Adherence to Home Physiotherapy Treatment in Children and Young People with Joint Hypermobility: A Qualitative Report of Family Perspectives on Acceptability and Efficacy

Abstract

Even when exercise is seen to benefit a child's well-being, families experience challenges in adhering to a physiotherapy programme for hypermobility. Therapists can utilize findings on what enhances adherence to help CYP effectively exercise in the home setting.

The views of children and young people on the use of silk garments for the treatment of eczema: a nested qualitative study within the CLOTH ing for the relief of Eczema Symptoms ( CLOTHES ) randomized controlled trial

“…Few nested studies including child participants have been reported. Examples include assessment of a home‐based exercise programme for children with cystic fibrosis and a home physiotherapy regimen for youngsters with joint hypermobility . Both report valuable child data but this is not explicitly linked with associated RCT data.…”

The evidence‐based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome

“…Children with GJH are less active in sports and miss education more often in comparison with their healthy peers with normal joint mobility [Jansson et al, ]. Qualitative research with children with JHS/hEDS and their parents has identified “difficulties at school” as being one of the six main themes, when discussing symptoms prior to commencing a treatment program [Birt et al, ]. A retrospective chart audit also showed that 40% of affected children report handwriting difficulties, 24% report “problems at school,” 41% report missing time from school, and 48% were unable to participate in physical education classes as a result of their condition [Adib et al, ].…”

“…A recent study showed that children 8–16 years with JHS/hEDS had significantly decreased participation in housework, riding a bicycle, taking part in sport or outdoor games, as assessed by the Frequency of Participation Questionnaire, in conjunction with a higher frequency of participation in non‐sporting games and a higher need to rest [Schubert‐Hajlmarsson et al, 2012]. Withdrawal from physical activity due to their condition has also been reported by children and their parents [Birt et al, ].…”

“…Existing consensus based hospital and UK paediatric rheumatology guidelines may also offer helpful advice and treatment strategies to clinicians [The British Society for Pediatric and Adolescent Rheumatology, ; Cincinnati Children's Hospital Medical Center, ]. Qualitative interviews with 28 families with children with JHS/hEDS (5–17 years) on prerequisites for the best adherence to exercise is reported to be parental motivation adapting family routines, making exercise a family activity and seeing the benefit [Birt et al, ]. On the other hand are factors for non‐adherence to exercise for these children, lower levels of parental supervision, not understanding the treatment, not seeing the benefit and not having specific time to dedicate for doing exercises [Birt et al, ].…”

Overview of neurodevelopment and pain research, possible treatment targets

“…Parent emotional distress influences proxy--reported HRQOL in children with newly--diagnosed JIA [95]. Family involvement can encourage adherence to home exercise programs, particularly in older adolescents [101], and parental education and involvement is essential if progress is to be maintained when managing children with chronic musculoskletal pain [5].…”