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Capturing Lived Experience in Pictures Using Co-Production: Quality of Life of Autistic Adults
Research has consistently documented that autistic adults experience poorer quality of life (QoL) compared to their neurotypical peers. Despite this, a paucity of research has aimed to understand the meaning of QoL from the perspective autistic people themselves. In order to address this gap, the current study recruited a steering group of autistic adults in order to co-produce this research, being involved in development and refinement of the research design, materials and assisting with data interpretation.
Photovoice methodology has been used with minority populations and those with intellectual disability, and more recently with autistic people. This method allows participants to capture meaning, and articulate their needs and perspectives in a way that limits misinterpretations by researchers. Photovoice could potentially evoke creativity, and critical reflection that may be unavailable via words alone.
Interviews challenging for autistic adults, due to language, communication and social challenges that they can experience. Capturing information through photovoice supports the visual strengths and preferences of autistic people could be a more effective approach. One autistic co-author is a photographer, and has assisted in developing the photovoice resources to ensure participants are taught some simple photography techniques, and to ensure this is communicated clearly to the autistic participants.
Objectives:
To capture life experiences relevant to the QoL of autistic adults.
Methods:
15 autistic participants are being sampled to participate in this photovoice study following participation in an interview study exploring subjective QoL. Photovoice participants receive a link to a video introduction and photography tutorial prior to partake in taking photos capturing and reflecting their perspectives of their QoL. Following this, participants attend a focus group, presenting a choice of 3 photos, and discussing what each photo means to them. The group also label each photo and develop themes to describe their collective experiences, hence, analysing the data from their perspective. These analysis focus groups are co-facilitated by the autistic photographer working on the project. Following the focus group, the participants will be invited to an interview allowing for a detailed analysis of their remaining photos.
Results:
Preliminary themes important to QoL of autistic adults include; Interests, Independence, Having a valued role in society, Engaging in the community and Sensory preferences. Some examples include engagement in outdoor activities, partly due to an interest in nature, partly due to the sensory aspects associated with the activity, for example the warmth of the sun and sounds of the leaves rustling in the wind. Current preliminary themes suggest that more specific examples are obtainable using photovoice when compared to interviews. Data is still being collected from the participants and analysis is continuing. Further comparisons between photovoice data and interview data are emerging as data collection and analysis continues.
Conclusions:
This study has captured a wide variety of experiences that are important to QoL of autistic adults, including independence, interests and having a valued role in society. Photovoice has served as an effective method through which to obtain this information, being particularly beneficial for those that are more visually oriented.