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

Abstract

Purpose

1) 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.

Methods

The 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.

Results

Five 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.

Conclusion

Greater 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.

Implications for Rehabilitation

• 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 stigma

• Healthcare 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

Keywords:

• Spina bifida
• children
• weight
• disability
• stigma
• autonomy

Acknowledgements

The authors wish to thank the children and parents who participated in this study. We also extend our appreciation to Tasha Carter for project management and data collection support. Members of the broader research team were Mary Forhan, Jill Hamilton, Nicholas Holt, and Louise Masse.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported by a Team Grant in Bariatric Care (Team to Address Bariatric Care in Canadian Children – Team ABC3) from the Canadian Institutes of Health Research, Institute of Nutrition, Metabolism and Diabetes.