What support can community mental health nurses deliver to carers of people diagnosed with...

International Journal of Nursing Studies 48 (2011) 100–120

Review

What support can community mental health nurses deliver to carersof people diagnosed with schizophrenia? Findings from a reviewof the literature

Sheena H. Macleod a,*, Lawrie Elliott b, Richard Brown c

a School of Nursing and Midwifery, University of Dundee, 11 Airlie Place, Dundee, Tayside DD1 4 HJ, Scotland, UKb Centre for Integrated Healthcare Research, School of Nursing, Midwifery, and Social Care, Edinburgh Napier University,

Comely Bank Campus, 13 Crewe Road South, Edinburgh, Scotland, UKc University of Dundee, Dundee, Scotland, UK

A R T I C L E I N F O

Article history:

Received 11 November 2009

Received in revised form 14 July 2010

Accepted 4 September 2010

Keywords:

Burden

Carer

Mental health nurses

Schizophrenia

Support

A B S T R A C T

Objectives: The purpose of this review was to determine the nature of support that mental

health nurses could deliver to carers of people diagnosed with schizophrenia. The aim was

to identify approaches that could be delivered within community practice to reduce

burden and increase knowledge, mental health and coping.

Questions addressed: What effect did support have on carer burden and other needs? What

were the key elements of effective support? What effective supports could mental health

nurses deliver within practice?

Design: This review covers the international scientific literature published between 1980

and 2008.

Data sources: Searches were made of electronic databases relevant to nursing. All papers,

published in English, were assessed. Hand searches of review papers and references were

also carried out. Sixty-eight studies were included.

Study appraisal and synthesis: Only comparative studies providing a quantitative

assessment of carer outcomes were included. Findings were synthesised in narrative

format and grouped by intervention type.

Results: Of the 68 emerging studies, 12 (18%) directly included nurses in delivering the

intervention and 16 (24%) included nurses as part of a multidisciplinary team. There is fairly

robust evidence that education improves carer knowledge of schizophrenia. There is,

however, little evidence that it addresses more substantive areas such as burden, coping or

mental health. Supportive family education moves beyond information giving by developing

coping. As might be expected these approaches can reduce burden. More intensive

programmes such as behavioural family therapy aim to address stressful relationships which

commonly occur in families of people diagnosed with schizophrenia. These programmes are

particularly effective in reducing burden and can also improve mental health. Community

support such as intensive outreach is also effective in reducing burden. Finally, there is some

evidence that mutual support groups reduce burden and improve coping.

Conclusions: Research on effective support for carers of people diagnosed with

schizophrenia is emerging. Although findings were mixed, there was some evidence

supporting a range of approaches that mental health nurses could offer to carers. There is,

however, still a need for pragmatic studies to determine the extent that these approaches

can be delivered within nursing practice.

� 2010 Elsevier Ltd. All rights reserved.

Contents lists available at ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

* Corresponding author.

E-mail address: [email protected] (S.H. Macleod).

0020-7489/$ – see front matter � 2010 Elsevier Ltd. All rights reserved.

doi:10.1016/j.ijnurstu.2010.09.005

http://dx.doi.org/10.1016/j.ijnurstu.2010.09.005

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S.H. Macleod et al. / International Journal of Nursing Studies 48 (2011) 100–120 101

What is already known about the topic?

� A
substantial number of people diagnosed with schizo-phrenia are supported to remain in the community byinformal carers such as family or friends. � P roviding such support can result in carer burden,
mental health problems, stress and loneliness
� T he nature of support that mental health nurses could
offer to meet the needs of these carers is uncertain.

What this paper adds

� T
he current review synthesised the research evidence onthe impact of support on the burden and needs reportedby carers of people diagnosed with schizophrenia. � It identified potentially effective approaches that could
be delivered by mental health nurses to meet the supportneeds of carers of people diagnosed with schizophrenia.
� R esearch gaps include the theoretical underpinnings and
focus of new programmes, the use of convenientrecruitment strategies, lack of assessment of the facil-itators and barriers to implementation in practice andthe low number of studies from developing countries.

1. Background

With a prevalence rate of around 1.1% of adults, about51 million people worldwide have been diagnosed withschizophrenia (WHO, 2005, 2006). Not all will have anenduring form of the condition. Within Europe, around 14–24% develop chronic symptoms, 53% have residualsymptoms and 29% recover. This indicates that manypeople diagnosed with schizophrenia will experiencerelapse or chronic impairment and may require long-termsupport (Warner, 1997).

Over the last 50 years advances in mental health carehave enabled a growing number of people to be cared for incommunity rather than hospital settings (WHO, 2007).There is, however, great variability in community mentalhealth care across the world. In 2005, community servicesexisted in 68% of countries (WHO, 2005). Currently, theWHO European Region supports the development ofcommunity services for people diagnosed with mentallyillness within the 42 member states (WHO, 2008a), and theWorld Organisation of Family Doctors (WONCA) supportthis globally (WHO, 2008b).

Non-professional carers represent a substantial part ofthe health economy in most countries (Lefley, 1997). Theyare often parents, partners, siblings or friends and are highlycommitted and often driven by a sense of social duty for thepeople they care for. Providing such support, however, canbe demanding, isolating and exhausting for carers and mayresult in mental health problems, stress and loneliness(Doran et al., 2003; Saunders, 2003). Carers may also have tocope with public stigma and professional ignorance of theirneeds (Corrigan and Miller, 2004). The effects of caring havebeen widely studied and include burden, difficulty in copingand managing, impaired health, and low satisfaction withservices (Ruane et al., 2004).

Reports indicate that these negative effects can startearly in the caring process (Tennakoon et al., 2001). As

such, there are powerful health, social and economicreasons to support carers to maintain their own wellbeing.In line with many countries, UK health policies acknowl-edge this and require health and social care professionalsincluding nurses to provide support. The type of support,however, is not well defined and legal requirement to do sofocus solely on assessing carers’ needs (Department ofHealth, 2008, 2009). Furthermore, it is uncertain how thiscould be achieved for carers of people diagnosed withschizophrenia (Arksey et al., 2002; Arksey, 2003).

A key question therefore, and one not answered bypolicy, is which type of support might be of benefit tocarers who look after someone diagnosed with schizo-phrenia? The academic literature acknowledges that keysituational variables mediate the level of burden experi-enced. These include the carer’s informal support system,coping strategies, their relationship with the patient andprofessional support (Platt, 1985; Baronet, 1999). Weknow that lack of social support contributes to carerburden and there is some evidence that it buffers stressand is related to improved carer outcomes (Magliano et al.,2003; McCarty and McMahon, 2003). As a result, a numberof support interventions are based on stress-coping andsocial support theories (Dow and McDonald, 2003).

In addition, caring can also provide a source ofsatisfaction (Nolan and Lundh, 1999) and satisfactionhas been positively correlated with improved access toservices (Chen and Greenberg, 2004), and reduced burdenand distress (Budd et al., 1998). In particular, distress canbe reduced through collaborative relationships withservice providers (McCann and Baker, 2001). Thus thereappears to be a growing body of evidence which, ifsynthesised could indicate which types of interventionmight be of benefit to carers of people diagnosed withschizophrenia.

Although training, titles and experiences of nurses vary,mental health nursing is well established in manycountries and it could be argued that as a professionnurses are well placed to offer carer support (Tilley andRyan, 2000; WHO, 2007). A review of UK communitymental health nurses indicates that they can effectivelydeliver a range of interventions to people diagnosed withschizophrenia and their families (Curran and Brooker,2007). A major concern, however, is the extent to whichnurses do so in practice (Fadden, 1997; Magliano et al.,2006). A review of psychosocial interventions reported byBrooker (2001) concluded that even after training, deliverywithin nursing practice was limited. This is supported in areview of psycho-education reported by McFarlane et al.(2003). Relatively few RCTs are carried out on nursingpractice and those that are commonly report difficultieswithin community mental health settings (Taylor, 2003;Pawson et al., 2005).

Although systematic reviews have been carried out onsupport intervention categories such as psycho-educationthese do not include other forms of support and theirprimary focus is on carers in general. To our knowledgethere is no review of the international literature whichprovides evidence of which type of interventions are mosteffective to support carers of people diagnosed withschizophrenia, particularly those which could be offered

S.H. Macleod et al. / International Journal of Nursing Studies 48 (2011) 100–120102

by nurses. Also, within the international literature there islimited research on the roles and functions of nurses in thesupport of carers of people diagnosed with schizophreniain practice (Gall et al., 2003; Elsom et al., 2007). As such, itis unclear what carer related outcomes could realisticallybe improved through professional support and wheremental health nurses might contribute to this.

