NIHR Signal Education and support groups help carers of people with severe mental illness

Published on 27 August 2015

This systematic review found that carer-focused interventions can improve the experience of caring, carer quality of life and reduce psychological distress in those caring for people with severe mental illness in the community. Psychoeducationand support group style interventions delivered by health and social care services led to improvements in carer outcomes such as how positively they rated their experience of caregiving. Current guidelines in the UK suggest that interventions for carers should be considered as part of integrated mental health services.

Informal community based care is central to the care of many people with severe mental illness, but the support needs of their carers are often not met. This systematic review was the first to address this issue. The review could not compare directly different forms of support or comment on cost-effectiveness. This evidence was considered in the 2014 updates of NICE guidelines on psychosis and schizophrenia (CG 178), and bipolardisorder (CG 185).

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Why was this study needed?

Severe mental illnesses are relatively common, with both schizophrenia and bipolar affective disorder occurring during the lifetime of about one in every 100 people in the UK.

In the UK, almost half of those caring informally for people with schizophrenia spend over 32 hours per week. Caring can be a positive experience but it can also have negative consequences, such as loss of the ability to work, financial difficulties and stress. Mental health services tend to focus on the person with mental illness, but it has been established that the impact of a carer’s ability to cope is an important element in their recovery. This review aimed to investigate carer-focused interventions with the primary goal of improving carer experience and reducing carer burden. It is a reasonable assumption that improving carers’ ability to cope also enhances the quality of life for people with schizophrenia.

What did this study do?

This was a systematic review of randomised controlled trials (RCTs) evaluating interventions delivered by health and social care services to the carers of people with severe mental illness such as psychosis, schizophrenia and bipolar disorder. These interventions included psychoeducation, support groups, combined psychoeducation and support groups, self-management and problem-solving bibliotherapy - therapeutic use of the written word. Due to the nature of the interventions it was not possible to ensure that the trial participants or trial personnel were unaware of which people were given which intervention. Therefore all studies were at high risk of bias, which could exaggerate the effectiveness of the interventions.

This review used robust methodology to identify relevant trials and assess their quality. Twenty-one RCTs, including 1,589 carers, were selected for the systematic review, 20 were included in the meta-analysis. Four of the RCTs were based in the UK.

What did it find?

  • Evidence from eight studies (428 carers) found that psychoeducation improved the experience of caregiving more than usual care (standard mean difference (SMD) ‑1.03; 95% confidence interval (CI) -1.69 to -0.32). These effects were maintained at more than six-month follow-up. Some underlying trials were assessed as being of very low quality as there was a risk of bias from lack of blinding and selective reporting.
  • Evidence from three studies (194 carers) showed that support groups greatly improved the experience of caring at the end of the intervention, compared with usual care (SMD -1.16; 95% CI -1.96 to -0.36). There was a moderate effect up to six months, but it was no longer significant at more than six-month follow up. Some underlying trials here were also assessed as very low quality.
  • The other interventions were evaluated in single studies, often with a small number of carers.
  • Despite the shortcomings of the evidence this review suggests that psychosocial interventions aimed at helping carers can improve their experience of caregiving, carer quality of life and decrease carer burden and psychological distress. However, this review did not provide conclusive evidence of which type of intervention was best. 

What does current guidance say on this issue?

This review was conducted as part of the evidence review for the 2014 update of the NICE guideline on psychosis and schizophrenia (CG178).

This guideline reviewed the qualitative and quantitative literature on carer-focused interventions and stated that it was evident that carers require support, education and information. The NICE guidelines on psychosis and schizophrenia guideline (CG178) and on bipolar disorder (CG185) recommend that carers should be offered an assessment of their own needs provided by mental health services. If any needs are identified a care plan should be developed and shared with their GP. The guidelines also recommend providing accessible information about the mental condition as well as offering a carer-focused education and support programme as early as possible to all carers.

What are the implications?

This review highlighted the importance of assessing the experience of caregiving, levels of burden, and psychological distress in people caring for someone with severe mental illness. If carer assessment suggests the carer needs help, interventions specifically aimed at the carer should be provided as part of integrated mental health care services.

This systematic review did not find strong enough evidence to suggest which interventions are best, although very low quality evidence suggested psychoeducation and support group style interventions might work.

Only four studies were conducted in the UK, but the results were consistent across countries, so they are still relevant to the UK.

Citation

Yesufu-Udechuku A, Harrison B, Mayo-Wilson E, et al. Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. Br J Psychiatry. 2015 Apr;206(4):268-74.

