How family members react to psychosis is an important factor that can affect the outcome of the illness. Providing interventions to mitigate any negative impact can reduce the risk of relapse, rehospitalisation, reduce mortality, improve socialisation and engagement with treatment.
NICE guidelines (CG178, CG155) clearly recommend these interventions are provided during all stages of care to also address the needs of carer’s who themselves are at greater risk of developing mental health problems. In an ideal world, these interventions would be provided as standard throughout mental health services and offered routinely, however this isn’t the case.
In the recent Early Intervention in Psychosis Audit 2016, education and support programmes were only offered to 31% of families and carers. 38% of those offered accepted and where interventions were available most of families (71%) were not offered these. The picture of how services are delivered and obtained is complex, so understanding factors that contribute to the delivery and uptake of these interventions is timely.
Selick et al. (2017) conducted a narrative synthesis of mainly qualitative articles describing the barriers and facilitators to delivering caregiver interventions from the perspective of the carers, clients and clinicians. As the studies included in this review are primarily qualitative, this paper essentially provides a synthesis of the views and preferences of families and caregivers, although three studies were informed by clinician views and only one represents the voices of clients. It is worth noting that the main intervention delivered in the included studies uses the McFarlane model (McFarlane, 2011), which is routinely delivered in North American settings, but may not be the mainstay of caregiver service provision in the UK.
The review was conducted systematically, using 4 electronic databases (Medline, EMBASE, PsycINFO and Joanna Briggs), from 2000 to 2015 using terms related to early onset psychosis, family work and implementation.
The inclusion criteria suggest other reviews were not considered and the authors included all papers that investigated the barriers and facilitators to implementation with most of these studies providing evaluation that followed the implementation of the intervention. There was no limitation placed on the methods used so essentially qualitative or quantitative studies could be included.
The process of appraising the quality for each study is not described.
The 7 studies retained in the review following application of the inclusion and exclusion criteria comprise 1 quantitative study and 6 qualitative. The TIPS study, a well-organised and robust clinical-research enterprise, reported on a large cohort of people with first episode psychosis offered carer interventions and reasons for refusal or acceptance. A key problem, even in this larger cohort, is that delay in receiving the multi-family groups can be caused by waiting for sufficient participant numbers. The review authors note that the timing of the episode is an important issue for engaging family members in an intervention; if the episode onset is relatively distant to the offer of an intervention, it can seem unnecessary or irrelevant to the perceived needs of the carer. Equally, if the intervention is delivered too early the family run the risk of becoming distressed before they’ve had time to fully accept the implications of the situation.
Many of the studies reported that family’s preferences should be considered as people questioned the need for attending a full programme or felt specific elements did not apply to them. Some stated a need for more intensive interventions and in some families, few or no interventions were necessary. On the other hand, one study found that a long intervention (1-2 years) was appraised positively by families even though they found it demanding. Many logistical and practical reasons were considered to hinder uptake if it interfered with other caregiving or work duties or if the venue was not within a reasonable travelling distance. Only one of the emerging themes was process-related, which could highlight better ways to retain people in treatment. This illuminated the tension between a manualised process and the need to go ‘off piste’ to address emerging issues as they happened.
A comparison of this narrative review with the more general literature on caregiver interventions for schizophrenia reveals that timing is particularly important. Services need to be more responsive to the rapidly changing needs of clients in the early stages of illness, but also the readiness of the caregiver or family member may need to be considered carefully.
The authors conclude that the need to provide interventions that are tailored to personal needs is slowly being accepted and the use of tiered services are promoted on this basis. Tiered services essentially provide a framework or ‘menu’ of a range of possible interventions giving greater client and caregiver choice.
Strengths and limitations
There are some limitations that should be considered when reviewing this evidence:
- This review contained no information on quality appraisal, which means that the quality of the included studies cannot be fully assessed by the reader. This may be an oversight in reporting given the authors have embedded such quality checks in the conduct of their review. Registering the review in PROSPERO would have been useful for clearing this up.
- Combining the views of caregivers and families, carers and clients is not as useful as having them separated out. These groups are likely to differ and no discussion of the relative weight assigned to each viewpoint has been provided or considered. There are obvious tensions discussed in the TIPS study where clients refused their families participation in about a third of cases, yet only one study explored the views of clients. This represents a significant gap in the literature about what we know about engaging families or caregivers in interventions especially, as the authors point out that up to 70% of family members of people with psychosis have caring roles.
Implications for practice
The ‘one size fits all’ approach is beginning to be questioned in many areas across mental health, as the need for personalised care comes to the fore. This is typically led by evidence that not all treatments produce the same results, but herein lies the tension. Providing an intervention with a known mechanism of action (or at least some evidence to support it) is essential for service provision, but considering the needs and preferences of clients, given low rates of implementation success, is equally imperative. Personalised methods of delivering an evidence-based intervention can be challenging but important to the continued success of providing talking therapies that clients and caregivers value highly. For this reason, this study is important and timely.
Exploring the tiered service framework with clients themselves may be an important step towards giving them choice about which type of intervention is offered to caregivers enhancing opportunity for providing an evidence-based service. A first step would be to more substantially consider clients’ views of caregiver interventions and their reticence to support this, as a precursor to considering ways to improve shared the decision-making.
Selick A, Durbin J, Vu N, O’Connor K, Volpe T, Lin E. (2017) Barriers and facilitators to implementing family support and education in Early Psychosis Intervention programmes: A systematic review, Early Intervention in Psychiatry, 2017. https://doi.org/10.1111/eip.12400
McFarlane WR. (2011) Prevention of the First Episode of Psychosis. Psychiatr Clin North Am. 2011 Mar; 34(1): 95–107. Published online 2010 Dec 18. doi: 10.1016/j.psc.2010.11.012
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[…] One psychosis fits all? What do families and clients say about caregiver interventions? Laoise Renwick reminded us that NICE recommends caregiver interventions for families affected by psychosis, but this support reaches less than 1 in 3. Providing an intervention with a known mechanism of action (or at least some evidence to support it) is essential for service provision, but considering the needs and preferences of clients, given low rates of implementation success, is equally imperative. […]