Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day” [2018]

Background: Research into parents’ experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores “I-statements” parents made about their day-to-day actions in life with their family member.

Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. “I-statements” were analysed using process analysis from systemic functional linguistics and thematic analysis.

Results: “I-statements” showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes.

Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them.

Shoshana Dreyfus & Leanne Dowse

Journal of Intellectual & Developmental Disability, 18 Oct 2018