LGBTQ and Need Home Care?

The first wave of an “out” LGBTQ generation is aging, and some individuals are experiencing the disabilities that may come along with that. At ICS we were very interested to hear about research into the home care needs of people who are LGBT or Q. And we were thrilled to realize that this research was funded by the federal government. No, sadly, not our federal government; the Canadian federal government – but still, pretty great, right?

If you think about it, there are few relationships that are as personal as home care, which, by its very nature, necessitates a loss of privacy. Yet, at the same time, home care is a business relationship, one that involves allowing one or more strangers to help you with what may be very intimate needs, while they are privy to everything that goes on in your home.

For these reasons, receiving services from even the most caring home care worker may cause discomfort, especially in the early stages of the relationship. If you are a member of a group that is subjected to widespread prejudice and ignorance, as is the case not only for people with disabilities but also for people who are LGBT or Q, the discomfort may well be unbearable. It may even blossom into fear.

As one research participant said, “It’s very different when you’re going outside of your home to the emergency room and receiving care, versus people coming into your personal space, your private life, where you have what you have going on and you may not be out about it.”

The research

Over a four-year period, professors at the York University School of Social Work and School of Nursing surveyed self-identified LGBTQ adults 18 and older with a range of disabilities and chronic health conditions about their experiences with home care. Half of those surveyed were under 50, nearly half were single, and half had incomes at or below the poverty line. The researchers also held focus groups and interviews with home care referral sources and hands-on providers, nurses, social workers, and agency administrators responsible for arranging and coordinating home care.

This research found that, compared to other people needing home care, those who are LGBT or Q are more likely to live alone and to be isolated from the support of their biological family, presumably, at least in part, due to stigma. Common sense suggests that, for at least some of these people, lacking the support of a close family member could make them more vulnerable to mistreatment, while at the same time increasing the need for formal, paid, home care.

The researchers found that some LGBT or Q people avoid home care despite a clear need for it, due to “fears related to disclosure of their sexual and/or gender identities,” and how that might affect their treatment in the privacy of their homes. One person discussed why they would only turn to friends and family for help:

“The few friends that I have that have used professional home care have had pretty negative experiences. If you happen to be a really homophobic person and you end up being the person that comes to my house, I wouldn’t feel safe.”

Of the LGBT or Q people who took part in the research, almost half feared their home care workers would not respect them if they “came out.” Such fears are clearly not unfounded. For example, one participant reported an encounter with a home care worker who said she had no familiarity with lesbians and, once she was informed of the client’s sexual orientation, refused to touch her.

The research also reveals a glaring hole in education and training on the part of the home care industry. It is not uncommon at all to request an agency home care worker who speaks a particular client’s language or comes from a similar ethnic or cultural background. And home care workers are routinely briefed on a wide range of client characteristics or preferences. This might include sharing information or training on anything ranging from dietary practices to religious beliefs. Yet, these efforts to provide client-centered culturally-competent care for people of different backgrounds does not seem to include people who are LGBT or Q. Fully 90 percent of home care workers interviewed for this study reported never having received LGBTQ-related education or training.

Still, when a comfort level exists, it makes a huge difference. As one study participant put it, “My worker of 5 years was very supportive and accepting of me. I was able to speak freely about my friends and my life. Support and acceptance helped me to feel less stressed overall and increased my levels of safety and trust.”

The Bill of Rights

The findings of this research have been used to create a kind of “Queering Home Care” bill of rights. The authors took an existing set of “patient values” developed in 1994 to advance Canada’s community home care services and adapted them to articulate the rights of LGBTQ people to receive high quality care, be full partners in decisions about their care, be treated with respect, and have all of the information they need. The “Queering Home Care” values can be found here. More details of the research are available here.