'Tired of spinning plates': Synopsis of mixed methods exploration of mental health experiences of adult/older carers of adults with learning disabilities.

Family carers of adults with learning disabilities described social services as 'hostile' or absent, and viewed themselves as exhausted by the lack of support rather than depressed.

• Participants did not primarily frame their distress in clinical terms such as depression, but rather attributed it to systemic failures in support provision.
• Social care services were characterised as 'hostile' by participants.
• The framing of mental distress was linked to structural causes rather than individual psychological conditions.
• This finding emerged across multiple work packages including interviews with parent and sibling carers and digital storytelling workshops.

Enduring struggle for support and worries about the future were identified as primary causes of mental distress among family carers.

• Carers described long-term, ongoing battles to obtain services and support spanning years.
• Anxiety about future care arrangements — what would happen to the person with learning disabilities when the carer can no longer provide care — was a major source of stress.
• The struggle for support itself, rather than the caring relationship, was identified as the driver of mental health difficulties.
• This was consistent across interview data and digital storytelling outputs.

Medication was reported to be offered to carers without adequate consideration of their caring role or because no alternative support was available.

• Carers reported that medication could help but was sometimes prescribed without recognition of the caring context.
• Medication was described as being offered in the absence of alternatives rather than as part of a holistic support plan.
• Participants indicated that some mental health treatments did not work for them given the demands of their caring responsibilities.
• This finding highlights a gap between standard mental health treatment pathways and the specific circumstances of family carers.

Participants reported knowing what supports their mental well-being but having little time to engage in self-care due to insufficient external support.

• Carers identified activities such as walking, reading, and meeting with friends as beneficial but inaccessible.
• The absence of care replacement — someone to care in their place — was cited as the key barrier to self-care.
• Carers were unable to use care replacement costs provided by the study because of a lack of alternative care options available.
• This finding points to a practical gap between awareness of self-care strategies and the ability to implement them.

Small acts of kindness from health and social care providers were reported to have a significant positive impact on the well-being of family carers.

• Participants stated that 'even the feeblest acts of kindness make a difference in health and care delivery.'
• Carers asked for their statutory entitlements to be met 'with kindness' as a key request.
• The importance of kindness was emphasised across multiple data sources including interviews and digital stories.
• This finding was considered significant enough to inform the development of general practitioner resources as a study output.

Health and care services often fail to recognise or adjust support for family carers despite legal provisions under the Equality Act and the Care Act.

• Provisions in The Care Act and The Equalities Act were reported as not always upheld in practice.
• The study calls for robust monitoring of compliance with legislative frameworks to ensure entitlements are met.
• Family carers were found to struggle to gain support over years despite statutory rights.
• The research recommends policy-makers and practitioners review and develop monitoring of provisions set out in legislation.

The role of love in caring relationships is largely absent from research, and this love is exploited by service systems that rely heavily on family carers.

• The study highlighted that caregiving is driven by love, yet this love is exploited by health and social care services that deny basic support, information and kindness.
• The absence of consideration of love in caring relationships was identified as a gap in existing research literature.
• There are approximately 1.5 million people with learning disabilities in the United Kingdom, many of whom continue to live with or receive care from family members.
• The exploitation dynamic was identified across the rapid scoping review and qualitative data from carers.

The study identified challenges in involving marginalised communities and engaged with fewer respondents through the online exhibition than originally planned.

• Recruitment was slower than expected across the study.
• The online exhibition engaged fewer respondents than the planned survey format would have.
• The research team chose to respond to participants' preferences, which influenced the format of engagement.
• Challenges involving marginalised communities were noted as a limitation, and the experiences of LGBTQI+ family carers and carers of autistic adults without learning disabilities were identified as areas requiring further exploration.

The study employed a mixed methods design across seven work packages using participatory and creative methodologies.

• The seven work packages included: public involvement, a rapid scoping review, an online exhibition, interviews with parent and sibling carers, digital storytelling workshops, key stakeholder discussions, and creation of learning and teaching materials.
• Digital storytelling workshops were used to generate stories of care from participants' perspectives.
• Family carers and people with learning disabilities were involved across the study and in the Study Steering Group.
• The study was funded by NIHR Health and Social Care Delivery Research programme, award number NIHR135080.
• Outputs included journal articles, blogs, magazine articles, an online exhibition, films, and presentations at international conferences.