ryan askey, janet holmshaw, catherine gamble …...ryan askey,a janet holmshaw,b catherine gamblec...

What do carers of people with psychosis need frommental health services? Exploring the views ofcarers, service users and professionals

Ryan Askey,a Janet Holmshaw,b Catherine Gamblec

and Richard Grayd

Introduction

The development of anti-psychotic medications and deinstitutionali-zation has shifted the primary focus of mental health treatment fromhospital to the community. As a consequence, carers have become anintegral part of the care system (Thornicroft and Tansella, 2005).Historically, interventions for families with people with psychosis havetended to focus on service user outcomes that attempt to reduce orprevent relapse (Askey et al., 2007). As a consequence, carers often feelignored or marginalized by services (Shepherd et al., 1995; Beck andMinghella, 1998; Henwood, 1998). This problem has recently beenrecognized, and it has been highlighted that there is a need for moreinvolvement with carers of clients with mental illness (DoH, 1999).However, there continues to be a lack of knowledge about carers’needs and how professionals specifically meet carers’ needs (Cham-bers et al., 2001). This article presents the results of a study aimed atexploring the views and experiences of carers, service users andprofessionals with regard to what carers of people with psychosis needfrom mental health services. It will initially review the literature oncarer burden and needs, as well as interventions such as familyintervention and carers’ assessments/care plans which have beendeveloped to address carer needs.

r The Association for Family Therapy 2009. Published by Blackwell Publishing, 9600 GarsingtonRoad, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.Journal of Family Therapy (2009) 31: 310–3310163-4445 (print); 1467-6427 (online)

a High Intensity Worker, Haringey Teaching Primary Care TrustImproving Access to Psychological Therapies (IAPT), London. Email: [email protected].

b Senior Lecturer, Middlesex University, UK.c Nurse Consultant, South West London and St George’s Mental Health Trust,

Springfield Hospital, London, UK.d Professor of Research and Deputy Associate Dean for Research, Faculty of Health,

School of Nursing and Midwifery, University of East Anglia, UK.

r 2009 The Authors. Journal compilation r 2009 The Association for Family Therapy and Systemic Practice

mailto:[email protected]













Carer burden

The concept of carer burden was defined by Platt (1985) as thepresence of problems, difficulties or negative events that influence thelife of a family member when taking care of the client. Factorsaffecting burden include a number of client illness variables, such asseverity of symptoms, length of hospitalization, number of previoushospitalizations and length of illness (Dyck et al., 1999). Other factorssuch as carers’ causal attributions have also been linked to increasedcarer burden and relapse for service users (Weiner, 1980). For example,if carers perceived service users’ negative symptoms as being control-lable and were highly critical and hostile towards them, there was ahigher chance of relapse (Barrowclough et al., 1994).

It is estimated that up to 1.5 million people in the UK may becaring for a service user with a mental illness (Maher and Green,2002). Fifty-seven per cent of carers of service users with psychosisliving within an inner city have regular contact with their relative, and33 per cent of carers actually live in the same household (Garety andRigg, 2001). Unless the amount of care provided by statutory servicesincreases substantially, it is likely that there will be greater pressure forsupport to be provided by carers (Maher and Green, 2002). Thispressure is increased by the growing incidence of psychosis withininner cities. The reported incidence has doubled since 1970 with ratesof 40 per 100,000 (Boydell et al., 2003).

The effects on carer burden with a relative affected by psychosishave been reviewed extensively since mental health services havebecome more community focused. Such burden frequently results inpsychosocial distress, reduced quality of life, and significant impactson the health and functioning of the caregiver (Hoenig and Hamilton,1966; Fadden et al., 1987; Maurin and Boyd, 1990). A better under-standing of carer burden can contribute towards mental healthservices improving practice to meet carer needs (Lowyck et al.,2004). Carer burden has been considered in terms of objective andsubjective factors (Fadden et al., 1987; Schene et al., 1994; Magliano etal., 1998). Objective burden refers to the client’s behaviour and therespective consequences on carers’ financial, health and leisureactivities. Subjective burden refers to the psychological reactions facedby carers such as feelings of loss, anxiety and embarrassment. Higherlevels of objective and subjective burden have also been found to beassociated with high expressed emotion, which in turn increases therisk of relapse in psychosis (Kavanagh, 1992).

