Mental Health and Caregiving Experiences of Family Carers Supporting People with Psychosis

Abstract

Aims. Family carers supporting an individual with psychosis often experience poorer mental health, however, little is known about specific risk factors among these carers. We investigated the associations between demographic, caregiving characteristics and mental health outcomes in family carers supporting an individual with psychosis and compared carers' outcomes with general population norms. Methods. We analysed baseline data from the COPe-support randomised controlled trial of online psychoeducation and peer support for adult carers supporting an individual with psychosis between 2018 and 2020. We collected carers' demographic and health outcome data, including wellbeing using Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS as primary outcome), quality of life using EQ-5D-5L and caregiving experience assessed with Experience of Caregiving Inventory. We tested associations between carers' demographic and caregiving characteristics for each outcome in turn and meta-analysed carers' WEMWBS and EQ-5D-5L with Health Survey England (HSE) general population data from 2016 and 2017, respectively. Results. The 407 carers of people with psychosis had a mean WEMWBS score of 42.2 (S.D. 9.21) and their overall weighted pooled WEMWBS score was 7.3 (95% confidence interval (CI) −8.6 to −6.0, p < 0.01) lower than the HSE general population sample, indicating carers have poorer mental wellbeing by more than double the minimum clinically important difference of 3 points on WEMWBS. Among all caring relationships, partners had poorer wellbeing compared to parents with lower WEMWBS score (−6.8, −16.9 to 3.3, p = 0.03). Single carers had significantly poorer wellbeing (−3.6, −5.6 to −1.5, p < 0.01) and a more negative caregiving experience than those who were cohabiting. Spending more than 35 h per week caregiving increased carers' negative experience significantly ( p = 0.01). Conclusion. Carers of people with psychosis have poorer mental health than non-carers. Partners, lone carers and those spending more than 35 h per week on caring were found to be most at risk of poor mental health. Based on the results, we advocate that the details of carers for individuals with psychosis should be added to the existing carers or severe mental illness registers at all general practitioner surgeries and for their wellbeing screened routinely. Future large-scale prospective studies are needed to develop a predictive model to determine risk factors, hence to aid early identification of carers' support needs. Such understandings are also useful to inform tailored intervention development.

The experiential perspectives of siblings and partners caring for a loved one with an eating disorder in the UK

“…[18][19][20] This suggests the guidance is not being followed regarding engaging and effectively communicating with carers during transitions and providing non-discriminatory access to appropriate specialist care. 11,12 Our findings also reflected challenges commonly identified by carers of loved ones with an eating disorder, including overwhelming emotions and lack of information and guidance. 21 These findings were despite both the Beat and AED guidelines noting the need for carers to be provided with useful and comprehensive information, resources and support.…”

“… 21 Previous research has shown the benefits of peer support groups for carers including siblings and partners, such as sharing experiential knowledge and mutual understanding. 12 , 28 , 29 Building upon Beat's recommendation of offering carers options for peer support, our sample indicated support groups tailored for siblings or partners might be beneficial, given their experiences of attending groups that had been primarily populated by parents. A preference of group attendee consistency to build connections and professional moderation were noted.…”

“…5 Thus, other common groups of carers, including siblings and partners, have remained overlooked, despite recent research showing that the adverse effects of being a carer for a loved one with a serious mental health condition are not limited to parents. [9][10][11][12] To improve the adequacy of support provided to carers, both Beat (the leading UK eating disorder charity) 13 and the Academy for Eating Disorders (AED; the leading association for eating disorder professionals and experts with lived experience) 14 recently published guidance outlining recommendations on improving the adequacy of support provided to carers such as siblings and partners. (Table 1).…”

Mental health and COVID‐19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities

“…Well-being was evaluated at pre-and postprogram, and again at follow-up using the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al 2007). The scale consists of 14 items targeting feeling and functioning aspects of mental well-being, and has been used in a number of studies with caregivers (Fancourt et al 2019;Hodiamont et al 2019;Sin et al 2021;Salomone et al 2018).…”

Understanding Barriers to the Realization of Human Rights Among Older Women With Mental Health Conditions

“…30 Unpaid carers of a person with a disability, chronic illness or frail older relative regularly report among the lowest levels of wellbeing of any group. 31 Consequently, the provision of unpaid care is not only a gendered determinant of socio-economic disadvantage, but it is also closely intertwined with mental health outcomes throughout the life course.…”