"Putting together pieces of a puzzle”: the lived experiences of parent carers of children with learning disabilities attending mainstream education

  • Emma Foley

    Student thesis: Doctoral Thesis


    A qualitative enquiry into a phenomenology of fear and the efficacy of storytelling as an aid to understanding and appreciation.

    Background: Increasing numbers of children with learning disabilities are attending mainstream education. Parent carers of children with learning disabilities have often been found to face marginalisation and struggle to have their voices heard. Research from the last three decades has identified their continuous battles with professionals, historical prejudice, and difficulties when advocating for their child's education. When considered historically, changing attitudes to disability and the practice of inclusivity can be considered as still in their infancy.

    Aims: The study aimed to qualitatively enquire whether parent carers feel listened to and understood by professionals in mainstream education and whether not feeling heard has the potential to create a mistrust or fear of professionals and researchers alike. The efficacy of storytelling was also part of the enquiry.

    Methods and process: Semi-structured interviews were undertaken with 3 female parent carers of male children with learning disabilities attending different primary schools in Wales. The interviews were deemed as conversations with purpose and a pluralistic perspective considered this as a therapeutic storytelling process to promote individuality and difference. Data was analysed using an adapted version of Interpretative Phenomenological Analysis. Visual arts-based participatory methods were also used to capture data creatively where Data Portraits were developed specifically for the study to enable participants to engage with the arts and then de-coded.

    Outcomes and results: Six key themes were identified which captured the essence of participants experiencing; a) loneliness and isolation; b) anger and frustration; c) fear of failing and of being failed; d) purpose and meaning; e) storytelling and the transformation of metaphor; f) post traumatic growth and surviving and thriving. Findings suggest the efficacy of storytelling as an aid to mutual understanding and appreciation for both researcher and participant, providing a way to make sense of thoughts, experiences, environments, and beliefs. The use of metaphor was evidenced to be a powerful tool in transforming the symbolic meaning of their experiences. The study identified a phenomenology of fear stemming from parent carers relationships with professionals in mainstream education creating three categories: a) fear of failing; b) fear of being failed; c) fear that research will not impact services and provision. No fear or mistrust of researchers motives was identified.

    Conclusions and implications for research: Although only a small study, this qualitative enquiry provides evidence that parent carers wellbeing can often be adversely affected by relationships with professionals in mainstream education settings, leading to mistrust and fear. Understanding a phenomenology of fear does not appear to have been addressed in any previous studies when considering the psychological wellbeing of parent carers of children with learning disabilities attending mainstream education, therefore the study is considered unique and adds to the wider body of literature. Findings highlight a need to acknowledge the voices of parent carers, listening to their stories to facilitate the building of trusting relationships, mutual respect and understanding, and to negate psychological distress. Co production facilitates a sharing of knowledge and experience to further inform learning disability research and support the co-morbid emotional and mental health needs of children with learning disability and/or autism attending mainstream education to enhance their lives and improve policy and provision.
    Date of Award2024
    Original languageEnglish
    SupervisorJodie Allinson (Supervisor), Emily Underwood-Lee (Supervisor) & Michael Carklin (Supervisor)

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