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

ABSTRACT

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.

KEYWORDS:

• Intellectual disability and challenging behaviour
• families
• caring for a family member with disability

Acknowledgements

We acknowledge the families who gave of their precious time to be interviewed for this study. This work was supported by funding from the NSW Department of Family and Community Services.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Shoshana Dreyfus http://orcid.org/0000-0002-0592-9279

Leanne Dowse http://orcid.org/0000-0001-8673-2912

Notes

1 We acknowledge that the language used to define behaviour and behaviour supports is contested and varies internationally. In this paper we use “challenging behaviour” as the predominant term used in peer-reviewed literature and by the study informants to refer to behaviour that places people with disability and/or others at significant risk of harm. We recognise that behaviours may pose challenges to individuals, their supporters and the services and systems in which they are embedded.

2 As is sometimes common in linguistic analysis, behavioural processes were subsumed into the category of material.

Additional information

Funding

This work was supported by NSW Department of Family and Community Services: Ageing, Disability and Home Care.