Background
Managing early warning signs is an effective approach to preventing relapse in bipolar disorder. Involving relatives in relapse prevention has been shown to maximize the effectiveness of this approach. However, family-focused intervention research has typically used expert therapists, who are rarely available within routine clinical services. It remains unknown what issues exist when involving relatives in relapse prevention planning delivered by community mental health case managers. This study explored the value and barriers of involving relatives in relapse prevention from the perspectives of service users, relatives and care-coordinators.
Methods
Qualitative interview study nested within a randomized controlled trial of relapse prevention for individuals with bipolar disorder. The purposive sample of 52 participants comprised service users (n = 21), care coordinators (n = 21) and relatives (n = 10). Data were analyzed using a grounded theory approach.
Results
All parties identified benefits of involving relatives in relapse prevention: improved understanding of bipolar disorder; relatives gaining a role in illness management; and improved relationships between each party. Nevertheless, relatives were often discouraged from becoming involved. Some staff perceived involving relatives increased the complexity of their own role and workload, and some service users valued the exclusivity of their relationship with their care-coordinator and prioritized taking individual responsibility for their illness over the benefits of involving their relatives. Barriers were heightened when family relationships were poor.
Conclusions
Whilst involving relatives in relapse prevention has perceived value, it can increase the complexity of managing bipolar disorder for each party. In order to fully realize the benefits of involving relatives in relapse prevention, additional training and support for community care coordinators is needed.
Trial registration
ISRCTN41352631
Go to:
Background
Clinical guidelines recommend structured psychological interventions should be offered as an adjunctive intervention to psychopharmacology to prevent relapse for bipolar disorder [1]. Relapse prevention (RP) teaches individuals to recognize and manage the early warning signs and triggers to their mania and depressive episodes. In doing so individuals are forewarned of the recurrence of a relapse in time to seek early treatment and so minimize serious harm [2]. This approach is effective in improving function, increasing time to relapse and reducing the percentage of people hospitalized: recommendations are that mental health services should routinely provide RP to adults with bipolar disorder [3].
The role of relatives in RP is less clear. Relatives of people with bipolar disorder experience high levels of burden which are associated with physical and mental health problems and increased use of medical and mental health services [4], particularly amongst caregivers living with patients [5]. Among people with bipolar disorder, there is a perception that carers and families are often excluded from management decisions and ignored by health professionals to the distress of family members who remain uninformed about bipolar disorder [6]. Most families report wishing for support and education from services, but that they rarely receive it [7]. Under these circumstances, families cannot be expected to be as effective as they might be in detecting clinical signs of illness and obtaining help. There are several mechanisms through which relatives' involvement can support service users. Relatives can impact positively on the outcome for patients by providing structures that encourage stable routines and emotional self-regulation strategies [3]. Conversely, relatives' expressed emotion is a robust predictor of relapse in psychiatric conditions, particularly mood disorders [8]. High expressed emotion has been associated with dysfunctional patterns of communication [9] and blaming attributions for negative patient-related events [10].
Together these findings have prompted a growing field of research into interventions at the level of the family to reduce carer burden, develop more helpful illness attributions and patterns of family communication, improve medication concordance and reduce relapse rates. A systematic review of interventions involving relatives was unable to draw conclusions due the heterogeneity and limited size of trials [11]. Nevertheless, recent trials conducted in families of adults [12] and adolescents [13] or carers alone [14] have yielded positive effects on outcome, illustrating the potential value of involving relatives to improve the outcome of bipolar disorder. It has been recommended that engaging families in helping patients to recognize individual early warning signs of mania or depression is a helpful adjunct to pharmacological management [1,3].
Typically, however, research into relapse prevention interventions for bipolar disorder has not specifically sought to involve relatives or carers, but has assessed individualized treatment delivered through specialist services, expert therapists or extensive therapy [15-17] none of which are routinely available in the mainstream services such as the UK National Health Service (NHS). Moreover, RP planning is most useful when patients are well, which is a time when they are likely to have limited contact with medical or mental health specialists. During these periods, service users' primary contact will be a designated member of their community mental health team, who is responsible for their case management. These care coordinators are typically from a nursing, occupational therapy or social work background and will have limited opportunities for specialist training in specific psychological interventions for bipolar disorder [18]. This model is typical within the UK NHS for community follow-up care for people with serious mental illness, and is increasingly found in many over services across the world [19].
