Parenting a child recipient of proton beam therapy : experience, expertise and recovery.

Abstract

Proton Beam Therapy (PBT) is a new type of therapy used to treat rare and complex tumours. PBT is claimed to improve patients’ quality-of-life by reducing treatment-related side effects and the risk of long-term complications; although long-term evidence for this is limited. Since 2008, NHS patients have had access to proton treatment through a government funded scheme, although access is restricted to an eligible list of users. Since the start of this scheme, the majority of treated patients have been paediatric patients. This research examines the experiences of parents of paediatric patients, treated with proton therapy. This is the first piece of research to examine users’ experiences involving proton treatment. Proton beam therapy is a new type of treatment and it is not known how users experience, perceive and make decisions involving this treatment. This is a qualitative inquiry based on joint and single interviews, carried out with 27 parents; eight fathers and 19 mothers. Participants were recruited via an online support group, as well as charities. A total of 21 families participated in this study; two families fell into the category of ‘self-funded’, meaning they opted for proton therapy against the advice of their child’s primary team of doctors and privately raised funds for treatment. The remaining families were sponsored by the NHS. Additionally, discourse analysis of patient information documents related to proton treatment was conducted. Juxtaposing the outcome of the discourse analysis with the accounts presented by parents in their interviews sheds insight into the different perspectives and experiences, if any, and enables us to look at whether and where contrasting views are reflected and reproduced, and the implications these may have. The way parents view and understand PBT and approach decision-making about this new therapy, and other treatments, are explored in this study. Additionally, this research situates parental knowledge and work, deployed in the management of their child’s illness and treatment, as expertise. Through attaining this expertise parents reclaim some order of control, protect their parental role and responsibility and manage some of their uncertainties. Exploration of these parents’ post-treatment accounts highlights a range of on-going health issues and uncertainties, some specific to PBT, which impede aspects of their child’s recovery. The literature on recovery is primarily focused on an individualistic adult patient perspective, however this research conceptualises recovery from childhood illnesses as a joint venture shared between parent(s) and child. Findings presented in this thesis contribute to the sociology of health and illness, and family studies, by providing insight into the experiences of parents of paediatric patients treated with proton therapy. It also contributes to sociological literature on expertise and recovery.