Eliciting the voices of children and young people with complex needs:: Identifying innovative methods and using digital stories for supporting transitions

Abstract

The importance of eliciting the voices of children and young people and their participation within decision-making on matters that affect their lives is robustly supported within government guidelines and legislation. However, previous research suggests that due to perceived communication barriers, autistic children and young people are frequently excluded from decision-making and consultations relating to their education planning and omitted from research studies. Autistic children and young people residing in residential schools who have complex needs are further underrepresented within research and decision-making. It is therefore crucial that research develops and evaluates novel and
creative methods to ensure the views and voices of young people with complex needs areheard, listened to, and understood.
To address these gaps in the literature, I carried out a systematic literature review (Chapter 2) to explore innovative methods that have been developed to elicit the voice of children and young people with complex needs about their educational experiences and preferences, and explored how young people’s voices are represented in these methods. The findings suggests that it is possible to access the views of children and young people with the most complex needs through the creation and use of inclusive methods, which are novel, creative, and individualised to the child or young person. However, crucially, more needs to be done to ensure that their views are acted upon, given due weight, and influence change. In an empirical study (Chapter 3), I have extended and evaluated the use of Digital Stories as a methodology to facilitate knowledge co-creation of young people’s transition trajectories to adulthood. This has been achieved through co-creating three Digital Stories in partnership with autistic young adults and their families, and the care staff and other professionals working within a residential special school. Semi-structured interviews were
conducted with key stakeholders to understand their perspectives, experiences, and views on the Digital Story methodology, and its use and impact within each young adult’s transition. Reflexive thematic analysis of interviews led to the generation of five themes: benefits of Digital Stories; humanising approach; ownerships and agency; ethical considerations; and direct impact on practice. The findings suggest that Digital Stories are a powerful methodology, which enable young people’s voices to be heard within transition to adulthood and can provide an authentic, personalised, and positive representations of young people’s views and perspectives.

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Identifiers

ORCID for Hanna Kovshoff: orcid.org/0000-0001-6041-0376

ORCID for Sarah Parsons: orcid.org/0000-0002-2542-4745

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