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The relationship between mental health services and carers can beuneasy, with relatives often expressing criticism of the relationshipwith health professionals (MacInnes, 1998). Cohen and Thomas(1996) reported that families receive too little information frommental health services about psychosis, which increases carers’ senseof burden and distress. There has been a call for an improvement inthe level and quality of information that carers receive from profes-sionals (Pryjmachuk, 1996).

Carer needs

It is recommended that professionals become more proactive inassessing and meeting the emotional needs of carers (Chamberset al., 2001). Factors that have been found to increase carer burdenare perceived lack of information and skills, and lack of emotionalsupport, respite breaks and financial support (Chambers et al., 2001;Rose, 1999, Schneider et al., 1999).

A key tension between carers, service users and professionals seemsto be around sharing information and confidentiality. Carers oftenfeel marginalized by professionals, despite government initiatives thatrecognize the importance of the caring role. Evidence suggests thatdetails of treatments, symptoms and long-term care are frequently notshared with them (Simpson, 1999; Pinfold et al., 2004; Repper et al.,2005). A recent survey suggests that carers feel confidentiality is usedas a reason for professionals not to share information (Rethink, 2003).However, carers may also be reluctant to share information withprofessionals in fear of breaking family loyalty, the reprisals of closerelations, and hospital admissions of their relative (Rapaport, 2002).Pinfold et al. (2004) carried out a substantive study to understandmore about information sharing between professionals and carers ofservice users with psychosis in an attempt to improve good practice.Carers often felt disappointed by the attitude of professionals and thesupport services provided. They also describe feeling that profes-sionals did not take them seriously and viewed them negatively.

A number of studies have highlighted that carers recall feelingdespair and being unclear about what was happening to their relativein the early stages of psychosis, and being unsure what to do or who toturn to for support. As time went on, the carers reported thatprofessionals did not recognize their role as the main source ofsupport (Addington et al., 2001; Repper et al., 2005).

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Family interventions

During the late 1960s and early 1970s, investigations were made as towhether family atmospheres could influence the course of illness inschizophrenia. It was found that service users living with relatives whodisplayed high levels of criticism, hostility or over-involvement re-lapsed more than service users whose families were less expressive oftheir emotions. These behaviours were named ‘High ExpressedEmotion’ (High EE) (Brown et al., 1972). Expressed emotion doesnot tell us much about the causes of schizophrenia, but it can be apredictor of its course when someone with the illness lives withrelatives. Low Expressed Emotion (Low EE) relatives tend to displayhigher levels of warmth and higher level positive coping strategies(Kuipers et al., 2002).

These early generation findings led to the development of FamilyIntervention (FI) approaches to reduce relapses. They aimed toincrease service users’ social functioning, to reduce family burden,and to improve quality of life of service users and their relatives. FI isbased on a broad psychoeducational and cognitive behaviouraltherapy (CBT) approach (Midence, 2006). It is acknowledged thateducating families about the illness alone does not reduce levels of EEin families with High EE (Kuipers et al., 2002). However, working withthem to tackle practical problems such as improving communication,effectively developing coping skills and helping families to attributethe symptoms to illness can decrease their critical or over-involvedbehaviours. These interventions can reduce relapses for this popula-tion (Kuipers et al., 2002). As awareness and knowledge increase,tension and stress throughout the family decrease, improving thequality of life for all concerned (Barrowclough and Tarrier, 1997).The reduction in families’ ambient and chronic stress levels and areduction of face-to-face contact to fewer than thirty-five hours perweek can enable the service user to cope better with unavoidablestressors and reduces their risk of relapse (Falloon et al., 1984).

