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

Author:
ROWE J.
Journal article citation:
Journal of Psychiatric and Mental Health Nursing, 19(1), February 2012, pp.70-82.
Publisher:
Blackwell Publishing

Thirteen studies set in the UK, all but one of which were qualitative, were selected for this systematic review. The studies provide insights into what professionals expect of family carers and what family carers themselves expect to do, although none of the studies were designed to address the questions directly. Another limitation was that only papers available free of charge were eligible for inclusion.

Extended abstract:
Author

ROWE J.;

Title

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 citation/publication details

Journal of Psychiatric and Mental Health Nursing, 19(1), February 2012, pp.70-82.

Summary

Thirteen studies set in the UK, all but one of which were qualitative, were selected for this systematic review. The studies provide insights into what professionals expect of family carers and what family carers themselves expect to do, although none of the studies were designed to address the questions directly. Another limitation was that only papers available free of charge were eligible for inclusion.    

Context

Data from the Office of National Statistics, 2002, indicate that over 1.5 million people in the UK care for a relative or friend with a mental health problem. However, despite the increased recognition of the role of informal carers, it remains for the role to be fully valued by mental health professionals. In addition, problems in the relationship between carers and professionals need to be addressed in order to allow ease of engagement. The aim of this systematic review was to ‘determine what professionals expected of family carers, and what family carers expected of themselves in respect of their relative’.

Methods

What sources were searched?
An initial search was conducted on the DARE database of systematic reviews using the terms ‘carer’ and ‘caregiver’; a number of articles were retrieved but there were none on informal carers for working age adults with mental health problems. Search terms were selected from a preliminary search on a wide selection of sources. The following electronic databases were then searched: AMED, ASSIA, BNI, CINAHL, PubMed, and the Cochrane library. The searches were conducted between 2 July and 31 July 2010.

What search terms/strategies were used?
Searches were carried out using the terms: family, caregiver, carer, mental health, mental illness, professional, and practitioner. Details of database specific search strategies are not included. Searches were limited to papers published from January 2005 onwards.

What criteria were used to decide on which studies to include?
Observational and quasi-experimental studies on any communication or relationship between mental health professionals and family caregivers of people of working age with a severe mental health disorder (such as schizophrenia or bipolar disorder, but not depression or anxiety) were eligible for inclusion. Outcomes could include ‘any expectation, relationship, description or definition of what family carers are expected to do or not do’. Studies were limited to those conducted in the UK, and published in English in a peer-reviewed journal. Only papers that were available in full, and free of charge, were selected as the review was not funded.

Who decided on their relevance and quality?
Article titles and abstracts were screened and potentially relevant studies were obtained in full for further examination. Quality assessment was carried out using the Basic Research Review Checklist suitable for use with qualitative and quantitative studies. Both processes were conducted by the sole author.

How many studies were included and where were they from?
A total of 3,467 papers underwent initial screening; 23 met the inclusion criteria but 6 papers were duplicates. Seventeen articles were examined in full, 13 of which were subsequently included in the review. All of the studies were conducted in the UK, as specified in the inclusion criteria.

How were the study findings combined?
Papers were analysed using a theoretical thematic analysis approach; planned outcomes were noted and key themes were identified and coded. The process was carried out by the author and checked by a colleague. The results are reported under the four identified themes: the distinct and personal nature of family caring, potentially effective family caring, barriers and hindrances to effective caring, and overcoming barriers and hindrances.

Findings of the review

Twelve of the included studies were qualitative and one used mixed methods. Studies focused mainly on one of the following: information sharing and confidentiality, carer experience, family involvement, and carer assessment. The distinct and personal nature of family caring is reported as wanting to be involved in a relative’s care and fulfilling a family duty to care; the resulting consequences of caring included the carer not being able to do what they wanted to do, financial hardship, and altered self-efficacy and impaired later coping.

Potentially effective family caring was reported in terms of a variety of obligations such as involvement in risk management, sharing information, and providing effective and safe care. Several examples of family carer effectiveness were reported in four studies.

A range of barriers and hindrances to effective caring were reported, including carers being discouraged from approaching services and difficulty in accessing services, being seen as troublemakers, or pushy and demanding, and the carer experience of being expected to cope. There were also issues with confidentiality and consent with ‘confidentiality smokescreens’ acting as a barrier to sharing information.

A number of studies addressed the need to overcome barriers and hindrances, for example by: taking account of carers rights and responsibilities, assisting and encouraging family support, including carers in treatment approaches, providing more informal communication with professionals, and training professionals to work with carers

Authors' conclusions

‘This review suggests there have only been slight improvements for family carers’ and that ‘caring for a relative with severe mental health problems is a distinct and unique experience that few people are prepared for, and that there were some obligations placed on family caregivers by themselves and mental health professionals’. Carers also had rights which can lead to effective care, but unmet expectations and situations where rights are not upheld can lead to barriers to effective care. Key objectives are to improve the quality of engagement and communication, and developing and maintaining relationships between professionals and family carers.

Implications for policy or practice

None are discussed.


Subject terms:
severe mental health problems, social worker-service user relationships, staff-user relationships, carers, families;
Content type:
systematic review
Link:
Journal home page
ISSN online:
1365-2850
ISSN print:
1351-0126

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