Understanding the lived experience of homeless people

Project overview

Katharine House and Sobell House hospices wanted to better understand the needs of people experiencing homelessness at the end of life. Although there is evidence about what needs to be done on a national level to remove some of the barriers to hospice care, it was difficult to know how best to support local people and organisations.

They worked with the Lived Experience Advisory Forum (LEAF) to gather feedback and opinions from people with lived experience of homelessness. LEAF is a local service that is provided in partnership with the Gatehouse, Aspire and the Oxfordshire Homeless Movement.

With LEAF, the hospices designed and held two focus groups which were very well attended by 20 people. The participants shared their wants, needs, and concerns around the end of life, which included:

• fear of being in pain (and issues around pain medication for people with addiction histories)
• need for spiritual support
• not wanting to die in a place that is chaotic or unclean
• a desire to repair some relationships with family members
• wondering who will pay for their funeral
• wanting to be treated with dignity and respect, given choices, and told the truth
• ensuring loved ones are looked after following a death
• having experienced traumatic bereavement.

Outcomes

The hospices realised they have key strengths which can help homeless people with some of these issues. For example:

• clinical teams can explain how pain medication is prescribed and managed
• chaplaincy teams can provide spiritual support
• support with advance care planning can help ensure people’s wishes are recorded
• bereavement support teams can hold a bereavement cafe for people experiencing homelessness
• benefits advisors can signpost to support with funeral costs.

As a result of the focus groups, the hospices are now training staff to be better able to support people experiencing homelessness. They are also working with local homelessness support organisations to help them have conversations about death and dying with their clients, and improve relationships with the hospice.

Key facilitators

The hospices were successful in applying for a grant from the Masonic Charitable Foundation through Hospice UK, which allowed them to carry out the focus groups.

Working with LEAF to develop the focus groups was really beneficial. They made practical suggestions that helped homeless people to get involved. One tip was that the team should create a worksheet to sit alongside group discussions, so that anybody who didn’t feel able to join in with the group could share their opinions in a different way.

LEAF also helped the hospice team design the questions for the focus groups. For example, there is evidence that many people experiencing homelessness have low self esteem. So as well as asking them “what do you want for yourself at the end of your life?” the team asked “what would you want for a friend if they were dying?”. The answers to these questions were not always the same.

Challenges

Some of the staff at homelessness support organisations were initially reluctant to support the focus groups. They felt it was inappropriate or traumatic to be talking about death and dying (especially if they knew one of their clients had a life limiting condition). The hospice team used this as an opportunity for education, explaining the importance of having these conversations and busting myths around hospice care.

As a result, the hospice team have been able to help colleagues in the support organisations talk through their own concerns. Questions they have raised include “how do we support someone who is dying?” and “what do we do if someone is taken very ill but we know they don’t want to be resuscitated?”.

All of this work has led to more referrals being made into hospice services.

The team will be presenting the results of the research to the partner organisations, and using this as an opportunity to discuss next steps.

Image courtesy of Jeff Hubbard/PA Wire/Centre for Homelessness Impact.