaining the necessary ethics committee and social platform permissions. The sample for the research was formed by the forum page of the 'SMA Benimle Yürü Derneği' (SMA Walk with Me Association), named "smabenimleyuru", which is an online virtual environment for mothers and fathers of children diagnosed with Spinal Muscular Atrophy, with active sharing and a large number of members on 'Instagram'. Throughout the research period, it was observed that parents repeated their emotional, physical, and social sharing in different expressions, and the posts were categorised accordingly. The qualitative data analysis programme MAXQDA Analytic Pro 12 was used to classify the data obtained. Six different themes were identified in the analysis conducted in this study. The results of this study determined that paediatric nurses should support parents of children diagnosed with Spinal Muscular Atrophy by providing education and counselling in these areas. In this context, it is recommended that paediatric nurses plan and implement the necessary education in this area for parents