A key advantage of RP is that, compared to more sophisticated approaches involving early warning signs (such as some forms of cognitive behaviour therapy and family therapy) simple RP interventions can be taught more quickly and easily to both non-specialist health professionals without requiring extensive training in psychotherapy [20]. A recent trial found that RP could be taught to care coordinators and that this improved social functioning compared with treatment as usual amongst service users with bipolar disorder [21].
Consequently opportunities to involve relatives in relapse prevention planning are likely to most usefully involve care coordinators, who are not trained in family therapy and may not recognize the potential benefit of engaging family members in patients' care planning. Attempts to involve relatives in relapse planning have however been met with limited success [21]. If the potential benefits of involving relatives in RP is to be achieved within routine care, it is important to understand the value health professionals, patients and relatives see (if any) in involving family members in relapse prevention planning, and what barriers exist that deter relatives from taking a greater role.
This paper reports the findings of a qualitative study examining the views of service users, relatives and care-coordinators of the value and barriers of involving family members in relapse prevention.
Go to:
Methods
Study context
The study employed a qualitative approach that was nested within a cluster randomized controlled trial that had provided an opportunity for care coordinators to involve relatives in relapse prevention planning for service users with bipolar disorders. The aim of the trial was to assess the feasibility of training care coordinators (CCs) to offer a relapse prevention (RP) to individuals with bipolar disorder and, where possible, a relative [21,22]. The trial provided an ideal context within which to examine the views of relatives, care coordinators and service users about their experiences of involving relatives in relapse prevention planning, and to ascertain the potential benefits and barriers to developing and implementing this role within routine clinical practice [23]. During the trial 112 CCs from 23 Community Mental Health Teams (CMHTs) in the North West of England, UK were recruited and referred 96 service users (SUs). Full details of recruitment to the trial are reported elsewhere [21]. CCs were randomly allocated by CMHTs to receive training in RP (n = 56) or to continue to offer treatment as usual (TAU, n = 40). Intervention was delivered by CCs to SUs and their relative. Relatives were eligible to take part in the trial if they were aged 18 or above and had a minimum of two face-to-face weekly contacts totaling ≥ 10 hours. Service users were given the option of inviting a relative to take part if they wished, but they were not required to do so. Ethical approval was obtained through the Central Office for Research Ethics Committees (COREC).
BackgroundManaging early warning signs is an effective approach to preventing relapse in bipolar disorder. Involving relatives in relapse prevention has been shown to maximize the effectiveness of this approach. However, family-focused intervention research has typically used expert therapists, who are rarely available within routine clinical services. It remains unknown what issues exist when involving relatives in relapse prevention planning delivered by community mental health case managers. This study explored the value and barriers of involving relatives in relapse prevention from the perspectives of service users, relatives and care-coordinators.MethodsQualitative interview study nested within a randomized controlled trial of relapse prevention for individuals with bipolar disorder. The purposive sample of 52 participants comprised service users (n = 21), care coordinators (n = 21) and relatives (n = 10). Data were analyzed using a grounded theory approach.ResultsAll parties identified benefits of involving relatives in relapse prevention: improved understanding of bipolar disorder; relatives gaining a role in illness management; and improved relationships between each party. Nevertheless, relatives were often discouraged from becoming involved. Some staff perceived involving relatives increased the complexity of their own role and workload, and some service users valued the exclusivity of their relationship with their care-coordinator and prioritized taking individual responsibility for their illness over the benefits of involving their relatives. Barriers were heightened when family relationships were poor.ConclusionsWhilst involving relatives in relapse prevention has perceived value, it can increase the complexity of managing bipolar disorder for each party. In order to fully realize the benefits of involving relatives in relapse prevention, additional training and support for community care coordinators is needed.Trial registrationISRCTN41352631Go to:BackgroundClinical guidelines recommend structured psychological interventions should be offered as an adjunctive intervention to psychopharmacology to prevent relapse for bipolar disorder [1]. Relapse prevention (RP) teaches individuals to recognize and manage the early warning signs and triggers to their mania and depressive episodes. In doing so individuals are forewarned of the recurrence of a relapse in time to seek early treatment and so minimize serious harm [2]. This approach is effective in improving function, increasing time to relapse and reducing the percentage of people hospitalized: recommendations are that mental health services should routinely provide RP to adults with bipolar disorder [3].The role of relatives in RP is less clear. Relatives of people with bipolar disorder experience high levels of burden which are associated with physical and mental health problems and increased use of medical and mental health services [4], particularly amongst caregivers living with patients [5]. Among people with bipolar disorder, there