A qualitative IPA study examining the experience of storytelling among parents of children with life-limiting conditions (LLC) and life-threatening conditions (LTC) in a UK paediatric palliative care context

Mundy, Thomas (2019) A qualitative IPA study examining the experience of storytelling among parents of children with life-limiting conditions (LLC) and life-threatening conditions (LTC) in a UK paediatric palliative care context. Doctoral thesis, University of East Anglia.

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Abstract

Background: A paucity of literature exists concerning parents of children with life-limiting conditions (LLCs) and life-threatening conditions (LTCs). In order to interpret their life world, this thesis includes a qualitative systematic review (SR) and narrative synthesis examining their experiences as caregivers. Storytelling (i.e. the experiential act of telling one’s story of caring for a child with LLC / LTC) remains under researched in this population. Hence, this feeds into an empirical research paper, which then investigates experiences of storytelling in parents of children with LLC and LTC.

Method: In-depth semi structured interviews were conducted with 8 parents (6 mothers, 2 fathers) caring for a child with LLC or LTC. Parents were recruited from a UK children’s hospice charity and were interviewed regarding their experiences of storytelling. Interviews were subjected to Interpretative Phenomenological Analysis (IPA).

Results: From the IPA five superordinate themes emerged: (a)‘bonding with other parents through storytelling’ (b) ‘therapeutic storytelling to a hospice professional’ (c) ‘storytelling as an educational tool’ (d) ‘fear of others reactions to the story’ (e) ‘weariness through repetition of the story’. Themes suggested parents predominantly benefited from telling their story in a children’s hospice context (a, b). Parents also benefited from telling their story publicly in an attempt to educate others (c), although the negative aspects of storytelling predominated in everyday settings in the community (d, e). Supportive and empowering social contexts provided storytelling experiences that were perceived as psychologically positive and therapeutic.

Conclusions: Further research is needed to explore the experience of storytelling in this population. Storytelling has the potential to support meaningful, transformative and cathartic experiences for parents. However, its negative potential impacts also require further examination.

Item Type: Thesis (Doctoral)
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User: Users 11011 not found.
Date Deposited: 28 Oct 2019 11:43
Last Modified: 28 Oct 2019 11:43
URI: https://ueaeprints.uea.ac.uk/id/eprint/72797
DOI:

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