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.

Perceived Acceptability and Experiences of a Digital Psychoeducation and Peer Support Intervention (COPe-support): Interview Study With Carers Supporting Individuals With Psychosis

“…Upon future implementation, several advertisement routes were recommended to increase the reach of COPe-support, as well as a need for greater awareness among professionals who have contact with carers. In line with previous research [ 41 ], the need for more proactive approaches from professionals and services to identify and refer carers were highlighted, such as potential screening for the well-being of carers and signposting to COPe-support [ 32 ].…”

“…For the RCT of COPe-support, a total of 407 family members or close friends who provided at least weekly support for a loved one affected by psychosis across England were recruited [ 32 ]. Over the duration of 2 years (ie, March 2018 to February 2020), 6 cohorts each starting 4 months apart and lasting 8 months were scheduled; when participants consented to participate in the trial, they were allocated to the next cohort scheduled to start [ 9 ].…”

“…This qualitative study explores carers’ experiences and perceived acceptability of COPe-support and its different components as part of the process evaluation of the COPe-support trial [ 9 , 32 ]. We aim to understand from the carers if and how using COPe-support affected their own well-being and the way they provided care for their loved one.…”

Effect of digital psychoeducation and peer support on the mental health of family carers supporting individuals with psychosis in England (COPe-support): a randomised clinical trial

“…In the UK, about 1·5 million people are carers supporting an individual with mental ill health. 1 , 2 , 3 Psychosis, including schizophrenia, is the most common severe mental illness. 1 , 2 As the onset of schizophrenia peaks in late teenage years or early adulthood, individuals with psychosis often require long-term treatment and support across a range of life domains.…”

Family Support-Based Psychoeducation in Caring Schizophrenic Patients: A Literature Review

“…Single caregivers and those who spend more than 35 hours per week caring are found to be most at risk for poor mental health. 10 Basically, the condition of schizophrenia has an impact on the burden on the family in caring for and it is proven that there is a significant relationship between socio-demographic and clinical variables of caregivers and patients and the burden felt by caregivers. 23 The burden of treatment costs felt by the family is due to the length of recovery at the service provider and the frequency of recurrence, resulting in shorter re-admission times.…”