r The Association for Family Therapy 2009. Published by Blackwell Publishing, 9600 Garsington
Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.
Journal of Family Therapy (2009) 31: 310–331
0163-4445 (print); 1467-6427 (online)
What do carers of people with psychosis need from
mental health services? Exploring the views of
carers, service users and professionals
Ryan Askey,a Janet Holmshaw,b Catherine Gamblec
and Richard Grayd
Introduction
The development of anti-psychotic medications and deinstitutionalization has shifted the primary focus of mental health treatment from
hospital to the community. As a consequence, carers have become an
integral part of the care system (Thornicroft and Tansella, 2005).
Historically, interventions for families with people with psychosis have
tended to focus on service user outcomes that attempt to reduce or
prevent relapse (Askey et al., 2007). As a consequence, carers often feel
ignored or marginalized by services (Shepherd et al., 1995; Beck and
Minghella, 1998; Henwood, 1998). This problem has recently been
recognized, and it has been highlighted that there is a need for more
involvement 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 (Chambers et al., 2001). This article presents the results of a study aimed at
exploring the views and experiences of carers, service users and
professionals with regard to what carers of people with psychosis need
from mental health services. It will initially review the literature on
carer burden and needs, as well as interventions such as family
intervention and carers’ assessments/care plans which have been
developed to address carer needs.
a
High Intensity Worker, Haringey Teaching Primary Care Trust
Improving Access to Psychological Therapies (IAPT), London. Email: ringo.askey@hot
mail.co.uk.
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.
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Carer burden
The concept of carer burden was defined by Platt (1985) as the
presence of problems, difficulties or negative events that influence the
life of a family member when taking care of the client. Factors
affecting burden include a number of client illness variables, such as
severity of symptoms, length of hospitalization, number of previous
hospitalizations and length of illness (Dyck et al., 1999). Other factors
such as carers’ causal attributions have also been linked to increased
carer burden and relapse for service users (Weiner, 1980). For example,
if carers perceived service users’ negative symptoms as being controllable and were highly critical and hostile towards them, there was a
higher chance of relapse (Barrowclough et al., 1994).
It is estimated that up to 1.5 million people in the UK may be
caring for a service user with a mental illness (Maher and Green,
2002). Fifty-seven per cent of carers of service users with psychosis
living within an inner city have regular contact with their relative, and
33 per cent of carers actually live in the same household (Garety and
Rigg, 2001). Unless the amount of care provided by statutory services
increases substantially, it is likely that there will be greater pressure for
support to be provided by carers (Maher and Green, 2002). This
pressure is increased by the growing incidence of psychosis within
inner cities. The reported incidence has doubled since 1970 with rates
of 40 per 100,000 (Boydell et al., 2003).
The effects on carer burden with a relative affected by psychosis
have been reviewed extensively since mental health services have
become more community focused. Such burden frequently results in
psychosocial distress, reduced quality of life, and significant impacts
on the health and functioning of the caregiver (Hoenig and Hamilton,
1966; Fadden et al., 1987; Maurin and Boyd, 1990). A better understanding of carer burden can contribute towards mental health
services improving practice to meet carer needs (Lowyck et al.,
2004). Carer burden has been considered in terms of objective and
subjective factors (Fadden et al., 1987; Schene et al., 1994; Magliano et
al., 1998). Objective burden refers to the client’s behaviour and the
respective consequences on carers’ financial, health and leisure
activities. Subjective burden refers to the psychological reactions faced
by carers such as feelings of loss, anxiety and embarrassment. Higher
levels of objective and subjective burden have also been found to be
associated with high expressed emotion, which in turn increases the
risk of relapse in psychosis (Kavanagh, 1992).
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The relationship between mental health services and carers can be
uneasy, with relatives often expressing criticism of the relationship
with health professionals (MacInnes, 1998). Cohen and Thomas
(1996) reported that families receive too little information from
mental health services about psychosis, which increases carers’ sense
of burden and distress. There has been a call for an improvement in
the level and quality of information that carers receive from professionals (Pryjmachuk, 1996).
