'Absent voices': exploring whole family experiences living with parental refractory epilepsy to inform service development and delivery

Research output: Contribution to conferenceAbstractpeer-review


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 and friends. This research aims to:
1.Address evidence-gaps in understanding and knowledge of whole family experience of living with parental refractory epilepsy.
2.Clarify relationships and roles of the potentially influential, but currently ‘absent voices’ of families in Australia affected by refractory epilepsy.
3.Guide stronger collaboration in the co-design of health care and support services, according to whole family need.
A Stakeholder Panel meeting was set up to co-design and inform study planning. It included: 2 parents living with epilepsy, 1 adult carer, 1 young carer under 25 years, representatives from Carers NSW and Epilepsy Action Australia, an epilepsy specialist clinician, a General Practitioner and 4 epilepsy researchers. The in-depth qualitative study includes data collected from 2 Stakeholder Panel meetings and approximately 20 semi-structured interviews with parents living with epilepsy and family members (including children and young people between 10 to 25 years). Interviews will explore inter-familial relationships, social and disease-impact and views on healthcare practices and support services. The impact of COVID-19 on the family will also be explored. Demographic data will be collected from all participants. A thematic analysis will be conducted with qualitative data.
The first Stakeholder Panel meeting and initial family interviews highlighted family issues around changing roles and responsibilities within the family, the emotional toll on all family members, challenges accessing healthcare and social support services, financial repercussions, impact of changes to the expected life course and the overall ‘domino’ effect of parental epilepsy on the family. Greater stress placed on families during COVID-19 pandemic was emphasised.
The preliminary study findings will provide much needed 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 healthcare.
Original languageEnglish
Number of pages1
Publication statusPublished - 2020
EventEnCouRage Research Symposium - Macquarie University, Sydney, Australia
Duration: 24 Sep 202025 Sep 2020


ConferenceEnCouRage Research Symposium
Internet address

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