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In their own words, in their own photos: Siblinghood experiences, perspectives and needs of typically developing and autistic children

Pavlopoulou, Georgia; (2019) In their own words, in their own photos: Siblinghood experiences, perspectives and needs of typically developing and autistic children. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Sibling relationships are one of the most enduring connections throughout the lifespan. Past research has reported on both positive and negative outcomes, yet a negative impact upon sibling’s wellbeing remains predominant through a stress and coping approach. Sibling experiences can be complex and often difficult to capture using traditional methods, as they are often habitual and taken for granted. This thesis explored siblings’ experiences, needs and perspectives through an existential wellbeing perspective combining phenomenological and community-based participatory research (CBPR) approaches in which siblings and stakeholders collaborated with the researcher. Twenty typically developing sisters and ten autistic siblings, all from 30 different Greek families, were interviewed and actively involved in the research by: i) collecting photo and audio data by themselves, ii) determining the content of the data and iii) categorising and presenting their data in the community. This is the first thesis to use modified Photo-voice methodology (23-33 weeks duration) in order to give siblings an active participatory role, a rare methodological approach in the current field of autism research. The results of the current thesis are presented as a continuum of siblings’ experience as opposed to categorical classifications of positive and negative experiences presented in the literature previously. By framing the current thesis beyond an autism deficit focus, results illuminate the complexity of day-today experiences, strengths and needs of autistic children and their families as portrayed through their situated context. This may inform current beliefs that underlie autism interventions, as it 7 moves away from the notion of the pathologisation where autistic children are always seen as the ‘problem’. Last, in the discussion part this thesis suggests several ways in which future research and practice may enable siblings and siblings’ local community to better articulate and act on their needs and to enhance autistic stakeholders and siblings on their capabilities for agency and wellbeing through a lifeworld perspective.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: In their own words, in their own photos: Siblinghood experiences, perspectives and needs of typically developing and autistic children
Event: UCL - University College London
Language: English
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Psychology and Human Development
URI: http://discovery.ucl.ac.uk/id/eprint/10061358
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