Peer-reviewed article
Feeding, Nutrition, and Physical Activity From the Perspectives of People With Skeletal Dysplasia in Australia and Norway: A Mixed Qualitative Methods Study.
Natassja Billich, Johanne Kjellevik Ledang, Anne-Mette Bredahl, Supriya Raj, Gry Velvin et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explores how children and adults with skeletal dysplasia experience feeding, nutrition, and physical activity challenges across their lifespan. Researchers conducted focus groups in Norway and interviews in Australia with 35 people living with skeletal dysplasia or their parents. The findings identified six major areas of concern, including early feeding difficulties, managing energy and nutrition, preparing food, weight gain, healthcare coordination, and barriers to physical activity. The study highlights that people with skeletal dysplasia face practical challenges in nutrition and movement that are not well understood.
Key points
- Early life feeding challenges include breastfeeding difficulties in children with skeletal dysplasia
- Parents and individuals report inappropriate assessment of growth and nutritional status by healthcare providers
- Food portion sizing and navigation is difficult for families managing nutrition
- Barriers to physical activity persist into older childhood and adulthood
- People with skeletal dysplasia need holistic healthcare coordination to address feeding, nutrition, and activity together
Limitations
This is a qualitative study based on the perspectives of individuals and parents, so it cannot quantify how common these challenges are or measure the severity of nutritional outcomes. The study does not evaluate the effectiveness of any intervention to address these challenges.
Abstract
Skeletal dysplasia (SD) encompasses over 700 heterogeneous genetic conditions affecting the development, growth and maintenance of the human skeleton. Challenges regarding feeding, nutrition, and physical activity are reported across the lifespan, but the lived experience of these issues is poorly understood. This study uses a qualitative mixed methodology to explore feeding, nutrition, and physical activity from the perspectives of individuals living with SD or their parents. Three semistructured focus groups were conducted in Norway and 13 interviews in Australia. The two qualitative datasets were thematically analyzed separately, and themes were then synthesized together. Thirty-five participants with SD or their parents participated across the two sites. Six major themes were identified: (i) early life feeding, development, and activity; (ii) managing energy intake and nutrition in older children and adults; (iii) practical considerations related to food preparation; (iv) weight gain; (v) holistic health care; and (vi) physical activity in older children and adults. Subthemes identified included breastfeeding challenges, inappropriate assessment of growth and nutritional status, barriers to being physically active in adulthood, and difficulty navigating food portions. Understanding the experiences of people with SD will support and inform future codesigned tailored solutions to address feeding, nutrition, and physical activity.