Overview

Title
Wrapped with Love: A Carer Guide to an Unexpected Journey

Lead agency
Mental Health Carers ARAFMI Illawarra (ARAFMI)

Project overview
ARAFMI produced a Carer Guide and an education resource for mental health carers. The resource shares carer stories to help family and friends, or health and welfare professionals understand carer experiences from a lived experience perspective. Carer learnings could be shared with other carers via an education resource.

Lived Experience Framework: Actions to achieve change

  • Focus: shifting the usual way of doing things, the cultures we foster, the assumptions we make and the stories we tell
  • Policy: policy, planning, evaluation, research, monitoring and reporting is done collaboratively and transparently through co-design and co-production; explicitly stated as co-designed
  • Participation: paid opportunities for people with lived experience of mental health issues, including carers, to participate, influence and lead in mental health and social services.
Wollongong Harbour, NSW

Wollongong Harbour, NSW

Challenge

Share the knowledge and experience of carers with other carers via a Carer Guide and educational resources.

Response

The Carer Guide was developed and printed in a small quantity. The guide covers an introduction to caring, what it is to be a mental health carer, principles of caring, how to safely share your story, the importance of self-care and provides an opportunity for a new carer to journal their story.

All project stages were co-designed with carers including interview question developed during the planning stage. The guide was based on the perspectives of 23 carers. They shared their experience and knowledge through interviews and focus groups. The guide was reviewed by carers who participated in the interviews.

 

Review findings will form part of improving the process if further lived experience guides are made in the future. Carer interviews and focus group session responses are available for others to use.

The project was enabled by:

  • Paid participation: Participants received remuneration of their time and commitment
  • Flexibility: Organisers were flexible around interviews. This flexibility allowed carers to reschedule if their carer responsibilities became a priority. People were also offered an option to provide written responses to the questions. 

Evaluation process

  • Evaluations of focus groups, interviews and the guide were undertaken and reported
  • Evaluations included demographics including gender, age and years of carer experience
  • Focus group evaluation results reveal carers varied in age group (40-49 to 70-79 years) and carer experience from four to twenty-four years (an average of ten years); comprised of seven females and two males, who are caring for children, grandchildren and partners.

Outcomes

  • Improved collaboration: The Carer Guide was developed with the input of local ARAFMI carers.  Two ARAFMI members led the project and planned and delivered three focus groups and several individual interviews. Two TAFE students and a social work student participated in initial development. Project leaders and the students formulated questions for the focus groups and interviews 
  • Improved culture through co-design: participants worked together to plan, design and deliver the focus groups and interviews with a common goal of supporting the value of lived experience in co-design and improvement of health services
  • Building carer capacity: carers learnt about the carer peer worker role, the role of carer advocacy and how carers can be involved in supporting new carers by telling their stories from a lived experience framework
  • Building new knowledge: carers will better understand how to access resources and guidance through using the ARAFMI Carer Guide.  

Key learnings from carers:

  • Carers felt safe and comfortable during the consultation process (individual and group)
  • Participants believed their stories were heard, they felt they have been listened to
  • People said that they were proud that their contribution would benefit other carers.

Key learnings for organisers and other organisations:

  • Carers’ willingness to be interviewed in a tight timeframe and facilitators’ commitment and teamwork were crucial to the success of the project 
  • The organisers needed to be inclusive to ensure co-design principles underpinned the whole project. Phone and e-mail were used to collaborate with carers to rewrite interview questions, which supported an inclusive approach from the early stages of the project
  • Organisers need to be flexible to gain the expert advice of people who have competing priorities (such as caring or work); have capacity to rearrange interview times to fit carers’ needs or provide written questions if carers are unable to attend in person
  • For others undertaking a similar project: to maintain the currency of a document, regular reviews are needed to ensure that new information sources, policy or legislation changes are reflected. People with carer lived experience must participate in this feedback-loop process.

Next Steps

  • Publication of Carers Guide on ARAFMI website from 2020
  • 2020 University of Wollongong Community Engagement Grant: to evaluate ARAFMI carer wellbeing programs
  • The University of Wollongong grant may also result in the development of a carer community engagement app.  

References 
1.    ARAFMI Lived Experience Framework Project report.