To summarise, people diagnosed with schizophreniarepresent a key group internationally who experiencechronic mental health problems. It is also likely that asubstantial number are being cared for in the communityby informal carers such as family or friends. This can placeadditional burden on carers, some of which results instress. Thus, mental health policies in many countriesstrongly encourage services to offer carer support. How-ever, the nature of that support is not well defined and anylegal requirement, such as that in the UK, does not gobeyond assessing carer’s needs. There is a growing body ofevidence which suggests that interventions may improvecarer outcomes, but as yet, a synthesis of this evidence hasnot been undertaken for carers who look after someonediagnosed with schizophrenia. This is particularly so forinterventions which could be provided by communitymental health nurses who may be well placed to offer suchsupport. This review addresses these issues in that itreviews the research literature, published between 1980and 2008, on the effect of support based interventions onthe needs of carers of people diagnosed with schizo-phrenia. The aim was to determine effective approachesthat could be delivered by community mental healthnurses in practice.

Three key questions were explored:

1. W
hat effect did support have on carer burden and otherneeds?
2. W
hat were the key elements of effective support? 3. W hat effective supports could mental health nurses
deliver within practice?

2. Method

This review differs from a systematic review in two ways.First, searches were made of key electronic databases whichwere thought to be relevant to nursing, that is, theycontained papers which evaluated the evidence of inter-ventions which may be suited to nurses or conducted bynurses. This means not all available databases weresearched which in turn may mean that some papers weremissed. Second, we sought to include intervention studieswhich had comparative designs and did not restrict these toRCTs. That is, studies which assessed outcomes before andafter interventions even if the comparison was restricted toa single sample follow-up. Thus strict adherence to onedesign was not used to select or deselect studies.

Papers in the English language between 1980 and 2008were assessed. 1980 was selected as the time whenrelevant carer outcomes began to be reported in theliterature (Schene et al., 1994; Loukissa, 1994). Searcheswere made of key electronic databases. The sources were:CINAHL (1982–2008), MEDLINE (1980–2008), EMBASE(1988–2008), PsycINFO (1980–2008), Web of Knowledge –

Social Sciences Citation Index (1980–2008) and TheCochrane Library (1999–2008). Key journals, such asSchizophrenia Bulletin and websites such as MIND wereidentified and reviewed for relevant articles. Cross Search(Nursing and Midwifery) was carried out to identifymissing studies meeting the review criteria. Cross Searchprovided a single interface that simultaneously searchedmultiple sources. Reference lists of identified articles werehand searched to identify further relevant studies. We alsoincluded the individual studies identified from reviewsthat were relevant to the subject area that did not appear inour search of single study papers.

2.1. Search criteria

The population was defined as adult carers of peoplediagnosed with schizophrenia. Applying the PICO format(CRD, 2009) the search employed the following key terms(along with related terms).

Population – carer, caregiver, family, schizophrenia.Interventions and comparators – psychosocial, educa-

tion, day care, mutual support, community, mental healthservices.

Outcomes – knowledge, coping and managing, mentaland physical health. Our reasons for choosing theseoutcomes was based on our understanding of the mainprinciples upon which carer interventions were based thatis to raise awareness of schizophrenia, help carers copewith and manage caring, and in some instances improvetheir own physical health and wellbeing.

Papers containing the following designs were included.The taxonomy was derived from the CRD (2009).

� R
andomised controlled studies: Random assignment withcontrol and follow up. � Q uasi-experimental studies: Studies not achieving genu-
ine randomisation or allocation concealment.
� N on-randomised controlled studies: Studies comparing
two or more interventions and non random allocation.
� B efore and after studies: Comparison of a single sample.
Papers were required to report on a quantitativeevaluation of support for carers of people diagnosed withschizophrenia, and include relevant outcomes (burden,knowledge, health, coping and managing). Data reportedfor more than one group or more than one time pointwas required. The guidance provided within the Con-solidated Standards of Reporting Trials (CONSORT)statement is used to discuss randomised designs (Alt-man, 1996), and the Transparent Reporting of Non-randomised Designs (TREND) statement for non-rando-mised designs (Don et al., 2004). The PRISMA statementfor reporting reviews of healthcare interventions is alsoacknowledged (Moher et al., 2009). Although RCTs couldbe considered the ideal design for evaluating carersupport, they can be difficult to apply within health caresettings (Victoria et al., 2004). Some approaches are alsoeasier to evaluate using this design than others (Deeks etal., 2003). As a result non-randomised designs are widelyused to evaluate health interventions and are, therefore,included within this review.


Differences in means were used to evaluate summarymeasures. The risk of bias within and across studies wasassessed. Studies failing to report power calculations,reporting low numbers and/or the use of non-validatedoutcome measures, variability in interventions and out-come measures used across studies were identified as apotential risks. While supports can comprise a singleapproach such as education, they predominantly comprisea package of interventions. Such packages are regarded ascomplex interventions (Gotzche, 1989), and defining theiractive elements can be difficult. In order to determine thepossible mechanisms for the success, or otherwise, ofapproaches CRD (2009) guidelines propose that evalua-tions should include the theoretical basis of interventionsand we sought to include this as part of our assessment.

The review excluded qualitative evaluations andarticles not reporting relevant outcomes. Child carerswere also excluded as it was acknowledged that they couldhave different support needs from adults.

3. Results

Data searches were carried out by (SM) and checked bya second researcher (LE). Statistical guidance was providedby DB. Initial database searching using the key terms‘‘carer’’ and ‘‘schizophrenia’’ (and related terms) yieldedthousands of hits. Fig. 1 provides a flow diagram of dataretrieved through different stages of the review. As can beseen, relevant websites and review papers were alsosearched for studies. The search was refined in a series ofstages using each of the outcomes and then each of theinterventions (refined to 1708 papers). As a result of thisprocess 545 potentially relevant articles were identified. Ofthese, 396 were rejected as they were descriptive,quantitative or did not report relevant outcomes. Inparticular, a large body of literature reporting ExpressedEmotion did not meet the review criteria. The search[()TD$FIG]

Source: Moher et al 2009

Studies identified from database searches n=1,661 Studies identified from Websites n=5 34 reviews identified and references searched n= 42 Total = 1,708

Potentially relevant studies identified from initial screening (n=545)

Studies not meeting relevant criteria excluded and duplicate reports removed (n=396)

Full texts assessed for eligibility (n= 149)

Studies excluded (n=81)

No quantitative data reported n= 43 Data reported for mixed diagnostic groups n= 31 Data reported for one group at one time point only n= 7

Studies included (n= 68)

Education n= 10 Supportive family education n= 13 Family interventions n = 29 Community support services n= 9 Mutual support groups n= 4 Day care services n= 3

Fig. 1. Flow diagram of data retrieved at each stage of the review.

yielded 149 potentially relevant studies. After full assess-ment, 81 of these were rejected and 68 were included.Studies were rejected for either of the following reasons.

� N
o quantitative data reported for relevant outcomes. � D ata reported for mixed diagnostic groups. � D ata reported for one group at one time point only.
Appendix 1 provides an example of the search strategyusing MEDLINE to demonstrate the use of the search termsand limits.

Summary findings are reported according to the author,year, country and the PICO format (CRD, 2009) (Tables 1–6). A key to the abbreviations used for outcome measures isprovided as Appendix 2. Interventions include a broad,overlapping range of approaches with no formally agreedsystem for categorising these. For the purpose of thisreview, studies were grouped as: education, supportivefamily education, family interventions, community sup-port services, mutual support groups and day care services.

3.1. Education

Educational interventions take many forms and aredelivered either individually or through groups. Educationcan be professionally, or non-professionally, led with varieddurations and methods. Methods include lectures, bookletsor audio-visual presentations. The theoretical basis is that anunderstanding of schizophrenia and its management will bebeneficial for the carer, although apart from knowledgeother benefits are not often specified (Kazarin andVanderheyden, 1992). Ten studies are reviewed in thiscategory (Table 1). Interventions are delivered by specialistresearcher/clinicians except in one study where it wasdelivered by nurses as part of a team (Stengard, 2003), andone study where it was delivered by nurses experienced inthe intervention (Li and Arthur, 2005).

The impact of educational interventions on burden waslimited. Five studies report mixed findings. Only one quasi-experimental study reported reduced distress following 4–6 h of education (Smith and Birchwood, 1987). No effect onstress was reported in the remaining four studies (Cozolinoet al., 1988; Smith and Birchwood’s, 1987; Sidley et al.,1991; Stengard, 2003).