Carer needs
It is recommended that professionals become more proactive in
assessing and meeting the emotional needs of carers (Chambers
et al., 2001). Factors that have been found to increase carer burden
are perceived lack of information and skills, and lack of emotional
support, respite breaks and financial support (Chambers et al., 2001;
Rose, 1999, Schneider et al., 1999).
A key tension between carers, service users and professionals seems
to be around sharing information and confidentiality. Carers often
feel marginalized by professionals, despite government initiatives that
recognize the importance of the caring role. Evidence suggests that
details of treatments, symptoms and long-term care are frequently not
shared with them (Simpson, 1999; Pinfold et al., 2004; Repper et al.,
2005). A recent survey suggests that carers feel confidentiality is used
as a reason for professionals not to share information (Rethink, 2003).
However, carers may also be reluctant to share information with
professionals in fear of breaking family loyalty, the reprisals of close
relations, and hospital admissions of their relative (Rapaport, 2002).
Pinfold et al. (2004) carried out a substantive study to understand
more about information sharing between professionals and carers of
service users with psychosis in an attempt to improve good practice.
Carers often felt disappointed by the attitude of professionals and the
support services provided. They also describe feeling that professionals did not take them seriously and viewed them negatively.
A number of studies have highlighted that carers recall feeling
despair and being unclear about what was happening to their relative
in the early stages of psychosis, and being unsure what to do or who to
turn to for support. As time went on, the carers reported that
professionals did not recognize their role as the main source of
support (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 to
whether family atmospheres could influence the course of illness in
schizophrenia. It was found that service users living with relatives who
displayed high levels of criticism, hostility or over-involvement relapsed more than service users whose families were less expressive of
their emotions. These behaviours were named ‘High Expressed
Emotion’ (High EE) (Brown et al., 1972). Expressed emotion does
not tell us much about the causes of schizophrenia, but it can be a
predictor of its course when someone with the illness lives with
relatives. Low Expressed Emotion (Low EE) relatives tend to display
higher levels of warmth and higher level positive coping strategies
(Kuipers et al., 2002).
These early generation findings led to the development of Family
Intervention (FI) approaches to reduce relapses. They aimed to
increase service users’ social functioning, to reduce family burden,
and to improve quality of life of service users and their relatives. FI is
based on a broad psychoeducational and cognitive behavioural
therapy (CBT) approach (Midence, 2006). It is acknowledged that
educating families about the illness alone does not reduce levels of EE
in families with High EE (Kuipers et al., 2002). However, working with
them to tackle practical problems such as improving communication,
effectively developing coping skills and helping families to attribute
the symptoms to illness can decrease their critical or over-involved
behaviours. These interventions can reduce relapses for this population (Kuipers et al., 2002). As awareness and knowledge increase,
tension and stress throughout the family decrease, improving the
quality of life for all concerned (Barrowclough and Tarrier, 1997).
The reduction in families’ ambient and chronic stress levels and a
reduction of face-to-face contact to fewer than thirty-five hours per
week can enable the service user to cope better with unavoidable
stressors and reduces their risk of relapse (Falloon et al., 1984).
The published results of early FI studies are unequivocal in
demonstrating superiority over medication alone in preventing relapses (Goldstein et al., 1978; Falloon et al., 1982; Leff et al., 1982;
Hogarty et al., 1986). The studies demonstrate that relapse rates can
be reduced by 20 per cent if families receive FI (Addington and
Burnett, 2004). However, Pharoah et al. (2003) suggest that there is
insufficient data to definitively state that FIs are any more efficacious
over standard care. They also note difficulties in assessing the efficacy
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of FI. Within their meta-analysis, after reviewing twelve studies that
were conducted in Europe, Asia and North America they found
comparability and replication difficult due to the varying treatment
models used. They concluded that it is unclear if the positive effect of
FI may be facilitated by a change in the frequency or quality of contact
between service users and mental health professionals in general.
Results indicated that family intervention might reduce the risk of
relapse and improve concordance with medication. However, data
were often inadequately reported. As this package of care is widely
employed they suggest that further studies be conducted to properly
clarify several of the short-term and long-term outcomes.
