Overview

Title
Carer Insights

Lead agency
Everymind and Hunter New England Local Health District

Project overview
‘Carer Insights’ videos and podcasts, featuring six carers, were developed by Everymind (a unit of Hunter New England Local Health District) in partnership with carer advocates. 

The video and podcast were co-designed and made by people who provide support and care for someone experiencing depression and/or anxiety. 

The podcast and video materials emphasise the viewpoints and expertise of carers.

Lived Experience Framework: Actions to achieve change

  • Service focus: shift how we do things, our assumptions, cultures we foster, and stories we tell
  • Culture and approach: recognise value of lived experience of caring, family and kinship groups across services and communities

Challenge

Contribute to a richer, nuanced understanding of people who provide support and care for someone with a lived experience of mental health issues. Providing support and care for partners, relatives or friends, while rewarding, can result in stress, isolation, financial hardship and impact mental health. 

Support and assist others who provide support and care through the sharing of carer stories, their journeys, experience and knowledge. 

Response

The project, based on collaboration and co-design by 31 stakeholders, was completed in five stages: 

  1. Project planning
  2. Engaging industry stakeholders and carer advocates to co-design question content, industry perspectives and lived experience for interviews
  3. Recruiting carers, running the interview event and its audiovisual production management
  4. Editing material into theme-based content suitable for mini podcasts and video content
  5. Communicating content with stakeholders, participants and appropriate content platforms.

Evaluation process

  • A formal evaluation process was not undertaken, however carer advocates provided feedback through a range of channels including podcast, e-mail and text messaging
  • Everymind noted several themes in four examples of carer feedback: carers’ appreciation of the training to understand and develop improved advocacy, interactions of family with clinicians and self-care skills, of lived experience being genuinely valued and enthusiasm to help.
Newcastle, NSW

Outcomes

  • Videos and podcasts featuring six carers
  • Video content that will be included in a national evidence-based, online carer support program (Minds Together for Carers) which will be launched in 2020
  • One of the videos is based on the style of an ABC TV show ‘You can’t ask that’. This video will be used by Everymind and will be available online for others
  • A tip sheet for carers and others on carer inclusion in project designs and carer advocacy (which is pending feedback and guidance from Everymind’s Carers Steering Committee).

Key learnings for the organisers:

  • People were very willing: carers were keen to share their lived experiences, to benefit others
  • Everymind’s Carers Online Steering Committee and affiliates helped distribute information to carer advocacy groups and connected to carer advocates to encourage them to get involved
  • Feedback from an online survey prior to content co-design gave early insights and helped carers to guide the project.

Key learnings from carers:

  • Carers had a sense of accomplishment and felt they contributed to mental health reform
  • Carers felt valued and appreciated.

Project benefits for other organisations or settings:

  • Rich, authentic content from carers’ perspective
  • Views, expertise and insight into daily life as a carer of someone living with a mental illness
  • Interviews showcase the rewards and challenges experienced by carers
  • Carers provided practical suggestions for overcoming these carer challenges.

Project challenges

A tight timeframe restricted the pool of available mental health carers with the capacity to come together, on one date, for an in-person interview at Everymind in Newcastle NSW.

Next steps

Publication of videos in 2020 (as part of a Minds Together carer inclusion and advocacy project): 

  1. Lucinda Brogden, National Mental Health Commissioner: my lived experience as a carer; the importance of self-care
  2. Five mental health carers: The #1, greatest piece of advice you could give to people who provide support and care for a person experiencing symptoms of depression and/or anxiety. 

Everymind will promote where lived experience video content has been used, published, shared, included in internal or partner communications, promotional material or events. 

References

1.    Everymind Lived Experience Framework Project report.