The Experience of Being Parent to a Child with Immunodeficiency Disorder: One Year On from Haematopoietic Stem Cell Transplantation (HSCT),

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.

This thesis supplied via ROAR to UEL-registered users is protected by copyright and other intellectual property rights, and duplication of any part of the material is not permitted, except for your personal use for the purposes of non-commercial research and private study in electronic or print form. You must obtain permission from the copyright-holder for any other use. Electronic or print copies may not be offered, for sale or otherwise, to anyone. No quotation from the thesis may be published without proper acknowledgement.