The published results of early FI studies are unequivocal indemonstrating superiority over medication alone in preventing re-lapses (Goldstein et al., 1978; Falloon et al., 1982; Leff et al., 1982;Hogarty et al., 1986). The studies demonstrate that relapse rates canbe reduced by 20 per cent if families receive FI (Addington andBurnett, 2004). However, Pharoah et al. (2003) suggest that there isinsufficient data to definitively state that FIs are any more efficaciousover standard care. They also note difficulties in assessing the efficacy



of FI. Within their meta-analysis, after reviewing twelve studies thatwere conducted in Europe, Asia and North America they foundcomparability and replication difficult due to the varying treatmentmodels used. They concluded that it is unclear if the positive effect ofFI may be facilitated by a change in the frequency or quality of contactbetween service users and mental health professionals in general.Results indicated that family intervention might reduce the risk ofrelapse and improve concordance with medication. However, datawere often inadequately reported. As this package of care is widelyemployed they suggest that further studies be conducted to properlyclarify several of the short-term and long-term outcomes.

Carer support services

The government now recognizes that carers have needs in their ownright and has therefore set out a number of policies and legislativeframeworks in an attempt to identify and meet their needs. Under theCarers (Recognition and Services) Act (1995) carers gained the rightto a separate assessment of their own needs (DoH, 1995). The Carersand Disabled Children Act (2000) indicates that carers have the rightto assessment even if their relative refuses to be assessed or acceptservices (DoH, 2000a). Standard six of the National Service Frame-work for Mental Health (1999) focuses on carers of service users whohave mental health issues. It states that people providing regular carefor a service user under the Care Programme Approach should havean assessment of their caring, physical and mental health needsrepeated on an annual basis (DoH, 1999). The government suggeststhat these policies and legislation have improved resources for carers’support by d5 million (DoH, 2004). The NHS Plan (DoH, 2000b) setout a national target of employing 700 carers’ support workers before2005, but this has not been fully implemented (DoH, 2004). It is alsorecognized that further research is needed to evaluate the benefits ofcarers’ breaks, support, education and training programmes (DoH,2004). An important contribution to further understanding in thisarea is Mottaghipour and Bickerton’s (2005) ‘pyramid of family care’,which explores the provision of different levels of intervention tomeet families’ needs. It is a useful framework in guiding professionalsin involving families in their everyday practice. The pyramid outlinesa minimum level of care for families and in hierarchical order buildson higher levels of care to specialist family interventions.

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It is estimated that carers save the government d57 billion a year,which is the cost of providing equivalent professional care; however, ithas been highlighted that they are getting little return for theirinvestment. Despite the recent policy changes, carers have arguedthat the progress in investment is too slow, with many still unaware oftheir rights, and some suggest there has been no positive change at all(Carers UK, 2003).

Training and supervision needs

A major theme from the literature is that FI trained staff feelfrustrated that they could not systematically deliver FI due to reasonssuch as high caseloads, time pressures, lack of clinical supervision andminimal support from management (Kavanagh et al., 1993; Brennanand Gamble, 1997; Fadden, 1997, 2006; Mairs and Bradshaw, 2005).Moreover, it is also known that pre-qualification training for mostprofessionals provides them with little or no contact with carers(Winefield and Burnett, 1996), and thus little opportunity for devel-opment of skills and expertise in this area, and many professionals areoverwhelmed by the prospect of having to work with families (Gold-stein and Miklowitz, 1994).

Evidence suggests that the rates of FI following completion oftraining courses are significantly low (Baguley et al., 2000; Bailey et al.,2003; Brooker et al., 2003; Mairs and Bradshaw, 2005). Mairs andBradshaw (2005) reviewed six studies that investigated rates of FIbeing implemented following training courses. They found thatfollowing training, the mean number of families seen for a minimumof three sessions ranged from 1.4 (Kavanagh et al., 1993) to 3.5 (Baileyet al., 2003) per co-worker. This is also worrying as, in accordance withthe NICE guidelines FI should be of at least six months in duration,with ten planned sessions, using two co-workers for significant changeto take place (National Institute of Clinical Excellence, 2002).

In establishing FI services, the innovative Somerset service (Bur-bach and Stanbridge, 1998, 2006; Stanbridge et al., 2003) found thattraining is more likely to change practice if it is accompanied bybacking and encouragement by management at all levels, with aformal strategy and a lead person to move it forward. Workplaceissues also need to be addressed; for example, team managers mustensure that staff have manageable workloads and sufficient super-vision (Stanbridge and Burbach, 2007). They found that in-houseteam-based training and ongoing supervision enabled the necessary



changes in culture and practice for service development (Quarry andBurbach, 1998; Burbach et al., 2002).

