“I just want to be seen as me” Children and young people’s experiences of having a sibling with severe and complex needs
: an interpretative phenomenological analysis

  • Brittany A Fisher

Student thesis: Doctoral ThesisDoctor of Educational Psychology (DEdPsy)

Abstract

This research presents a qualitative study into the experiences of children and young people, aged between 11-16 years, who have a sibling with severe and complex needs. Throughout the research, system-based theories: family systems theory (Bowen, 1978) and ecological systems theory (Bronfenbrenner, 1979), heavily influenced the research process.
This research study used semi-structured interviews to explore the experiences of children and young people, who have a sibling with severe and complex needs, who do not have a diagnosis of ASC, in the hope that it will contribute to the limited research body in this area. Interpretative Phenomenological Analysis (IPA) was the chosen methodology for this research study as it is viewed as the optimal methodology when exploring topics that are equivocal, complicated and involve personal emotions (Smith and Osborn, 2014).
From the analysis stage of the research, six superordinate themes were identified: ‘Impact of the coronavirus pandemic (2020-2022)’; ‘A mixture of emotions’; ‘Leading a double life’; ‘Protectiveness of sibling’; ‘Undertaking a caring role’; ‘Support systems’. These themes and their respective sub-themes are presented using quotes from participant interviews and then later discussed reflecting on the current literature, psychological theory and the research question.
All seven participants had differing levels of knowledge in terms of their siblings diagnoses and adopted various roles within their siblings care. Participants shared both the positives and strengths of having a sibling with severe and complex needs as well as the difficulties and challenges experienced, and how their experiences and feelings altered based on the coronavirus pandemic. Participants also reflected on their current support systems and what they value within those sources of support.
The experiences shared within this research study, by children and young people who have a sibling with severe and complex needs, have highlighted the significance of this topic to the professional practice of educational psychologists. The research findings have also indicated further suggestions for future sibling research within this area.
Date of Award6 Dec 2022
Original languageEnglish
Awarding Institution
  • University of Bristol
SupervisorRob Green (Supervisor), Pauline Heslop (Supervisor) & Jak L Lee (Supervisor)

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