Glasscoe, Claire and Smith, Jonathan A. (2011) Unravelling complexities involved in parenting a child with cystic fibrosis: an interpretative phenomenological analysis. Clinical Child Psychology and Psychiatry 16 (2), pp. 279-298. ISSN 1359-1045.
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.
Metadata
| Item Type: | Article |
|---|---|
| Keyword(s) / Subject(s): | care-giving, cystic fibrosis, medical decision-making, qualitative case study, treatment, burden |
| School: | Birkbeck Faculties and Schools > Faculty of Science > School of Psychological Sciences |
| Depositing User: | Sarah Hall |
| Date Deposited: | 08 Dec 2015 15:45 |
| Last Modified: | 02 Aug 2023 17:20 |
| URI: | https://eprints.bbk.ac.uk/id/eprint/13715 |
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