As could be expected the interventions had a favourableimpact on carer’s knowledge. Of the ten studies onereported no knowledge gain following a single (3 h) session(Cozolino et al., 1988) while the remaining nine reportedincreased carer knowledge about schizophrenia and itsmanagement following more than one educational session.One non-randomised controlled study assessed the impactof education on somatic symptoms, anxiety, insomnia,social dysfunction and severe depression and reported noimprovement (Stengard, 2003).

3.1.1. Critical conclusions

Educational programmes are fairly short in durationand aim to improve carer’s knowledge of schizophrenia.They generally achieve this aim but there is little evidencethat they address more substantive areas of caring such asimproving coping, reducing burden or improving health

Table 1

Reported effect of education n = 10.

Authors Intervention Effective elements, framework,

intensity and outcome measure

Delivered by Effects

Merinder et al. (1999).

Denmark RCT n = 46

Family Education

Comparison: Standard services

8 taught sessions on schizophrenia and its

management, early warning signs and legal issues

(Framework – Merinder et al., 1999) (KOS)

1 year follow up

Group Leaders Improves knowledge p< 0.05

Li and Arthur (2005).

China RCT n = 101

Family and Patient Education

Comparison: Standard care

Education while patient in hospital (8 h with patient

and 36 h with family) and 6 h following discharge

(for both together) (Framework: Li and Arthur,

2005) (KASI)

Nurses experienced in

the intervention

Improves knowledge

p< 0.01

Smith and Birchwood (1987).

UK n = 40

Birchwood et al. (1992).

UK Quasi Experimental n = 62

Education Package

Comparison: Postal Booklet’s

Education� 6 h. Seminar group format plus 4 booklets

about schizophrenia and its management. Emphasis

can be given to symptom management and package

extended to address carer misconceptions and quality

of life issues (Framework – Smith and Birchwood,

1987) (KSQ, SRT, FDS). 6 month follow up

Specialist

researcher/clinician

Improves knowledge p< 0.001,

fear and distress p< 0.01 but

no effect on health

Stengard (2003).

Finland Non-random

allocation n = 191

Education: Oral

Comparison: Video

Education� 8 sessions about schizophrenia and its

management. including support services or video

programme� 6 lectures (3 h) (Framework -Stengard,

2003) (KT and BS-developed for study, GHQ)

Nurses as part of the

mental health team


but no effect on burden or health

Sidley et al. (1991).

UK Pilot n = 18

Education package Comparison:

Modified educational package

4 educational booklets about schizophrenia and its

management – posted to carers at 1week intervals

or an educational video (Framework – Smith and

Birchwood, 1987) (KASI, KSQ, FDS)

Specialist researcher/

clinician


but no effect on distress or burden

Barrowclough et al. (1987). UK

Single sample n = 24

Information Booklet 2 information booklets with a one week interval.

Worked through with clinicians and questions

answered (Framework – Barrowclough et al.,

1986) (KASI)


clinician

Improves knowledge p< 0.001

Cazzullo et al. (1989).

Italy Single sample n = 17

Education Group Education and discussion group about schizophrenia

and its management. 24 h (Framework Cazzullo et al.,

1989) (KI)


clinician

Improves knowledge

p< 0.001

Cozolino et al. (1988). USA

Quasi Experimental pre-post

with a 2 month delay n = 36

Single education session

Comparison: Control group

Single (3 h) education session. Semi-formal didactic

presentation (Framework Snyder and Liberman,

1981) (KSU, RSS)


clinician

Does not improve health and

information was not retained

at 2 months.

Orhagen and d’Elia (1992).

Sweden. Single sample. n = 47

Multi-family Education programme Six, 2 h, structured educational sessions with unstructured

participant socialisation (Framework – Orhagen and d’Elia,

1992) (KST, FDS)


clinician

Increased knowledge was

associated with decreased

burden p< 0.05

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Table 2

Reported effect of supportive family education n = 13.

Authors Intervention Effective elements, framework, intensity and outcome

measure

Delivered by Effects

Zhang et al. (1998b)

China RCT n = 1048

Psycho-education group plus

standard services

Comparison Standard services

Lectures on schizophrenia, its management, family self-help

and promotion of carer health (14 h) and 5 group discussions

(Framework – Zhang et al., 1998a) Over 2 years plus standard

services (FBIS at 6, 12 and 24 months)

Nurse or psychiatrist Improves knowledge and

burden p< 0.01, but no

effect on health

Rotondi et al. (2005)

USA RCT n = 21

Web-based psycho education

Comparison: standard care

On-line group therapy and education about schizophrenia,

its management, library resource, problem solving and

e-mail response to questions.(Frameworks; Web-resource –

Rotondi et al., 2005) Therapy group -Manuals of Anderson

et al. (1986) and McFarlane et al. (1999) (DRD)

Experienced


Improves stress p< 0.05

Bradley et al. (2006)

Australia RCT n = 50

Multi Family

Psycho-education Group

Comparison: Psycho-education

Multifamily Psycho-education group (Framework –

McFarlane et al., 1999). Education and support

about schizophrenia and its management.

26 sessions over 1 year (FBIS)

Multidisciplinary group

excluding nurses

Improves burden

p< 0.001

Gutierrez-Maldonado and

Caqueo-Urizar (2007)

Chile RCT n = 45

Multi Family

Psycho-education Group

Comparison: Meetings with staff

Multifamily Psycho-education group (Framework –

McFarlane et al., 1999). Education and support about

schizophrenia and its management. 20 sessions (ZBI)

Psychologists Improves burden

p< 0.001

So et al. (2006) China

RCT n = 45

Group psycho-education� 9 h

Comparison –Waiting list

Psycho education– (Framework – So et al., 2006).

Knowledge about schizophrenia, its management,

relapse and stress, with role play and rehearsal of

skills. Six sessions over 9 h (ECI, GHQ)

Psychologist Improves knowledge

p< 0.01 but no effect on

health, burden, coping

Chan et al. (2008)

China RCT n = 73

Psycho-education group 10 sessions delivered over 3 months based on the Early

Psychosis Prevention and Intervention Centre (EPPIC)

handbook. Focus on education about schizophrenia

and its management, recovery, legal issues and early

warning signs (Framework –Chan et al., 2008) (FBIS)

Nurse trained in the

intervention

Improves burden p< 0.05

and self efficacy p< 0.001


Abramowitz and

Coursey (1989) USA

Non-random allocation n = 48

Education/Support Group.

Comparison: Waiting list matched.

Education and support utilising 3 coping strategies.

Problem solving, handling stress and social support.

2 h (Framework – Abramowitz and Coursey, 1989) (STAI)

Group leader Improves anxiety p< 0.005,

distress p< 0.001

Sota et al. (2008) Japan

Non-random

allocation n = 110

Family psycho-education

Comparison of 2, 5 and 9 sessions

Framework – Sota et al. (2008). 2 sessions = 2-3 families

given 4 h of education about schizophrenia, recovery and

relapse using 2 videos produced by the National Alliance

for the mentally Ill and NAMI and a pamphlet. 5 sessions.

Large group education about schizophrenia supported

with a different video followed by supportive group

therapy� 10 h. 9 sessions. Large group given 9 h of

education about schizophrenia and its management

followed by 10 h of group therapy (KASI)

Psychiatrists and social

workers

Improves knowledge p< 0.05

Hugen (1993) USA

Single sample n = 22

Educational Workshop Education about schizophrenia and its management,

coping skills and role of support groups� 7 h over

1 day (Framework – Mixed) (KASI)

Social worker-clinicians Improves knowledge

p< 0.05

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outcomes. Thus, the effects on more long terms goals suchas reducing burden or improving mental or physical healthshould not be expected. Of the ten studies in this categorysix were randomised controlled trials which compared theintervention with a control over time. Great variability wasobserved in study quality. Only Li and Arthur (2005) andStengard (2003) reported adequate sample sizes (althoughStengard used a non-validated scale). The comparativescope of these studies suggests a fairly robust evidencebase that education improves carer knowledge. Nursesdelivered education in two studies, but there is nothingfrom the remaining studies to indicate that they should beexcluded from doing so.

3.2. Supportive family education

The focus of supportive family education is ondeveloping carer competence. Although programmesinclude knowledge based sessions, they move beyondinformation giving to developing coping strategies andsupport mechanisms for carers (Hatfield and Lefley, 1987;Rose, 1998). The main goals are to reduce carer stress andburden and improve coping, social support and quality oflife (Dixon and Leham, 1995). Thirteen studies arereviewed in this category (Table 2). Varied forms ofsupportive family education were compared with waitinglist, family groups or conventional services. Interventionswere delivered by nurses in two studies (Zhang et al.,1998a,b; Chan et al., 2008) and by nurses as part of amultidisciplinary team in one study (Yamaguchi et al.,2006). Interventions were delivered by specialistresearcher/clinicians in all other studies.

