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The Gerontologist
Vol. 47, No. 4, 490–503

Copyright 2007 by The Gerontological Society of America

Coming Out to Care: Caregivers of Gay and
Lesbian Seniors in Canada
Shari Brotman, PhD,1 Bill Ryan, MSW,1 Shannon Collins, MSW,1
Line Chamberland, PhD,2 Robert Cormier, MSW,1 Danielle Julien, PhD,3
Elizabeth Meyer, PhD,4 Allan Peterkin, MD,5 and Brenda Richard, PhD6
Purpose: This article reports on the findings of a study
whose purpose was to explore the experiences of
caregivers of gay and lesbian seniors living in the
community and to identify issues that emerged from
an exploration of access to and equity in health care
services for these populations. Design and Methods:
The study used a qualitative methodology based upon
principles of grounded theory in which open-ended
interviews were undertaken with 17 caregivers living in
three different cities across Canada. Results: Findings
indicated several critical themes, including the impact of
felt and anticipated discrimination, complex processes
of coming out, the role of caregivers, self-identification
as a caregiver, and support. Implications: We consider several recommendations for change in light of
emerging themes, including expanding the definition of
caregivers to be more inclusive of gay and lesbian
realities, developing specialized services, and advocating to eliminate discrimination faced by these
populations.
Key Words: Gay and lesbian aging, Caregiving,
Health care, Access and equity, Home care, Elderly

We wish to acknowledge the Canadian Institutes of Health Research,
the Social Sciences and Humanities Research Council of Canada, and the
Centre de Sante et de Services Sociaux Cavendish/University Affiliated
´
Research Centre in Social Gerontology for their support of this research.
We also wish to thank Kristen Catton for her hard work and dedication
to the project over five years.
Address correspondence to Shari Brotman, McGill University School
of Social Work, 3506 University Street #300, Montreal, QC H3A 2A7
Canada. E-Mail: shari.brotman@mcgill.ca
1
McGill University School of Social Work, Montreal, Quebec,
Canada.
2
Universite de Quebec a Montreal, Canada.
´
´
`
´
3
Department of Psychology, Universite du Quebec a Montreal,
´
´
`
´
Canada.
4
McGill University Department of Education, Montreal, Quebec,
Canada.
5
Department of Psychiatry, Mount Sinai Hospital, Toronto, Ontario,
Canada.
6
School of Social Work, Dalhousie University, Halifax, Nova Scotia,
Canada.

490

Discrimination faced by gay and lesbian seniors
and their caregivers in the health care system has
only recently begun to receive attention within the
field of gerontology (Brotman, Ryan, & Cormier,
2003). In Canada, a growing interest in gay and
lesbian aging has resulted in several community-led
initiatives documenting older gay and lesbian realities and challenging health care practitioners to
respond to homophobic and heterosexist discrimination and to adapt their services to these populations. Homophobia is the fear, hatred, or mistrust
of gays and lesbians often expressed in overt displays
of discrimination. Heterosexism is the privileging of
heterosexuality over all other sexual orientations and
identities; although it is often subtle and invisible,
heterosexism effectively works to create obstacles
to achieving full equality for gays and lesbians
(Brotman, Ryan, & Meyer, 2006).
Two notable Canadian organizations run by gay
and lesbian community groups are the 519 Community Centre in Toronto and The Centre in Vancouver,
both of which have highly organized and advanced
programs for gay and lesbian seniors and their
caregivers. Yet despite their efforts, policies and
practices addressing issues facing gay and lesbian
seniors in Canada continue to be marginal, particularly within mainstream health and social service
agencies.
Given this reality, it is no surprise to find that
identification of and responsiveness to those providing informal, unpaid caregiver support to these
seniors is even further removed from the health care
agenda. Faced with many of the same emotional and
physical strains that often accompany caring for any
disabled senior regardless of sexual orientation,
caregivers of lesbian and gay seniors in Canada
also experience unique challenges to identify themselves and receive appropriate care in an environment often marked by intolerance and avoidance. As
a result, caregivers may experience a sense of
isolation and invisibility in their attempts both to
provide care to their loved ones and to identify
The Gerontologist