Carer support services
The government now recognizes that carers have needs in their own
right and has therefore set out a number of policies and legislative
frameworks in an attempt to identify and meet their needs. Under the
Carers (Recognition and Services) Act (1995) carers gained the right
to a separate assessment of their own needs (DoH, 1995). The Carers
and Disabled Children Act (2000) indicates that carers have the right
to assessment even if their relative refuses to be assessed or accept
services (DoH, 2000a). Standard six of the National Service Framework for Mental Health (1999) focuses on carers of service users who
have mental health issues. It states that people providing regular care
for a service user under the Care Programme Approach should have
an assessment of their caring, physical and mental health needs
repeated on an annual basis (DoH, 1999). The government suggests
that these policies and legislation have improved resources for carers’
support by d5 million (DoH, 2004). The NHS Plan (DoH, 2000b) set
out a national target of employing 700 carers’ support workers before
2005, but this has not been fully implemented (DoH, 2004). It is also
recognized that further research is needed to evaluate the benefits of
carers’ breaks, support, education and training programmes (DoH,
2004). An important contribution to further understanding in this
area is Mottaghipour and Bickerton’s (2005) ‘pyramid of family care’,
which explores the provision of different levels of intervention to
meet families’ needs. It is a useful framework in guiding professionals
in involving families in their everyday practice. The pyramid outlines
a minimum level of care for families and in hierarchical order builds
on 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, it
has been highlighted that they are getting little return for their
investment. Despite the recent policy changes, carers have argued
that the progress in investment is too slow, with many still unaware of
their 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 feel
frustrated that they could not systematically deliver FI due to reasons
such as high caseloads, time pressures, lack of clinical supervision and
minimal support from management (Kavanagh et al., 1993; Brennan
and Gamble, 1997; Fadden, 1997, 2006; Mairs and Bradshaw, 2005).
Moreover, it is also known that pre-qualification training for most
professionals provides them with little or no contact with carers
(Winefield and Burnett, 1996), and thus little opportunity for development of skills and expertise in this area, and many professionals are
overwhelmed by the prospect of having to work with families (Goldstein and Miklowitz, 1994).
Evidence suggests that the rates of FI following completion of
training courses are significantly low (Baguley et al., 2000; Bailey et al.,
2003; Brooker et al., 2003; Mairs and Bradshaw, 2005). Mairs and
Bradshaw (2005) reviewed six studies that investigated rates of FI
being implemented following training courses. They found that
following training, the mean number of families seen for a minimum
of three sessions ranged from 1.4 (Kavanagh et al., 1993) to 3.5 (Bailey
et al., 2003) per co-worker. This is also worrying as, in accordance with
the NICE guidelines FI should be of at least six months in duration,
with ten planned sessions, using two co-workers for significant change
to take place (National Institute of Clinical Excellence, 2002).
In establishing FI services, the innovative Somerset service (Burbach and Stanbridge, 1998, 2006; Stanbridge et al., 2003) found that
training is more likely to change practice if it is accompanied by
backing and encouragement by management at all levels, with a
formal strategy and a lead person to move it forward. Workplace
issues also need to be addressed; for example, team managers must
ensure that staff have manageable workloads and sufficient supervision (Stanbridge and Burbach, 2007). They found that in-house
team-based training and ongoing supervision enabled the necessary
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changes in culture and practice for service development (Quarry and
Burbach, 1998; Burbach et al., 2002).
Study aims
Despite a considerable body of research involving carers, families
continue to report that their needs are not being understood and met
by mental health services (Repper et al., 2005). Although studies have
provided important information about factors that affect carers, they
have largely failed to provide professionals with a deeper understanding of how carers themselves experience the situation. This
article presents findings from a qualitative research study comprising
focus group discussions and interviews with carers, service users and
mental health professionals. The aim of the study was to gain a
broader understanding of the needs of carers of people with psychosis.
Methodology
A qualitative approach, using focus group discussions and individual
interviews, was adopted for this study. The rationale for using this
approach is that while there have been a number of randomized
controlled trials (RCTs) of FI for people with psychosis there are still
unanswered questions as to what a carer needs. The intention of
qualitative research tends to be on the understanding of meaning
embedded in participants’ experiences through open-ended, unstructured and subjective approaches (Lincoln and Guba, 1985). The
present study sought to explore these experiences with the aim of
developing a richer understanding of carer needs.
