'Absent voices'

exploring whole family experiences living with parental refractory epilepsy to inform service development and delivery

Karen Hutchinson, Frances Rapport, Geoffrey Herkes, Andrew Bleasel, Armin Nikpour, Chong Wong, Carol Ireland, Lukas Hofstätter, Sanjyot Vagholkar, Stephanie Kain, Tayhla Ryder, Jeffrey Braithwaite

Research output: Contribution to conferenceAbstract


Objectives: The unpredictable presentation of epilepsy can have a ripple effect on all aspects of life. It can impact not only the person living with epilepsy but, to varying degrees, family members. This research aims to address evidence-gaps in understanding and knowledge of whole family experience of living with parental refractory epilepsy, in Australia.

Methods: Qualitative data was collected from 2 Stakeholder Panel meetings, and semi structured interviews from 5 families with parents living with epilepsy, around Australia. Interviews explored inter-familial relationships, social and disease-impact and views on healthcare practices and support services, and impact of COVID-19. A thematic analysis of qualitative data has commenced.

Results: The Stakeholder Panel meetings and family interviews highlighted seven preliminary themes related to the impact of parental epilepsy on family life; financial, dependency, attitudes, risks, mental health, access to healthcare and support, and changed family dynamics and relationships. Additional stress associated with COVID-19 was emphasised.

Conclusion: The preliminary study findings provide social, emotional and contextual understanding of whole family need, and increase the evidence-base on the impact of parental epilepsy on self and other family members. These findings will help to guide future service developments and highlight the importance of family-oriented health and social care.
Original languageEnglish
Publication statusPublished - 2020
EventUTS Carers Incubator and Workshop - University of Technology Sydney , Sydney
Duration: 7 Dec 2020 → …


WorkshopUTS Carers Incubator and Workshop
Period7/12/20 → …

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