COVID-19 and UK family carers: policy implications

Onwumere, Juliana; Creswell, Cathy; Livingston, Gill; Shiers, David; Tchanturia, Kate; Charman, Tony; Russell, Ailsa; Treasure, Janet; Forti, Marta Di; Wildman, Emilie; Minnis, Helen; Young, Allan H.; Davis, Annette; Kuipers, Elizabeth

doi:10.1016/s2215-0366(21)00206-6

Cited by 25 publications

(22 citation statements)

References 42 publications

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“…We suggest that future work with contingency plans considers involving user organisations—particularly relatives—to look for resources and how these resources can be used and supported by the health care system during a crisis. This is in line with Onwumere and co-authors suggestion to recognise relatives (or informal carers) as hidden key workers in need of emotional, social, practical and financial support, advocating programmes that help relatives improve their situation [ 24 ].…”

Section: Discussionsupporting

confidence: 72%

Locked out during COVID-19 lockdown—an online survey of relatives of people with psychotic and bipolar disorders in Norway

et al. 2022

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Background Many relatives of people with psychotic and bipolar disorders experience a high caregiver burden normally. During the first COVID-19 lockdown, mental health services partly shut down in many countries. The impact on relatives is unknown. Aims Explore how relatives of people with psychotic and bipolar disorders experienced changes in treatment and service availability for their family member during the first COVID-19 pandemic lockdown in the spring of 2020, and to what extent they perceived information and support to be satisfactory. To help guide future contingency plans, we were also interested in what relatives would prioritize in the event of a future crisis. Study setting We distributed an anonymous Norwegian online survey inviting relatives of individuals with psychotic and bipolar disorders. We distributed the survey using social media, through snowball sampling, collecting both quantitative and qualitative data. The survey was available between May and June 2020. We used systematic text condensation to analyse qualitative data. Results Two hundred and seventy-nine respondents replied, mostly mothers and partners. A majority experienced a reduction in health care for their family member. Most respondents did not receive any support during the lockdown. However, most found the information they received from the mental health services regarding their family members’ treatment as sufficient. The qualitative data analysis revealed that relatives experienced three major challenges: reductions in treatment for the family member; reduced organised daily activity for the family member; and an increased caretaker load. In the case of a future lockdown, they would prefer increased access to care compared with a normal situation; increased support for relatives; and enhanced information. Conclusions Mental health services in Norway did not manage to meet the needs of patients with severe mental illness and their relatives during the first COVID-19 lockdown. To be better prepared, Norwegian mental health services should consider prioritising infrastructure to ensure access to care and support for both patients and relatives. Digital tools and telephone calls are generally well accepted as substitutes for face-to-face contact.

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Section: Discussionsupporting

confidence: 72%

Locked out during COVID-19 lockdown—an online survey of relatives of people with psychotic and bipolar disorders in Norway

et al. 2022

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“…Similar challenges have also been evidenced among disabled children and those with caring responsibilities (Banerjee et al, 2021;Gillespie-Smith et al, 2021;Onwumere et al, 2021). For instance, Banerjee et al (2021) have argued that the lockdown period and subsequent closure of schools may have had detrimental effects on disabled children's mental well-being, with parents reporting that their child was more anxious as a result of the lockdown.…”

Section: Introductionmentioning

confidence: 79%

Disabled People’s Experiences of the Coronavirus Pandemic: A Call to Action for Social Change

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Parfitt²,

Bush³

et al. 2022

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<p>The Coronavirus pandemic has caused significant disruption and change in most aspects of society, and there are concerns that disabled people may be particularly disadvantaged. This article, written by disabled activists and non‐disabled allies, shares data extrapolated from focus groups regarding the lived experiences of twelve disabled people and disability allies during the Covid‐19 pandemic, eleven of whom were based in the UK, and one based in Iraq. We describe the key issues and learning points from this data, arguing that the measures taken by the government and organisations to protect the public during the pandemic have instead brought to the fore long‐standing ableist narratives regarding which bodies are valuable in society. This ableist agenda has acted to control and silence the voices of disabled people by objectifying disability and defining “pre‐existing health conditions” as being more expendable, and therefore less worthy of attention during the pandemic. In presenting our position for change and call to action, we will argue that it is only when disabled people’s experiences and voices are heard in decision‐making that policymakers can begin to learn from the inequalities that have been demonstrated through the pandemic. Here, we will introduce our Wellcome Trust‐funded “We Are the People” Disability Research Collective programme (2021–2026). This programme develops a new disability activist‐led research network, whereby disabled people can conduct research into topics that are important to them.</p>

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“…Individuals and families may have missed out on mutual celebrations due to the increased need to use digital technologies to connect with each other (Onwumere et al, 2021 ). For those who remain in residential or supported accommodation, it is recognised that the shift in communication between service providers, individuals and their families has also been a key focus throughout the pandemic.…”

Section: Discussionmentioning

confidence: 99%

“…This would require and enable an emphasis on increasing IT literacy for both staff and individuals with intellectual disabilities (Bradley, 2020 ; Courtenay & Perera, 2020 ). This need extends to family and significant others by ensuring that such access is commensurate with the skills, knowledge and resource to enable ongoing connections that provide meaning to all parties (Onwumere et al, 2021 ).…”

Section: Discussionmentioning

confidence: 99%

COVID‐19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers

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Northway

Perkins

et al. 2022

Policy Practice Intel Disabi

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The sustainability of service provision continues to be a challenge in the field of intellectual disability due to changes in delivery as part of intermittent or ongoing lockdown requirements during the COVID‐19 global pandemic. There are many facets to this that may have temporary or permanent impacts not only on the sector, but ultimately for service access and outcomes for people with intellectual disability themselves. This narrative literature review identifies both opportunities for, and impacts on, service providers across jurisdictions. These are explored in terms of the effects that suspension, adaptation, continuity or the cessation of service delivery have had, and those that are projected. Such impacts include, but are not limited to, changes in service access and delivery, employment roles and responsibilities, financial sustainability and the need to diversify the services and supports provided and how they are delivered. The relevance of these impacts for family carers and people with intellectual disability is also discussed. Nonetheless, there have also been opportunities which inform the shape of service delivery and pandemic planning into the future.

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COVID-19 and UK family carers: policy implications

Abstract: This is the third in a Series of three papers about carers of young people with mental health problems

Cited by 25 publications

References 42 publications

Locked out during COVID-19 lockdown—an online survey of relatives of people with psychotic and bipolar disorders in Norway

Locked out during COVID-19 lockdown—an online survey of relatives of people with psychotic and bipolar disorders in Norway

Disabled People’s Experiences of the Coronavirus Pandemic: A Call to Action for Social Change

COVID‐19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers

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