A View through a Different Lens: Capturing the Sibling Experience of Children with a Diagnosis of Autism Via Photo Narratives
Objectives: This is the first study to utilise, a modified version of a participatory methodology, Photovoice, combined with phenomenology to understand siblings’ everyday lived experience and to investigate opportunities for wellbeing in the environment of their families, schools and the wider local community.
Methods: 10 autistic siblings were recruited, aged 7 to 11, from 3 rural counties in Greece. Background information were collected using a number of psychometric tests. Siblings were involved by collecting data by themselves, determining the content of the data, and analysing and interpreting the data that consist of their observations, experiences and reflections as well as how they negotiate and construct reality through their every day interactions in their familiar environments over a period of 19 weeks. In this innovative approach, interpretation of the photographs was primarily in the hands of the children through photovoice groups, while interpretation of the narratives from the 1-1 interviews was the responsibility of the authors employing Interpretative Phenomenological Analysis.
Results: Our methodology facilitated dialogue and the collection of an array of data including 140 transcription pages and 95 usable photos. Sibling-driven content analysis identified five major categories: shared time at home (27.06%), sensory difficulties (25.04%), special interests (20.40%), supportive family members (16%) and pets (11.05%). Interpretative Phenomenological Analysis identified important topics. Three master themes emerged: (i) typicality in siblings' relationships such as feelings of love and support, (ii) the perceived difficulties in siblings' relationships with their family members such as sensory overload and siblings' conflicts, (iii) copying strategies including animals as a source of companionship and special interests to cultivate positive emotions throughout the day.
Conclusions: A key challenge in current research and intervention is the inclusion of the voice of disadvantaged groups such as the children with a diagnosis of autism. Photo voice, as a methodological choice, facilitated the expression of the participants' experiences by equalizing the research process and expose take for granted views on siblings’ experiences. Through eliciting sibling voice directly, we hoped to reveal positive aspects, as well as, previously unconsidered challenges in the life of children with a diagnosis of autism. A strong sense of love and pride of their autistic identity was expressed throughout the interviews, and this builds into an optimism that can be a crucial part of interventions that help to lift and further develop resilience, wellbeing and a life that is possible while planning for what remains to be difficult such as sensory and sleep difficulties. Such information around contemporary and lifecycle issues in the life of siblings is central to the goal of designing proactive empowering interventions by clinicians, communities such as school and other agencies, and by policymakers in relation to both quality improvement and cost containment.
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