Bibliography

Andrew A, Knapp M, McCrone  P, et al. Effective Interventions in schizophrenia: the economic case. London: Personal Social Services Research Unit, London School of Economics and Political Science; 2012.

Kirkbride JB, Errazuriz A, Croudace TJ, et al. Incidence of schizophrenia and other psychoses in England, 1950-2009: a systematic review and meta-analyses. PLoS One. 2012;7(3):e31660.

Mangalore R, Knapp M. Cost of schizophrenia in England. J Ment Health Policy Econ. 2007;10(1):23-41.

NICE. Psychosis and schizophrenia in adults: treatment and management. CG178. London: National Institute for Health and Care Excellence; 2014.

NICE. Bipolar disorder: the assessment and management of bipolar disorder in adults, children and young people in primary and secondary care. CG185. London: National Institute for Health and Care Excellence; 2014.

Roick C, Heider D, Bebbington PE, et al. Burden on caregivers of people with schizophrenia: comparison between Germany and Britain. Br J Psychiatry. 2007;190:333-8.

Royal College of Psychiatrists. Schizophrenia: key facts. London: Royal College of Psychiatrists; 2014.

Royal College of Psychiatrists. Bipolar disorder: key facts.  London: Royal College of Psychiatrists; 2015.

Why was this study needed?

Severe mental illnesses are relatively common, with both schizophrenia and bipolar affective disorder occurring during the lifetime of about one in every 100 people in the UK.

In the UK, almost half of those caring informally for people with schizophrenia spend over 32 hours per week. Caring can be a positive experience but it can also have negative consequences, such as loss of the ability to work, financial difficulties and stress. Mental health services tend to focus on the person with mental illness, but it has been established that the impact of a carer’s ability to cope is an important element in their recovery. This review aimed to investigate carer-focused interventions with the primary goal of improving carer experience and reducing carer burden. It is a reasonable assumption that improving carers’ ability to cope also enhances the quality of life for people with schizophrenia.

What did this study do?

This was a systematic review of randomised controlled trials (RCTs) evaluating interventions delivered by health and social care services to the carers of people with severe mental illness such as psychosis, schizophrenia and bipolar disorder. These interventions included psychoeducation, support groups, combined psychoeducation and support groups, self-management and problem-solving bibliotherapy - therapeutic use of the written word. Due to the nature of the interventions it was not possible to ensure that the trial participants or trial personnel were unaware of which people were given which intervention. Therefore all studies were at high risk of bias, which could exaggerate the effectiveness of the interventions.

This review used robust methodology to identify relevant trials and assess their quality. Twenty-one RCTs, including 1,589 carers, were selected for the systematic review, 20 were included in the meta-analysis. Four of the RCTs were based in the UK.

What did it find?

  • Evidence from eight studies (428 carers) found that psychoeducation improved the experience of caregiving more than usual care (standard mean difference (SMD) ‑1.03; 95% confidence interval (CI) -1.69 to -0.32). These effects were maintained at more than six-month follow-up. Some underlying trials were assessed as being of very low quality as there was a risk of bias from lack of blinding and selective reporting.
  • Evidence from three studies (194 carers) showed that support groups greatly improved the experience of caring at the end of the intervention, compared with usual care (SMD -1.16; 95% CI -1.96 to -0.36). There was a moderate effect up to six months, but it was no longer significant at more than six-month follow up. Some underlying trials here were also assessed as very low quality.
  • The other interventions were evaluated in single studies, often with a small number of carers.
  • Despite the shortcomings of the evidence this review suggests that psychosocial interventions aimed at helping carers can improve their experience of caregiving, carer quality of life and decrease carer burden and psychological distress. However, this review did not provide conclusive evidence of which type of intervention was best. 

What does current guidance say on this issue?

This review was conducted as part of the evidence review for the 2014 update of the NICE guideline on psychosis and schizophrenia (CG178).

This guideline reviewed the qualitative and quantitative literature on carer-focused interventions and stated that it was evident that carers require support, education and information. The NICE guidelines on psychosis and schizophrenia guideline (CG178) and on bipolar disorder (CG185) recommend that carers should be offered an assessment of their own needs provided by mental health services. If any needs are identified a care plan should be developed and shared with their GP. The guidelines also recommend providing accessible information about the mental condition as well as offering a carer-focused education and support programme as early as possible to all carers.

What are the implications?

This review highlighted the importance of assessing the experience of caregiving, levels of burden, and psychological distress in people caring for someone with severe mental illness. If carer assessment suggests the carer needs help, interventions specifically aimed at the carer should be provided as part of integrated mental health care services.

