Family psycho-education for people with schizophrenia and other psychotic disorders and their families

Why involve families?

According to the 2010 Australian survey of psychosis, most people with psychotic disorders had frequent face-to-face contact with family members in the previous year: 56.5% almost daily and another 17.1% at least once a week (Morgan et al., 2012). The importance of involving families in treatment – and in this context the term ‘families’ includes members of a person’s social network, which may include immediate family members (including dependent children), partners and friends – is underscored by these findings. Most family members want to be involved in the treatment and care of their relative with a psychotic disorder and to assist with his or her recovery (Parker et al., 2010), and most consumers are supportive of such involvement (Murray-Swank et al., 2007). Since the continuing impacts of mental illness – ranging from grief and loss to guilt and blame – are experienced by relatives as well as consumers, all parties need assistance to cope with these. Families also experience higher rates of depression and anxiety, social isolation and decreased quality of life compared with the rest of the community. For example, more than half of Australian carers had psychiatric symptoms within the previous 12 months (Pirkis et al., 2010). Despite this, family needs for appropriate involvement in their relative’s treatment and care, for support, and for treatment in their own right, where necessary, are rarely addressed (Wynaden and Orb, 2005).

Lack of routine contact with families

Reported rates of contact between mental health professionals and families of consumers appear low, although there are no established norms. There was no clinician contact with families of 55% of consumers receiving standard case management in the UK (Harvey et al., 2002). The Australian situation is likely to be similar, with family carers reporting a lack of engagement by staff, leading to distress and frustration (Wynaden and Orb, 2005). Further, the National Mental Health Consumer and Carer Forum (2011) found that 55% of carers felt they were not given the information and support they needed. Poor information sharing from the outset can mean that families are not identified and supported in their role. Without routine and ongoing contact between most families and the mental health professionals involved in the treatment of their relative, there is limited opportunity for engagement of families in more extensive interventions.

Family psycho-education: efficacy and benefits for consumers and families

The treatment of schizophrenia has involved psychotherapeutic approaches with families since the mid-1950s. Different models have developed, informed by psychoanalysis, systems theory, behavioural and cognitive behavioural psychology, education and the family advocacy movement. FPE has the strongest evidence base. FPE was informed by a stress-vulnerability model of schizophrenia and growing recognition of the importance of involving families in treatment (McFarlane et al., 2003). In contrast to systemic family therapy models, psycho-educational approaches accepted a biological basis for schizophrenia, assumed that psychotropic medication was an essential component of treatment, and adopted and adapted psychosocial interventions used in individual treatment and rehabilitation. There are various FPE models, but all share common elements (Dixon et al., 2001; McFarlane et al., 2003). These include: a positive and non-blaming attitude of clinicians towards families; involving families as partners in care; inclusion of the consumer in sessions; attention to both the social and clinical needs of the consumer; information sharing, including about the disorder, early warning signs and relapse prevention; and, a behavioural orientation that focuses on teaching families coping skills such as communication skills and problem solving. Most interventions involve 12 or more sessions extending from 6 months to over 2 years, and can be delivered in the home or clinic. Individual families are seen in most models (e.g. behavioural family therapy, a frequently researched model), although five to seven families (including consumers) may be seen together in multiple family groups (MFGs) (McFarlane et al., 2003).

There is strong evidence that FPE delivers significant benefits to people experiencing schizophrenia and to their families, with the most commonly researched impacts concerning reduced consumer relapse and admission rates. More than 50 randomised controlled trials (RCTs) have been conducted in the last 35 years and synthesised, including in a Cochrane review (Pharoah et al., 2010). Reduced relapse rates of 20% compared with usual care have been reported, with greater effects for interventions lasting more than 3 months (Pitschel-Walz et al., 2001). Another meta-analysis reported a 12.8% difference in relapse rate compared with all other treatments over the first 12 months and, for single family interventions, a 48.8% absolute difference in risk of being re-admitted (Pilling et al., 2002). In contrast, MFGs may be more efficacious than single family interventions in first-episode psychosis (McFarlane et al., 2012). The number needed to treat (NNT) to prevent a relapse is between three and eight families, with the lowest NNT obtained with single family interventions (Pilling et al., 2002). These effect sizes equate to those delivered by anti-psychotic medications routinely used in the treatment of schizophrenia (McFarlane et al., 2012), although the Cochrane review noted that treatment effects may be overestimated (Pharoah et al., 2010).

