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Section Three: Recommendations for further research

There are a number of areas identified, primarily from the review of research, that merit further investigation. ³⁰ These are set out below for specific groups and further highlight the diversity of the unpaid caring population. However, there is also a general recommendation that good policy needs to continue to be based on good research in relation to unpaid carers.

Generally, there is a need for:

• Longitudinal research into the experience of caring. This is likely to include studies which take a 'life course' or 'cohort' approach (following a particular group or sub group over time) and which couple this with an emphasis on the effectiveness of range of interventions over time
• Research at the local level on referrals and assessments processes. In particular, whether inter-professional referrals are more likely to result in better access to services, better services or higher levels of provision, the use of single shared assessments and their impact on service provision, the experience of the carer and cared for.
• Research on how unpaid caring affects the employment relationship - perceptions of both employers and unpaid carers.
• Research on the links between volunteering and unpaid care:

We outline below recommendations for further research relating to specific groups.

Young carers

Confirming recent and more thorough research reviews, our review was not able to identify any randomised clinical trials ( RCTs), longitudinal studies, meta-analysis or systematic reviews of young carers. The existing research base is good on describing the characteristics, experiences and needs of what had been a hidden group of children; it is less developed on 'causes' and 'effects'. Why do some young carers experience educational problems, while most do not? Research is needed which focuses on resilience and how this might affect outcomes for young carers and their families, rather than just 'vulnerability'. ³²

'I missed school at times. I felt lost and on my own. When the kids I went to school with spoke about cartoons, I had no idea what they talked about. I felt nobody understood me. I didn't even feel comfortable talking to the doctors.' ( BME man caring for his mum since being a teenager, Edinburgh)

There are no UK-based studies of young carers caring for parents with HIV/ AIDS or those who misuse drugs or alcohol, or those living in asylum seeker/refugee families.

More research is needed which compares the experiences of different groups of children in need (including young carers) and contrasts these with a 'normative' group of peers.

'I used to find it hard and then my mum had to go into hospital and I had to take time off school, and I missed all of primary 5 and then I had to go to my Gran's and I missed all of what my teachers were teaching and I failed all my tests, but now I am back to credit classes.' (13 year old girl, caring for mother with depression, Irvine)

Research is needed into 'cycles of disadvantage': Is the health, well-being and development of young carers affected more adversely when they experience a clustering of negative outcomes or disadvantages?

More research is needed on evaluation and effectiveness: what really works for young carers and their families?

Research needs to tell us more about young carers and other vulnerable children who don't receive services and support, i.e. unsupported children. The quality of health and social work services is important in determining outcomes for children who receive them, but it does nothing for those children who don't.

Black and minority ethnic communities

The quantitative carer (and former carer) survey undertaken for this research was the largest ever undertaken in Scotland. However, the results for BME groups have to be treated with caution because of the relatively small sample size from these groups. Clearly this may have been a result of the fact that the survey was distributed with the assistance of carer organisations and either not enough of these were in touch with people from BME communities, or the response rate was lower for other reasons. In any case, there remains a significant gap in our understanding of the current experience and future aspirations and preferences of unpaid carers from BME communities in Scotland.

'They are not joining those groups because they can't speak English. Since they do not speak English, they do not know that there is a group there and even workers working with them who introduce these groups, they are very reluctant to join because if they were there, they can't communicate with other parents so there is no point them being there.' (Father caring for son with cerebral palsy, Edinburgh)

Lesbian and gay carers

Very little appears to be known about the experience of same sex carers. In the absence of suitably robust evidence from which to inform national policy for these groups, it is recommended that further research into the specific needs and care experiences of lesbian and gay unpaid carers be undertaken. This is not to suggest that their needs might be different but to highlight that they may face the additional barriers of a lack of legal recognition, prejudice and therefore risk greater social isolation and inappropriate services.

Wherever possible, further research should be conducted with a Scottish specific focus. It was a key finding that although a good body of Scottish specific research on unpaid care exists, there is a larger body of UK-wide literature, and we recommend this imbalance be addressed over time.

Some of the gaps identified by this research may have already been addressed within the Scottish Executive or elsewhere. However, it seems plausible that the Scottish Executive is best placed to co-ordinate efforts to commission, review, and update the evidence base relating to unpaid care. However, in our experience the best research is often undertaken in partnership with those agencies that are already in touch with carers. That was the experience of this research where many community, voluntary, and statutory organisations assisted the distribution of the large scale survey to approximately 25,000 carers, directly enabling a high response rate and raising the profile of the Scottish Executive's attention to this important policy area.

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