This systematic review did not find strong enough evidence to suggest which interventions are best, although very low quality evidence suggested psychoeducation and support group style interventions might work.

Only four studies were conducted in the UK, but the results were consistent across countries, so they are still relevant to the UK.

Citation

Yesufu-Udechuku A, Harrison B, Mayo-Wilson E, et al. Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. Br J Psychiatry. 2015 Apr;206(4):268-74.

Bibliography

Andrew A, Knapp M, McCrone  P, et al. Effective Interventions in schizophrenia: the economic case. London: Personal Social Services Research Unit, London School of Economics and Political Science; 2012.

Kirkbride JB, Errazuriz A, Croudace TJ, et al. Incidence of schizophrenia and other psychoses in England, 1950-2009: a systematic review and meta-analyses. PLoS One. 2012;7(3):e31660.

Mangalore R, Knapp M. Cost of schizophrenia in England. J Ment Health Policy Econ. 2007;10(1):23-41.

NICE. Psychosis and schizophrenia in adults: treatment and management. CG178. London: National Institute for Health and Care Excellence; 2014.

NICE. Bipolar disorder: the assessment and management of bipolar disorder in adults, children and young people in primary and secondary care. CG185. London: National Institute for Health and Care Excellence; 2014.

Roick C, Heider D, Bebbington PE, et al. Burden on caregivers of people with schizophrenia: comparison between Germany and Britain. Br J Psychiatry. 2007;190:333-8.

Royal College of Psychiatrists. Schizophrenia: key facts. London: Royal College of Psychiatrists; 2014.

Royal College of Psychiatrists. Bipolar disorder: key facts.  London: Royal College of Psychiatrists; 2015.

Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis

Published on 3 April 2015

Yesufu-Udechuku, A.,Harrison, B.,Mayo-Wilson, E.,Young, N.,Woodhams, P.,Shiers, D.,Kuipers, E.,Kendall, T.

Br J Psychiatry Volume 206 , 2015

Background Informal caregiving is an integral part of the care of people with severe mental illness, but the support needs of those providing such care are not often met. Aims To determine whether interventions provided to people caring for those with severe mental illness improve the experience of caring and reduce caregiver burden. Method We conducted a systematic review and meta-analyses of randomised controlled trials (RCTs) of interventions delivered by health and social care services to informal carers (i.e. family or friends who provide support to someone with severe mental illness). Results Twenty-one RCTs with 1589 carers were included in the review. There was evidence suggesting that the carers' experience of care was improved at the end of the intervention by psychoeducation (standardised mean difference -1.03, 95% CI -1.69 to -0.36) and support groups (SMD = -1.16, 95% CI -1.96 to -0.36). Psychoeducation had a benefit on psychological distress more than 6 months later (SMD = -1.79, 95% CI -3.01 to -0.56) but not immediately post-intervention. Support interventions had a beneficial effect on psychological distress at the end of the intervention (SMD = -0.99, 95% CI -1.48 to -0.49) as did problem-solving bibliotherapy (SMD = -1.57, 95% CI -1.79 to -1.35); these effects were maintained at follow-up. The quality of the evidence was mainly low and very low. Evidence for combining these interventions and for self-help and self-management was inconclusive. Conclusions Carer-focused interventions appear to improve the experience of caring and quality of life and reduce psychological distress of those caring for people with severe mental illness, and these benefits may be gained in first-episode psychosis. Interventions for carers should be considered as part of integrated services for people with severe mental health problems.

Many relatives and other unpaid carers of people with schizophrenia are unable to work or take time off work to provide care and support. The informal care provided to people with severe mental illness saves the NHS the cost of providing similar paid care. This is estimated to be £34,000 per person with schizophrenia for providing care for five to six hours per day for a year. This translates into an aggregate cost to society of up to £1.24 billion per year. 

Commentary

Without the sustained assistance of informal carers, community care for severe mental illness would be unaffordable if not downright impractical. So supporting carers must be an NHS priority. But what are the evidence-based components of this support? This meta-analysis is an important step in the identification of these. Sadly, it finds that just as we have under-invested clinically in carer support, we have also under-invested in carer research. So 60 years after the start of deinstitutionalisation in the UK the best we can demonstrate are a small number of rather methodologically weak studies. Surely now is the time for concerted action to move research in this field up a gear to bring something of real benefit to carers.

Tom K J Craig, Professor of Social Psychiatry, King’s College London