'I have enough pressure as it is, without the worry of doing something wrong because of ignorance': The impact of Covid-19 on people who employ social care personal assistants

People with care and support needs were often badly affected by Covid-19, although the impact on people employing Personal Assistants (PAs) has not been addressed. We aimed to explore the experiences of people employing PAs during the pandemic to inform care systems and social work practice. Remote qualitative interviews were conducted with seventy PA employers across England in 2021–2022. Data were analysed thematically to explore salient themes. The Covid-19 pandemic elucidated role tensions of PA employers: Navigating care arrangements during a time of unprecedented uncertainty reinforced participants' role as an employer, but exposed some aspects of employment responsibilities and legal obligations that participants felt ill-equipped to manage. Reports of contact with or by social workers were few and not perceived as helpful. The often-informal nature of PA arrangements and its blurred relational boundaries affected participants' expectations of their PAs. PA employers would welcome support from social workers in their employment role and flexibility with care plans, albeit with greater autonomy over their Direct Payment (DP) budget to enhance the potential of this arrangement. In the context of declining DP uptake in England, our study offers some potential explanations for this, with suggestions for systemic change and social work practice.

‘I have enough pressure as it is, without the worry of doing something wrong because of ignorance': The impact of Covid-19 on people who employ social care personal assistants

People with care and support needs were often badly affected by Covid-19, although the impact on people employing Personal Assistants (PAs) has not been addressed. We aimed to explore the experiences of people employing PAs during the pandemic to inform care systems and social work practice. Remote qualitative interviews were conducted with seventy PA employers across England in 2021-2022. Data were analysed thematically to explore salient themes. The Covid-19 pandemic elucidated role tensions of PA employers: Navigating care arrangements during a time of unprecedented uncertainty reinforced participants' role as an employer, but exposed some aspects of employment responsibilities and legal obligations that participants felt ill-equipped to manage. Reports of contact with or by social workers were few and not perceived as helpful. The often-informal nature of PA arrangements and its blurred relational boundaries affected participants' expectations of their PAs. PA employers would welcome support from social workers in their employment role and flexibility with care plans, albeit with greater autonomy over their Direct Payment (DP) budget to enhance the potential of this arrangement. In the context of declining DP uptake in England, our study offers some potential explanations for this, with suggestions for systemic change and social work practice. How were people with care and support needs who employ social care Personal Assistants (PAs) affected by the Covid-19 pandemic? We interviewed seventy PA employers in England in 2021-2022 to ask them what happened to their care and support, and about their contacts with social workers from their local authority (LA). We found that employing a PA during the pandemic heightened many people's awareness of their employment responsibilities, particularly around trying to keep their PAs safe from the risk of the Covid-19 virus infection, and from the hardship of lost income during times when PAs were not working (e.g. during periods of national lockdown where 'social distancing' rules were in place). Several participants reported no or little contact with a social worker since the pandemic started which may have been the result of LAs postponing reviews. Some participants had wanted to use their Direct Payments differently and in a way that they thought would enable them to better meet their needs than previously agreed. When this was a problem or seemed to be so, LA staff were thought to lack understanding of the needs of people employing PAs during the Covid-19 pandemic.

Lessons learned from the impact of Covid-19 on the work of disability support organisations that support employers of social care personal assistants in England.

Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid-19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March-July 2021 with disability support organisation representatives. We identified one overarching theme 'Working to prevent and challenge marginalisation of PA employers', with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid-19. Remote working amplified the digital-divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid-hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre-pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed.

Is it worth it? Carers' views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic.

OBJECTIVES: The Covid-19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short-stay. We investigated impact of Covid-19 on views and expectations of carers of people living with dementia about residential respite. METHODS/DESIGN: Qualitative interviews with 35 carers were conducted March-December 2020: 30 women and 5 men, with ages ranging 30-83 years. Interviews explored experiences, views of residential respite, and expectations post-Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. RESULTS: Three themes were identified in transcripts, relating to impact of Covid-19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. CONCLUSIONS: Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid-19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt.

Personal Assistants' role in infection prevention and control: Their experiences during the Covid-19 pandemic.

Personal Assistants (PA) or client-hired workers are directly employed by people needing care and support, often making use of government funding. In the context of Covid-19, questions emerged about how this workforce is supported to practice safely. This paper reports PAs' understanding and views of infection control during the early months of the Covid-19 pandemic in England. Telephone interviews were undertaken with 41 PAs between 16th April and 21st May 2020. PAs were recruited from a sample that had participated in a previous study in 2014-16. Interview questions focused on changes arising from the pandemic. Data were transcribed and analysed using Framework analysis. This paper focuses on PAs' perceptions of their role and responsibilities in preventing and managing infection. Arising themes were identified about barriers and facilitators affecting infection control in five areas: accessing information, social isolation, handwashing, hygiene, personal protective equipment and potential attitude to vaccines. Infection prevention and control are under-researched in the home care sector generally and efforts are needed to develop knowledge of how to manage infection risks in home settings by non-clinically trained staff such as PAs and how to engage home care users with these efforts, especially when they are the direct employers.