support for their own needs. Because of the added
burden of exposure to discrimination, caregivers
may experience the challenges of providing care in
the context of reduced support, rejection by family
and society, and invisibility. Individuals who provide
informal care support to gay and lesbian seniors
remain hidden from view. If health care providers
are to develop best practices to address the unique
realities of gay and lesbian seniors, then the
experiences of informal, unpaid family and friend
caregivers must also receive adequate attention. For
these caregivers, the experience of ‘‘coming out to
care’’ must be given voice.
This article highlights the experiences and perceptions of caregivers to gay and lesbian seniors that
emerged from a study exploring health care access
and equity issues facing gay and lesbian seniors in
Canada. The study addressed the issues facing gay
and lesbian seniors living in the community who
experience a loss of autonomy from the perspectives
of three distinct groups: (a) gay and lesbian seniors;
(b) their informal, unpaid family and friend caregivers; and (c) providers of community and home
care health services. Using qualitative exploratory
interviews with caregivers that were undertaken
between 2002 and 2006, we explored some of the
critical themes that emerged in the interviews,
including self-identity as a caregiver, the impact on
caregivers of real and anticipated discrimination
faced by gay and lesbian seniors in the health care
system, coming out and the role of caregivers, and
the need for specialized caregiver support services.
(The term coming out refers to the process of
identifying oneself to others as gay or lesbian.) This
article addresses the unique perspectives of caregivers themselves and is an initial attempt to
articulate issues from the standpoint of this population. Further explorations of data emerging from
the standpoints of seniors and service providers are
currently underway, and we hope, as a research
team, to follow up this analysis with future articles
comparing and contrasting perspectives and experiences in and between cohorts of participants
(Brotman et al., 2003; Brotman et al., 2006). Hence,
this article will draw exclusively from the voices of
caregiver participants in the larger study. Finally, we
consider recommendations for change in light of
emerging themes expressed by caregivers.
The literature focused on individuals (regardless
of their sexual orientation) caring for gay and lesbian
seniors is limited. Rather than consider the experience of caring for a gay or lesbian older adult, the
literature tends to approach the issue from the perspective of gay and lesbian caregivers, many of
whom, admittedly, care for their gay or lesbian
partners, friends, or, more rarely, parents (Cantor,
Brennan, & Shippy, 2004; Cantor, Shippy, &
Brennan, 2002; Coon, 2004; Frederiksen, 1999;
Hash, 2001; Hash & Cramer, 2003; Moore, 2002;
Shippy, Brennan, & Cantor, 2003; Shippy, Cantor, &
Vol. 47, No. 4, 2007

491

Brennan, 2004). The majority of the literature that
describes caregiving to gay and lesbian people focuses
specifically upon HIV/AIDS caregiving and centers
around the physical, psychological, emotional, social,
and financial strains involved with caregiving for
a partner with HIV/AIDS (e.g., Irving & Bor, 1995;
Wight, Aneshensel, & LeBlanc, 2003). Apart from
those in Shippy, Brennan, and Cantor’s seminal work
on HIV caregiving experiences among lesbian and gay
elders, the individuals receiving care in most of
studies on HIV and caregiving represent largely a
young adult population (generally younger than 50
years old), and thus their usefulness for understanding the experiences of those caring for gay and lesbian
seniors is limited. We were also unable to uncover
any published research focusing on the experiences of
children caring for ailing gay or lesbian parents. As
a result, we know very little about their unique care
experiences.
Overall, research on caregiving to gay and lesbian
seniors is just beginning to emerge in the United
States and Canada. Although researchers have
explored a variety of issues and factors, the literature
has demonstrated that discrimination plays a key
role in the capacity for seniors and their caregivers to
access health care services (Brotman et al., 2003;
Brotman et al., 2006; Cahill & South, 2002; Hunter,
2005; Johnson, Jackson, & Arnette, 2005). Both the
anticipation of discrimination and actual experiences
of discrimination in health care services contribute to
great tension and represent a challenge to the
possibility of coming out to health care providers
in order to receive appropriate care. This represents
a significant challenge to seniors and their spousal/
partner caregivers. Several key authors who have
published in the area have stressed the importance of
expanding beyond the focus on burden and strain in
order to examine the unique and positive aspects of
caregiving and post-caregiving for this population
(Frederiksen, 1999; Hash, 2001; Hash & Cramer,
2003; Moore, 2002; Shippy et al., 2004). The available scholarship has also reported that there exists
significant experiences of heterosexist and/or homophobic discrimination at individual, social, economic,
policy, and institutional levels (Coon, 2004; Hash,
2001; Hash & Cramer, 2003; Hunter, 2005; Moore,
2002; Wenzel, 2002).
The few studies on gay and lesbian caregiving
have pointed to common issues consistent with the
general literature on caregiving, including managing
caregiving responsibilities, experiencing emotional
and physical strains, feeling tension in partner
relationships, and experiencing conflicts with employment responsibilities (Hash, 2001; Hash &
Cramer, 2003; Moore, 2002; Shippy et al., 2003).
Many respondents also noted positive aspects of
caregiving, including the fact that caregiving gave
them the opportunity to show love and maintain
a commitment to a significant other (Hash, 2001;
Shippy et al., 2003). Research has also highlighted