Qualitative approaches have provided important insights into
participants’ experiences in similar areas. Notably, Stern et al.’s
(1999) investigation of carers’ accounts of serious mental illness in a
family member explored semi-structured interviews using a narrative
analysis to uncover how carers make sense of their experiences by
constructing life stories. Common themes were evident in carers’
stories and two types of narrative were identified: stories of reconstruction where experiences of their relative’s illness were transformed into meaningful phenomena; and stories of disruption
where the illness was experienced as a series of random events.
Such findings have considerable potential for aiding our understanding of carers’ experiences and for informing therapeutic work with
carers, 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 were
recruited within two London NHS Trusts by advertising within the
local mental health services and support groups. Ethical approval for
this study was obtained from the relevant NHS Research Ethics
Committees for the two Trusts and permissions gained from the
Research and Development Committees of each of the Trusts. Informed consent was gained from all participants before taking part in
the focus groups and interviews.
Six focus group discussions were held: three for carers, two for
professionals and one for service users. These were supplemented by
individual interviews with service users and carers who had expressed
an interest in taking part in the study but who were not able to attend
the focus groups. The inclusion criteria for the three groups of
participants were as follows:
Carers: self-defined carer of someone with psychosis currently in
contact 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 professional
groups currently working with people with psychosis in local
mental health services.
A total of twenty-two carers took part in the study (fourteen in the
carer focus groups and a further seven were interviewed). Their ages
ranged from 35–67 (mean 51 years, std dev 9.3 years); sixteen were
women; ten were currently living with the person with psychosis; and
their 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 their
ethnic group as white (nine as British, two as Irish, two as ‘Other’);
three carers identified themselves as black (two as Caribbean, one as
African); three as Asian (Indian, Bangladeshi and mixed), and there
were missing data for three carers.
Twelve service users participated (five in focus group discussion
and seven in interviews). Their ages ranged from 24–48 (mean 32
years, std dev 7.7); half were women; five were living with a carer; and
their length of time in contact with mental health services ranged
from one to thirty-two years (mean 7 years, std dev 6.1 years). Four
service users identified their ethnic group as white (two as British, two
as ‘Other’); three identified themselves as black (one as Caribbean,
one as African, one as ‘Other’); two as Asian (Pakistani and Bangladeshi);
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R. Askey et al.
two as ‘mixed white and black Caribbean’ and one as ‘mixed white and
black 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 of
roughly equal numbers of occupational therapists, social workers and
psychologists. Nineteen worked full time; sixteen were women; and
their length of time working in mental health services ranged from
one to twenty-two years (mean 7 years, std dev 6.1). Fourteen
professional participants identified their ethnic group as white (thirteen as British, one as Irish); six identified themselves as black (five as
African and one as Caribbean); one as Asian, and there were missing
data for one professional.
The focus group discussions lasted for about one-and-a-half hours.
Participants in the focus groups were asked to generate statements
focusing on the needs of carers of people with psychosis. These
statements were written on a flip chart during the course of the
discussion, and towards the end of the focus group the statements
were reviewed with participants to ensure an accurate record of the
discussion and whether there were any other key points they wanted
to add. The individual interviews lasted for about thirty minutes and
focused on the same question of carers’ needs. Notes were taken
during the interviews and again these were checked by the interviewees at the end of the interviews.
The main challenges to qualitative research are around the data
analysis process as researchers take a plethora of text-based data and
attempt to reduce it to a manageable form while trying not to lose its
meaning (Daley, 2004). In this way data tend to be analysed through an
inductive, ongoing and evolving process of identifying themes within a
particular context (Miles and Huberman, 1994). For the purpose of the
present study a basic thematic qualitative approach was used to analyse
the statements generated by all participants. Thematic analysis is a
method of identifying, analysing and reporting patterns within data
(Braun and Clarke, 2006). The type of coding and thematic analysis
that was established was determined by the aims of the study, i.e. to
understand the meaning of the participants’ views of what are the
needs of carers of people with psychosis; therefore a rich description of
the overall dataset was established rather than a particular aspect of the
data. This rationale is supported by Braun and Clarke (2006) who
highlight the advantages and disadvantages for both approaches. The
main disadvantage for the chosen method is that some of the depth and
complexity 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 interviews
were collected together and coded according to the key themes
emerging from the data and the earlier literature survey. The coding
and analysis was carried out at different levels. The first order coding
enabled us to capture chunks of meaning from the statements that
were purely descriptive. The second order coding allowed some
interpretation of the meaning of the participants’ statements by
capturing the meaning of larger segments of data into super ordinate
constructs. The final level of coding enabled us to draw on the
overarching themes within the data with specific examples of
the statements. The themes that emerged from the statements were
supported by a process of reading and rereading and comparing
codes, constructs and emerging themes. This process was also supported by the researchers’ colleagues who independently found
similar emerging themes when they analysed the statements. The
rationale for including these additional analyses was to make the
process more robust and reduce some of the subjectivity in the
analysis.
