Exploring the complexities of weight management care for children with spina bifida: a qualitative study with children and parents

Purpose1) To explore how children with spina bifida (SB) and their parents understand bodyweight, health and weight management; and 2) To identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight.MethodsThe study used interpretive description within a qualitative design. Participants were children with SB (aged 10-18) attending two Canadian SB clinics and their parents. Data were collected through individual interviews and analyzed using inductive thematic analysis.ResultsFive children and five parents participated in the study. Children and parents had a weight-centric approach to health, which was related to the child's mobility. Weight was considered to be under individual control and mostly through diet. Trusting relationships between healthcare providers, children and families were important to discuss weight in a non-judgemental manner. Children should be involved in setting meaningful and achievable weight management goals.ConclusionGreater knowledge of how children with SB and their families understand weight and health offers opportunities for non-judgemental discussions about their needs and wishes. Helping families to place more value on health over weight may reduce feelings of stigma, while allowing children to develop some autonomy over health-related decisions. Children with spina bifida and their parents do not recognise the complexity of factors contributing to weight regulation.Weight regulation was often seen as the child's responsibility, which could lead to feelings of guilt and shame through internalised weight stigmaHealthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm

Automated summary

This study aimed to explore the understanding of bodyweight, health and weight management among children with spina bifida (SB) and their parents, and identify appropriate services and supports for managing their health and weight. Using interpretive description and qualitative analysis, data were collected through individual interviews with children with SB (aged 10-18) and their parents attending Canadian SB clinics. The findings revealed that both children and parents had a weight-centric approach to health, viewing weight as under individual control, primarily through diet. Trusting relationships between healthcare providers, children and families were important in discussing weight.