Study aims

Despite a considerable body of research involving carers, familiescontinue to report that their needs are not being understood and metby mental health services (Repper et al., 2005). Although studies haveprovided important information about factors that affect carers, theyhave largely failed to provide professionals with a deeper under-standing of how carers themselves experience the situation. Thisarticle presents findings from a qualitative research study comprisingfocus group discussions and interviews with carers, service users andmental health professionals. The aim of the study was to gain abroader understanding of the needs of carers of people with psychosis.

Methodology

A qualitative approach, using focus group discussions and individualinterviews, was adopted for this study. The rationale for using thisapproach is that while there have been a number of randomizedcontrolled trials (RCTs) of FI for people with psychosis there are stillunanswered questions as to what a carer needs. The intention ofqualitative research tends to be on the understanding of meaningembedded in participants’ experiences through open-ended, unstruc-tured and subjective approaches (Lincoln and Guba, 1985). Thepresent study sought to explore these experiences with the aim ofdeveloping a richer understanding of carer needs.

Qualitative approaches have provided important insights intoparticipants’ experiences in similar areas. Notably, Stern et al.’s(1999) investigation of carers’ accounts of serious mental illness in afamily member explored semi-structured interviews using a narrativeanalysis to uncover how carers make sense of their experiences byconstructing life stories. Common themes were evident in carers’stories and two types of narrative were identified: stories of recon-struction where experiences of their relative’s illness were trans-formed into meaningful phenomena; and stories of disruptionwhere the illness was experienced as a series of random events.Such findings have considerable potential for aiding our understand-ing of carers’ experiences and for informing therapeutic work withcarers, for example, around coping strategies, and also for FI.

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A total of fifty-six participants took part in the study. All wererecruited within two London NHS Trusts by advertising within thelocal mental health services and support groups. Ethical approval forthis study was obtained from the relevant NHS Research EthicsCommittees for the two Trusts and permissions gained from theResearch and Development Committees of each of the Trusts. In-formed consent was gained from all participants before taking part inthe focus groups and interviews.

Six focus group discussions were held: three for carers, two forprofessionals and one for service users. These were supplemented byindividual interviews with service users and carers who had expressedan interest in taking part in the study but who were not able to attendthe focus groups. The inclusion criteria for the three groups ofparticipants were as follows:

� Carers: self-defined carer of someone with psychosis currently incontact with local mental health services.

� Service users: people with a diagnosis of psychosis (aged 18–64)currently in contact with local mental health services.

� Professionals: members of different mental health professionalgroups currently working with people with psychosis in localmental health services.

A total of twenty-two carers took part in the study (fourteen in thecarer focus groups and a further seven were interviewed). Their agesranged from 35–67 (mean 51 years, std dev 9.3 years); sixteen werewomen; ten were currently living with the person with psychosis; andtheir length of time in this carer role ranged from one to twenty years(mean 7.6 years, std dev 6.3 years). Thirteen carers identified theirethnic group as white (nine as British, two as Irish, two as ‘Other’);three carers identified themselves as black (two as Caribbean, one asAfrican); three as Asian (Indian, Bangladeshi and mixed), and therewere missing data for three carers.

Twelve service users participated (five in focus group discussionand seven in interviews). Their ages ranged from 24–48 (mean 32years, std dev 7.7); half were women; five were living with a carer; andtheir length of time in contact with mental health services rangedfrom one to thirty-two years (mean 7 years, std dev 6.1 years). Fourservice users identified their ethnic group as white (two as British, twoas ‘Other’); three identified themselves as black (one as Caribbean,one as African, one as ‘Other’); two as Asian (Pakistani and Bangladeshi);



two as ‘mixed white and black Caribbean’ and one as ‘mixed white andblack Asian’.

