Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: patient, parent and sibling accounts

Cystic fibrosis (CF) is a progressive disease with no known cure. Advances in diagnosis and treatment have resulted in patients living longer and thus families live with the illness for longer. Treatments are becoming increas ingly demanding and are largely performed in the family home. Mothers are o ften reported to experience greater stress and poorer adjustment than mothe rs of well children or population norms. Patients and siblings are also rep orted to display adjustment difficulties. Siblings have rarely been include d in research designs. This qualitative study investigates the impact of CF and treatment on eight patients, eight mothers, one father and eight sibli ngs. A family systems perspective was adopted. Each individual was intervie wed independently using semistructured interviews. Patients and siblings we re aged between 9 and 21 years. Qualitative analyses revealed high levels o f non-adherence (intentional and unintentional) and parental involvement in treatment, minimal involvement of siblings, and preferential treatment tow ards patients. Demanding treatment, coupled with the progressive nature of CF, promote high levels of parental involvement for younger children as wel l as older teenagers, often due to attempted or actual non-adherence. Sibli ngs may receive less attention while patients' needs take priority. Future development of a measure of adherence suitable for children and adolescents should take into account different motivations for non-adherence, particul arly regarding the level of personal control over adherence to treatment. I n addition, the potential impact of having a brother or sister with CF shou ld not be underestimated and the needs of siblings should not go unnoticed.