Caregiver experiences: 10 new stories of recovery and wellbeing

18th September 2013

Our Director, Simon Bradstreet, introduces a new resource that explores the experiences and views of mental health caregivers.

We are delighted to announce the publication of a new resource about the experiences of caregivers and their views on wellbeing and recovery. ‘Voicing Caregivers Experiences’ was developed through a partnership between the Scottish Recovery Network (SRN) and Sussex Partnership NHS Foundation Trust. A book produced through the project features ten narrative accounts of people with experience of caring for someone living with mental health problems, focussing on their perspectives of recovery and wellbeing.

Early discussions

Quote graphicInitial discussions I had in 2010 with Ruth Chandler from the Sussex Trust and her colleague Mark Hayward [1] suggested a shared interest in the experiences of carers and their role in the recovery movement. At the time we noted that while there was significant work both in relation to the experiences of carers as well as an ever increasing focus on recovery and its implications, there was very little work which joined the two domains – each tended to be considered in isolation.

SRN’s previous work in this area, led by Dr. Hester Parr, had suggested that while recovery could be a particularly complex concept when considered in the context of close family relationships there was a great deal of interest and certainly a need for more investigation. Another common interest between the partners leading this project was a commitment to narrative approaches and the valuing of lived experiences as a powerful means of leading improvement and change. In Sussex, Ruth and Mark had developed an approach to better understanding experiences of psychosis that led to the publication of ‘Voicing Psychotic Experiences’. We agreed to mirror the highly participative method developed in that project for this new endeavour.

How we developed the project

Quote graphicWe agreed to feature narrative contributions from ten people for this publication, five in Scotland and five in Sussex. The process of identifying contributors in Scotland was aided by Support in Mind Scotland and the Glasgow Association for Mental Health (GAMH). We convened contributors’ meetings to agree our aims and to oversee the development of the project. We also offered support for contributors to develop their narratives. One of our early discussions was around the use of language. There is no ideal word to use when describing people who find themselves in an informal caring role for someone who is experiencing mental health problems. With agreement of the contributors, we opted for ‘caregivers’ in recognition of the gift that people who find themselves in this situation offer. At a second meeting of contributors in Scotland, towards the end of the project, we also shifted the focus of the publication to include a clearer emphasis on wellbeing, which came out of the narratives as a key theme, and to include the training and learning focus of the final book with new participative activities.

Sharing experiences and emotions

The experiences shared in the narratives are at times harrowing but significantly underpinned by resilience and hope. Hope is in fact a strong theme throughout the ten narratives both by its presence and absence. Indeed as editors we felt it was important enough a theme in the experiences shared that it warranted its own ‘pause for thought’ section.

Quote graphicOne thing that strikes me about the book is that it is in no way a polished piece of promotion for the recovery movement. For some people recovery, either for themselves or for the person they care for, is a distant concept. One of the contributors directly addressed this point in her narrative title: ‘Recovery or simply acceptance?’ This is not though universal, with other contributors describing how recovery approaches have become an important part of their lives, offering new perspectives and tools for wellness.

Some of the experiences shared are testament to just how bad many carers’ experiences of the mental health system are, with repeated references to being dismissed, excluded or not taken seriously by service providers. In most instances we appear to be some way from the aspired-to ‘triangle of care’ where services, service users and informal carers all have a clear and understood role in supporting recovery where appropriate and desired. What we do have though are clear signs of where we should focus improvement efforts and good evidence that recovery approaches, and other opportunities for structured learning and reflection, have much to offer caregivers. For example, a common theme is the centrality of getting the initial contact right and of early intervention – helping caregivers see and understand their role and potential contribution for recovery. Within this there is recognition of the potential for carers’ own sense of self and identity to become intertwined with that of the person they care for. Contributors described the importance of self-care, learning and mutual support as powerful supports.

I commented in my personal reflection of the process that anyone reading the narratives could not fail to be acutely aware of the intensity and enormity of experiences being described and that it would be no exaggeration to say that some of the experiences being described are at the extremes of human experience. Within the accounts there is an enormous breadth of emotion from the depths of despair, hopelessness and loss to remarkable resourcefulness, tenacity, resilience and humour. In fact many of those involved found the experience of writing about life as a carer, in some cases for the first time, to be a deeply affecting process. As editors we were similarly taken aback by the emotional impact of our involvement and how much the process had made us question and reflect.

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Next steps

Quote graphicThis publication is timely coinciding as it does with a new Scottish Government strategic commitment to work more effectively with family members and carers. The need for this new drive has also been emphasised by information gathered through mental health services’ use of the SRI 2 tool which suggests there should be concern about the extent to which informal carers are routinely involved. We are determined to spread the learning from this project as widely as possible and in addition to widely distributing the book are now considering options on how to further share the learning from this project.

Notes

[1] Ruth Chandler, Service User and Carer Involvement Co-ordinator and Mark Hayward, Research and Development Director

If you are based in Scotland and would like a free copy of Voicing Caregivers Experiences then contact us or download the publication at the links below.

Voicing Caregiver Experiences: Wellbeing and Recovery Narratives for Caregivers (1.48 MB) (Full report)

Contents, acknowledgements, terminology, about this project, chapter summaries (829 kB)

What does recovery mean to me? (Chapter 1) (597 kB)

Recovery … a strange word for me (Chapter 2) (576 kB)

The silver lining (Chapter 3) (612 kB)

So you love someone with a mental illness? (Chapter 4) (598 kB)

My story … so far (Chapter 5) (592 kB)

Love is the first ingredient (Chapter 6) (610 kB)

Pause for thought (Chapter 7) (689 kB)

Every pebble counts (Chapter 8) (619 kB)

Recovery – or simply acceptance? (Chapter 9) (617 kB)

I wish I could go back and give myself a hug (Chapter 10) (635 kB)

Hearing the music and remembering to dance (Chapter 11) (605 kB)

Recovery together (Chapter 12) (595 kB)

Making sense of it all (Chapter 13) (1.01 MB)

References and useful resources (971 kB)