Background
Healthcare needs in children and young people with intellectual and developmental disabilities are high. Foot problems have been reported to be very common in adults with intellectual disabilities; foot problems in children and young people are however, poorly understood. The aim of this study was to explore foot-care needs of children and young people with intellectual and developmental disability.
Methods
An exploratory, cross-sectional online survey was undertaken across a four-month period. A purposive snowball sampling approach was adopted in which parents / caregivers of children and young people with a diagnosis of intellectual or developmental disability were recruited. The survey tool was piloted before launch and comprised three domains. The first domain elicited information relating to parent/caregiver status, diagnosis of intellectual or developmental disability, secondary diagnoses, and age of the child/young person. The second domain explored foot-care and sought to obtain information about foot problems, access to health services, and existing knowledge about foot health. The third domain focused on footwear. Prior to launching the survey, ethical approval was granted from the host institution and all participants provided electronic consent before completing the survey.
Results
Complete data was collected from 49 respondents. Forty-five were parents and four were caregivers of a child or young person with intellectual and/ or developmental disability. Eighteen of the children had a diagnosis of Down syndrome and seven had a rarer chromosomal deletion (e.g Potocki-Lupski syndrome). Seventeen reported developmental disability (e.g. autism). Foot problems were common (75%) and tended to be musculoskeletal. ‘Pes planus’ was the most common foot concern (51%). Twenty-four parents/caregivers reported difficulties with finding appropriate shoes (48%) and this was often due to a mismatch between foot shape and the shoe (30%), or due to complications with orthotic devices (14%).
Discussion and Clinical Relevance
The results from this survey demonstrated that the burden of foot problems in children and young people with intellectual and developmental disabilities is considerable. The data offers a snapshot of the concerns that parents/caregivers encounter and the findings highlight the importance of access to foot-care services for these children and young people.