Bartlett, Mary; (2025) Parents' Informed and Voluntary Consent to Haematopoietic Stem Cell Transplantation. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

This sociological study offers new insights on the topic of informed and voluntary consent, and how it is negotiated in haematopoietic stem cell transplantations. The study explores the experiences of parents of children under the age of 18 years old who received stem cell and/or bone marrow treatments on Blood and Marrow Transplant (BMT) units within the United Kingdom. The goal of this study is to contribute to the ways clinicians can support families to become involved in the treatment decision-making processes for major medical treatments, whilst ensuring that parents’ consent to treatments on paediatric wards is informed and voluntary. Previous research focused on family medical experiences has found that communication throughout a child’s illness changes over time within the physician-family relationship. Clinicians have also reported that they are seeing a shift in decision making authority within paediatrics, where the parents are gaining more authority within the shared decision-making relationship. This study builds on this by drawing on Bourdieu’s theoretical framework of the habitus, field and capital, to show that the notion of habitus provides a way of tracking changes in the relative power of medical practitioners and parents. Thus exploring communication becomes a key factor in showing how the dispositions of parents change over time to allow for a shift in the decision-making authority. This study draws on in-depth narrative interviews with parents about their experiences of the BMT consent process and the ways in which decisions for children’s (patients and donors) treatments are negotiated. The data shows that consenting in BMTs is an iterative process that goes beyond the ‘event’ of signing a consent form. As a result, this study provides a framework based on illness narratives that can be used to assess and support family participation in the BMT consent process. The study also proposes a potential assessment tool, yet to be developed, aimed at clinicians, for supporting families through consent processes.

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