Professionals must be aware of carers’ need for support when their relative has to go into a special unit. Clear communication and continued involvement of carers could prevent them feeling disempowered and devalued. Neil James reports on the findings of a research project
Background
The growing recognition of the additional health needs of men and women with learning disabilities puts responsibility on all services to assess and plan care to meet these needs and those of their carers. Carers often have to cope with mental health and behavioural distress and this can be compounded when their relative is admitted to a learning disability specific in-patient setting or an Assessment and Treatment Unit. However, there is extremely limited research exploring the experiences of family carers and professionals at this difficult time.
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Findings
For carers the admission of their relative to a specialist in-patient setting had a significant influence on the way in which they viewed and understood their sense of self and identity. The experience was particularly affected by the relationships they had with professionals when negotiating the additional needs of their relative.
Carers experienced high levels of anxiety, stress and uncertainty about the future of their relative and their role as carer. Some felt they lost influence over their relationship with their relative as they became subject to the control of professionals. They felt disempowered and devalued.
Professionals were shown to have a pivotal role in influencing how carers viewed their sense of self, value and importance. Carers reported valuing support from professionals who were accessible and facilitated relationships based on honesty and trust. Furthermore, having their views and opinions valued by professionals made them feel valued as carers.
Professionals did understand that their relationships with carers had an important influence on the value carers felt they had in the on-going care and support of their relative. They also appreciated that they can influence the way in which carers cope with the changes happening in their relative’s support needs. However, in practice, this was recognised as not always being translated into supportive action. Shortage of time and the availability of practical and financial resources presented barriers to supporting and involving carers.
Effective communication – being open and honest – was thought most important in supporting carers. This is essential if trusting and understanding relationships with an appreciation of each other’s perspectives are to develop. Effective communication includes ensuring that carers are provided with information that promotes their sense of involvement in decisions about care. Crucially for professionals this involved recognising the expertise and knowledge carers bring to support care planning. Rather than professionals assuming control, a shared approach to planning and decision-making was important.
Clear communication and continued involvement of carers could prevent them feeling disempowered and devalued.
Consistent support for carers can also be improved by professionals and services working together.
An important influence on the quality of support carers receive is the attitude practitioners bring to their roles. Attitudes and working practices which do not support carers need to be questioned and changed.
Study: Family carers’ experience of the admission of their relative to an Assessment and Treatment Unit
Aim: This study aimed to explore family carers’ experience of the admission of their relative to an Assessment and Treatment Unit
Methods: This was a two-stage qualitative study. In stage one the lived experience of six family members, three mothers and three fathers, was explored using semi-structured interviews. The second stage involved interviewing nine professionals in learning disability specific services, using individual interviews and a focus group.
Conclusions
To ensure carers feel involved they need to be given information and recognition for their expertise and knowledge. A shared approach to care planning and decision-making are important so that carers do not feel disempowered and devalued.
Professionals not only need to provide information to carers they also need to be pro-active in planning and facilitating their involvement. The attitude of practitioners can have a significant influence on relationships with carers. Values and attitudes which have a negative impact on carer support need to be challenged and addressed by improving understanding of carers’ needs.
The actions and behaviours of professionals have a significant role in shaping carers’ views of themselves and their identity.
Key Messages
- The need for admission to an in-patient setting is a time of distress, uncertainty and confusion for carers.
- Carers’ relationships with professionals have a pivotal role in influencing their sense of value and identity.
- The involvement of carers in decision-making and care planning processes needs to be facilitated by professionals.
- Relationships between carers and professionals need to be underpinned by openness and honesty.
References and further reading
James, N. (2011) Working with families, in Atherton, H. and Crickmore, D. (Eds) Learning Disability: Towards Inclusion (6th Ed.), Chapter 22, Elsevier Ltd, London.
James, N. (2013) Enhancing relationships between family carers and professionals, Learning Disability Practice 16(6): 34-37.
Neil James is Senior Lecturer
Unit for Development in Intellectual Disability, University of South Wales.
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