Communicating the complex lives of families that include a child with Down syndrome

ABSTRACT

Families of children with Down syndrome experience complex lives and needs, yet the few existing studies on these families are written in conventional academic prose that is not optimal for knowledge translation beyond academia, particularly for busy healthcare professionals. In this paper, we Depart Radically in Academic Writing (DRAW) (Mackinlay, 2022) and present data poetry and two case studies that draw upon semi-structured interviews with mothers, fathers, and siblings, who were interviewed separately about their experiences of having a child/sibling with Down syndrome. We introduce our interdisciplinary team that includes academics and clinicians to contextualise our focus on research translation. We demonstrate that writing with creative criticality (i.e. ‘DRAWing’) contributes an embodied and affective understanding of research participants’ stories, which is largely lacking in the academic literature on families of children with Down syndrome and the sociology of health and illness field more broadly. Moreover, DRAWing can impact audiences emotionally as well as intellectually (Richardson, 2003, p. 924), which has important knowledge translation implications for both healthcare professionals and these families. DRAWing can capture healthcare professionals’ attention, prompting them to critically reflect on their practices and opportunities for improving care and treatment for these families.

KEYWORDS:

• Departing radically in academic writing (DRAW)
• knowledge translation
• down syndrome
• families
• healthcare professionals
• sleep

Acknowledgements

We would like to acknowledge and thank the families who generously shared their experiences for this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Qualitative data analysis coding software

2 The Australian Government’s JobKeeper Payment was paid to eligible employed Australians and businesses who were negatively economically impacted by the COVID-19 pandemic.

Additional information

Funding

This work was supported by Queensland Government Advancing Clinical Research Fellowship [Awarded to Dr Jasneek Chawla]; The Australian Research Council Centre of Excellence for Children and Families over the Life Course [grant number CE140100027].