Six studies assessed burden and all but one (So et al.,2006) reported a reduction in carer burden as a result ofthe intervention (Zhang et al., 1998a,b; Chan et al., 2008;Bradley et al., 2006; Gutierrez-Maldonado and Caqueo-Urizar, 2007; Yamaguchi et al., 2006). Four studiesassessed knowledge and all apart from Berkowitz et al.(1990) report increases in carer knowledge (Zhang et al.,1998a,b; Sota et al., 2008; Cassidy et al., 2001; Hugen,1993).

Four studies assessed knowledge and report increases(Zhang et al., 1998a,b; Sota et al., 2008; Cassidy et al., 2001;Hugen, 1993).

Six studies assessed mental or physical health and thefindings were mixed. Inadequate power was reported byWinefield and Harvey (1995). One study reported lessstress among carers following the intervention (Rotondi etal., 2005). Reduced anxiety and distress were reported intwo further studies (Abramowitz and Coursey, 1989;Yamaguchi et al., 2006). No health improvements werereported in a further two studies (Zhang et al., 1998a,b; Soet al., 2006).

3.2.1. Critical conclusions

Although not borne out in all studies, the positiveimpact of these interventions on carer outcomes issomewhat encouraging. The main impact appears to beincreased knowledge and reduced burden which could beexpected given that the theoretical basis of these inter-ventions is aimed at improved coping skills. The relation-

Table 3

Reported effect of family interventions.

Authors Intervention Effective elements, framework, intensity and outcome measure Delivered by Effects

McGill et al. (1983) USA RCT n = 36 BFT Comparison: Client

Individual Supportive

Psychotherapy

24 sessions over 6 months. 3 key components; structured

problem solving and communication training and education

about schizophrenia (Behavioural Family Therapy (BFT).

Framework – Falloon et al., 1984) (KSQ)


clinician

Improves knowledge

p< 0.004

Falloon and Pederson (1985)

USA RCT n = 36

BFT-plus CCM

Comparison: Individual

Supportive Psychotherapy

23 h. 3 key elements; structured problem solving and

communication training, and education about

schizophrenia (BFT. Framework – Falloon et al., 1984).

Plus Community Case Management (CCM) (SBAS, FC)

Community mental

health services

Improves burden

p< 0.0005

and

coping p< 0.0001

Doane et al. (1986) USA RCT n = 33 BFT Comparison:

Individual Support

3 key elements; structured problem solving, education

about schizophrenia and communication training (BFT.

Framework – Falloon et al., 1984). 23-24 h over 6

months (PSS)


clinician

Improves problem

solving p< 0.01

Razali et al. (2000)

Malaysia RCT n = 143

BFT. Modified

Comparison: Behaviour

Family Therapy

3 elements; Structured problem solving and

communication training, and education about

schizophrenia (BFT. Framework – Falloon et al., 1984).

Culturally Modified. Communication removed and drug

intervention added (FBIS)


psychiatrists

Improves burden

p< 0.05

Veltro et al. (2006) Italy RCT n = 24 BFT Comparison;

Individual standard care


about schizophrenia and communication training (BFT.

Framework – Falloon et al., 1984). Delivered over

1 year (FPQ)

Community mental

health services

Improves burden

p< 0.001

Berglund et al. (2003) Sweden Quasi

experimental n = 31

BFT Comparison

Standard family support


about schizophrenia and communication training

(BFT. Framework – Falloon et al., 1984). Variable

duration during patient in-patient care (DS)


clinicians

Improves burden

p< 0.01

Magliano et al. (2006) Italy

Quasi experimental n = 71

BFT Comparator:

waiting list

3 key elements; structured problem solving,

education about schizophrenia and communication

training (BFT. Framework – Falloon et al., 1984).

Delivered over 1 year (FPQ)

Mental health

professionals

trained in BFT

Improves burden

p< 0.05

Kane et al. (1990) USA Quasi

experimental n = 37

BFT Comparison:

Multi-family Support Group

4 weekly multi family groups. 3 key components;

structured problem solving and communication

training and education about schizophrenia (BFT.

Framework – Falloon et al., 1984). Or Multi-family

support group (MIQ, SDC-subscale Depression)


clinicians

Improves knowledge

p< 0.001 and

depression p< 0.005

Brooker et al. (1994) UK Quasi

experimental n = 34

BFT Comparison: Waiting list 3 key elements; structured problem solving and

communication training and education about

schizophrenia (BFT. Framework – Falloon et al.,

1984). 23 h (KASI, GHQ)

Nurses trained in BFT Improves knowledge

p< .001

and health p< 0.05

Magliano et al. (2005) Italy Single

sample n = 55

BFT 3 key elements; structured problem solving and

communication training and education about

schizophrenia (BFT. Framework – Falloon et al.,

1984). Variable duration over 1 year (FBQ, FCQ)

Mental health

professionals trained

in BFT

Improves burden

and coping p< 0.001

S.H.

Ma

cleod

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l./Intern

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na

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rsing

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8(2

01

1)

10

0–

12

01

07

Table 3 (Continued )


Bentley (1990) USA Single

sample n = 4

BFT Adapted. 3 key elements; structured problem

solving and communication training and

education about schizophrenia (Framework –

Falloon et al., 1984). Briefer and incorporated

teaching of basic stress management.

10 sessions (IFR)


clinicians

No effect on

family stress

Xiong et al. (1994)

China. RCT n = 63

BFT, crisis intervention

and group meetings.

Comparison: Standard

post hospital care

Culturally modified BFT. 3 key elements; structured problem

solving, communication training and education about

schizophrenia (Framework– Falloon et al., 1984). Plus, crisis

intervention and group meetings (Brief non standard

burden scale)


clinicians

No effect on burden

Shore and Holmshaw (1998)

UK Single sample n = 18

Cognitive Behavioural

Family Intervention

(CBFI)

Needs –based CBFI. 10–20 sessions� 24 weeks. Carer given

a choice of CBFI (Barrowclough and Tarrier, 1992), Patient

CBI (Haddock and Tarrier, 1998) or Problem Solving

Training (Falloon et al., 1984) (KSQ, GHQ-12 item, FDS)

Mental health

professionals including

PI trained nurse

Improves knowledge

p< 0.005 but no

effect on health or

burden.

Barrowclough et al. (1999) UK

RCT n = 69

CBFI and support

Comparison: Key

worker family support

Needs-based CBFI 10–20 sessions� 24 weeks. Choice of:

CBFI (Barrowclough and Tarrier, 1992), Patient Cognitive

Behavioural Intervention (Haddock and Tarrier, 1998),

Problem Solving Training (Falloon et al., 1984). Plus

5 key worker family support sessions (RCNS, GHQ, BDI,

SBAS section D)

Key worker Specialist


Improves problems

p< 0.05 and cardinal

needs p< 0.01 but

no effect on burden,

health or depression

Leff et al. (2001) UK RCT n = 24 CBFI plus education

Comparison: Education

Community Mental Health Nurses trained in interaction

model of giving information. 3 elements: Needs assessment.

Health education. Stress management. Variable duration

plus 2 formal educational sessions (KI, McArthy Scale 1989)

Nurses Improves burden

p< 0.05 but no

knowledge change

over time

Sellwood et al. (2001) UK RCT n = 73 BFI plus family support

and standard care

Comparison: Family

support and standard

care

Needs-based CBFI. 10–20 sessions� 24 weeks. Carer given

a choice of CBFI (Barrowclough and Tarrier, 1992), Patient

CBI (Haddock and Tarrier, 1998) or Problem Solving

Training (Falloon et al., 1984) plus family support and

standard care (SBAS (sect D), GHQ, BDI, RCNs)

Clinical psychologist

and key worker

No effect on burden

health, depression

or needs

Haddock et al. (2003) UK RCT n = 36

(patient also has substance abuse)

Integrated CBFI, family

support worker plus

normal services

Comparison: Family

support worker plus

normal services over

9 months.

Needs-based CBFI 10–20 sessions� 24 weeks. Choice of:

CBFI (Barrowclough and Tarrier, 1992), Patient Cognitive

Behavioural Intervention (Haddock and Tarrier, 1998),

Problem Solving Training (Falloon et al., 1984). Adapted

to include modified motivational interviewing. Plus

family support worker and normal services. 39–45

sessions (minimum of 10) (GHQ, BDI, RCNs, SBAS).

Trained therapists No effect on health,

depression, needs

or burden.

