Caregiving roles: when will they be routinely recognized and supported?

Difficulties in mental health affect several million people worldwide. The importance and contribution of family carers in promoting positive wellbeing and improved outcomes for those with lived experiences of mental ill health is frequently acknowledged by health providers, policy makers and governments. Globally, we have increasingly moved away from mental health provision based on admittance to long-stay, large scale and geographically remote psychiatric institutions. In many societies, care options in the community, usually in the family home, serve as the norm rather than exception for those with mental health problems, and has therefore shifted considerable responsibilities for care and management to families.

The effects of mental ill health typically extend beyond the identified service user. Seven decades have passed since some of the earliest reports emerged in the literature documenting the different challenges and emotional impact faced by families of people with mental health problems (Grad & Sainsbury, 1963; Treudley, 1946). This initial work on negative caregiving experiences (i.e. burden) coupled with the subsequent findings from George Brown and colleagues, who first coined the term expressed emotion (EE) and identified robust predictive links between high carer EE and elevated rates of service user relapse (Brown et al., 1972), are collectively credited with shaping the direction of much of our current research on caregiving in severe mental illness (SMI).

As we look towards the modern day, contemporary findings from large scale population survey data highlight that carers, compared to the general population, report higher levels of common mental disorders, and with a notable deterioration in levels of functioning and wellbeing among those providing care of 10 hours per week or more (e.g. Smith et al., 2014). Reports of fatigue, suicidal thinking, psychological distress, social isolation, sleep dysfunction and poor quality of life are all significantly elevated in carer groups (Gupta et al., 2015; Hayes, et al., 2015; Stansfeld et al., 2014). Family carers have also reported feelings of “burnout” (Onwumere et al., 2015), reports of loss, not dissimilar to reactions following a bereavement (Patterson et al., 2005), and trauma (Kingston et al., 2016).

Though the predictive links between high EE and poorer service user outcomes have been replicated in several studies and psychiatric conditions (Bebbington & Kuipers, 1994; Butzlaff & Hooley, 1998; Weintraub et al., 2016), the literature is gradually embracing a more culturally specific and informed approach to understanding caregiving relationships observed in different ethnic groups where reports of high EE are not routinely associated with greater symptoms and poorer outcomes in service users (Gurak & De Mamani, 2015; Rosenfarb et al., 2006; Singh et al., 2013). There is greater attention paid to the emotional states of carers, including feelings of guilt and shame, which are argued to underpin high EE presentations (Cherry et al., 2017). This work is undertaken in parallel with a greater focus on seeking the service user’s perspective of the caregiving relationship and exploring its predictive links and implications for outcome (Masland & Hooley, 2015; Onwumere et al., 2009).

More recently, the literature has witnessed developments in expanding its overall understanding of carer needs and the narratives offered on mental health caregiving. These narratives can also speak to the uplifting and positive aspects of the caregiving role (Bauer et al., 2013; Onwumere et al., 2008); represent accounts of caring from across the globe, including non-western and non-English speaking communities (Sibeko et al., 2016); adopt longitudinal approaches to exploring caregiving and the experience of caregiving at different stages (Lavis et al., 2015; Poon et al., 2016), evaluate the use of new technologies and digital approaches in supporting family carers (Rotondi et al., 2010; www.futurelearn.com/courses/caring-psychosis-schizophrenia); consider the benefits of working directly with carers to address their own needs (Roddy et al., 2015; Smallwood et al., 2016) and contributions from peers (Duckworth & Halpern, 2014).

Despite these advances, gaps remain about how we can best translate our increased understanding of family needs into optimal service provision (Eassom et al., 2014) and how we can learn and benefit from trans diagnostic approaches to facilitating caregiving relationships and outcomes. When we look at different mental health conditions (e.g. psychosis, depression, bipolar affective disorder) treatment recommendations often refer to clinical provision for families (Galletly et al., 2016; NICE, 2009, 2014a,b). However, we know surprisingly little about the differences and similarities in caregiving experiences, and identified needs across the different diagnostic groups. Investigating these type of issues could prove valuable in the development of potentially cost effective, scalable and modifiable interventions for carers, irrespective of service user diagnosis.

In the current issue of JMH, we can see good examples of the broad approach to exploring caregiving issues across different communities and settings. The work of Khamis (2017), for example, investigated the distress and predictors of parental caregivers in the Palestinian territory of Gaza, while Stanley et al. (2017) explored similar factors and quality of life in psychosis carers from India, and Azman et al. (2017) used a qualitative design to review coping strategies of mental health carers in Malaysia. This edition also includes studies that have adopted a single issue approach to investigation. Thus, Akintomide & Fazil’s (2017) work focuses on carer accounts of witnessing a relative completing memory assessments in dementia. Similarly, Happell et al. (2017) explored the popular issue of physical health in SMI and the areas of importance to carers. The final paper from Lai et al. (2017) examined carers of terminally ill adults and their functioning and outcomes following participation in a supportive intervention.

Since the 1950s, there have been calls for better recognition and service provision for carers (Kuipers, 2010), and we have made progress in identifying carer needs in mental health. There is recent evidence that offering carers themselves appropriate support and information is effective (Polo-Lopez et al., 2015; Thompson et al., 2016; Yesufu-Udechuku et al., 2015), and it is a NICE recommendation for carers of those with psychosis (NICE, 2014a). However, carers continue to face long-term problems, and can feel bewildered, isolated and, at times, stigmatized by the demands that this role can impose. In an era of ever increasing government cuts to services and mental health expenditure, carers once again are likely to be at the back of the queue. While evidence about carer distress and effort that caring roles impose is well documented and familiar to many, consistent efforts by services to address these is not. We would argue for the importance of a systematized and informed approach to working with families and addressing their specific and changing needs, which often extend beyond emotional distress. Whenever an individual presents to services, it should be routine for significant others to be identified, and for them to be offered an appropriate range of support, if we wish to maintain the ideal of community based care. The transfer of mental health care to the community and greater roles and responsibility for carers must also be matched by a shift in how we think about and prioritise carers, and respond to their needs.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.