Exploring the psychosocial impact of having a child with spina bifida

Parents of children with physical disabilities such as spina bifida (SB) are faced with a series of long-term difficulties, placing considerable strain on both psychological and social resources. Although there is a small amount of quantitative literature pertaining to the psychosocial impact of having a child with SB, there is a lack of qualitative studies assessing the impacts of caring for a child with SB. Thus, this study sought to qualitatively explore the psychosocial impact of having a child with SB. We aimed to understand what are the psychosocial impacts associated with having a child with SB, how are such individuals supported, and what recommendations do these parents have to better support parents of children with SB. A qualitative cross-sectional design was implemented with semi-structured online interviews. 12 participants were recruited using purposive sampling and interviews were audio-recorded, transcribed, and analysed using thematic analysis. We identified five themes relating to the psychosocial impact of having a child with SB: balancing daily life demands, social challenges and relationship changes, emotional impact, benefits of social support networks and inadequacy of psychological supports for parents. The findings underscore the critical need for the improvement of psychological support services tailored for parents of children with SB.