Physiotherapy care for children with haemophilia: a qualitative exploratory study of an online muscle strengthening exercise programme [version 1; peer review: awaiting peer review]

Background

Exercise is important for children with hemophilia to maintain a healthy musculoskeletal system and to restore function as a consequence of muscle and joint bleeding. This study investigated the views of physiotherapists and children with hemophilia, along with their parents, on the delivery of an online muscle-strengthening intervention. The intervention involved a 12-week program intended to master movement control and emphasize body weight strength development, initiated by one in-person study visit at a care center when participants were randomized. The children conducted the program twice weekly, once with a physiotherapist and a second independently, but with the support of a parent.

Methods

The study involved qualitative exploration using online focus groups with the study’s physiotherapists and telephone interviews with children/parent dyads. Two focus groups involving eight physiotherapists and 12 interviews with children were conducted, with a parent present, both based at home. The interviews and focus groups were conducted by an experienced qualitative researcher, Ferhana Hashem (FH). The recordings of the focus groups and the interviews were then transcribed. Qualitative data were analyzed thematically. The analysis was supported using a qualitative software data management program (NVIVO 15).

In terms of patient reported outcomes (PRO) selected, parents and children felt it important to ensure that the children’s confidence and feelings were supported to do the exercises, which were captured by the Child’s and parents’/caregivers’ satisfaction of the exercise programe and choice of outcome measures on the questionnaire.

Results

Qualitative themes were identified: (i) initial contact – face to face session, recruitment, and adherence; (ii) access and engagement; (iii) guidance from physiotherapists for sessions; (iv) multi-modal systems supporting exercise program; and (v) changing physiotherapy practice.

Conclusion

Physiotherapy care for children with hemophilia can be successfully supported and adapted to home-based settings. Physiotherapists were agile and innovative in providing sessions exclusively online. The real-time online sessions, physitrack application, and supporting resources were age-appropriate and accessible to both children and parents. Online physiotherapy care has the potential for ongoing engagement and accessibility, opportunities for collaborative practice through family centered approaches, and ultimately, greater sustainability in this rare diseases group.