Results and discussion
Improving care for service users
For carer participants, the main area of concern was around the care
and services available for their relatives. This was seen in terms of both
the 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 professionals will be able to provide better care.’
(Carer)
A major source of anxiety, stress and physical and emotional burden
was when their relatives were not provided with sufficient help when
needed, or when the standard of care provided was poor. In
particular, carers talked about the unacceptable standard of many
inpatient services. This increased feelings of guilt, burden and stress
for carers when their relatives were admitted. Ward environments
were frequently experienced as frightening places that did not aid
recovery, and where patients’ basic needs were not being met. Sometimes their relatives were admitted to places at a distance from their
family home, which caused immense stress for both the carer and
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service user. The process of admitting service users to hospital was
sometimes seen as traumatic and not useful for the service users or
their families.
‘Carers require that the ward environment adheres to the basic standards such as
good toilet facilities and privacy. Carers feel upset when the inpatient environment
is unkempt.’
(Carer)
‘Sometimes the system can cause more trauma than the actual illness such as
sectioning the person with the police at home where all the neighbours can see.’
(Carer)
Once in hospital, another source of concern for carers was around
preparation for discharge. Most of the carer participants had experienced problems in this area, feeling that their relative had been
discharged prematurely or with little notice, or that there had been
insufficient discharge planning. They suggested that professionals
should take more time in assessing service users’ functioning and
mental state so that they would be more aware of their needs prior to
discharge, and that people’s long-term needs should be taken more
into consideration, especially regarding support for improving their
daily 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 and
seems 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. If
he was offered to do more with his time this would help him.’
(Carer)
Carer participants also argued that services should have intervened
earlier in the course of the illness as the delay in accessing treatment
had caused families a great deal of distress. Most felt that initially
getting access to care was difficult when they knew something was not
right with their relative. Several carers indicated that they were upset
and angry as they felt that professionals did not listen to them. Carers
of service users with an early onset psychosis also argued that service
should be more age-appropriate for young people.
A major difference between the three participant groups was that
carers passionately argued that if their relative received improved
care, then carers themselves would feel less stressed and burdened. To
a lesser degree service user participants also argued that better care
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321
for themselves would reduce burden for their carer. However, the
professional groups only briefly touched on this subject but not in any
specific detail. Within this study most carers suggested that it was
impossible to separate the needs of carers and service users and that
services should see them as being the same if progress was to be made.
This is a different perspective to that found in the carers’ needs
literature which tends to emphasize that carers and service users have
very different needs (e.g. McFadyen and Farrington, 1997). While
most of the literature does not directly focus on service users’ needs as
an issue, it may be argued that poorer service user functioning can
increase carer burden (Platt, 1985; Schene et al., 1998) and a better
understanding of carer burden can contribute towards mental health
services improving practice to meet carer needs (Lowyck et al., 2004).
However, the literature does not argue that improved service user
care will directly reduce burden for carers. The only study that has
directly linked this to carer needs was by Repper et al. (2005). Their
results concluded similar concerns expressed by carers in the present
study, i.e. that there should be provision of adequate services for their
relatives.
Carer involvement
There was solid consensus among the different participant groups
about the importance of improving carer involvement in their
relatives’ care. Carer participants voiced a strong wish to be more
involved in the care of their relatives. They frequently felt that they
were either excluded or that professionals did not take them seriously.