Of the twenty-two professionals who took part in the focus groups,all were qualified; fifteen were nurses and the rest were made up ofroughly equal numbers of occupational therapists, social workers andpsychologists. Nineteen worked full time; sixteen were women; andtheir length of time working in mental health services ranged fromone to twenty-two years (mean 7 years, std dev 6.1). Fourteenprofessional participants identified their ethnic group as white (thir-teen as British, one as Irish); six identified themselves as black (five asAfrican and one as Caribbean); one as Asian, and there were missingdata for one professional.

The focus group discussions lasted for about one-and-a-half hours.Participants in the focus groups were asked to generate statementsfocusing on the needs of carers of people with psychosis. Thesestatements were written on a flip chart during the course of thediscussion, and towards the end of the focus group the statementswere reviewed with participants to ensure an accurate record of thediscussion and whether there were any other key points they wantedto add. The individual interviews lasted for about thirty minutes andfocused on the same question of carers’ needs. Notes were takenduring the interviews and again these were checked by the inter-viewees at the end of the interviews.

The main challenges to qualitative research are around the dataanalysis process as researchers take a plethora of text-based data andattempt to reduce it to a manageable form while trying not to lose itsmeaning (Daley, 2004). In this way data tend to be analysed through aninductive, ongoing and evolving process of identifying themes within aparticular context (Miles and Huberman, 1994). For the purpose of thepresent study a basic thematic qualitative approach was used to analysethe statements generated by all participants. Thematic analysis is amethod of identifying, analysing and reporting patterns within data(Braun and Clarke, 2006). The type of coding and thematic analysisthat was established was determined by the aims of the study, i.e. tounderstand the meaning of the participants’ views of what are theneeds of carers of people with psychosis; therefore a rich description ofthe overall dataset was established rather than a particular aspect of thedata. This rationale is supported by Braun and Clarke (2006) whohighlight the advantages and disadvantages for both approaches. Themain disadvantage for the chosen method is that some of the depth andcomplexity can be lost but that a rich overall description is maintained.

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The notes and statements from all the focus groups and interviewswere collected together and coded according to the key themesemerging from the data and the earlier literature survey. The codingand analysis was carried out at different levels. The first order codingenabled us to capture chunks of meaning from the statements thatwere purely descriptive. The second order coding allowed someinterpretation of the meaning of the participants’ statements bycapturing the meaning of larger segments of data into super ordinateconstructs. The final level of coding enabled us to draw on theoverarching themes within the data with specific examples ofthe statements. The themes that emerged from the statements weresupported by a process of reading and rereading and comparingcodes, constructs and emerging themes. This process was also sup-ported by the researchers’ colleagues who independently foundsimilar emerging themes when they analysed the statements. Therationale for including these additional analyses was to make theprocess more robust and reduce some of the subjectivity in theanalysis.

Results and discussion

Improving care for service users

For carer participants, the main area of concern was around the careand services available for their relatives. This was seen in terms of boththe consequences for the service users themselves and also for carers’own sense of burden.

‘If service users are unstressed then carers are unstressed, which means profes-sionals will be able to provide better care.’

(Carer)

A major source of anxiety, stress and physical and emotional burdenwas when their relatives were not provided with sufficient help whenneeded, or when the standard of care provided was poor. Inparticular, carers talked about the unacceptable standard of manyinpatient services. This increased feelings of guilt, burden and stressfor carers when their relatives were admitted. Ward environmentswere frequently experienced as frightening places that did not aidrecovery, and where patients’ basic needs were not being met. Some-times their relatives were admitted to places at a distance from theirfamily home, which caused immense stress for both the carer and



service user. The process of admitting service users to hospital wassometimes seen as traumatic and not useful for the service users ortheir families.

‘Carers require that the ward environment adheres to the basic standards such asgood toilet facilities and privacy. Carers feel upset when the inpatient environmentis unkempt.’

(Carer)

‘Sometimes the system can cause more trauma than the actual illness such assectioning the person with the police at home where all the neighbours can see.’

(Carer)

Once in hospital, another source of concern for carers was aroundpreparation for discharge. Most of the carer participants had experi-enced problems in this area, feeling that their relative had beendischarged prematurely or with little notice, or that there had beeninsufficient discharge planning. They suggested that professionalsshould take more time in assessing service users’ functioning andmental state so that they would be more aware of their needs prior todischarge, and that people’s long-term needs should be taken moreinto consideration, especially regarding support for improving theirdaily functioning and social inclusion.

