The SCooP Project: development of an intervention to increase physiotherapy adherence among young children with Cystic Fibrosis.

Citation

France E, Hoskins G, Hagen S, Dhouieb E, Cunningham S, Main E, Rowland C, Treweek S, McGhee J, Glasscoe C, Allen JM, Hoddinott P, Williams B, Semple K, Grindle M & Duncan K (2018) The SCooP Project: development of an intervention to increase physiotherapy adherence among young children with Cystic Fibrosis.. NHS Lothian Nursing, Midwifery, Allied Health Professions, Psychology, Pharmacy and Health Care Science Research Conference, 16.03.2018-16.03.2018.

Abstract
Background Cystic fibrosis (CF) is an inherited, life-threatening disorder of the lungs and digestive system affecting approximately 1 in 2,500 children in the UK. Chest physiotherapy is a major component in the respiratory management of CF to help prevent lung damage. Adherence in young children is important because damage occurs rapidly and can be irreversible. However, only 50% of parents and young children adhere to their recommended regimen. Interventions to address this significant problem are lacking. Aims To develop and test a theoretically-informed intervention consisting of a film and family action plan to improve adherence to home chest physiotherapy (CPT) among children aged 0 to 8 years with cystic fibrosis (CF) and their parents. Methods A two-stage, mixed-methods approach to develop and test feasibility of the intervention. Stage 1. An action research approach was used to develop a documentary film, including a computer animation of the lungs, and action plan in partnership with paediatric CF clinicians and parents of young children with CF. This process drew on the ‘development’ and ‘feasibility/piloting’ stages of the 2008 Medical Research Council Framework for the Development of Complex Interventions. Eighteen parents and 11 clinicians - participated in online interaction and telephone interviews over 8 months from 2014-2015. Stage 2. Design: a before-and-after repeated measures feasibility study of the intervention with 20 parents in the UK in 2015. Primary outcome: adherence. Secondary outcomes: parental depression/anxiety and burden of care. Outcomes data were collected from parents by telephone at: baseline, 4 weeks and 8 weeks post intervention. Post-intervention, in-depth qualitative interviews explored experiences and acceptability of the intervention. Results We designed and tested an intervention intended to improve adherence to home CPT among young children with CF and their parents. Twenty parents of children with CF participated in the feasibility study. Recruitment and retention of NHS research sites and parents were successful. Seventeen of 20 parents completed data collection and watched the film but only seven used the action plan. There was a trend for increased adherence, although most parents were adherent at baseline, and for improved parental mood and burden 8 weeks post intervention. Qualitative data indicated that the intervention was acceptable, appealing and supportive to parents. Most parents could not recall the action plan. The intervention is likely to be used by parents without formal clinician input, accessed online or by DVD. Discussion The proposed intervention holds promise as an inexpensive, acceptable, appealing and supportive intervention to be used by parents. We plan to conduct a larger-scale randomised controlled trial (RCT) to definitively decide if the intervention increases adherence. If it proves successful after a future RCT, this intervention could contribute to an increase in CPT treatment adherence in young children with CF, with potential to decrease the likelihood of lung damage and medical complications, reducing both health burden and costs to families and the NHS. Conclusion The study suggests that a documentary film and accompanying action plan are acceptable and could potentially enhance CPT adherence in young children with CF and their parents.