They suggested that as they knew their relatives well and demonstrated expertise in their care delivery they should be seen as a part of
the multi-disciplinary team and respected by professionals. All too
often they found that confidentiality was used as a reason for
professionals excluding them from information.
Carers also found it difficult to build trust with professionals as they
frequently saw different members of the team.
‘There is no consistency who’s in the team as sometimes you can see a different
doctor every time. There needs to be more consistency. Once you’re in the system
you’re too scared to drop out in case things get worse. X was discharged several
times and this made things worse. Teams should hold on to service users for a
longer time.’
(Carer)
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The professional groups also acknowledged that there was an issue
with continuity of care and that sometimes carers became confused
about who were the main contacts within the team. They suggested
more of an effort was needed to tackle this problem. Professional
participants also wanted carers to be more involved within the care
process, and for this to happen they suggested that they needed to
improve their relationship with them and be more flexible and
friendly in their approach. They indicated that carers were experts
in their delivery of care and that they should be valued. Another issue
the professionals raised was that carers could withdraw or stop being
carers if they found the role too stressful.
‘Carers should feel safe at saying no to caring and not to feel judged by
professionals.’
(Professional)
Similarly, the service user participants also argued that carers should
be involved and kept informed of their relatives’ progress. They also
highlighted that carers should be able to set limits with their relatives
if they were becoming too stressed or burdened.
The theme of carers not being sufficiently involved is mirrored by
the literature and there is a recommendation by the government to
tackle this problem (DoH, 1999). Despite this there is a plethora of
literature which suggests that carers still feel marginalized and
excluded from the care process (Shepherd et al., 1994; Winefield
and Harvey, 1994; Beck and Minghella, 1998; Henwood, 1998;
Simpson, 1999; Arksey et al., 2002; Pinfold et al., 2004; Repper et
al., 2005). However, when carers felt more involved in care relationships with professionals there was an increased sense of satisfaction
with services (Stanbridge et al., 2003; Noble and Douglas, 2004).
Emotional and practical support
Carer participants talked about needing professionals to listen to their
needs and be generally supportive. They often felt that professionals
did not have the time to talk with them, which caused them frustration
and upset. Some carers talked about the emotional effects mental
illness had on their own well-being and requested that professionals
help them to deal with their sense of loss and offer them reassurance.
A common theme in the discussions was that carers did not receive
help early in the course of their relative’s mental health condition and
did 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 and
concerns. 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 accessing
care in a crisis.
‘It’s not clear where to look when there’s a crisis especially out of hours. Crisis
doesn’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 they
were only contacted by professionals in a crisis and not for their
general needs.
Similar points were raised in the professionals’ focus groups;
however, most of these statements were about practical support rather
than about carers’ emotional needs. Again the theme of crisis and risk
emerged. Professionals believed that carers needed to know the risks
service users could pose and how they could access services to reduce
risk. They argued that twenty-four-hour care was paramount and that
carers should be aware of the crisis and contingency plans.
The service user participants also raised the issue of crisis intervention and especially of carers’ views being taken seriously by
professionals.
‘Carers should be able to get help when in a crisis as teams often don’t get back to
them.’
(Service user)
Service users also felt that professionals should engage and support
carers throughout the time that their relatives were in contact with
mental health services, whereas from their own experience they saw
that professionals tended to only contact their carers if a crisis
developed.
The theme of crisis is prevalent within the literature. Carers wanted
to learn skills for dealing with their relatives’ symptoms (Noble and
Douglas, 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 the
aim of FI, which is to enable families to build a repertoire of coping
skills to reduce burden and relapse.
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R. Askey et al.
To be treated with respect
Throughout the focus groups and individual interviews the theme of
respectfulness recurred. Carers argued passionately that professionals
and services should be more respectful and listen more to what carers
were saying. They believed that some professionals acted as if they did
not care and were frequently critical of them. They also found that
professionals frequently assumed what carers were thinking which
made them feel angry.
‘Sometimes the professionals don’t listen and understand what’s actually happening with X. They should listen to what carers are saying more. It makes me feel
frustrated.’
(Carer)
The professional groups also raised this issue of respectfulness. They
stated that they should be more understanding and listen to carers’
points of view and that they needed to improve their relationship with
them and appreciate the work that carers do. They continued by
highlighting that professionals should concentrate on the carers’
strengths and holistic needs.