‘I’m happy as X is getting help but I would like him to do more outside activities.I’ve noticed he does well if he is doing more with his time which motivates him andseems to make him better within himself. When X is happy this makes me happy.When he’s down this makes me down and he seems to find it hard to get out of it. Ifhe was offered to do more with his time this would help him.’

(Carer)

Carer participants also argued that services should have intervenedearlier in the course of the illness as the delay in accessing treatmenthad caused families a great deal of distress. Most felt that initiallygetting access to care was difficult when they knew something was notright with their relative. Several carers indicated that they were upsetand angry as they felt that professionals did not listen to them. Carersof service users with an early onset psychosis also argued that serviceshould be more age-appropriate for young people.

A major difference between the three participant groups was thatcarers passionately argued that if their relative received improvedcare, then carers themselves would feel less stressed and burdened. Toa lesser degree service user participants also argued that better care

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for themselves would reduce burden for their carer. However, theprofessional groups only briefly touched on this subject but not in anyspecific detail. Within this study most carers suggested that it wasimpossible to separate the needs of carers and service users and thatservices should see them as being the same if progress was to be made.This is a different perspective to that found in the carers’ needsliterature which tends to emphasize that carers and service users havevery different needs (e.g. McFadyen and Farrington, 1997). Whilemost of the literature does not directly focus on service users’ needs asan issue, it may be argued that poorer service user functioning canincrease carer burden (Platt, 1985; Schene et al., 1998) and a betterunderstanding of carer burden can contribute towards mental healthservices improving practice to meet carer needs (Lowyck et al., 2004).However, the literature does not argue that improved service usercare will directly reduce burden for carers. The only study that hasdirectly linked this to carer needs was by Repper et al. (2005). Theirresults concluded similar concerns expressed by carers in the presentstudy, i.e. that there should be provision of adequate services for theirrelatives.

Carer involvement

There was solid consensus among the different participant groupsabout the importance of improving carer involvement in theirrelatives’ care. Carer participants voiced a strong wish to be moreinvolved in the care of their relatives. They frequently felt that theywere either excluded or that professionals did not take them seriously.They suggested that as they knew their relatives well and demon-strated expertise in their care delivery they should be seen as a part ofthe multi-disciplinary team and respected by professionals. All toooften they found that confidentiality was used as a reason forprofessionals excluding them from information.

Carers also found it difficult to build trust with professionals as theyfrequently saw different members of the team.

‘There is no consistency who’s in the team as sometimes you can see a differentdoctor every time. There needs to be more consistency. Once you’re in the systemyou’re too scared to drop out in case things get worse. X was discharged severaltimes and this made things worse. Teams should hold on to service users for alonger time.’

(Carer)



The professional groups also acknowledged that there was an issuewith continuity of care and that sometimes carers became confusedabout who were the main contacts within the team. They suggestedmore of an effort was needed to tackle this problem. Professionalparticipants also wanted carers to be more involved within the careprocess, and for this to happen they suggested that they needed toimprove their relationship with them and be more flexible andfriendly in their approach. They indicated that carers were expertsin their delivery of care and that they should be valued. Another issuethe professionals raised was that carers could withdraw or stop beingcarers if they found the role too stressful.

‘Carers should feel safe at saying no to caring and not to feel judged byprofessionals.’

(Professional)

Similarly, the service user participants also argued that carers shouldbe involved and kept informed of their relatives’ progress. They alsohighlighted that carers should be able to set limits with their relativesif they were becoming too stressed or burdened.

The theme of carers not being sufficiently involved is mirrored bythe literature and there is a recommendation by the government totackle this problem (DoH, 1999). Despite this there is a plethora ofliterature which suggests that carers still feel marginalized andexcluded from the care process (Shepherd et al., 1994; Winefieldand Harvey, 1994; Beck and Minghella, 1998; Henwood, 1998;Simpson, 1999; Arksey et al., 2002; Pinfold et al., 2004; Repper etal., 2005). However, when carers felt more involved in care relation-ships with professionals there was an increased sense of satisfactionwith services (Stanbridge et al., 2003; Noble and Douglas, 2004).