is a perception that carers and families are often excluded from management decisions and ignored by health professionals to the distress of family members who remain uninformed about bipolar disorder [6]. Most families report wishing for support and education from services, but that they rarely receive it [7]. Under these circumstances, families cannot be expected to be as effective as they might be in detecting clinical signs of illness and obtaining help. There are several mechanisms through which relatives' involvement can support service users. Relatives can impact positively on the outcome for patients by providing structures that encourage stable routines and emotional self-regulation strategies [3]. Conversely, relatives' expressed emotion is a robust predictor of relapse in psychiatric conditions, particularly mood disorders [8]. High expressed emotion has been associated with dysfunctional patterns of communication [9] and blaming attributions for negative patient-related events [10].Together these findings have prompted a growing field of research into interventions at the level of the family to reduce carer burden, develop more helpful illness attributions and patterns of family communication, improve medication concordance and reduce relapse rates. A systematic review of interventions involving relatives was unable to draw conclusions due the heterogeneity and limited size of trials [11]. Nevertheless, recent trials conducted in families of adults [12] and adolescents [13] or carers alone [14] have yielded positive effects on outcome, illustrating the potential value of involving relatives to improve the outcome of bipolar disorder. It has been recommended that engaging families in helping patients to recognize individual early warning signs of mania or depression is a helpful adjunct to pharmacological management [1,3].Typically, however, research into relapse prevention interventions for bipolar disorder has not specifically sought to involve relatives or carers, but has assessed individualized treatment delivered through specialist services, expert therapists or extensive therapy [15-17] none of which are routinely available in the mainstream services such as the UK National Health Service (NHS). Moreover, RP planning is most useful when patients are well, which is a time when they are likely to have limited contact with medical or mental health specialists. During these periods, service users' primary contact will be a designated member of their community mental health team, who is responsible for their case management. These care coordinators are typically from a nursing, occupational therapy or social work background and will have limited opportunities for specialist training in specific psychological interventions for bipolar disorder [18]. This model is typical within the UK NHS for community follow-up care for people with serious mental illness, and is increasingly found in many over services across the world [19].
A key advantage of RP is that, compared to more sophisticated approaches involving early warning signs (such as some forms of cognitive behaviour therapy and family therapy) simple RP interventions can be taught more quickly and easily to both non-specialist health professionals without requiring extensive training in psychotherapy [20]. A recent trial found that RP could be taught to care coordinators and that this improved social functioning compared with treatment as usual amongst service users with bipolar disorder [21].
Consequently opportunities to involve relatives in relapse prevention planning are likely to most usefully involve care coordinators, who are not trained in family therapy and may not recognize the potential benefit of engaging family members in patients' care planning. Attempts to involve relatives in relapse planning have however been met with limited success [21]. If the potential benefits of involving relatives in RP is to be achieved within routine care, it is important to understand the value health professionals, patients and relatives see (if any) in involving family members in relapse prevention planning, and what barriers exist that deter relatives from taking a greater role.
This paper reports the findings of a qualitative study examining the views of service users, relatives and care-coordinators of the value and barriers of involving family members in relapse prevention.
Go to:
Methods
Study context
The study employed a qualitative approach that was nested within a cluster randomized controlled trial that had provided an opportunity for care coordinators to involve relatives in relapse prevention planning for service users with bipolar disorders. The aim of the trial was to assess the feasibility of training care coordinators (CCs) to offer a relapse prevention (RP) to individuals with bipolar disorder and, where possible, a relative [21,22]. The trial provided an ideal context within which to examine the views of relatives, care coordinators and service users about their experiences of involving relatives in relapse prevention planning, and to ascertain the potential benefits and barriers to developing and implementing this role within routine clinical practice [23]. During the trial 112 CCs from 23 Community Mental Health Teams (CMHTs) in the North West of England, UK were recruited and referred 96 service users (SUs). Full details of recruitment to the trial are reported elsewhere [21]. CCs were randomly allocated by CMHTs to receive training in RP (n = 56) or to continue to offer treatment as usual (TAU, n = 40). Intervention was delivered by CCs to SUs and their relative. Relatives were eligible to take part in the trial if they were aged 18 or above and had a minimum of two face-to-face weekly contacts totaling ≥ 10 hours. Service users were given the option of inviting a relative to take part if they wished, but they were not required to do so. Ethical approval was obtained through the Central Office for Research Ethics Committees (COREC).
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