The lived experiences of aunts and uncles supporting parents of children and young adults with Autism Spectrum Disorder (ASD): An interpretative phenomenological analysis study (Symposium Poster)

Background: Previous research has explored how caring for a child with autism spectrum disorder (ASD) has impacted the family (Hillman, 2007, Chua, 2012, Hayes & Watson, 2013). However, the majority of this research has been from the parents’ perspective (Searing, Graham & Grainger, 2015, Nealy et al., 2012, Bayat, 2007). Research indicates that parents rely greatly on their extended family and family friends for support (Twoy, Connolly & Novak, 2007, Altiere & von Kluge, 2009, Dyches et al., 2016). Some research has begun to explore the perspective of siblings and grandparents who provide this support (De Caroli & Sagone, 2013, Miller, Buys & Woodbridge, 2012, Mitchell, 2007), however there is a need to explore the perspectives of other members of the extended family such as aunts and uncles. Research has also highlighted the need to involve extended family members in future research and support interventions (Singh, Ghosh & Nandi, 2017, Meadan et al., 2016, Walton & Ingersoll, 2015, Zuna et al., 2016). As yet, no research has been conducted on aunts’ and uncles' perspectives of supporting parents of children with ASD. Research Question: What are the views, experiences and perceptions of aunts and uncles on their role in supporting the parents of a child or young adult with ASD and how this role can best be supported? Aim: To explore what it means for aunts and uncles to provide support to parents of children and young adults with ASD, and their views on what support they would like to receive themselves. Objectives: To explore aunts and uncles’ views, experiences and perceptions of supporting parents of children or young adults with ASD and the sense they make of this. To explore aunts and uncles’ views, knowledge, experiences and perceptions of available support, any support they currently receive, or have already received, that assists them in their role of supporting parents of children or young adults with ASD. To explore aunts and uncles’ views, experiences and perceptions of what support they would like to receive that would assist them in their role of providing support to the parents of children or young adults with ASD. Methodology: This study will follow a qualitative design utilising interpretative phenomenological analysis (IPA; Smith, Flowers & Larkin, 2009). The study will be a snapshot, collecting data at one time point. I have utilised an IPA approach as the main aim of this research is to explore participants’ views, experiences, perceptions in detail. In particular, I will explore the perceptions of the aunts and uncles and the sense they make of providing support for parents of the child with ASD. Analytical Strategy: Audio recordings of interviews conducted with aunts and uncles will be transcribed verbatim using NVIVO. Transcripts will be anonymised and identifiable information will be removed during the transcription process. NVIVO will also be used to code and analyse the anonymised transcripts. Interviews will be analysed using an IPA (Smith, Flowers & Larkin, 2009) following the six steps of: 1) immersion in data; 2) initial noting; 3) developing emergent themes; 4) identifying connections across emergent themes; 5) moving to the next case; and 6) searching for patterns across cases.  Original Contribution to Knowledge: In neurotypical families, research has highlighted that aunts and uncles are a great source of support to parents as well as their nieces or nephews (Milardo, 2010; Langer & Ribarich, 2007). It has previously been highlighted that not enough research explores the role that aunts and uncles have in supporting neurotypical families (Erola, et al., 2018). However, this small yet growing body of research has found that neurotypical children who have supportive aunts and uncles have been found to have better educational and socio-economic attainment than children whose aunts and uncles are less supportive (Erola, et al., 2018; Jæger, 2012). This is the first study to use Interpretative Phenomenological Analysis (IPA) to specifically focus on exploring the experiences of aunts and uncles supporting parents of children with ASD. The use of patient, public involvement (PPI) throughout the project has also provided a unique insight into aunts and uncles’ experiences of providing support for the parents of their nieces and nephews with ASD and the impact that giving this support has on these families. PPI has helped to focus the research and will ensure the results have relevant, real world applications.
Presented at the Faculty of Health, Social Care and Medicine's Postgraduate Research Symposium 2019