FPE encourages adherence with medication, with NNT between five and nine (Pharoah et al., 2010). These interventions may result in improved mental state, social functioning and employment amongst consumers, although this evidence is less robust (e.g. McFarlane et al., 2003; Pharoah et al., 2010). FPE also offers the advantage of addressing the impact of schizophrenia on family members, although family outcomes are less commonly studied so the evidence is weaker (Barbato and D’Avanzo, 2000). In the only meta-analysis of 16 studies of family outcomes, FPE had considerable positive effects on relatives’ burden and psychological distress, the relationship between relatives and the consumer, and family functioning (Cuijpers, 1999). Again, larger effect sizes were found for interventions of more than 12 sessions. However, the duration of the intervention might be more important than the actual number of sessions (Cuijpers, 1999).

There is evidence for the efficacy of FPE within Australia, China, Scandinavia, Spain, the UK and the United States (McFarlane et al., 2003). FPE offers ‘value for money’ in Australia at a cost of $8000 to $28,000 per disability-adjusted life year (DALY) averted, depending on the FPE model (Mihalopoulos et al., 2004). Negative or absent effects amongst migrant populations (e.g. for Latino families in the USA; McFarlane et al., 2003) are best understood as highlighting the need for cultural adaptations, since culturally adapted MFGs are effective for Vietnamese-speaking Australians and Spanish-speaking Mexican Americans with schizophrenia (Bradley et al., 2006; Kopelowicz et al., 2012). Although the evidence for benefit is most extensive for consumers with schizophrenia, controlled studies show positive effects of FPE for other psychotic disorders, especially bipolar disorder and major depression as well as for schizophrenia co-occurring with substance use (see Dixon et al., 2001; McFarlane et al., 2003).

Implementation of family psycho-education in mental health services

Family psycho-education is recommended in clinical practice guidelines for psychotic disorders, most notably schizophrenia, in Australia and elsewhere (Kreyenbuhl et al., 2010; McGorry, 2004; National Institute for Health and Clinical Excellence, 2009). These guidelines generally propose that families are included in the assessment and treatment process and, in the case of schizophrenia, stipulate that consumers who are at risk of relapse and who are living with, or having frequent contact with, their family should be offered FPE. Despite these recommendations and consistent with other psychosocial interventions, FPE is not routinely available in mental health services in these countries (Dixon et al., 1999; Fadden, 2006; Wynaden and Orb, 2005).

FPE has been disseminated in mental health services in various ways, including: at an agency level by model originators; by specialist family programs offering stand-alone training; as part of postgraduate training in psychosocial interventions; and, as a component of comprehensive treatment packages (Brooker et al., 2003; Falloon et al., 2004; McFarlane et al., 2012). There are also examples of models developing ‘organically’ within mental health services (Bailey et al., 2003). All staff may be trained to deliver FPE as part of a comprehensive treatment package, although it is more commonly offered through small intra-service teams of trained staff who accept referrals of families from the wider mental health service.

International studies measuring rates of practitioner uptake of FPE (provided to individual families) indicate that the average number of families seen per practitioner is 0.9–3.5 in periods ranging from 1 to 3½ years post-training (Bailey et al., 2003; Brooker et al., 2003; Fadden, 1997; Kavanagh et al., 1993; Magliano et al., 2005, 2006). Comparison of uptake between sites is difficult because of variation in service settings, target populations and the extent of implementation support, including engagement of management and training. However, the highest average number of families seen per practitioner (3.5) was reported in a small specialist family intervention team in rural England following a 12-month training program (Bailey et al., 2003). Another implementation study reporting greater uptake was conducted across multiple sites in Italy where practitioners trained in behavioural family therapy saw an average of 2.1 families at 1 year after training (Magliano et al., 2006). These relatively higher rates were attributed to a range of factors, including the provision of ongoing supervision and an existing high level of contact between families and professionals within an Italian context.

Two studies of the implementation of multiple family groups in the United States have examined adoption of MFGs at an agency rather than practitioner level (Dixon et al., 1999; McFarlane et al., 2001). These suggest that it is possible to establish MFGs in services with systematic implementation support. Successful implementation was associated with active training methods, local consensus building, the allocation of resources to support the new intervention, and agency openness to supervision and consultation.

Common barriers identified in the literature to the use of FPE in mental health settings include those operating at the level of the family (families’ capacity or willingness to commit to a relatively intensive and extended process, consumer preparedness to involve his or her family), the practitioner (identifying families that they believe will benefit from FPE and the ability to engage and work with families) and the organisation (integration of FPE into existing workload and availability of time, including scope to work after hours) (Bailey et al., 2003; Brooker et al., 2003; Fadden, 1997; Kavanagh et al., 1993; Magliano et al., 2005, 2006). Practitioners’ perceptions of some barriers, such as the availability of families and the suitability of the model for families, diminish over time, probably as a result of practice experience and supervision. In contrast, perceptions of organisational barriers, such as workload and availability of time, seem less amenable to change.

