title: Unravelling complexities involved in parenting a child with cystic fibrosis: an interpretative phenomenological analysis.
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.
authors.affiliation: University of Liverpool, UK. glassc@liv.ac.uk
authors.forename: Claire
authors.initials: C
authors.lastname: Glasscoe
authors.forename: Jonathan A
authors.initials: JA
authors.lastname: Smith
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology; D002648:Child; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000451:nursing* / Q000523:psychology; D003657:Decision Making; D005260:Female; D006801:Humans; D009035:Mothers / Q000523:psychology*; D010287:Parent-Child Relations; D016487:Parenting / Q000523:psychology*; D036301:Qualitative Research; D013315:Stress, Psychological