the challenges of navigating the disclosure or hiding
of their same-sex relationship to family, friends, and
coworkers during both the caregiving and postcaregiving periods (Cantor et al., 2002; Hash, 2001;
Hash & Cramer, 2003; Moore, 2002).
In these studies, most caregivers dealt with family
members, friends, and professionals who did not
provide them with the support they needed (Cantor
et al., 2002; Cantor et al., 2004; Coon, 2004; Hash,
2001; Hash & Cramer, 2003). Support or lack
thereof (if for reasons of not accepting respondents’
relationships) seemed to greatly affect the caregiving
processes (Hash, 2001; Hash & Cramer, 2003).
Supportive family, friends, and professionals often
served as buffers to caregiver strain, yet this support was not generally anticipated and respondents
seemed to expect insensitive and unsupportive individuals (Hash, 2001).
Shippy and colleagues’ (2004) more recent findings
differed somewhat in that their examination of gay
male caregivers presented a picture wherein caregivers received significant support from biological
family members. This challenged the myth of the
isolated gay male senior. Shippy and colleagues
found that caregivers had both friends and family
with whom they were close. Respondents asserted
that, when present, biological family members were
accepting and maintained contact. Nevertheless, the
majority of respondents stated that, when in need of
help, they were most likely to call on their partners
followed by their friends. Remarkably, however, one
third of the respondents expressed the need for more
adequate emotional support, and most called for the
gay and lesbian community to fill the important role
of caring for their elders.
Other work by the latter researchers echoed the
call for psychological and emotional support for
elder caregivers within gay and lesbian communities
(Cantor et al., 2004; Shippy et al., 2003). In their
groundbreaking research on caregiving among
middle-aged and older gay, lesbian, bisexual, and
transgendered New Yorkers, Cantor and colleagues
(2004) found that of 341 participants who answered
a mail survey, 46% had provided care to a family-oforigin member or a family-of-choice member during
the past 5 years. In all, 24% of those individuals
reported having cared for a person not related by
blood. More than half of those caring for family-ofchoice members were caring for a partner or a significant other. Apart from the expressed desire for
more psychological support, one third of the respondents also highlighted the need for more organized
social activities for older lesbians, gays, bisexuals,
and transgendered people (Cantor et al., 2004).
Respondents in many studies reported the commonality of homophobia and heterosexism visible
either in attitudes of staff or in policies and practices
(Coon, 2004; Hash, 2001; Hash & Cramer, 2003;
Moore, 2002). Some caregivers expressed anger and
hurt at how they were repeatedly denied acknowl492

edgement as family within policies such as visiting
hours or parking (Moore, 2002). Often professionals
would look to biological family members to relay
information or discuss issues that arose (Hash,
2001). Respondents generally expected to face insensitive individuals and did not anticipate support
from others (Hash & Cramer, 2003; Moore, 2002).
Caregivers were apprehensive about seeking support
from health professionals and services (such as
groups or home care services; Hash, 2001). In light
of this, respondents recommended policy changes
and improved training in health and human services
organizations (Hash & Cramer, 2003).
Studies have found that the majority of caregivers
were apprehensive about disclosing the status of
their relationship to health care professionals and
that they would use generalized language hoping
that, if professionals caught on, they would be
alright with it (Hash, 2001; Moore, 2002). Finally,
participants expressed that coping can be severely
hampered due to the fact that partnerships cannot
be openly acknowledged, shared, or disclosed. For
example, in one study, caregivers expressed negative
experiences with prior support groups wherein they
felt unsafe or uncomfortable disclosing their samesex relationship. Many expressed that their survival
up to that point had been largely based on concealing their relationships and/or sexual orientation,
making communication of feelings and thoughts
impossible in the context of support groups (Moore,
2002).
In conclusion, several themes exist in the small
literature currently available on caregiving to gay
and lesbian seniors. These themes include anticipated and experienced forms of heterosexist and
homophobic discrimination in the delivery of health
care resources to gay and lesbian seniors and their
caregivers; the challenges of identifying oneself as
gay or lesbian, or as the caregiver of a gay or lesbian
senior, in the context of receiving health care
services; the management of caregiving responsibilities; the experience of emotional and physical
strains; and the positive aspects of caregiving,
including those related to a demonstration of
commitment and the impact of informal support
on the well-being of seniors and their caregivers.
Previous research has also concluded that professionals currently know little about caregivers to gay
and lesbian seniors because of the paucity of studies
that address their unique needs and realities. These
conclusions point to the need for further research on
these often invisible populations.