Proposed service models based on implementation evidence and expert consensus

The emerging field of implementation science provides useful frameworks and strategies for improving uptake of FPE in the face of the considerable obstacles identified above (Damschroder et al., 2009). These recognise the limitations of stand-alone strategies, especially training, and instead adopt a systemic approach to practice change. Implementation frameworks emphasise the need to consider elements (and their interactions) such as the characteristics of the practice model, client and practitioner variables, organisational dimensions, the wider policy context and features of the implementation strategy adopted to achieve practice change. Such frameworks help to identify a range of possibilities for improving implementation directly or through further research.

At the level of families, more research is needed to understand families’, and particularly consumers’, experiences of family participation in mental health care in order to better engage and retain them in FPE. In addition, consumers and family members could also be involved to support the engagement of families in FPE.

In relation to practitioners, there is evidence that they experience improved relationships with families after participating in FPE (Magliano et al., 2005). However, less is understood about the other benefits to practitioners of working with families, such as a sense of mastery, role diversity and work satisfaction. Such benefits could be better promoted alongside the outcome benefits for consumers and families and may encourage practitioners to embrace FPE as an alternative to the deadening ‘medicate, manage and monitor’ culture of practice operating in many public mental health services. In the longer term, the use of FPE in mental health services could be increased by including FPE in the undergraduate training of mental health professionals.

At the level of service models, there is emerging consensus that FPE needs to be offered as one of a number of services to families. Although FPE has established efficacy, such approaches are not acceptable to, or necessary for, all families. Given the diverse needs of families, which change through the recovery process and family life cycle, it seems likely that varied services may be required to meet families’ differing needs. These could include respite, carer support groups, individual counselling, support and advocacy from trained carers (carer consultants), family peer-to-peer approaches and financial support.

Less intensive interventions require consideration as model options to complement FPE. In this regard, there is evidence that briefer interventions focusing predominantly on structured didactic information sharing and discussion of coping strategies, usually with separate groups of consumers and family members, may be beneficial in reducing re-admissions, although consumers with six or more previous psychotic episodes did not show a positive effect (Pitschel-Walz et al., 2006). An earlier meta-analysis reported that those interventions which included the consumer and family together were more effective (Lincoln et al., 2007). This suggests that further research on effective formats, content, duration and target consumers is warranted. Family peer support, which includes the provision of 1:1 peer support or family education and support groups for families of people with psychosis by trained family members, also shows promise. The limited available evidence suggests that family peer-to-peer education and support may enhance the capacity of families to manage their own wellbeing and caring roles, and can help reduce some of the psychological burdens of care-giving (Dixon et al., 2004; Foster, 2011; Stephens et al., 2011).

The relationship between service options has been variously conceptualised as a ‘spectrum’ or ‘pyramid’ of services for families (Jewell et al., 2012; Mottaghipour et al., 2006). Mottaghipour (2006) and colleagues’ pyramid points to the differing proportions of families needing various service responses. At the base of the pyramid all families need to be offered inclusion in their relative’s care, while at the apex a much smaller group will require intensive interventions such as FPE. Such an approach can inform the most effective ways of delivering FPE.

In order for more families to access support, appropriate processes for the active and routine engagement of families are needed. Family Consultation is an example of a brief model for engaging with families and determining their needs for available services that has been developed in the USA and recently disseminated successfully at 50 sites in the state of New York (Jewell et al., 2012). Beyond the value of offering an opportunity for all families to be in contact with mental health services and to provide a doorway to other services, such models also increase the overall contact between practitioners and families, which may in turn increase uptake of FPE.

Organisational characteristics have been identified as significant and persistent constraints to the uptake of FPE from practitioners’ perspectives. These characteristics include staff turnover, service opening hours, workloads and the extent to which psychosocial interventions are prioritised over other clinical activities. In addition, entrenched practice cultures that focus on containment of risk over the active support of recovery will need to be addressed to create an environment in which interventions such as FPE are valued and supported. Our local experience of implementing an FPE in a mental health service has identified potentially helpful approaches which complement existing implementation evidence. These include: intensive implementation support; dedicated and protected time for family practice champions; co-working; active management facilitation of organisational change to support the new practice; and, setting realistic targets for uptake that are informed by consumer and service data.

FPE is an intervention that delivers significant benefits for consumers and their families, is supported by a substantial evidence base, and has been incorporated in treatment guidelines for schizophrenia and related conditions. The current challenge is to make FPE widely available as part of routine mental health care. The emerging field of implementation science provides a comprehensive framework and practical strategies for addressing this challenge.