Improving care

The experiences of patients, carers, and clinicians in the later stages of life

Our reports and recommendations are based on the following user needs that we identified through user research with those living with life-limiting conditions and the people and clinicians involved in their care.

What we wanted to learn

We focused our user research on these two areas:

Understanding the experience of people living with life-limiting conditions towards the end of life, and those caring for them. We wanted to learn about their day-to-day activities, how they spent their time, what it was like to live with X or Y (as a condition) and what a better or worse day looked and felt like for them. We also wanted to know who they have around them in terms of care and support, and what kinds of services they interact with.

Understanding the experience of clinical teams that are caring for people with life-limiting conditions towards the end of life. We wanted to learn about the different roles involved in caring for people towards the end of life, what those roles do, how they deliver care and how they work together. We also wanted to know what barriers and challenges there are in meeting the needs of their patients and fulfilling their clinical roles.

What we did

We spent 10 weeks out in the field finding out what older people’s experiences of living with life-limiting conditions are like, in a mixture of contexts. Our field trips took us to a care home settings, hospice settings, social/sheltered housing settings and into people’s own homes.

As we moved into the discovery and prototyping phase, we gathered user needs from a clinical perspective. This included visits to clinical teams at hospitals in Stoke-on-trent, Airedale, Southampton and individual interviews with different roles within clinical and palliative care.

We used a range of methods to gather insights, from ethnography and contextual inquiry, to in-depth interviews, shadowing and user testing.

Over the course of the six month project we:

  • interviewed 20 patients
  • interviewed 9 clinicians, GPs, nurses and consultants working in palliative care
  • visited 4 hospitals and teams working in the NHS
  • spoke with 24 organisations developing products and services for end of life care
  • held 6 user research sessions in hospices, care homes and in social housing
  • spent a day shadowing a palliative care nurse
  • captured 59 evidenced user needs
  • did a lot of reading and desk research

Read about what people with life-limiting conditions need towards the end of life.

Read about what clinicians need so they can treat and care for people with life-limiting conditions.

Read pen portraits based on interviews with some of the patients we met.

We also had some other observations from our research.