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

Sin, J. ORCID: 0000-0003-0590-7165, Elkes, J., Batchelor, R. , Henderson, C., Gillard, S., Woodham, L. A., Chen, T., Aden, A. & Cornelius, V. (2021). Mental Health and Caregiving Experiences of Family Carers Supporting People with Psychosis. Epidemiology and Psychiatric Sciences, 30, article number e3. doi: 10.1017/s2045796020001067


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 to compare 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 (SD 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 hours 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 hours 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 GP surgeries and screen for their wellbeing 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.

Publication Type: Article
Publisher Keywords: family carers; wellbeing; caregiving; public mental health; quality of life; psychosis
Subjects: R Medicine > RA Public aspects of medicine
R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Nursing
SWORD Depositor:
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Available under License Creative Commons: Attribution International Public License 4.0.

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