Negotiating personal networks: lesbian, gay, bisexual and trans older people’s networks of support towards the end of life This document summarizes key findings from a mixed methods study exploring the end of life experiences and care needs of older LGBT people. It discusses how LGBT older adults have negotiated social networks ranging from very extended to small, not relying solely on biological families. It also examines the anticipation and experiences of stigma, and the varied responses including internalizing, tolerating, or resisting stigma. The impact of living with the legacy of stigma is considered.

1. Negotiating personal networks: lesbian, gay,
bisexual and trans older people’s networks of
support towards the end of life
Kathryn Almack, Senior Research Fellow
Research Fellows: Anne Patterson, Meiko Makita
Sue Ryder Care Centre for the Study of Supportive, Palliative
and End of Life Care
Co-Investigators: Jane Seymour, Andrew Yip (University of
Nottingham); Anita Sargeant (University of Bradford)
School of Health Sciences

2. Exploring end of life experiences and care
needs in the lives of older LGBT people
Mixed methods study: survey (N=237) followed by in-depth
interviews with a sub-sample (N= 60) of the survey respondents
Gender %
Female 49.8
Male 46.8
Alternate identity
(e.g. ‘pangender’,
‘transgender’,
‘trans man’, ‘dual
gender life’)
3.4
Age range 37 – 93 years Sexual Orientation %
Heterosexual/straight 3
Gay 43
Bisexual 10
Lesbian 37
Other (e.g. ‘queer’, ‘dyke’, ‘asexual’
and ‘not the marrying kind’)
7
Gender Identity
17% of respondents have a different gender
to that assigned at birth

3. Some key dates
1967: Sexual Offences Act decriminalised homosexual acts between
men aged 21 and over (England & Wales). Similar legislation passed
in Scotland, 1980 and NI, 1982
1971: First Gay March in London
1973: Homosexuality removed from list of
psychiatric disorders in the American
Association's Diagnostic Statistical Manual
WHO listed homosexuality as a mental illness until 1990 and
transsexualism is still classified as a mental disorder under the
International Classification of Diseases (ICD)
1988: Section 28 (Local Government Act). Prohibited intentional
promotion of homosexuality or teaching of the acceptability of
homosexuality as a pretended family relationship. Repealed in
England in 2003
1997: Age of consent for homosexual acts brought in line with
heterosexual age of consent (16)
2000 onwards: legislation giving LGBT people greater rights

4. Networks
• Social networks ranged from very
• extended networks to relatively small
onot necessarily about numbers though
opeople reported having ‘families’ of
LGBT friends – less reliance on
biological families.
• Varied range of ‘rich’ histories - some people have
kept their sexual orientation to themselves their
whole life, and intend to carrying on doing so –
others have been ‘out and proud’ from early on in
their lives

5. Stigma
• Understanding respondents' accounts:
negotiating both the anticipation and/or the
reality of stigmatising encounters in everyday
social interactions.
• Respondents acknowledge the existence of
negative social attitudes and potential for stigma
• Responses to the imputed stigmatisation and
associated 'shame' vary:
– Some internalisation
– ‘Tolerating’ existence of stigma
but not internalising it
– Resistance & challenges

6. I’m fortunate to be very well-off; I have no concerns on that front, I
can afford the best care. But in terms of planning ahead … who can I
appoint? I think it correlates a lot with being gay and not having had
a kind of traditional family life. I worry if someone is in a position to
make decisions on my behalf, they need to accept who I am. I will
start talking to my niece more, and her daughter too, I forget her
name but she’s a nice girl … (gay man, 71)
Society, values, family and lack of information when growing up
meant I kept my ‘real’ self hidden. I feel I have led a false life.
Lonely, secretive, isolated. Not wanting to open up to others I
haven’t formed close friendships. Despite now attending the Gender
Identity Clinic I fear I will die male rather than female. I don’t want
to lose my children and die lonely as a female. If I was 20 now I’d
break out and live as female before getting trapped in a career and
relationships in a male role (Trans survey respondent)
Image taken from NCPC “Open to all – meeting the
needs of LGBT people nearing the end of life"

7. My partner, Fran, lost her children in a court custody
situation because of being a lesbian, and it was quite
common for my generation for custody to be
awarded against us. I didn’t want to risk any of that.
So I waited until my kids left home before I came
out. And coming out was actually great fun, it was
great fun, not a surprise to many actually! My
children thought I was the coolest mum in the
universe.
Later in the interview:
I have a big family network of support. And in terms
of friends, I’ve got a good friendship network as well,
plenty of shoulders to cry on. Lots of loving
messages I’m good friends with my ex-husband and
his wife, Barbara. He thinks Lydia is great. It might
be my last Christmas so we’re all getting together.
I’ve made plans for my funeral but in my will
everything goes to Fran, there’s not much and we
don’t own this house (lesbian, 62)

8. I'm my mother's principal carer now. One of the things she
has been anxious about is whether she would be outed in her
nursing home as the mother of a gay man, that someone
would realise John and I were partners and that would reflect
badly on her. So that has been difficult. So although I've
never hidden our relationship, I've never been explicit either.
I've kept away from my family because of their hostility to
me, and they never accepted my partner. Now I find myself
caring for my mother who is 90 and it has thrown up a lot of
emotions to deal with… On the plus side, I've started
corresponding with family on her behalf some of whom I've
not had contact with since childhood. They've all been very
accepting of us, much more so than my parents (gay man,
69)

9. People of my sort of age who have particularly in earlier years
experienced prejudicial discrimination, have maybe been
through a period of their lives when they felt quite isolated
and alone. So I can understand that some people may have a
feeling that gay specific services and residential
accommodation or whatever, caring, gives them a sense of
safety and certainty because they can’t predict and rely on a
totally integrated service necessarily giving them the feeling
of safety and certainty that they would want.
If you are terminally ill and if people making decision about
your treatment options and you're not necessarily confident
that they value your lifestyle as much as if you were married
with three kids then you know … I can understand that ...
(bisexual woman, 67)

10. And you’ve got to be able to be yourself, I mean I have heard of gay
guys on their own going into care homes who have to put
themselves back in the closet so to speak because it’s too risky of
prejudice and antagonism to feel that they can be themselves,
because they feel they won’t be understood. And I understand that
is a real fear even though it’s sad that it would be that way …
I’m sure people who are hesitant about being out have a whole
portfolio of these little situations that they know how to, or develop
strategies for covering up, trying to cover up, and that’s really sad at
the end of life when you can’t be yourself.
but I’m an optimist, I want to see a society where we don’t separate
out people because of sexual orientation. That’s why I feel it’s so
important to do stuff that I do … I want to see that within my life
we’ve gone from one of secretive gay society
to one where it’s actually completely normal
and properly included in all things like health
services and every other service (bisexual man, 64).

11. There was one time Eric was in hospital, he was
distressed and said ‘Oh you’re not going to leave
me are you?’ and he reached out to hold my hand
… anyway this guy in the next bed, I could see him
out the corner of my eye, sort of rear up in bed you
know. After I’d gone he rang to tell the nurse, I
want to move, don’t want to be here. And I’ve
never forgotten that. So, when he went in with the
cancer, that was something in our minds you know,
you don’t make it obvious you’re a gay couple. I
would have loved at times to have hugged him and
given him a kiss and I never felt able to. The vision
of that man always in the back of my mind, the
narrow minded sod! (gay man, 70).

12. Stigma revisited
• Considering the impact of living with
the legacy of stigma
• Drawing upon a range of strategies
to respond to and/or resist stigma
• Thinking about resources available to
counter stigma: economic, cultural,
social
• Positive outcomes are possible