Emotional and practical support

Carer participants talked about needing professionals to listen to theirneeds and be generally supportive. They often felt that professionalsdid not have the time to talk with them, which caused them frustrationand upset. Some carers talked about the emotional effects mentalillness had on their own well-being and requested that professionalshelp them to deal with their sense of loss and offer them reassurance.

A common theme in the discussions was that carers did not receivehelp early in the course of their relative’s mental health condition anddid not know who to contact for help during the initial stages.

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‘In the past we did not know who to talk to about X’s problems and our worries andconcerns. The GP didn’t listen. It would be useful to know who else to contact.’

(Carer)

A recurring theme for the carer participants was difficulty in accessingcare in a crisis.

‘It’s not clear where to look when there’s a crisis especially out of hours. Crisisdoesn’t have a specific time. There should be clearer information for everybody.’

(Carer)

Some carers felt that professionals relied on them too much in a crisis,which they found stressful and distressing. Others reported that theywere only contacted by professionals in a crisis and not for theirgeneral needs.

Similar points were raised in the professionals’ focus groups;however, most of these statements were about practical support ratherthan about carers’ emotional needs. Again the theme of crisis and riskemerged. Professionals believed that carers needed to know the risksservice users could pose and how they could access services to reducerisk. They argued that twenty-four-hour care was paramount and thatcarers should be aware of the crisis and contingency plans.

The service user participants also raised the issue of crisis inter-vention and especially of carers’ views being taken seriously byprofessionals.

‘Carers should be able to get help when in a crisis as teams often don’t get back tothem.’

(Service user)

Service users also felt that professionals should engage and supportcarers throughout the time that their relatives were in contact withmental health services, whereas from their own experience they sawthat professionals tended to only contact their carers if a crisisdeveloped.

The theme of crisis is prevalent within the literature. Carers wantedto learn skills for dealing with their relatives’ symptoms (Noble andDouglas, 2004) and not just to be contacted in a crisis (Repper et al.,2005). Carers wanted earlier professional intervention to avoid crises(Winefield and Harvey, 1994), and Kuipers et al. (2002) discuss theaim of FI, which is to enable families to build a repertoire of copingskills to reduce burden and relapse.



To be treated with respect

Throughout the focus groups and individual interviews the theme ofrespectfulness recurred. Carers argued passionately that professionalsand services should be more respectful and listen more to what carerswere saying. They believed that some professionals acted as if they didnot care and were frequently critical of them. They also found thatprofessionals frequently assumed what carers were thinking whichmade them feel angry.

‘Sometimes the professionals don’t listen and understand what’s actually happen-ing with X. They should listen to what carers are saying more. It makes me feelfrustrated.’

(Carer)

The professional groups also raised this issue of respectfulness. Theystated that they should be more understanding and listen to carers’points of view and that they needed to improve their relationship withthem and appreciate the work that carers do. They continued byhighlighting that professionals should concentrate on the carers’strengths and holistic needs.

The theme that carers do not feel listened to by professionals abouttheir needs is evident within the literature (Shepherd et al., 1994;MacInnes, 1998). This also fits well with Forrest and Masters’ (2004)finding that both carers and service users valued the process of theinterventions over the actual outcome of FI. In other words, theyvalued the qualities of the professionals and the sense that they werebeing listened to.

Information, education and training needs

A major theme emerging from the carer participants was aroundinformation-sharing and educational material. Carers found thathaving information about the illness and treatments was really useful,but that more attention was needed in how to impart such informa-tion. Some carers received little or no information from professionals,while others were given too much at one go, which they foundoverwhelming, especially during the initial phases of the illness.Some of the carers had also received conflicting and confusinginformation from different members of the multi-disciplinary team,which they found difficult and stressful.

As well as information on specific treatments, carers also wantedinformation and education about how to understand early warning

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signs and how to prevent relapse, and also on how to deal withdifficult behaviours that their relatives sometimes presented with.

‘Carers need to know when to help their relative and know what to say to them.’(Carer)

‘Carers should be given advice in how to diffuse difficult situations with theirrelative.’

(Carer)

One of the main concerns raised by the professional groups wasaround confidentiality and information-sharing with carers.

