Research Portfolio submitted in part fulfilment of the requirements for the Degree of Doctorate in Clinical Psychology

Literature Review: The lived experience of children and adolescents with a rare disease. A meta-study. The purpose of the current meta-study was to identify and synthesise the available qualitative research evidence across rare disease conditions, to establish common themes related to childhood lived experience of rare diseases and to understand the challenges posed by rare diseases. This meta-study draws together findings from 12 qualitative studies that represent the lived experience of a large sample of children (n = 652) with rare diseases from a variety of countries. Children's lived experience of rare disease can be understood as feeling different and being treated differently; a narrative of restriction; distress and uncertainty; coping by drawing on internal and external sources of support. This meta-study highlighted that children's experience was formulated with a lack of reflexivity and drawing on a mix of child and adult experience. Theoretical reference across the studies was lacking, though frequent use of the term "psychosocial" suggested a grounding in the biopsychosocial paradigm. In addition, this meta-study found that the understanding of children's lived experience of rare disease is still in its infancy and reflects a majority western world perspective. Future research could perhaps diversify to include the experience of children in non-western countries. The clinical implications of this metastudy are that clinicians working in the area of rare diseases need to be aware that children may struggle with feelings of difference, restriction, distress and uncertainty. Children with rare diseases would also benefit from peer support from others with rare diseases. Service Improvement Project paper: The experience of service users/people with personal experience being interview panel members for DClinPsych selection interview. The following Service Improvement Project presents a piece of work that was commissioned by the University of Bath, Clinical Psychology Doctoral (DClinPsych) programme admissions committee. This work firstly aimed to explore the experience of users of psychology services (known as People with Personal Experience, or "PPE") being part of the DClinPsych trainee admission interview process and secondly provide recommendations regarding the admissions process the following year. A focus group was conducted with 4 of the PPE representatives and transcribed verbatim. A version of Interpretative Phenomenological Analysis (IPA) adapted for focus groups was used to analyse the data. Four themes reflected the experience of the PPE as part of the interview process, these were: Challenges; A Unique Perspective; Connectedness; Finding a Voice. The themes intersect multiple levels of experience. Results are discussed in the context of previous research in the area. Recommendations and the corresponding response from the programme admissions committee are presented. Main Research Project: The transition from paediatric to adult healthcare with Oesophageal atresia/trachea-oesophageal fistula (OA/TOF). A qualitative study exploring the experiences of young people, adults and parents. The overall aim of this study was to explore the experience of healthcare transition from paediatric to adult healthcare for adults' born with OA/TOF and parents. A particular focus was how the different paediatric and adult services were experienced, whether parents and adults experienced a change in their roles during healthcare transition and also to identify challenges faced as part of the transition. OA/TOF is a rare chronic condition that can require lifelong medical support. There is evidence to suggest that transitioning from paediatric to adult healthcare can be problematic with OA/TOF, a finding that appears to be true in both rare and chronic conditions. The literature on healthcare transition is saturated with a common chronic illness narrative and there is a suggestion that the experience of transitioning with a rare condition is worse than transitioning with a common chronic condition. We currently don't clearly know why this might be the case. A qualitative, cross sectional, survey-based study was carried out. Unrelated parents (n=23) and adults (n=21) were recruited through a UK based OA/TOF charity. Data were collected through an online survey. Data from six open ended questions were analysed using a sixstage hybrid approach combining elements of inductive and deductive thematic analysis (Fereday & Muir-Cochrane, 2006). Five themes were constructed reflecting the experience of parents and adults transitioning from paediatric to adult healthcare: Thrown into the unknown; A cultural shift; Stepping back and stepping up; "No transition as such"; Living with uncertainty. The findings suggest that a formalised, managed healthcare transition is practically non-existent for people born with OA/TOF. We recommend a formalised healthcare transition process in OA/TOF. This should involve a period of preparation to get adolescents and parents ready for transition. It would be beneficial for those working in adult services to receive additional training regarding issues that adults born with OA/TOF may struggle with. It would also be helpful for families to have a named keyworker to support them through the process of transition.