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What is this research study about?

The purpose of this research is to better understand wellbeing in primary carers of autistic children and the factors that may promote and/or hinder wellbeing outcomes for primary carers.

Primary carers play a critical role in the lives of autistic children across their lifespan with the effectiveness of supports hinging of the wellbeing of the primary carer. Current understandings of wellbeing in primary carers of autistic children are limited. Existing understandings often associate caregiving with burden and distress and focus on the negative influence of the child. However, some carers associate positively with the experience and report wellbeing to be influenced by many factors not directly associated with caring for an autistic child. It is important to develop a broader, balanced, understanding of wellbeing to enable the development of more reflective policies and supports for primary carers, and those they care for.

Why should I help?

The findings of this study will contribute new understandings of autism, caregiving, and wellbeing with this information potentially helping to shape further research and future policy and practices. It is also likely that the participants in this research may benefit through gains in knowledge, understanding, and an improved sense of wellbeing. For Phase 2 participants, previous research using this photographic method was reported to promote primary carer feelings of wellbeing and helped primary carers reorientate towards more positive feelings. Other research indicates that reflective practice, meaning making, and narrative opportunities improve wellbeing insight, and bolster resilience and confidence. Phase 2 participants will receive a $30 gift card upon project completion.

Who can take part?

The research team is inviting primary carers of autistic children to participate.
A primary carer is defined as:

‘… the person most knowledgeable about the child’s care and needs [primary carers] play a crucial role in supporting their child and in managing a multitude of additional care responsibilities that influences the child’s health and access to services’ (Bourke-Taylor, et al., 2012, p.153).

This is a two-phase study:

Phase 1 asks approximately 50 primary carers to complete an online survey.
Phase 1 participants may nominate to also partake in Phase 2 of the research, this is voluntary.

Phase 2 invites 7 primary carers to partake in a 21-day photographic process.

Selection criteria, all participants:

  • Be a primary carer of an autistic child
  • Care for the child on fulltime basis, or majority of the time (40+hours per week)
  • Child must have official autism diagnosis (by official we mean by a medical practitioner)
  • Child be aged 2 to 18 years old
  • Must be able to complete all aspects of study in English or have access to own translator to enable participation

Phase 2 participants only:

  • Must have access to own camera device
  • Be willing & able to participate in all aspects of the study

Who is conducting this study?

Researchers from the Queensland University of Technology (QUT) are conducting this study. The research is part of a PhD for Kirsten Baird-Bate and is being supervised by an experienced team of researchers: Dr Lyndal O’Gorman, Associate Professor Beth Saggers, and Dr Julie Dillon Wallace.

What will I be asked to do?

Phase 1 participants will complete an online survey, please email below for link.

Phase 2 participants will take a photograph a day for 21 days before discussing the images in a 60-minute semi-structured interview, conducted via Zoom. You will take the photographs on your own mobile device and email them to the researcher at the end of each week. You are asked to (symbolically or literally) capture your concepts of wellbeing and what factors may influence feelings of wellbeing. The focus is on your experience as the primary carers, not on your child. Any image featuring human subjects pixelated to protect identity.

To find out more about the study and register to participate:

If you are interested in participating in Phase 1 of this study, please contact:

Principal Researcher:

Kirsten Baird-Bate, PhD Student.

Associate Researchers:

Dr Lyndal O’Gorman, Principal Supervisor

Assoc. Prof. Beth Saggers, Associate Supervisor

Dr Julie Dillon-Wallace, Associate Supervisor

Faculty of Education, Queensland University of Technology (QUT)

If you are interested in participating in Phase 2 of this study, please nominate your interest at the completion of the survey or email the lead researcher, Kirsten Baird-Bate, directly. Kirsten will provide you with further information to ensure that your decision and consent to participate is fully informed. If you have any questions or require any further information, please email one of the research team.

Please feel free to forward this information to others who might also be interested in participating.

Please feel free to forward this information to others who might also be interested in participating.

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