How the research will be carried out
In this qualitative study, we will interview 10 staff members from agencies or care support organisations, to collect their views of experiences and implications of the Covid-19 crisis for their work. We will identify, details of elements that helped or supported PA employers during and following lockdown. The major part of fieldwork will interview 70 PA employers to understand our research questions.
Our collaborators
We have a study advisory group which includes PA employers and people who work in relevant social care fields such as disability support organisations. We will meet with the group three times over the course of the study, who will support both the research and be informed by the study findings.
Potential benefits of the study
Little is known about what happened to people needing care and support during the Covid19 pandemic period, and after the periods of national lockdown. While much research has begun; we know of no other studies that focus on people employing their own PAs. Our findings will be relevant to the practice of local authority social workers who discuss direct payments while undertaking assessments, providing information and advice, and setting-up care plans.
It will be also be useful to those undertaking reviews and monitoring and to staff working in user-led or disability organisations. For PA employers and others supporting them, theirs is likely to be a hidden history of the pandemic and this study will be important in capturing their experiences and helping practitioners provide effective support in any future emergency. Social workers and care managers are responsible for assessing need and arranging the direct payments that can be used to employ PAs among those eligible for local authority support. They provide information and advice; undertake care planning, reviews and monitoring; and support family carers.
Our findings will provide them with evidence about how PA employers managed their PA relationships and arrangements during the pandemic and its impacts on their intended plans and wishes. Additionally, the study will be the first to have sizeable evidence from Black, Asian and minority ethnic people – there is a surprising gap of UK evidence about PA employers from these groups. Practitioners will be in a position to draw on this study’s evidence when supporting considering PA options and set it in the context of theory and practice.
How patients and service users will be involved in the research
As outlined above, we have a study advisory group that will draw on its members’ insights and experiences, helping our findings to have influence. This group will be funded to help us and will involve people who employ their own care workers. They have already commented on this proposal and have helped us to design our study documents, including participant information sheets and interview topic guides.
They are helping to recruit staff from agencies or care support organisations and PA employers. They will be involved in helping to understand what people tell us, and make sure our findings are easy to understand. We will follow INVOLVE guidance on user and carer involvement including paying them for their time, and travelling expenses/refreshments. We will also work closely with the group members to produce materials that may be helpful to PA employers focusing on key messages and learning points identified in this study.
The study is funded by the NIHR School for Social Care Research. It was adopted by ARC South London in March 2021 and will be completed by March 2022.