Family and patient education for children with spina bifida: A qualitative study

Objectives: This study aimed to assess satisfaction with family and patient education in relation to children with spina bifida, addressing gaps in the literature that often overlook family perspectives and interdisciplinary strategies. Design: Qualitative study. Setting: Paediatric healthcare setting. Method: Based on a literature review, semi-structured interviews were conducted with seven family members/relatives of children with spina bifida, six physiotherapists, and six physicians specialised in paediatrics. Interview data were analysed using inductive reflexive thematic analysis. Results: We identified four key themes from interviews with family members and relatives: (1) the need for ongoing guidance from healthcare professionals; (2) the importance of organisational and conceptual support; (3) the value of empathetic interactions with healthcare providers; and (4) the desire for informed autonomy in decision-making and care. In addition, expert interviews revealed four themes: (1) the collaborative optimisation of structured education; (2) advocacy for specialisation; (3) recognition of relatives’ proactive information-seeking efforts; and (4) the relevance of empowerment and resilience. Conclusion: This study highlights the need for ongoing guidance for the families of children with spina bifida. By developing and disseminating comprehensive educational resources, fostering cooperation between healthcare professionals and clinics, and providing emotional support, healthcare professionals can enhance the well-being of families. Cultivating resilience through informed participation and compassionate care is key to empowering families to manage the challenges associated with the condition effectively.