Brooker et al. (1992) UK Matched

controls n = 30 (17 at 1 year)

CPN Psychosocial

Intervention Comparison:

CPN support visits

CMHN’s trained in interaction model of giving information.

3 components: Needs assessment. Health education. Stress

management. Variable duration (KASI)

Community Psychiatric

Nurses

Improves knowledge

p< 0.005

Turkington et al. (2002) UK RCT n = 42 Brief CBFI. Comparison:

CMHT care

Brief CBFI in community setting. Community Mental Health

Nurses trained in interaction model of giving information.

3 elements: Needs assessment. Health education. Stress

management. Variable duration plus psycho-education (BOCQ)

Community Psychiatric

Nurses briefly trained

in CBT

No effect on burden.

S.H.

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cleod

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8(2

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0–

12

01

08

Posner et al. (1992) USA RCT n = 39 Supportive Psycho-

education group

Comparator Waiting list

Structured supportive psycho-educational family

intervention. Educational workshops about schizophrenia

and its management, stress management, boundary/rule

setting, problem solving and community training. 12 h

(Framework – Anderson et al., 1980 (KST, WOC, GHQ)

Nurses or social workers Improves knowledge

p< 0.001, but no

effect on health

or coping

Mueser et al. (2001) USA RCT n = 280 Supportive Psycho-

education group then

2 years of either

monthly supportive or

applied multi family

groups

Structured supportive psycho-educational family

intervention. Educational workshops about schizophrenia

and its management, stress management, boundary/rule

setting, problem solving and community training. 12 h

(Framework – Anderson et al., 1980) (SAS 11 Modified).


clinician

No effect on burden

across time.

Hazel et al. (2004) USA RCT n = 76 Multi-family Group

(MFG) Comparison:

Outpatient care

Multi-family group. Integrated psycho-education and behaviour

family therapy over 2 years. Bi-monthly for first year then monthly.

4 phases: Patient and family, psycho-education workshop�1 day, relapse prevention and social skills training (Framework –

McFarlane, 2002) (PSS, CES-D, RWCCL)


clinician

Improves stress

p< 0.05, but no

effect on depression

or coping.

McDonnell et al. (2003) USA RCT n = 84 MFG Comparison:

Standard care

Multiple Family Group Treatment (Framework – McFarlane, 2002)

Integrated psycho-education and Behaviour Family Therapy

delivered over 2 years (Bi-monthly for the first year and monthly

for the second year. Four phases: Patient and family combined.

A one day psycho-education workshop. Relapse prevention.

Social skills enhancement (FBIS)

Community Mental

Health Team

No effect on burden

McDonnell et al. (2007) USA

RCT n = 106

MFG plus standard

care Comparison:

Standard care

Multiple Family Group Treatment (Framework – McFarlane,

2002) Integrated psycho-education and Behaviour Family

Therapy delivered over 2 years (Bi-monthly for the first year

and monthly for the second year. Four phases: Patient and

family combined. A 1 day psycho-education workshop.

Relapse prevention. Social skills enhancement (RWCCL, CES-D)

Multidisciplinary

group, including

nurses, trained in

MGFT

No effect on

depression or

coping.

Carra et al. (2007) Italy,

RCT. n = 76

MFG Comparison:

MFGT plus 72 h

support group meetings

Framework adapted from Leff et al., 1989. Models and goals

mainly derived from the Leff et al. (1989) model of relatives

groups. Two elements. 1= weekly meetings and information

group. Training in communication and coping skills, stress

identification and management and multiple family group-

based problem solving over 42 h.

Psychiatrists trained

in intervention

No effect on burden

Addington et al. (2005),

Canada Longitudinal

Individualised Family

Intervention 165 @

6 months

Individualised family intervention within a comprehensive

community treatment programme. Average 7 sessions (ECI,

PGWB). n = 138 @ 1 year, 91 @ 3 years


clinician

Improves burden

p< 0.01 and

wellbeing over

time p< 0.005

Ran et al. (2003) China. RCT

n = 326

Family Intervention,

medication and crisis

intervention Comparatorj:medication alone

or control

Culturally modified family intervention. 13–27 h plus

medication and crisis intervention (RBS)

Psychiatrists trained

in intervention

Improves knowledge

p< 0.05

Cheng and Chan (2005) China

RCT n = 64

Family Intervention

plus standard care

Comparator: Standard care

20 h. 4 elements: Education about schizophrenia.

Communication, problem solving and stress coping skills,

dealing with crisis and services (Framework-Atkinson and

Coia, 1995). Plus standard care (FBIS, SES)

Nurses Improves burden

and coping/self

efficacy p< 0.01

S.H.

Ma

cleod

eta

l./Intern

atio

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lJo

urn

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of

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rsing

Stud

ies4

8(2

01

1)

10

0–

12

01

09

Table 4

Reported effect of community support services n = 9.


Pai and Kapur (1982)

India RCT n = 54

Community visits and

counseling. Comparison:

Hospital and standard care

Community visits and counselling (Framework Pai and Kapur,

1982) (BFS)

Nurses plus MH team Improves burden p< 0.001

Reynolds and Hoult (1984)

(See Hoult and Reynolds,

1981) Australia RCT n = 58

Comprehensive ACT

Comparison standard

hospital and aftercare

Comprehensive Assertive Community Treatment. Training in

Community Living. Intensive community treatment

programme (Framework Stein and Test, 1980). Over 1 year

plus 24 h crisis service (Measures developed for study)

Multi-disciplinary team

including nurses

Improves worrying p< 0.05

and perceived coping p< 0.001

Test and Stein (1980) Canada.

Non randomized control n = 40

ACT Comparison:

Short-term hospitalization

Assertive Community Treatment. Training in Community

Living Programme. Intensive Community treatment

(Framework Stein and Test, 1980) (FBIS)


including nurses

Improves burden (small effect)

Szmukler et al. (1998) UK Non

random control n = 124

(majority schizophrenia)

Intensive care including

Assertive outreach


Intensive care including Assertive outreach Multi-disciplinary team

including nurses

No effect on health

Asberg-Wisted et al. (1995)

Sweden RCT n = 40

Intensive Case Management


Smaller caseloads, advice and education about schizophrenia,

support, problem solving, information gathering and child

protection (Burden Scale)


including nurses

Improves burden associated

with relationship with

psychiatric services p< 0.001

Harvey et al. (2002) UK.

RCT n = 116

Intensive Case Management

Comparison: Standard case

management

Smaller caseloads, advice and education about schizophrenia,

support, problem solving, information gathering and child

protection (ECI, GHQ)


including nurses

No effect on burden or health

Jeppesen et al. (2005)

Denmark RCT n = 325

Integrated Community

Treatment Comparison:

Standard care

4 elements: Lower case loads. Skills training. Multi Family

Group. Psycho-educational family support (Framework –

Jeppesen et al., 2005), Assertive Community Treatment

(Framework Stein and Test, 1980), and Training in

Community Living – over 2 years (SBAS, KST)


including nurses

Improves burden related to ‘‘

patients social role

performance’’ p< 0.03 and ‘‘

adverse effects of illness’’

p< 0.05, but no effect on

knowledge

Carpentier et al. (1992) Canada.

Non random

matched control n = 37

Comprehensive Support

Service Comparison:

Usual services

Psycho-education including communication training,

reviewing carer expectations and guilt (Framework-

Carpentier et al., 1992). 1 year minimum (SBAS-subscale, IS)


including nurses

Improves burden associated

with patients problems

p< 0.06. Distress not reported.

Kopelowitcz et al. (2003) USA

RCT n = 92 Latino carers

DMP plus Case Management

Comparison: Standard

case management

Disease Management Programme (Framework;

Liberman et al., 1984). Culturally adapted skills-based

education about schizophrenia and its management.

4 sessions per week over 3 months (72 h). Models based

on skills training techniques, problem solving and

homework (FBIS)


including nurses

No effect on burden

S.H.

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cleod

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10

0–

12

01

10

Table 5

Reported effect of mutual support group n = 4.


Chien et al. (2004)

China RCT n = 48

Multi Family Support

Group Comparisons

24 week programme. Bi-weekly, 2 h sessions in 3 areas: psychological

needs, dealing with psychosocial needs, and adopting new roles

and challenges (Framework – Chien et al., 2004). 24 h plus standard

care. Or-Psycho-education plus standard care (FBIS, FAD)

Researcher/nurse

clinician

Improves burden

and coping p< 0.01

(Chien et al., 2006,

18 month follow up)

1. Psycho-education

2. Standard care

Chien et al. (2005)

China. RCT n = 94

1. Multi Family Support Group.

2. Psycho-education.

3. Standard care

Bi-weekly� 2 h sessions. 3 areas: recognition of psychological

needs, dealing with psychosocial needs and adopting new roles

and challenges (Framework Chien et al., 2004). 24 h plus

standard care. Or Psycho-education plus standard care (FAD)

Specialist


Improves coping

p< 0.01

Chou et al. (2002) Taiwan.

