Research: What Does Good Care Looks Like?
Summary
This is a note of explanation about our research into what good care looks like for disabled people. It explains what it is about and how to get involved.
Table of Contents
In Brief: What Good Care Looks Like
With More Explanation: What Good Care Looks Like
About the project
Why are we doing this now?
What do we mean by “care”?
How will the research work?
Stage Two – In-depth interviews
Why look at both good and bad care?
What will happen with the findings?
About Difference North East
In Brief: What Does Good Care Looks Like?
What Does Good Care Looks Like? is a disabled-led research project from Difference North East exploring what good care means from the perspective of disabled people themselves.
We want to hear about the whole range of experiences – from excellent and enabling care to care that is poor, restrictive, controlling or harmful. We are particularly interested in choice, control, dignity, independence, relationships and whether the care people receive enables them to live the lives they want.
The research will begin with a short, accessible questionnaire for disabled people across the North East. We will then invite around 10 people with a range of experiences to take part in a paid, one-hour interview so that we can explore their experiences in greater depth.
The findings will be used to define what good care looks like from a disabled person’s perspective and develop recommendations, training and practical guidance for providers and commissioners. We also want the research to contribute disabled people’s experiences to the wider debate about the future of adult social care.
There are two ways to get involved, the first of these is a questionnaire which takes around 10 minutes to complete, the second is a more detailed online interview which we will pay £50 access costs. If you’re interested, please email info@differencenortheast.org.uk with the word ‘Care’ in the subject title.
With More Explanation: What Does Good Care Looks Like?
A disabled-led study into people’s experiences of care in the North East
About the project
What Does Good Care Looks Like? is a new research project from Difference North East exploring what care looks and feels like from the perspective of disabled people themselves.
We want to start with a straightforward question:
What does good care look like to you?
For many disabled people, care and support are an important part of everyday life. Care can come from a care agency, Personal Assistant or support worker, but it can also come from a partner, relative, friend or somebody else in our lives.
Good care can enable us to live the lives we choose. It can support independence, relationships, employment, interests and participation in our communities. It can give us confidence and control.
But care does not always work like that. It can be rushed, unreliable or inflexible. People can find that decisions are made for them rather than with them. Sometimes relationships that started as caring can change over time and become restrictive, controlling, neglectful or harmful.
We want to understand that whole spectrum of experience.
Importantly, this isn’t research that starts by looking for things that have gone wrong. We want to hear about excellent care, ordinary care, mixed experiences and bad care. Understanding why something works well can be every bit as important as understanding why something has failed.
Why are we doing this now?
Adult social care is currently the subject of significant national debate and reform, including the Government’s review of adult social care led by Baroness Casey.
Much of the debate about social care understandably concentrates on questions such as funding, staffing, eligibility and how services should be organised.
Difference North East wants to contribute another perspective:
What do disabled people who actually receive care think care should be for?
We believe care should ultimately enable disabled people to exercise choice and control and live the lives we want to live.
That means asking about more than whether somebody arrives at the right time or completes a particular care task. We want to understand dignity, relationships, trust, flexibility, independence, safety, participation and agency.
We also want to understand what happens when care doesn’t work, how disabled people manage those situations, whether they feel able to challenge poor care, and what helps people retain control.
The research will provide a disabled-led contribution to the wider discussion about what the future of care should look like.
What do we mean by “care”?
We are deliberately using care broadly.
You do not need to receive a council-funded social care package to take part.
We are interested in experiences of care and support provided by:
- Personal Assistants;
- care agencies and care workers;
- supported living or residential services;
- partners;
- family members;
- friends;
- health or support services; and
- other people who provide significant care or support in someone’s life.
Part of the research is about understanding whether the experience of care differs depending on who provides it.
How will the research work?
We will carry out the research in two stages.
Stage One – What Does Good Care Looks Like? Questionnaire
We will begin with a short questionnaire for disabled people across the North East.
It will ask about people’s current and previous experiences of care, including:
- What makes care good;
- Choice and control;
- Dignity and respect;
- Independence;
- Trust and safety;
- Whether care enables people to participate in the relationships, activities and communities that matter to them;
- Experiences of care changing or going wrong; and
- What people would change about care in the future.
Click here for questionnaire.
Stage Two – In-depth interviews
At the end of the questionnaire, people can tell us whether they would be interested in talking to us in more depth.
We expect to invite around eight people, with a maximum of ten, to take part in a one-hour interview.
We deliberately want a mixture of experiences. This will include people who have experienced very good care, people with mixed experiences and people whose experiences have been poor or harmful.
Interview participants will be paid £50 to cover their access costs.
The interviews will allow us to explore people’s experiences in much greater depth: what happened, what made the difference, how people exercised agency and managed difficult situations, and what they believe should change.
Why look at both good and bad care?
We don’t want to define good care simply as the absence of bad care.
If somebody has an excellent Personal Assistant, supportive family relationship or care service that genuinely enables them to live their life, we want to understand why it works.
Likewise, where care has deteriorated, become controlling or stopped meeting someone’s needs, we want to understand what changed.
This is particularly important because people do not necessarily describe difficult caring relationships using words such as “neglect”, “coercion” or “abuse”.
Rather than beginning with those labels, we want to give people space to describe their experience in their own words.
Starting with “What does good care look like?” provides a gentler way into these conversations and allows the research to follow people’s experiences wherever they lead.
What will happen with the findings?
This research is intended to lead to practical change.
We want to use what disabled people tell us to develop:
- A clear description of what good care looks like from a disabled person’s perspective;
- Recommendations for care providers and commissioners;
- Recommendations relevant to the future development of adult social care;
- Training about disabled people’s experiences of receiving care;
- Practical guidance for organisations providing care and support; and
- Potentially, further co-designed work exploring what a genuinely disabled-person-led model of good care could look like.
The findings will also provide Difference North East with evidence to contribute to regional and national conversations about the future of adult social care.
About Difference North East
Difference North East is a regional Disabled People’s Organisation.
Our work is based on the Social Model of Disability. We work to challenge discrimination, improve access and inclusion, and change how disability is understood.
This research starts from the principle that disabled people are the experts in our own lives.
The future of care should therefore be shaped with disabled people, not simply designed for us.
More information about those can be found on our website: www.differencenortheast.org.uk
There are two ways to get involved, the first of these is a questionnaire which takes around 10 minutes to complete, the second is a more detailed online interview which we will pay £50 access costs. If you’re interested, please email info@differencenortheast.org.uk with the word ‘Care’ in the subject title
