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Title: The experience of being parent to a child with immunodeficiency disorder : one year on from Haematopoietic Stem Cell Transplantation (HSCT)
Author: Pink, Elizabeth
ISNI:       0000 0004 2699 1797
Awarding Body: University of East London
Current Institution: University of East London
Date of Award: 2007
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Background: Previous research has suggested parents experience distress in coping with their child's ill health and haematopoietic stem cell transplant (HSCT). Most research has been undertaken with mothers of cancer patients and focuses on adjustment. Little attention has been paid to experiences, particularly those of parents of children who undergo HSCT to treat immunodeficiency disorder. Aim: This study aimed to explore this little researched population by using qualitative methods to investigate parental experience one year after HSCT. Method: Eight parents whose child had undergone HSCT to treat immunodeficiency disorder were selected from one UK hospital. Participants were 4 married couples (mothers and fathers) and were interviewed individually at least one year after their child's HSCT. Transcripts were analysed using interpretative phenomenological analysis (IPA). Results: Analysis produced 4 higher-order themes which detailed different aspects of participants' lives in relation to parenting and the context of their child's ill health: The Landscape of III Health; Trying to Understand [Intensity of Relationships] and Moving On. Themes represented parents' attempts to make sense of their experiences. Conclusions: This study provides a rich account of parents' experience and deepens understanding of some previous research. Attention to the experiences of these parents will afford professionals a better understanding of immunodeficiency disorder and HSCT from a parental perspective and assist them in their engagement of parents as partners in their child's care. Parents' narratives suggest that as well as embodying threat and uncertainty, one year on the experience of immunodeficiency disorder and HSCT can be facilitative to new perspectives on life, which has implications for long-term follow-up.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psych.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available