Abstract
Background:
Approximately 250 000 people live with epilepsy in Australia. On average 30% of people fail to respond to anti-epileptic drugs, resulting in ‘difficult to treat’ refractory epilepsy. Epilepsy is not only a medical condition but a ‘social label’ impacting the whole family, including children.
Objectives:
1. Address the gaps in understanding whole family experience of living with parental refractory epilepsy, including relationships and roles of the influential but currently ‘absent voices’ of family members in New South Wales.
2. Use data to enhance the ‘Patient Reported ImpleMentation sciEnce (PRIME)’ model (designed to support families and clinicians) to guide safer, high-quality healthcare and support services according to whole family need.
3. Ensure community and tertiary healthcare practitioners understand, recognise and support the whole family living with parental refractory epilepsy.
Methods:
A 9-person Stakeholder Panel will co-design the study, including 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, and 2 researchers. Twenty semi-structured interviews will be conducted with family members, including children and young people to understand inter-familial relationships, social and disease impact, and views on clinical practice and support services. A thematic analysis will be conducted.
Conclusion:
The information obtained in this partnership study will raise awareness, understanding, and improve outcomes for families living with parental epilepsy. The consumer-driven study will add vital, currently missing information to the PRIME model guiding future services.
Approximately 250 000 people live with epilepsy in Australia. On average 30% of people fail to respond to anti-epileptic drugs, resulting in ‘difficult to treat’ refractory epilepsy. Epilepsy is not only a medical condition but a ‘social label’ impacting the whole family, including children.
Objectives:
1. Address the gaps in understanding whole family experience of living with parental refractory epilepsy, including relationships and roles of the influential but currently ‘absent voices’ of family members in New South Wales.
2. Use data to enhance the ‘Patient Reported ImpleMentation sciEnce (PRIME)’ model (designed to support families and clinicians) to guide safer, high-quality healthcare and support services according to whole family need.
3. Ensure community and tertiary healthcare practitioners understand, recognise and support the whole family living with parental refractory epilepsy.
Methods:
A 9-person Stakeholder Panel will co-design the study, including 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, and 2 researchers. Twenty semi-structured interviews will be conducted with family members, including children and young people to understand inter-familial relationships, social and disease impact, and views on clinical practice and support services. A thematic analysis will be conducted.
Conclusion:
The information obtained in this partnership study will raise awareness, understanding, and improve outcomes for families living with parental epilepsy. The consumer-driven study will add vital, currently missing information to the PRIME model guiding future services.
| Original language | English |
|---|---|
| Publication status | Published - 2021 |
| Event | Australian Institute of Family Studies (AIFS) snack sized research showcase - Duration: 1 Mar 2021 → … |
Other
| Other | Australian Institute of Family Studies (AIFS) snack sized research showcase |
|---|---|
| Period | 1/03/21 → … |