A study looking at the experiences and care of lesbian, gay, bisexual and transgender (trans) people facing advanced illness (ACCESSCare Project)

Cancer type:

All cancer types

Status:

Results

Phase:

Other

This study looked at the experiences and care of people with advanced disease including cancer, who identified themselves as lesbian, gay, bisexual and/or trans.

More about this trial

You should ideally have access to a variety of healthcare professionals to provide you and your family and friends with help and support in the final stages of your life if you have advanced cancer Open a glossary item

This might include your GP and nurses, such as the district nurse, community specialist palliative care nurses (sometimes called Macmillan nurses and Marie Curie nurses).

We know from research that people do not always have the same access to care at the end of their lives. Some groups of people may not get the same level or quality of care as others.

This study specifically focused on people who identify themselves as lesbian, gay, bisexual and/or trans and who had a life limiting condition, such as cancer. Some research suggests that these people may not receive the support they need when approaching the end of their life.

The aims of the study were to:

learn more about their experiences
find out more about their care needs and preferences
understand any barriers to accessing care
find examples of best practice
try to improve access to care and improve the care provided

The researchers hoped that the results will help to:

develop resources for people who are lesbian, gay, bisexual and/or trans so that they can get the care they need at the end of their life
develop training for healthcare professionals to improve the care for these people

Summary of results

The study team concluded that people who identify themselves as lesbian, gay, bisexual and/or trans and who had a life limiting condition may have different or extra care needs when facing advanced illness or bereavement. The researchers then put together ten recommendations to try to improve care.

40 people aged between 27 and 94 years took part. These people were either:

living with advanced illness
carers of people living with advanced illness, including partners, friends or family
carers whose loved ones had recently died

Everyone taking part answered questions about their experience of:

advanced illness
the care that they, or the person they cared for, had received
their experiences of care – for example, whether they felt the care they received had been different due to their sexual orientation or gender identity

The people taking part talked about common needs of anyone facing an advanced illness. These included being comfortable, safe and pain free. They recognised that care at this stage of life should be centred around the person with the life limiting condition, and those close to them. Healthcare workers should take into account people’s individual care needs and choices.

However, the study team found barriers to person centred care at different levels.

Invisible barriers

Some people taking part shared past experiences. Many had experienced negative views, discrimination or violence before. These experiences had an impact on whether they were likely to share their sexual orientation or gender identity with health professionals.

Interactional barriers or stressors

Some people taking part described barriers that happened during the interaction between the person with advanced illness and a healthcare professional. The researchers called these interactional stressors.

Some people experienced healthcare professionals assuming that they were heterosexual. Others described professionals not acknowledging their partner at all in discussions. Trans people described experiences of being called the wrong gender. Or a lack of sensitivity when they talked about their gender identity.

Service level barriers or stressors

Some people taking part talked about a lack of lesbian, gay, bisexual and/or trans friendly support services. They talked of a lack of awareness by healthcare professionals of what is available. The researchers used this as an example of a service level barrier.

Good experiences

There were also examples of good care, from individual healthcare workers and from organisations as a whole. This made the people taking part feel recognised, acknowledged and respected.

Recommendations

The researchers have identified 10 simple low cost recommendations for individual healthcare workers and healthcare organisations to improve care for lesbian, gay, bisexual and/or trans people.

These are:

For healthcare workers

avoid using language that assumes the person is heterosexual
be sensitive in exploring sexual or gender history
respect that disclosing sexual or gender history is a choice
carefully explore intimate relationships and significant others – this includes family and friends
always include partners or significant others in conversations

For organisations

have policies and procedures in place about discrimination
have training about specific issues for people who identify as lesbian, gay, bisexual and/or trans
increase the amount of information which includes people from this group – this could be written information or pictures
show that your service is inclusive – for example by using rainbow lanyards or pin badges
make partnerships or get involved with community organisations that support people who are lesbian, gay, bisexual and/or trans

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.

Recruitment start:

01/11/2014

Recruitment end:

31/01/2016

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Chief Investigator

Dr Richard Harding

Supported by

Gay Men’s Health Charity (GMFA)
Health Equality and Rights Organisation (HERO)
King's College London
Marie Curie Cancer Care
NIHR Clinical Research Network: Cancer