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'Absent voices'

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

Published Date: 7.12.2020

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Theme: Specific groups of carers

Sub-theme: Caring for someone with a neurological condition

Epilepsy Family caregivers Qualitative data Support services COVID-19 Conference

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Specific groups of carers

Sub-theme: Caring for someone with a neurological condition

View Publication Epilepsy Family caregivers Qualitative data Support services COVID-19 Conference

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

'Absent voices'

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

Published Date: 7.12.2020

  • Author/ Authors

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

  • Suggested citation (APA 7th edition)

    Hutchinson, K., Rapport, F., Herkes, G., Bleasel, A., Nikpour, A., Wong, C., Ireland, C., Hofstätter, L., Vagholkar, S., Kain, S., Ryder, T., & Braithwaite, J. (2020). 'Absent voices': exploring whole family experiences living with parental refractory epilepsy to inform service development and delivery. Abstract from UTS Carers Incubator and Workshop, Sydney.

Long Summary

This article explores the experiences of those living with parental refractory epilepsy and their family members in order to address current evidence-gaps in research. The findings reveal a range of impacts of parental epilepsy on family life including access to healthcare and support and changed family dynamics. The findings emphasise the importance of offering family-oriented health and social care.

    Key Messages for Carers


  • Explores the impact of COVID-19 on carers for those living with parental refractory epilepsy
  • Discusses the impacts of parental epilepsy on family life
  • Findings will help to guide services in the future

  • Key Messages for Policy Makers


  • Emphasises the importance of social, emotional and contextual understanding of whole family need in research
  • Highlights the importance of family-oriented health and social care

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.