‘Carers should be aware that not all information needs to be shared with them.’(Professional)

However, they also believed that it would be useful if carers receivedinformation about psychosis and treatments available, and that thisshould happen during the initial stages of the illness and throughoutthe time that they were in contact with services. Professionals wereaware that it could be very distressing for families to be told that theirrelative has psychosis and that this should be done in a very sensitivemanner. The issue of legal information was raised and how this can beconfusing and frightening for carers.

The service user participants also highlighted the importance ofproviding carers with information on psychosis, and also that it wouldbe useful for carers to receive training to provide them with strategiesin dealing with service user distress and understanding more aboutearly warning signs and relapse prevention. While they thought thatthe main purpose of giving carers information and training would be toreduce their burden it was felt that this would also ease the stress on theservice users, as at times they found the carers’ behaviours unhelpful.

‘Carers need to be strong people because if I said leave me alone or I would getangry they would have to be able to take it. If they got angry this would make meworse. Professionals should give advice and tell carers that this behaviour doesn’twork. Carers need to be able to take a step back.’

(Service user)

‘My sisters didn’t understand about the illness and would shout and blame mymother for my illness. Professionals should be able to educate them about the illnessand how it happens.’

(Service user)



These themes are again echoed within the literature and support theimportance of offering FI (Kuipers et al., 2002). Issues aroundconfidentiality as a barrier to giving information are also well docu-mented (Rethink, 2003; Pinfold et al., 2004). Interestingly, serviceuser participants in the present study felt that carers should beinvolved throughout the care process and did not see confidentialityas a barrier to this. This finding is different to Pinfold et al’s (2004),who found that a high percentage of service users did not wantinformation passed on to carers.

Conclusion

The overarching theme from the findings is that carers and serviceusers do not believe that service users’ basic needs are being met,which causes them a great deal of distress and anger towards servicesand increases carer burden. Carers asserted that the needs of serviceusers and carers are interconnected and should not be seen asseparate. Furthermore, carers felt strongly that professionals tendnot to listen, involve or respect them in the care of their relatives,which in turn increases carers’ sense of burden and distress. All threestakeholder groups agreed that it would be useful if carers receivedtraining in coping strategies and more information on psychosis andthe course of the illness. However, there were differences in opinionbetween the three different stakeholders. Carers and service usersargued for consistent information, while professionals raised the issuethat concerns about confidentiality would override information-sharing with carers. All three stakeholder groups asserted that familiesshould be given more support and information at the earliest possibleopportunity as this could reduce overall distress for the family at atime when things are stressful for all significant others. Similarly, it wasfelt that education and training for carers could be immensely useful,with service users in particular believing that training carers in dealingwith difficult behaviours would help to reduce stress within thehousehold.

The main concern arising from these findings is that most of theseissues have been described and argued within the carer literature overthe past twenty years and not much has changed in spite of increasedgovernment activity and policy in these areas. Carers and service usersstill feel disempowered despite these acknowledgements. As servicesare not able to offer FI to all families, how can services develop to meetcarers’ needs? One option is to embed family-inclusive routine

326 R. Askey et al.


practice within existing services. Despite the well-documented diffi-culties in implementing FI it is important to take note of theinnovative but complementary projects in Somerset (Burbach andStanbridge, 2008). First is the well-established FI in psychosis service,where they have sustainably implemented FI for psychosis services.The second is where they have started to develop family-inclusivemainstream mental health services. This aims to ensure that familiesare involved as ‘partners in care’ and that families’ basic needs forinformation and support are routinely met by all mental health teams/services (Burbach and Stanbridge, 2008). Similarly, incorporating the‘pyramid of family care’ set out by Mottaghipour and Bickerton(2005) would offer a useful way of structuring family-inclusive servicesthat uses a hierarchical framework for targeting different levels ofcare. However, for family interventions to be successful and to sustaingood standards of delivery, manageable workloads and sufficientsupervision are key requirements (Stanbridge and Burbach, 2007).In-house training and supervision contribute towards the necessarychanges in culture and practice for service development, which needsthe backing and encouragement by management at all levels (Stan-bridge et al., 2003).

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