Quasi-experimental n = 70

Support Group Comparison:

Control group

8 discussions around information, problem solving, coping and

support. 12 h. Professionally–led (Manual – Zarit et al.,

1983) (CBI, BDI)

Nurse with

experience in

group work

Improves burden

p< 0.05 and

mood p< 0.0001

Tee and Dorey (2000)

UK Single sample n = 29

Multi Family Support Group

and information booklets

3 year, professionally–led network to; engage families, educate

about schizophrenia and its management, empower/raise

awareness about rights and service access, mutual support

and adaptation plus information booklets� 8 sessions

(Framework Tee and Dorey, 2000) (KASI, GHQ)

Specialist


Improves knowledge

and health p< 0.005

Table 6

Reported effect of day care n = 3.


Rao et al. (1988)

India single sample n = 19

Day hospital 12 week programme. Activity therapy and vocational training. 7 h

a day for 6 days a week (FBIS)

Nurses and day

hospital staff

Improves burden in subscales for –

finances, physical health (p< 0.05,

mental health and disruption to

routine p< 0.01

Creed et al. (1997) UK. RCT.

n = 103 (43% Schizophrenia)

Day care Comparison:

Inpatient care

Day hospital acute treatment programme. 1 year duration

(SBAS, GHQ)

Nurses No effect on health or burden

Koukia and Madianos (2005)

Greece. Non randomised

controlled study. One

time point. n = 136

Day care rehabilitation

programme. Comparison:

Standard care

Day care rehabilitation programme. Patient OT, social skills training,

group psychotherapy and recreational activity. Variable duration.

Standard community treatment = psychotropic medication, individual

supportive psychotherapy and occasionally social work (FBS, CES-D)

OT and multi-

disciplinary team

including nurses

No effect on burden or wellbeing

S.H.

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11


ship between coping skills and burden is neatly summedup to two studies. One reported increased self-efficacy anda reduction in burden in carers (Chan et al., 2008) and theother reported no difference in coping between carers inthe intervention and controls and no reduction in burden(So et al., 2006).

Two of the four randomised control studies reportingreduced burden used the same burden scale (Zhang et al.,1998b; Chan et al., 2008). A lack of any standard measure ofburden leads to difficulty in making direct comparisonswith the other studies and also in generating meaningfulstatistical synthesis across these studies. These problemsare exacerbated by studies which use different statisticaltechniques to report outcomes or studies providingextremely cursory data (Abramowitz and Coursey, 1989;Yamaguchi et al., 2006).

Furthermore, there was a relatively wide range ofintervention components across the studies. For examplethe following components were delivered in the fourrandomised controlled studies reporting reduced burden:Lectures and group discussions (Zhang et al., 1998a,b),multi-family psycho-education group work (Bradley et al.,2006; Gutierrez-Maldonado and Caqueo-Urizar, 2007) andan educational package about schizophrenia and itsmanagement (Chan et al., 2008). Thus it is difficult todetermine the most successful components from thesestudies or to be prescriptive about what might be deliveredin future interventions.

3.3. Family interventions

Family interventions have been extensively studiedsince the 1970s. Although differing in method and design,they share a common set of assumptions (Lam, 1991). Abiological basis for schizophrenia and the stress vulner-ability model of Zubin and Spring (1977) are acknowledgedand the seminal work of Brown in the 1960s led to a socialfocus and the development of the concept of ExpressedEmotion (EE) (1986). EE provides a measure of familystress (Brown and Rutter, 1966). High EE family’sexperience more burden than low EE families (Scazufcaand Kuipers, 1996). There are a number of highlystructured and distinct family interventions comprisingof a core set of elements. Most interventions combinebiological and social components. A key biologicalcomponent is compliance with medication. Social compo-nents include communication and problem solving train-ing, education and increasing social networks (Leff et al.,1976; Falloon et al., 1984; Ruane et al., 2004). The two mostcommon forms of family intervention are behaviouralfamily therapy (BFT) developed by Falloon et al. (1984) andcognitive behavioural family therapy (CBFT) (Barrow-clough et al., 1998).

Family interventions represent the largest group ofstudies and include twenty-nine studies, of which, nine-teen were randomised controlled trials (Table 3). A range offamily interventions were assessed alongside a number ofcontrols including client supportive psychotherapy, groupsupport, waiting list and standard care. Interventions aredelivered by mental health nurses in eight studies and bynurses as part of a mental health team in five.

Nineteen studies assessed carer burden. The strongestevidence was for twenty-three hours or more of Falloon etal.’s (1984) behavioural family therapy (BFT) where areduction in burden was reported in favour of theintervention in three randomised controlled trials (Falloonand Pederson, 1985; Razali et al., 2000; Veltro et al., 2006).When quasi-experimental studies are included, thenumber of trials reporting a favourable effect on burdenfrom BFT rises to five (Berglund et al., 2003; Magliano et al.,2006). There was less support for cognitive behaviouralfamily interventions (CBFI) where five out of six trialsreported no change in carer burden (Shore and Holmshaw,1998; Barrowclough et al., 1999; Sellwood et al., 2001;Haddock et al., 2003; Turkington et al., 2002). Only onetrial reported reduced burden following variable durationsof CBFI (Leff et al., 2001). This study, however, appeared toemploy low numbers. There was no evidence of an effecton burden among other family approaches except thatdesigned by Atkinson and Coia (1995) which consisted ofeducation, communication problem solving, coping skills,dealing with crises and services and reported in arandomised controlled trial by Cheng and Chan (2005).

Three studies reported improved coping in favour of theintervention, two based on BFT (Falloon and Pederson,1985; Magliano et al., 2005) and one on Atkinson andCoia’s (1995) framework (Cheng and Chan, 2005). Fourrandomised controlled studies reported no difference incoping (Posner et al., 1992; Szmukler et al., 1996;McFarlane et al., 1999; Hazel et al., 2004; McDonnell etal., 2007).

Eight studies reported knowledge gains which weremaintained for up to one year. Effective interventionsconsisted of BFT (McGill et al., 1983; Turkington et al.,2002; Kane et al., 1990; Brooker et al., 1994) CBFI (Shoreand Holmshaw, 1998); group psycho education (Posner etal., 1992) psychosocial intervention (Brooker et al., 1992)and culturally modified family intervention (Ran et al.,2003)

Twelve studies assessed health and report mixedfindings. Three studies reported improved health in favourof the intervention. Reduced depression (Kane et al., 1990)and general health (Brooker et al., 1994) were reportedfollowing BFT, and improved wellbeing was reportedfollowing an individualized family intervention (Adding-ton et al., 2005).

3.3.1. Critical discussion

The most studied intervention was that of behaviourfamily therapy (12/29 studies). Most report improvementsin either knowledge or burden and some improvements inthe mental health of carers were also noted. Cognitivebehavioural family therapy was less effective in reducingcarer burden and mental health and there is equivocalevidence for the success of other types of familyinterventions. Interestingly, the control interventionsvaried considerably in the BFT studies ranging from nointervention (waiting list) standard care or other forms offamily support. This acts to strengthen the findings in thatBFT is likely to be more beneficial to families than otheractive interventions. Nevertheless the sample sizes in moststudies (including BFT) are rather small (circa 30) which


may mean some studies were probably underpowered. Aspreviously stated, family interventions have a long historyin terms of clinical development and formal assessmentand as a result there are signs of increasingly sophisticateddesigns including follow-ups of up to 3 years (Addington etal., 2005). This history is not apparent in other forms offamily intervention, but this should not be interpreted as asign that BFT for example out performs other interven-tions.

3.4. Community support services

Community care policies have led to a range ofcommunity services for people diagnosed with schizo-phrenia (Weinberg and Huxley, 2000). Communityapproaches include case management, assertive outreach,community visits and daily living programmes. Marshalland Lockwood (1998) identify two distinct types ofapproach; Assertive Community Treatment (outreach,lower case loads and intensive support) and Clinical CaseManagement (case managers organising communityservices). However some interventions have a mixedapproach or use alternative interventions such as homecounseling (Mueser et al., 1998, 2001). Nine studies werereviewed in this category. All supports are delivered bymultidisciplinary teams that include nurses (Table 4)

Seven studies assessed carer burden and five reportreduced burden as a result of assertive communitytreatment (Test and Stein, 1980; Jeppesen et al., 2005)clinical case management (Asberg-Wisted et al., 1995)home counseling (Pai and Kapur, 1982) and multidisci-plinary support (Carpentier et al., 1992).

