Abstract
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.
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 language | English |
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| Publication status | Published - 2020 |
| Event | UTS Carers Incubator and Workshop - University of Technology Sydney , Sydney Duration: 7 Dec 2020 → … |
Workshop
| Workshop | UTS Carers Incubator and Workshop |
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| City | Sydney |
| Period | 7/12/20 → … |