Johnson, Emma Louise (2025) Exploring the Lived Experience of Advocating for a Disabled Child While Engaging with Professionals and Institutions. Masters thesis, University of Wales Trinity Saint David.
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Abstract
Previous research has shown that parent carers, despite their vital role in securing their children’s rights and wellbeing, often encounter systemic barriers that undermine their agency and advocacy. This study addresses the gap in understanding parent carer agency by exploring the impacts of care provision, examining barriers to seeking help, and identifying factors that could improve the advocacy experience. It employs an innovative approach by combining interpretative phenomenological analysis (IPA) with visual elicitation and a social justice lens to explore the lived experience of a parent carer advocating for a disabled child. The findings reveal that parent carer agency is a complex phenomenon, deeply rooted in the interconnected relationship between parent and child and intensified by disability. Four main themes emerged, each centred around this relationship: the specialness of the bond between a parent carer and child; the advocacy journey as a battle for voice and knowing; the particular importance of justice as recognition and rebalancing; and how time affects agency and recovery. The essence of parent carer agency is thus defined by the complex interplay of fragility and strength within this unique relationship. Enhancing parent carer agency is therefore important for dismantling systemic barriers to advocacy and ensuring the wellbeing of both the parent carer and their child. Supporting parent carers means listening to their stories and letting their lived experience and knowledge guide professional and institutional engagement. The study’s insights offer valuable contributions to pave the way for further research aimed at shaping policy and encouraging more reflexive and sensitive approaches to working with parent carers. Recommendations include mandatory lived experience training for professionals throughout the UK and the prioritisation of collaboration between universities, policymakers, and practitioners to promote anti-oppressive practices. These measures can help build a more empathetic system that genuinely supports parent carers in effectively advocating for their children, improves their advocacy experience, and recognises the importance of parent carer agency in advocacy partnerships.
| Item Type: | Thesis (Masters) |
|---|---|
| Subjects: | H Social Sciences > HV Social pathology. Social and public welfare |
| Divisions: | Theses and Dissertations > Masters Dissertations |
| Identification Number: | https://doi.org/10.82227/repository.uwtsd.ac.uk.00004082 |
| Depositing User: | Victoria Hankinson |
| Date Deposited: | 08 Jan 2026 15:32 |
| Last Modified: | 08 Jan 2026 15:39 |
| URI: | https://repository.uwtsd.ac.uk/id/eprint/4082 |
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