The theme that carers do not feel listened to by professionals about
their 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 the
interventions over the actual outcome of FI. In other words, they
valued the qualities of the professionals and the sense that they were
being listened to.
Information, education and training needs
A major theme emerging from the carer participants was around
information-sharing and educational material. Carers found that
having information about the illness and treatments was really useful,
but that more attention was needed in how to impart such information. Some carers received little or no information from professionals,
while others were given too much at one go, which they found
overwhelming, especially during the initial phases of the illness.
Some of the carers had also received conflicting and confusing
information from different members of the multi-disciplinary team,
which they found difficult and stressful.
As well as information on specific treatments, carers also wanted
information and education about how to understand early warning
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325
signs and how to prevent relapse, and also on how to deal with
difficult 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 their
relative.’
(Carer)
One of the main concerns raised by the professional groups was
around 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 received
information about psychosis and treatments available, and that this
should happen during the initial stages of the illness and throughout
the time that they were in contact with services. Professionals were
aware that it could be very distressing for families to be told that their
relative has psychosis and that this should be done in a very sensitive
manner. The issue of legal information was raised and how this can be
confusing and frightening for carers.
The service user participants also highlighted the importance of
providing carers with information on psychosis, and also that it would
be useful for carers to receive training to provide them with strategies
in dealing with service user distress and understanding more about
early warning signs and relapse prevention. While they thought that
the main purpose of giving carers information and training would be to
reduce their burden it was felt that this would also ease the stress on the
service 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 get
angry they would have to be able to take it. If they got angry this would make me
worse. Professionals should give advice and tell carers that this behaviour doesn’t
work. 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 my
mother for my illness. Professionals should be able to educate them about the illness
and how it happens.’
(Service user)
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R. Askey et al.
These themes are again echoed within the literature and support the
importance of offering FI (Kuipers et al., 2002). Issues around
confidentiality as a barrier to giving information are also well documented (Rethink, 2003; Pinfold et al., 2004). Interestingly, service
user participants in the present study felt that carers should be
involved throughout the care process and did not see confidentiality
as 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 want
information passed on to carers.
Conclusion
The overarching theme from the findings is that carers and service
users do not believe that service users’ basic needs are being met,
which causes them a great deal of distress and anger towards services
and increases carer burden. Carers asserted that the needs of service
users and carers are interconnected and should not be seen as
separate. Furthermore, carers felt strongly that professionals tend
not to listen, involve or respect them in the care of their relatives,
which in turn increases carers’ sense of burden and distress. All three
stakeholder groups agreed that it would be useful if carers received
training in coping strategies and more information on psychosis and
the course of the illness. However, there were differences in opinion
between the three different stakeholders. Carers and service users
argued for consistent information, while professionals raised the issue
that concerns about confidentiality would override informationsharing with carers. All three stakeholder groups asserted that families
should be given more support and information at the earliest possible
opportunity as this could reduce overall distress for the family at a
time when things are stressful for all significant others. Similarly, it was
felt that education and training for carers could be immensely useful,
with service users in particular believing that training carers in dealing
with difficult behaviours would help to reduce stress within the
household.
The main concern arising from these findings is that most of these
issues have been described and argued within the carer literature over
the past twenty years and not much has changed in spite of increased
government activity and policy in these areas. Carers and service users
still feel disempowered despite these acknowledgements. As services
are not able to offer FI to all families, how can services develop to meet
carers’ needs? One option is to embed family-inclusive routine
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327
practice within existing services. Despite the well-documented difficulties in implementing FI it is important to take note of the
innovative but complementary projects in Somerset (Burbach and
Stanbridge, 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-inclusive
mainstream mental health services. This aims to ensure that families
are involved as ‘partners in care’ and that families’ basic needs for
information 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 services
that uses a hierarchical framework for targeting different levels of
care. However, for family interventions to be successful and to sustain
good standards of delivery, manageable workloads and sufficient
supervision are key requirements (Stanbridge and Burbach, 2007).
In-house training and supervision contribute towards the necessary
changes in culture and practice for service development, which needs
the backing and encouragement by management at all levels (Stanbridge et al., 2003).
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