"Trying to keep things normal"-parenting a child with Cystic Fibrosis

http://www.ncbi.nlm.nih.gov/pubmed/21212082

Clin Child Psychol Psychiatry. 2011 Jan 6. [Epub ahead of print]
Unravelling complexities involved in parenting a child with cystic fibrosis: An interpretative phenomenological analysis.
Glasscoe C, Smith JA.

University of Liverpool, UK.
Abstract
We conducted a qualitative study with caregivers for a contemporary understanding of the challenge of caring for a child with cystic fibrosis (CF). A single case is presented that details one woman's experience from her unique perspective of both, 'mother to a child with CF' and 'CF healthcare provider' using an interpretative phenomenological analysis. Emergent themes include: 'trying to keep things normal,' which includes different types of normality and routine management of treatment; 'when things become difficult,' which includes dealing with symptoms and battling with CF related decline; and, 'the complexity of decision making.' The discussion section expands on how, for this mother contrasting modes of managing CF (everyday life/full-on alert) co-existed and were further complicated by (i) role discrepancies (mother/nurse), and (ii) a dialectic between affect and reason. The CF parenting challenge increasingly involves responsibility for complex healthcare interventions and this study suggests a need for further enquiry into how caregivers are involved in the treatment plan and decision-making about treatment. Practice implications are proposed.