Madge, Susan; (2004) Identifying the impact of cystic fibrosis on the lives of parents. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: Cystic Fibrosis is a multi-system disease with no cure. Treatment is largely home based and consists of a rigorous daily treatment regimen of chest physiotherapy, medication and diet. Clinical status should not be the only consideration for health professionals. The continuing ability of the parents to care for the child should be part of routine assessment. Aim: To identify the emotional and practical stressors parents associate through living with cystic fibrosis in the family. Methods: 124 parents of 284 children participated in this national, case controlled study. Validated measurements of psychopathology and questionnaires designed to identify the intrusion of disease were used, followed by interviews using a grounded theory approach. Results: Parents of children with cystic fibrosis scored significantly higher in all measures: General Health Questionnaire; p=<0.005. Beck's Hopelessness Score: p=<0.001 and Impact on Family: p=<0.001 indicating a more negative response. Interviews identified key sources of stress: financial and employment, perception of disease status, knowledge and understanding of the disease and family relationships and support. Conclusions: Parents of children with cystic fibrosis identify greater mental and practical stress in caring for their child than parents of healthy children. Poor mental health can be explained by their perception of the practical burden of caring for a child with cystic fibrosis. Professionals must take into account the burden on parents when prescribing treatment and must be alert to indicators of stress rather than simply assessing psychopathology assumed to occur as a direct result of illness.

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