Tired of spinning plates: an exploration of the mental health experiences. Parent carer and sibling carer anonymised interviews

Background 

This research addresses the mental health of adults/older family carers of adults with learning disabilities. We investigated carers’ perceptions of their mental health and their views on the accessibility, quality, and effectiveness of support.

We delivered: (1) an expansive model of Public Involvement and Engagement; (2) an innovative participatory approach using creative methods to generate stories of care and mental health; (3) a public engagement and dissemination strategy that raises wider awareness of the mental health of family carers and (4) the development of learning and teaching resources for general practitioners who support family carers’ mental health.

Design and Methods

The research involved seven work packages (WPs).

WP 1:   The Tea and Cake Group (6 family carers and 4 people with learning disabilities) contributed to design, delivery, and analysis of each WP. 

WP 2: A rapid scoping review of evidence about family carers’ mental health and the support available. 

WP 3: The plan to co-produce a survey was rejected by family carers in favour of an online exhibition about carers’ mental health. 

WP 4: 28 online, in-depth interviews with 11 parent carers, 16 sibling carers and 1 partner of people with learning disabilities. 

WP 5: Online and in person digital storytelling workshops generated 9 parent-carer films, 4 sibling-carer films and 3 films made by people with learning disabilities and one compilation film made by 5 members of the Roma, Gypsy, and Traveller community.

WP 6: A series of discussions to discuss findings with key stakeholders. 

WP 7: Learning and teaching materials were created for GP surgeries.

Results 

Caregiving, driven by love, is often exploited by health and social care services which deny basic support, information, and kindness.

Family carers’ struggle for services and support, over decades, is often the primary cause of mental distress. This is worsened by worrying about what will happen when they can no longer care. 

Family carers know what supports mental well-being but have little time to look after themselves.  They do not have the support needed to take a break. They describe social services as ‘hostile’, ‘unhelpful’ or ‘totally absent’ in their lives.

Many family carers see themselves as exhausted by struggling for services and support rather than depressed or anxious. Medication can help but is often offered without consideration of their caring role and/or because there is no access to alternatives. 

Family carers are asking for their statutory entitlements for social care support to be met, and to be offered reasonable adjustments around health and social care.  They would like kindness practised in health and social services, saying even ‘feeble’ acts of kindness matter. 

Outputs and dissemination

We have published journal articles, blogs, magazine articles and films and presented findings at inter/national conferences.

The Spinning Plates online exhibition is available here: https://carermhspinningpla.wixsite.com/spinplatesexhibition

Public and stakeholder involvement and engagement

Members of the public, family carers and people with learning disabilities were involved in each stage of the study. The Study Steering Group included family carers.

Ethical approval was sought, and subsequent amendments submitted for research by the lead university for the work package. Approvals were granted on 01/08/2022 by The University of Sheffield UREC 4058.  The following amendments were approved: Amendment approved: 20/05/2024 Amendment approved: 07/12/2023 Amendment approved: 06/11/2023 Amendment approved: 04/05/2023.