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
) 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.