key: cord-0686394-9m4iqecw authors: Onwumere, Juliana; Kuipers, Elizabeth; Wildman, Emilie; Mason, Ava; Stahl, Daniel title: Caregiver wellbeing during Covid-19: does being hopeful play a role? date: 2021-09-17 journal: J Affect Disord Rep DOI: 10.1016/j.jadr.2021.100239 sha: f79be0af06fb8e6a2d90fd9ef3e007c51b817fb1 doc_id: 686394 cord_uid: 9m4iqecw Background: Informal (unpaid) carers represent a core component of health and social care systems. However, their experiences, health impacts and care needs during Covid-19 have been largely overlooked. This study aimed to explore the health and wellbeing impacts of Covid-19 on carers and the contribution of hopefulness. Methods: Data were collected from an online survey hosted on the Qualtrics platform. Results: Three hundred and sixty-nine participants consented to the survey. Data are reported on 186 participants with an 80% or higher completion rate. Most participants (> 80%) reported poor sleep quality, while nearly half the sample met case threshold for anxiety (46.2%) and 29% for depression. Mood disturbance in carers was associated with higher levels of sleep disturbances. Positive wellbeing in carers was best predicted by having a more hopeful outlook and fewer symptoms of depression. Limitations: A cross-sectional survey-based design that is unable to offer no definitive conclusions about the direction of the results. The study was also limited by having carer participants as the only informants. Conclusions: Though informal carers are found in all areas of society, their experiences and health correlates during Covid-19 have not attracted much research attention. The additional and unique challenges of the pandemic for the health and wellbeing needs of carers must not be overlooked as is sadly so often the case. Instead, the experiences of carers and their needs should be prioritised, publicised, and matched by needs-led interventions. Identifying carers and enquiring about their wellbeing would be a laudable first step. The 11 th March 2020 witnessed the global declaration from the World Health Organisation of the Covid-19 pandemic. This was followed by a series of unprecedented local, national, and international restrictions (lockdowns), which have included lengthy closures of schools, workplaces, leisure facilities, religious worship venues, and country borders, in parallel with enforced episodes of self-isolation and shielding. The restrictions, to varying degrees of acceptability, adherence, and success, have been designed to reduce the risk of virus transmission and avoid overwhelming health and social care providers. However, they have also meant that an individual's usual source of healthcare and support has been impacted. Since the declaration, much has been published about the experience and psychological impact of Covid-19 on frontline health care staff (i.e. formal carers) (Greenberg et al 2020; Pappa et al 2020; Cipolotti et al 2020; Magnavita et al (2021) , however, the experience of informal carers has, hitherto, been largely neglected. In the United Kingdom (UK) there are an estimated 13.6 million people (approximately 26% of the population) in informal caregiving roles, with numbers increasing since the start of the pandemic. These are people providing unpaid care and support to a relative, partner, or friend with long-term or terminal health conditions, disability, or care needs related to old age (Carers UK, 2020; Verbakel, 2018) . Global shifts in population size, demography, and related health problems, in Thus, informal carers serve as a hidden workforce (Eikemo, 2018) means that seeking to understand the health impacts of Covid-19 on a frontline, but hidden, workforce offers an important opportunity to identify areas of need and inform potential support interventions. This study sought to a provide a cross-sectional investigation of carers' reports of psychological health and wellbeing during Covid-19 and explore the extent to which having a hopeful outlook confers a protective benefit on their overall positive wellbeing. We hypothesised that carer participants will report clinically elevated rates of psychological morbidity and low rates of positive wellbeing. We also predicted that carer reports of hopefulness will be positively associated with wellbeing and share a negative association with levels of psychological morbidity. The study received ethical approval from King's College London (LRS-19/20-18206). This was a cross-sectional and online study where adult informal (i.e., unpaid/family) carers were the targeted sample. For the purposes of the study, carers were recognised as parents, spouses, or partners of the person receiving care (i.e. care recipient) and living with the care recipient; or individuals living with the care recipient and willingly classified by themselves and the care recipient as a carer; or individuals acknowledged as carers not living with the care recipient, but in close contact for at least 3 months prior to completing the survey. The online survey, hosted on the Qualtrics platform, remained open over an approximate four-month period (05.05.2020-02.09.2020) with participants recruited through social media adverts initially put forward by the university. No specific carer population was targeted. In recognition of the likely challenges that participants might be exposed to, all participants were provided with a resource of helpful online services. A broad range of socio-demographic