One randomised controlled study reported no signifi-cant knowledge gains following an integrated approach(ACT, psycho-education and MFG) compared with stan-dard services (Jeppesen et al., 2005).

Two randomised controlled studies reported no healthimprovements following intensive management and asser-tive outreach (Szmukler et al., 1998), or intensive comparedwith standard case management (Harvey et al., 2002).

Only one study assessed coping and reported improvedworrying and coping following more than a year ofcomprehensive ACT plus a 24 h crisis service (Reynoldsand Hoult, 1984). This study however, used a non-validated outcome measure developed for the study.


It is difficult to disentangle the more active elements ofcommunity support services from those which are perhapsless effective. However there is some evidence that moreintensive support in the form of outreach or home visitsand low case loads will result in reduced carer burden. Thisis likely to be more expensive and thus perhaps lessattractive to service managers seeking to reduce costs.Interventions which were theoretically based showed thegreatest promise. For example four of the five studieswhich demonstrated a favourable effect on burden werebased on theoretical approaches including that developedby Stein and Test (1980), Pai and Kapur (1982), Carpentieret al. (1992) and Jeppesen et al. (2005). Nurses wereinvolved in delivering all of the interventions and thus

these interventions appear to be suited to nurses incommunity settings. A variety of burden measures wereused and sample sizes of circa 50 or under were used in fiveof the nine studies. However despite the relatively lowsample sizes statistically significant differences in burdenwere evident.

3.5. Mutual support groups

Carer support groups date from 1963 (Katschnig andKonieczna, 1989). Since this time numerous professionaland non-professional mutual support groups (MSG) haveemerged. These groups differ in relation to the level ofsupport, education and theoretical underpinnings (Wuer-ker, 2000). These might include role development (Chien etal., 2004) developing a sense of empowerment and controlor improving social support (Tee and Dorey, 2000). Fourstudies were including in this category. Interventions weredelivered by specialist researchers in all apart from onestudy (Chou et al., 2002) (Table 5).

Reduced burden was reported in one randomisedcontrolled study based on Chein’s role development model(Chien et al., 2004), and one quasi-experimental studyZarit et al.’s (1983) framework which encouraged problemsolving, coping and social support (Chou et al., 2002).Knowledge gains were reported in a single sample studyfollowing eight MSG sessions plus information booklets(Tee and Dorey, 2000).Two studies reported healthimprovements. Reduced depression was reported follow-ing twelve hours of Zarit et al.’s (1983) MSG framework(Chou et al., 2002) and improved general health wasreported following MSG plus information booklets (Teeand Dorey, 2000).

Increased coping was reported in two randomisedcontrolled studies following 24 hours of MSG (Chien et al.,2004, 2005).


Despite its relatively long history there were only fourstudies included in the review which reported impact ofmutual support groups on carer outcomes. Compare thiswith family interventions which have been running over asimilar time period but have almost 30 published outcomestudies. Interestingly all four mutual support groups weredelivered by professionals, including nurses, and this raisesthe question about the possible effects of carer run groupswhich indicates a gap in the literature on this subject. Themajority of studies rejected from this category employedmixed diagnostic groups. This aside there was some, iflimited, evidence that MSG improved burden, mood,health, coping and knowledge.

3.6. Day care services

Day care services typically provide supervised andstructured programmes for the patient and in doing so mayprovide respite for the carer (Creed et al., 1997; Catty et al.,2007). Three studies were included in the review. Allincluded nurses in the delivery of these services (Table 6).

There was limited evidence that day care reducedburden. One single sample study reported improvements


in burden following a twelve week active therapy andvocational training programme for people diagnosed withschizophrenia in India (Rao et al., 1988). No reductions inburden or health were reported for similar programmes ina randomised controlled study in the UK (Creed et al.,1997), or in a non-randomised controlled study in Greece(Koukia and Madianos, 2005). Although the focus of daycare programmes is on the patient they can provide respitefor carers.


There was no evidence that day care significantlyimpacted on carer burden or health. Only Rao et al. (1988)reported subscale reductions in burden. In terms of qualitythis single sample study employed a convenient sample,very low numbers (n = 19) and a high drop out. It is worthnoting that some carers reported returning to work and afinancial payment was made to study participants thatcould contribute to the subscale reduction in burden forreduced financial burden reported by carers.

4. Discussion

While varying in quality, studies included within thisreview indicate potentially effective approaches and thatsome of these can be delivered by mental health nurses(Table 7). There is fairly robust evidence that carereducation programmes improve knowledge about schizo-phrenia, however there is little evidence that thisaddresses more substantive areas of caring such asimproved coping, reduced burden or improved health.Other interventions such as supportive family educationmove beyond information giving by providing socialsupport and developing coping strategies. As might beexpected these interventions are able to reduce carerburden and distress and increase self efficacy. Moreintensive programmes such as behavioural family therapyaim to address stressful relationships which commonlyoccur in families where a member is diagnosed withschizophrenia. These programmes are particularly effec-tive in reducing carer burden and in some instancesimproving the carer’s coping and mental health. Commu-nity based support such as intensive outreach whencombined with low case loads is also effective in reducingcarer burden and increasing coping. There is someevidence that mutual support groups reduce carer burdenand improve coping. Finally there is minimal evidence thatday care for those diagnosed with schizophrenia reducescarer burden or improves health and coping

These findings support and update existing reviews,which incidentally also report mixed findings. A meta-analysis of family interventions (Cuijpers, 1999) reportedmoderate effects on distress, patient–carer relationshipand family functioning for more than twelve sessions.Barbato and d’Avanzo (2000), however, concluded thattheir effectiveness on outcomes were weakly supported.Dixon and Leham (1995) reported modest evidence thatfamily interventions improved well-being. An update ofthis review, concluded that benefits were unclear and thatcritical components still had to be identified (Dixon et al.,2000). Education and supportive family education tend to

be included together within reviews. Kazarin and Van-derheyden (1992) and Pekkala and Merinder (2004)reported inconclusive effects on burden. A meta analysis(1980–1998) of community treatments reported byZiguras and Stuart (2000) concluded that, from a limitednumber of studies, Assertive Community Treatment andCommunity Management were associated with improvedburden.

There is, however, support from the studies included inthe present review of the importance of a theoreticalfoundation for an intervention. For example supportivefamily education attempts to move beyond informationgiving by developing carers’ coping skills which in turnshould reduce carer burden. This relationship wasdemonstrated in one study where the intervention worked(Chan et al., 2008) and was not observed in another studywhere the intervention failed (So et al., 2006). There is alsoa strong theoretical foundation to family therapy, notablythe work of Brown (1986) on expressed emotion. Familytherapy aims to help the family identify and tackle thesource of expressed emotion and if successful should leadto reduced carer burden and improved mental health.Other interventions such as community support addelements of management theory particularly in terms ofreducing case load and improving the relationshipbetween services and carers (Asberg-Wisted et al.,1995). Interestingly mutual support groups remainedrelatively ineffective in reducing carer burden. This issurprising given that these may have a natural appeal tocarers, however as Chien and Norman (2009) indicates in arecent review of the international literature there is a weaktheoretical base for this type of programme. There waslittle evidence to link the theoretical basis of day care withcarer outcomes, and this was also relatively ineffective inreducing carer burden.

A key question is whether nurses are able to deliver theeffective interventions. Of the 68 studies included, 12 (18%)were delivered solely by nurses and 16 (24%) included nursesas part of a multidisciplinary team. The remaining studiesemployed researchers or therapists or provided little detailon who delivered the intervention. The extent that nurseswere involved in delivery also varied across approaches; 1%for education, 25% for supportive family education andmutual support groups, 32% for family interventions and100% community support and day care services. Thus, apartfrom education based interventions there is substantialevidence that nurses are capable of delivering all of theprogrammes described in this review. With respect toeducational interventions these are probably the moststraight forward of all to deliver and thus should fall withinthe capability of most nurses.

We acknowledge however that nurses may have to betrained to deliver more intensive interventions such asfamily support, family therapy and community support.These types of interventions often require the nurse towork intensively with carers over a longer time period.This in turn requires low case loads, see for examplecommunity support, and thus are fairly resource intensive.Brooker (2001) and Brooker and Brabban (2004) note thateven when nurses are trained to deliver carer interventionsfew go on to deliver these in practice. One review of the

Table 7

Effective intervention frameworks reported for specific carer outcomes.

