Mother's perceptions and sense-making of their roles in speech and language therapy for children with autism in Ireland

Abstract

Introduction: Parental involvement in SLT is recommended by professional bodies (e.g., RCSLT, 2009) and service providers (e.g., HSE, 2018) alike. It is necessary for the delivery of family-centred models of care and evidence-based practice (Hanna & Rodger, 2002; Strauss et al., 2012), and in the context of autism and lifelong conditions is argued to contribute to more meaningful outcomes for families (Espe-Sherwindt, 2008). Yet, few studies have attempted an in-depth exploration of how parents perceive the parent role in SLT. Those which do so tend to focus only on parental behaviours. This study aims to increase understandings of the parent role in SLT, utilising a broader definition of a role which encompasses both behaviours and attitudes. Specifically, the study investigates how mothers in Ireland perceive and make sense of their role in SLT for children with autism. Method: This study involved a core Interpretative Phenomenological Analysis (IPA) study supplemented with auxiliary survey studies and a deductive analysis. The IPA study used interview data from six mothers of children with autism to explore how they perceived and made sense of their role in SLT. The survey studies were designed to contextualise the IPA findings and stimulate further analysis of the IPA data. One survey targeted parents and sought to address what roles parents believed were expected of parents and therapists in SLT. The second survey targeted SLTs and sought to determine what intervention pathways were available for children with autism in Ireland. It also investigated therapists' reported practices regarding including parents in decision-making. Following completion of these survey studies, I re-interrogated the preliminary IPA findings, resulting in the construction of four superordinate themes. Finally, I conducted a deductive analysis using interview data from six additional mothers, to investigate if the IPA themes were evident across other cases. Findings: The survey results signal the challenging context in which parents may navigate their role in SLT in Ireland. The parent survey indicates that many parents enter therapy with an expectation of being involved in therapy, but their expectations are often grounded in therapist-led intervention approaches. The SLT survey findings indicate that many parents likely experience gaps in service provision at times. These gaps may impact on their expectations of therapy roles. Four superordinate themes were constructed through the IPA study. Two related to the participants' understandings and expectations. These themes pointed to the importance of participants' understandings and expectations of 1) autism and 2) SLT, to their sense-making of roles. The theme "Therapy Mother" encapsulated two types of roles relating to the implementation of therapy. The first, "Apprentice Builder," involved mothers working hard to "build" their children's communication at home by learning from and being directed by the SLT. The second, "Manager-Therapist-Mother" involved mothers feeling compelled to work in a professional capacity alone because of perceived limitations in resources. This "Manager-Therapist-Mother" role was experienced as being in conflict with maternal identities and understood as striving to do the impossible, while incurring significant sacrifice. The fourth theme, "A Game of Survival" captured participants' interpretations that services and sometimes professionals acted as barriers to intervention, leading participants to approach role construction from a position of mistrust and to adopt roles as advocates for their children. The deductive analysis found evidence to support the potential relevance of the IPA findings to other mothers of children on the autism spectrum based in Ireland. Conclusions: The findings have implications for theories of role construction and how researchers seek to capture therapy roles. They also point to the importance of clinicians routinely discussing roles, being cognisant of how and why they invite parents to be involved in therapy and acknowledging the work done by parents often in personally challenging circumstances, to support therapists and children.