details, including carer age, gender, employment, and hours per week spent caregiving were collected, along with demographic data on care recipients (e.g. age, gender, health condition). (Zigmond & Snaith, 1983) . The 14-item HADS is a well-known self-report screen of anxiety and depression symptoms and severity. Items are rated on a four-point scale (0-3), which reflect the participant's level of agreement with each item. It offers two subscale scores and an overall score. Subscale total scores range from 0-21; higher total scores are indicative of greater mood disturbance. The measure has been widely used with caregiver groups and has good psychometric data (Fortune, Smith & Garvey, 2005) . The PSQI is a 19-item self-report screening tool for sleep difficulties experienced The HHI is a 12-item self-report measure designed to assess multi-dimensional The WEMWBS is a 14-item self-report assessment of positive mental wellbeing in adults. Individuals are required to read through individual statements (e.g. I've been feeling relaxed) and indicate how much they agree with the statement over the last Three hundred and sixty-nine participants originally signed up to the survey. 183 entries were not included in the analyses due to partial completion (<30% The socio-demographic data of the sample are reported in Table 1 . Carer participants comprised mostly of married females, aged in their middle 50s, with mainly white British ethnicity. They were mostly either in paid employment or retired and caring for a spouse/partner. The majority of carer participants reported being in a caregiving relationship for a decade or longer and providing more than 50 hours of caregiving each week. Care recipients were approximately evenly split between male and females and had a mean age of 58 years. The mean scores for HADS-anxiety was 9.84 (SD=4.39) and 46.2% (n=86) met case threshold. For HADS-depression, the mean score was 8.32 (SD=4.04) and case threshold was met by 29% (n=54). For the PSQI, the mean score was 9.09 (SD=3.83) with 83.3% (n=155) exceeding cut off for poor sleep quality. The mean score for hope, on the HHI, was 33.3 (SD=5.13) and for positive wellbeing, as measured on the WEMWBS, was 40.6 (SD=8.89). were not themselves significant predictors. The current findings speak to potentially elevated levels of anxiety and poor sleep quality in carers during the first the first 6 months of the pandemic. These difficulties exist in the context of their high intensity caregiving roles across a range of health conditions and disabilities, and for some carers they were also in paid jobs. In the UK, there was a delay in formally recognising the key worker status and related needs of informal carers during the early phase of the pandemic, which is likely to have contributed to a neglect in considering and addressing their wellbeing. Our results suggest the importance of active enquiry into carer wellbeing over the course of the pandemic with recognition that some of these carers might also holding down part or fulltime employment. These enquiries could be undertaken by those involved in the direct health or social care provision of the care recipient or general health practitioners for carers. We purposely advocate the use of either approach given the all-too-common situation where carers, and their wellbeing needs, will often be missed or not prioritised in terms of the delivery of support interventions. Given their level and pattern of needs, carers are likely to benefit from targeted information and signposting on how to cope with low mood, anxiety, and evidencebased strategies to optimise sleep (e.g. https://www.nhs.uk/oneyou/every-mindmatters/). A proactive approach to interventions might serve to mitigate against the potential for further deterioration in health status which, in turn, might subsequently require more intensive mental health-based interventions and/or increase the likelihood of carers relinquishing their role and impacting overall outcomes and needs for the care recipient. Given the importance to carer wellbeing of allowing oneself to be hopeful and maintaining a positive mood, it would appear that supporting carers to focus on the realistic prospect for positive changes in the nottoo-distant future might prove beneficial. The International Alliance of Carer Organisations describes caregiving as one of the most important social and economic policy issues worldwide and calls for improved identification of carers and targeted interventions (International Alliance of Carer Organisations, 2018). Though the act of caregiving and being a caregiver can be associated with positive emotions, we have also known for many years that carers themselves represent a vulnerable group for psychiatric, physical, and social morbidities. The current pandemic only serves to further emphasise this and the urgency of all stakeholders to respond in a robust and timely fashion. Ethics approval and consent to participate -The study received ethical approval from King's College London (LRS-19/20-18206). All participants provided informed consent. Availability of data and material -Original data will not be made available in line with ethical approval conditions. Authors' contributions -JO led the project protocol development and implementation with co-author contributions. The paper was drafted by JO with revisions made by authors. All authors read and approved the final manuscript. 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