A qualitative study of physiotherapy education for parents of toddlers with cystic fibrosis

BackgroundEducation and daily physiotherapy are often highlighted as difficult and stressful tasks for parents of young children with cystic fibrosis. This study aimed to identify factors that impair the delivery and retention of physiotherapy education for parents of these children and factors that impair effective physiotherapy treatment in the home environment.MethodsA focus group of physiotherapists and six semi-structured interviews of parents with children with cystic fibrosis were conducted. The qualitative method of Grounded Theory was used to analyse the information and develop key themes.ResultsMajor emergent themes were ‘transitions’, ‘psychological distress’ and ‘connectedness’. Factors influencing the effectiveness of parental physiotherapy education include the large volumes of information, appropriateness of educational resources and timing of education. Factors influencing home physiotherapy management for toddlers include mastering techniques, the transition from infant to toddler and time management.ConclusionPhysiotherapy education and management were key causes of psychological distress for parents. This research suggests that significant targeted development of educational resources is warranted, in conjunction with dedicated and ongoing formal psychosocial support for parents.