Relationships between professionals and the people in their care are fundamental to mental health practice. When care was largely given in institutional settings, these relationships needed to be primarily between professionals and patients, but modern service provision is increasingly focused on community settings, where half of mental health care now takes place. You can read more about this in an article published by Professor Wai Tong Chien and others.
According to the Office for National Statistics there are 1.5 million people caring for a relative or friend with a mental health problem or dementia. It is now not enough for relationships to be only between professionals and patients; they need to be built and maintained across a wider range of individual boundaries, with an increasing emphasis on the role of family caregivers in supporting recovery for people in mental distress. In particular, more responsibility for psychosocial care has been placed on family carers. Indeed, David Jones, an academic who carried out 40 in-depth interviews with informal carers, implied that following the accelerated move from institutional to community-based care in the 1980s there was an expectation that families would fill the care vacuum.
What about the family’s rights?
In this context then, how can mental health professionals provide care that balances the rights of the family with those of the service user? I applied the principles outlined by Professor Jacques P. Thiroux in 2005 as a conceptual framework to explore professionals’ relationship with family carers. These basic principles are found in many ethical systems and can be applied within the context of mental health care.
- The value of life: Family carers should also have their life and the value of that life respected, not just be treated as a means to care for their relative.
- Goodness or rightness: In promoting goodness, consideration should be given to what is good for family carers. Keeping them informed about care decisions is good, as not to do so could potentially expose them to psychological and emotional distress.
- Truth-telling or honesty: In any relationship, truth-telling or honesty is vital to meaningful communication. Good relationships are based on mutual trust, and communication should be as open and honest as possible.
- Justice or fairness: Fair practice means that people share equal opportunities. Depriving families of key information denies them the opportunity to be involved in care planning and decision making on issues that can have profound implications for them.
- Individual freedom: In its narrow sense individual freedom or autonomy is about being in control of oneself, and independence; but if health care ethics is about people and the relationships between them, then there are limitations to individual freedom. These limitations should be established by the other four principles discussed above.
Relationships and engagement
Despite initiatives and legislation, more can be done to improve the experience of family carers. Caring for a relative with severe mental health problems is a distinct and unique experience and a steep learning curve for which few people are prepared. The relationship and engagement between families and professionals is therefore of great importance.
When I conducted a systematic literature review on the relationship and engagement between families and mental health professionals, I identified four key themes:
- The distinct and personal nature of family caring. Carers in mental health had different needs to carers of relatives with physical health problems.
- Potentially effective family caring. This can be summarised as being involved, included and a source of expert knowledge.
- Barriers and hindrances to effective caring. These included: being seen as part of the problem, being taken for granted and isolated. Carers have been trapped in the confines of their caring role and expected to cope.
- Ways to overcome barriers and hindrances. Barriers to effective care that involves family carers can be overcome by taking account of family carers’ rights and responsibilities. This means listening to and taking seriously what they have to say. Providing timely support and assistance demonstrates to families that their responsibilities are recognised, and that they have a valued part to play in decision-making and treatment approaches. It would also be to their advantage to learn more about mental health and highlight any cultural diversity elements to professionals.
In essence barriers can be overcome through good practice by professionals and by carers making use of their strengths. Mutual obligations which drive improvements in relationships and engagement between families and services have been proposed as a covenant between mental health services and family carers.
A covenantal relationship
A covenantal relationship would clarify what professionals expect of family carers. Good faith and fair dealing are central for this to work. Family carers’ good faith can be demonstrated through involvement in their relative’s care, helping with recovery plans and accepting that they do not need to know everything about their relative.
Mental health services might reciprocate through fair dealing: being empathetic, promoting engagement and co-operative relationships, and recognising the difficulties that might arise for families. However, a covenant between families and services would mean adopting carer-centred practice.
Towards carer-centred practice
Key characteristics of carer-centred practice emerge from overcoming barriers and achieving effective relationships and engagement with family carers. This is possible by:
- Being carer aware and identifying family carers as soon as possible.
- Developing relationships with carers to work in partnership with them.
- Resisting assumptions that carers and service users have shared interests and needs.
- Encouraging family support in the care of their relative at a formal level, for instance in treatment approaches or attending review meetings, and less formally such as by being including in research design.
- Making use of family carer expertise.
Carer-centred practice is a recognised priority for research that builds on relational practice. It complements care given to service users and is not an alternative competitive demand on services. However, primarily, carer-centred practice recognises that mental health care is a family affair.
- Chien, W.T., Chan, S., Morrissey, J. et al (2005) ‘Effectiveness of a mutual support group for families of patients with schizophrenia’, Journal of Advanced Nursing, 51, pp.595-608.
- Jones, D.W. (2001) ‘Myths, Madness and the Family: The Impact of Mental Illness on Families’, Palgrave, Basingstoke.
- Rowe, J. (2010) ‘Information disclosure to family caregivers: Applying Thiroux’s framework’, Nursing Ethics, 17 (4), pp.435-444.
- Rowe, J. (2012a) ‘Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals’, Journal of Psychiatric and Mental Health Nursing, 19, pp.70-82.
- Rowe, J. (2012b) ‘A covenant between mental health services and family carers’, Mental Health Practice, 16 (2), pp.22-23.
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Interesting article and raises concerns of the role of carers and how best to support them and integrate in their reponsibilties as a carer. I am a carer for my father who has bi- polar and cardiovascular dementa problems. Ive supported him for over twenty years and its only because I have had a mental health problem that I understand his problems. However looking after relative is very stressful and their is poor support for people and resources and very isolating issues for many people who care for relatives. This must not underestimate the emotional strain of looking after someone a big problem for many people.It needs a big commitment for the government to realise how they fail many carers who are not getting the help they need. Its alright having the known research of the problems but action is needed otherwise this country will have more issues with people coping with a loved one. The government are not doing enough and resources are being cut at the same time plenty of research already done. Lets see if this country will ever accept the burden carers do have. Lets all accept we all need to see better services for carers.
I enjoyed this article. As a manager/clinician it is good to find evidence to back up my thoughts about the central importance of carers in maintaining people with MH problems in the community. I can use this in supervision to guide new staff and support those experiencing frustration. I will also be following up the links in the article.We will be experiencing interesting times as our bed numbers are reduced further, to 12 for Dementia care accross the whole of our county, yet we have not considered as a trust the impact on our often very frail carers, nor as yet put any more support into our care homes. Cue a government enquiry as our death rates go up. In our team we already care for parents with Dementia and their children who have selfharmed through stress. (I hasten to add they were not known to us before the events - which gives a whole different importance to early gp referral) Thanks again.