Framework Elements Delivered by Burden Knowledge Health Coping

Education

Smith and

Birchwood (1987)

Six hours of an Education

package


clinicians

Smith and Birchwood (1987) a

Birchwood et al. (1992) a

Merinder et al. (1999) Eight taught sessions Group leaders Merinder et al. (1999) a

Stengard (2003) or Li and

Arthur (2005)

Six or more hours of an

educational package

Nurses as part of team or

experienced in delivery

Stengard (2003)

Li and Arthur (2005)

Supportive family education

Zhang et al. (1998b) Twelve hours or more of

family/multi family group

psycho-education

Nurse or psychiatrist Zhang et al. (1998b) Zhang et al. (1998b)

Abramowitz and

Coursey (1989)

Nine-fourteen hours of group

education and support

Group leader Abramowitz and

Coursey (1989) –

Anxiety, distressa

McFarlane et al. (1999) Twenty hours or more of

family/multi family group

psycho-education

Psychologists or multi-

disciplinary team

excluding nurses

Gutierrez-Maldonado

and Caqueo-Urizar (2007) a

Bradley et al. (2006) a

Cassidy et al. (2001) Fourteen hours of group

psycho-education

Experienced Therapists Cassidy et al. (2001) b

So et al. (2006) Six-nine psycho-education

sessions

Psychologist So et al. (2006) a So et al. (2006) a

self efficacy

Yamaguchi et al. (2006) Eight hours of lectures, discussion,

behaviour management and

problem solving

Multidisciplinary group

including nurses

Yamaguchi et al. (2006) a,b Yamaguchi

et al. (2006)

-Anxietya,b

Chan et al. (2008) Ten psycho-educational groups Nurses trained in the

intervention

Chan et al. (2008) Chan et al. (2008)

self efficacy

Sota et al. (2008) Six hours or more of an educational

package

Psychiatrists and social

workers

Sota et al. (2008)

Family interventions

Falloon et al. (1984) Twenty-three hours or more of BFT Professionals trained in BFT,

specialist researcher/

psychiatrist

Razali et al. (2000)

Magliano et al.

(2005, 2006)

Magliano et al. (2005)

Ran et al. (2003) Twelve hours or more of group


Psychiatrist trained in the

intervention

Ran et al. (2003)

Atkinson and Coia (1995) Twenty hours of education,

communication, problem solving

and stress coping

Nurses Cheng and

Chan (2005) a

Cheng and Chan (2005) a

and self efficacy

Anderson et al. (1980) Twelve hours or more of group


Nurses, social workers or

specialist researcher/

clinicians

Posner et al. (1992) a Hazel et al.

(2004) – Stress

Community services

Zarit et al. (1983) manual Twelve hours of group support Nurse experienced in

group work

Chou et al. (2002) Chou et al. (2002)-

Depression

Chien et al. (2004) Twenty hours or more of family/multi

family group psycho-education

Chien et al. (2004) a Chien et al. (2004) a;

Chien et al. (2005)

Stein and Test (1980) Over 2 years ACT Multi disciplinary team

including nurses

Jeppesen et al. (2005) –

Subscale reductionsa Numbers appear low with no power calculations reported.b Single sample study.

S.H.

Ma

cleod

eta

l./Intern

atio

na

lJo

urn

al

of

Nu

rsing

Stud

ies4

8(2

01

1)

10

0–

12

01

15


international evidence on the uptake of family interven-tions raises the interesting possibility that these types ofprogrammes may not be acceptable to families because ofthe substantial investment of time and commitmentrequired (Mairs and Bradshaw, 2005). Thus perhaps akey question for nurses is reaching a decision on the type ofsupport which is both acceptable to and effective forcarers. To that one might also introduce the issue of costs.Interestingly none of the studies included in this reviewevaluated the economic impact of these interventions andthis highlights a gap in the available scientific evidence.

There is of course the fundamental issue of whethermental health services across the globe are in a position tooffer support to carers. As indicated in the introductionapproximately 30% of countries do not offer communitybased mental health services and thus are unlikely toengage with carers in a home setting. This is likely to be inthe less economically developed countries. Indeed most ofthe studies included in this review were from the UK,America, Australia, Italy, Denmark, Sweden and Finlandalthough there was a growing number of studies fromChina, Malaysia and India.

This raises the issue of the structural configuration ofmental health services per se (including hospital basedservices) and whether such structures are predisposed tocarer engagement. Evidence suggests not. For exampleSimpson (2005) points to structural difficulties, such as theimpact of case loads and other ‘duties’ which preventedmental health nurses in England from adopting a widercare co-ordinating role. Bee et al. (2008) point to thestructural issues and focus of care which led to poor nurse-patent and carer (our emphasis) interactions in hospitalsettings. Goodwin and Happell (2006) go further andcriticize policies which prioritise the rights of the patientover those of the carer and which prevent mental healthnurses from fully engaging with carers. There is also thevexed issue of compulsory treatment which may focusmore on containing risks than meeting the needs of serviceusers and their carers (O’Brien et al., 2009).

There is the need to address these issues and in doing somake carers more visible in nursing policy and practice.This could be achieved by involving carers in policymaking, service provision and indeed the training ofnurses. For example in a review of the internationalliterature on user and carer involvement in professionaltraining Repper and Breeze (2007) suggest that this willrequire personal commitment and motivation on behalf ofpractitioners as well as strategic and organisationalcommitment. Otherwise the commitment may at bestbe highly localized and at worst appear partonising, Thusin order for nurses to provide effective supports to carers itis important to secure engagement not only from theindividual practitioners but also at organisational levelwhich includes managerial and strategic buy-in.

4.1. Evidence base

Although the studies included in this review represent awide range of designs most studies reporting an effect arebased on randomised or quasi-randomised designs. This isencouraging. Table 7 presents the results of these studies.

While most studies provided details of the intervention,few included adequate details about comparators. This isparticularly problematic within studies comparing theintervention with standard services. This point is raised inBurns and Catty’s (2002) editorial on service structures andis an extremely important issue as there is a growingawareness that carer’s needs could be shaped by the waythat mental health services are provided to people diagnosedwith schizophrenia (Magliano et al., 1998; Roick et al., 2007).Consequently there is merit in distinguishing the parts of anintervention that are dedicated to resolving problems whichare relevant to the carer from those which are relevant to theperson who is diagnosed with schizophrenia.

The majority of studies recruited convenient samples byfirst identifying patients who were diagnosed with schizo-phreniaand thencontactingcarers.Thismaymeanthatsomecarers were missed, particularly where contact was lost withthe patient. In addition, carers were not screened for theseverity of burden or distress. These can vary over the courseof a caring career and thus could affect the differences in keyoutcomes reported across studies. Thus, in the field ofgerontology, Zarit et al. (2003) proposed that recruitment ofcarers should be based on the presence and severity ofintended outcomes. A related issue was that key outcomessuch as burden were measured over a number of studiesusing a variety of scales (Appendix 2). As such, it was notknown whether these measure the ‘‘same’’ carer experi-ences.

5. Conclusions

Research on effective nurse-led support of carers ofpeople diagnosed with schizophrenia is emerging. Thisreview identified potentially effective approaches thatmental health nurses could deliver to help reduce carerburden and improve knowledge, coping and mental health. Acombination of education, mutual support and copingstrategies delivered within an intensive community pro-gramme could effectively reduce carer burden and improvehealth and coping.Nurses couldalso deliver support tocarerswithinstructuredintensiveprogrammessuchasbehaviouralfamily therapy, and these appear to be associated withgreater improvement. Nurses, however, would requiretraining and sufficient time to deliver more intensiveprogrammes to carers. Future research is also required toimprove understanding of the extent that nurses coulddeliver these programmes within their current practice.

6. Recommendations

� T
his review highlights a number of gaps in the evidencebase for effective mental health nurse support for carersof people diagnosed with schizophrenia. There is a needto clarify the theoretical basis of any new interventionand therefore the selection of appropriate outcomes toensure that these can be realistically achieved throughinterventions. � A clear need emerged for studies which examine the
barriers and facilitators in delivering support withinnursing practice and which focus on both practitionersand health systems.


� P
ractitioners and researchers need to distinguish theelements of an intervention which are carer focused,patient focused or both. Related to this is the need toprovide more detail on any interventions that may beused as comparators. � C arers should be recruited based on the presence and
severity of intended outcomes and interventions need toinclude carers who may be out of contact with mentalhealth services.
� It would be encouraging to see more research from
developing countries
� T here is the need to assess the economic impact of carer
support interventions.

Conflict of interest. None declared.

Appendix 1 and 2. Supplementary data

Supplementary data associated with this article can be

found, in the online version, at doi:10.1016/j.ijnurstu.

2010.09.005.

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