Last week Dr Gemma Unwin spoke at the Learning Disability Workshop Series run by the Social Care Workforce Research Unit and Making Research Count here at King’s. Dr Unwin and her University of Birmingham colleagues have recently completed a project that involved talking to adults with learning disabilities from minority ethnic groups in order to investigate their experiences of using social care support services. Here she introduces the study and discusses the findings. (778 words)

What we did

Thirty-two adults with mild to moderate learning disabilities from different minority ethnic groups in the West Midlands were interviewed about their understanding of ‘support’, their level of involvement with and experiences of services, their views of the support they needed, and the support they received, and the ways in which this met their goals and priorities. Interviews were sensitive to the cultural context of people’s relationship with services, using a ‘Culturegram’ or talking tool developed to help participants talk about the cultural aspects of their identities in their everyday lives.

Why we did this

Previous research in the UK has indicated that people with learning disabilities from minority ethnic groups do not access the support services they are entitled to and tend to be less satisfied with services. Past research with families shows they can be frustrated and angered by the experience of having to ‘fight’ to access services for their relative, and that many are disappointed by some of the services they receive. Few studies have collected data from adults with learning disabilities themselves. This does not, however, negate the importance of providing better support to families.

What we found

Many social care services are not only acceptable, but greatly appreciated. Service users were mainly content with services, but did not make this appraisal in the context of having to ‘fight’ for them (as their families might have done). Instead they were very grateful for what they received and, for the most part, were keen not to be overly critical of services. Some had previously lost support, due to cuts to services, and this could be distressing.

Relationships with paid care workers and support workers were often a very important and meaningful part of a person’s interpersonal life. When asked about services, participants talked about their relationship to their support workers, most describing positive connections with workers. Some expressed distress at changes in their continuity of care, due to service cuts. When they did talk about organisations this was in relation to previous support.

Good support meant having a good relationship with the support workers. The competence and reliability of the worker were the key components of a ‘good service’. Continuity of care was important because it was about the maintenance of positive relationships, as well as access to activities.

‘Independence’ meant different things to different people (in different contexts). For some, it was a long-term goal and there was a clear pathway to it. It could mean ‘living independently’ with little or no support from services, or it could be more abstract, ‘being able to do what you want, when you want’. For others, it was a process representing an aspect of personal development. Increased independence was to be achieved through learning specific skills, such as travelling without support, budgeting or managing the home. Services were perceived as playing a key role in supporting independence.

The term ‘minority ethnic group’ is complex and not well captured by demographic categories or cultural stereotypes. Participants understood their cultural identities in complex ways. Some held ‘mono-culturally consistent’ positions on issues such as religion, diet and family; others drew upon multi-cultural frameworks. They had very few complaints about the cultural appropriateness of the services they received—this was not the critical issue for deciding whether a service was good. They were generally keen to emphasise that staff tried to treat all service users fairly and with respect.

Conclusion

Our study provides important insights into the ways that individuals with learning disabilities view their cultural identity, relationships, support, and independence. The practical resources we produced (available at: www.ToolsforTalking.co.uk) can inform service provision, by emphasising the importance of sensitive planning regarding any changes to services, the importance of mutual understanding and good communication in relation to personal and cultural needs, and the importance of continuity of care and a relational perspective on service development. It should be remembered that we undertook this study during a time of severe cuts in services, and in this context service users may have been keen to communicate that their services were greatly valued.

Key Messages from the project

• The term ‘minority ethnic group’ conceals complex identities, commitments, interests and needs, which are not well captured by demographic categories or cultural stereotypes.
• ‘Independence’ means different things to different people (in different personal, family and cultural contexts).
• When support is good, positive relationships are a key part. Relationships with paid carers and support workers can be a very important and meaningful aspect of a person’s interpersonal life.
• Many of the services which are available are not only acceptable, but also greatly appreciated by people with learning disabilities from minority ethnic groups.

Dr. Gemma L. Unwin is Research Fellow at the School of Psychology, University of Birmingham, G.L.Unwin@bham.ac.uk, and lead researcher on this project: People with learning disabilities from black and minority groups: An exploration of their experiences and views of services. The other members of the research team are: Michael Larkin (Principal Investigator), Biza Stenfert Kroese and John Rose.

The study was funded by the NIHR School for Social Care Research (the views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR, Department of Health or the NHS).

Learning Disability Workshop Series at King’s College London