Mapping Perceived Impact, Facilitators and Barriers of Cystic Fibrosis Management in Children and Adolescents: A Qualitative Study From the Parents' Perspective.

backgroundCystic fibrosis imposes a significant treatment burden on children and their informal caregivers, who have to change their routines to carefully adhere to medication and exercise as treatment regimes. Although informal caregivers are known to be key players in the daily management of these children, their own voice is scarcely explored, often hindering personalisation of care. The main objective of the study was to map the multifactorial impact of cystic fibrosis, as well as identify barriers and facilitators perceived by parental caregivers in managing the disease in the paediatric age.

methodsA qualitative exploratory study was conducted involving six fathers and 14 mothers of 15 children and adolescents (6-18 years; 40% male) diagnosed with cystic fibrosis. Semi-structured individual interviews were conducted. Data were analysed using inductive thematic analysis.

resultsFour main themes emerged from the analysis: (1) perceived impact of the disease; (2) facilitators of disease management; (3) adherence to treatment; and (4) physical activity. Findings emphasised the emotional impact of the disease, especially when diagnosed at a later stage of development. Increased knowledge seemed to facilitate adaptation and daily management, as well as a normalisation of attitudes by parents. All parents recognised physical activity as an important part of treatment, although financial and logistical factors (e.g., reconciling schedules) were important barriers to adherence.

conclusionsOur findings suggest that disease management and specifically adherence to treatment recommendations is impacted by early diagnosis, attitudes towards the disease, social support and financial constraints. Future interventions should focus on identifying the needs and supporting the whole family to cope with the demands of the disease, namely by improving knowledge about the benefits of different intervention approaches.