Methods
The findings presented in this article emerged
from a larger study that investigated many aspects of
accessing health and social services for gay and
lesbian seniors in three cities across Canada. We
The Gerontologist

developed a 3-year participatory qualitative research
program that used an adapted grounded theory
methodology (Glaser & Strauss, 1967; Strauss &
Corbin, 1998) to uncover the multiple experiences of
care that were reflected in service access and delivery
with gay and lesbian seniors and their caregivers.
The focus on seniors, their caregivers, and health
and social service providers facilitated understanding
of the potential dilemmas, gaps, similarities, and
differences between the experiences of seniors and
their caregivers and the ways in which service providers understand and make sense of that experience.
We determined research processes in conjunction
with our local and national partner organizations,
including those representing gay and lesbian community organizations, health policy bodies, home
care organizations and caregiver groups. We established an advisory group made up of 10 national
partner organizations from the onset of the study in
order to enhance the trustworthiness (Denzin &
Lincoln, 1998; Lincoln & Guba, 1985) and authenticity of the research (Erlandson, Harris, Skipper, &
Allen, 1993). Our partner organizations were specifically involved in participant identification and
recruitment, development of interview guides, review
of data analysis, and member checking themes and
patterns that emerged. Several separate meetings of
local team members provided the research team in
local areas with opportunities to undertake more indepth regional outreach and analysis and to plan
knowledge transfer strategies. We designed this
research process to be a change process, and we
intended that the involvement of an advisory group
would move investigators’ and participants’ understandings toward change (educative and catalytic
authenticity). This was generally thought to be
achieved.
Issues of sampling are particularly relevant in
studies addressing sexual orientation (Brotman et al.,
2003). The history of silence around discussions
about the needs and realities of gay and lesbian
seniors on the part of health care and social service
providers as well as the reticence of seniors and their
caregivers to come out to providers may have made
some people hesitant to participate and often made
recruitment quite challenging. This is particularly
true for the current cohort of gay and lesbian seniors,
who have a unique historical experience regarding
oppression that is different from the experience of
middle-aged and younger gays and lesbians today.
Many older gays and lesbians lived their youths and
young adult lives in very hostile environments prior
to the development of the gay liberation movement
that began in the late 1960s in Canada and the
United States (Brotman et al., 2003). We cannot
understate that gay and lesbian elders who grew up
prior to the era of gay liberation faced considerable
obstacles to coming out. Many experienced overt
discrimination in their private and public lives. This
has resulted in the need to stay hidden and has
Vol. 47, No. 4, 2007

493

remained a prominent coping mechanism in the lives
of many older gay men and lesbians (Bonneau, 1998;
Cook-Daniels, 1997; Harrison, 1996; Harrison &
Silenzio, 1996; Kochman, 1997; Krauss Whitbourne,
Jacobo, & Munoz-Ruiz, 1996; Rosenfeld, 1999;
Saunders, Tupac, & MacCulloch, 1988). This is
particularly relevant in the context of health care
research initiatives, which may have historically
centered around the development of ‘‘curative’’
strategies designed to ‘‘fix’’ gay and lesbian people
of their same-sex attractions (Brotman, Ryan,
Jalbert, & Rowe, 2002). As such, recruitment efforts
in the current study emphasized the importance of
addressing this information and stressing the confidentiality of interview processes in order to respond
to potential participants’ concerns.
As is common in qualitative research methods, we
employed a snowball sampling technique as the
primary method of finding participants for the study
(Bogdan & Taylor, 1994; Bryman, 2001; Neuman,
1997; Pulice, 1994). Snowballing techniques can be
effective when a sample of interest is difficult to
identify (Grinnell, 1993). This is pertinent with
respect to gay and lesbian populations who, because
of past and current experiences of discrimination,
have remained largely invisible in health and social
service environments. Unfortunately, one of the
weaknesses of this technique is the risk that the
sample will result in a relatively homogenous group
of participants (e.g., friends refer friends, clients
come from the same agency, or key informants
suggest similar people). This emerged in the current
study, with many participants coming from referrals
from a small number of agencies or from within the
same community or circle of people. For example,
our female participants were largely activist in
orientation, having come from an experience of
feminist community organizing. Also, our participant group was relatively young. Still, caregiver
participants represented a wide range of people with
different relationships to the senior they were caring
for (partner, child, friend, other relative), living
arrangements (with and away from the care receiver), gender, and sexual orientation, and with
a variety of caregiving tasks and frequencies and
durations of support (see Table 1). We placed special
attention on establishing a climate of confidence to
facilitate participant involvement. This included
engaging in a prolonged manner both in the field
(through partner agencies) and in the interview
process itself (Lincoln & Guba, 1985, p. 301).
Overall, recruitment proved to be very challenging
throughout the research process, particularly in
Halifax, where we succeeded in interviewing only
2 caregivers. In Montreal, we identified only 5
caregivers for participation in the study. This
directly points to the level of invisibility of this
population and the variation of support in different
parts of Canada. In Vancouver, for example, where
a unique organization directed toward the needs of

494

The Gerontologist

F

M

F

F
M

F
M

M

M

F

F

F
F

F

Montreal 3

Montreal 4

Montreal 5

Vancouver 1
Vancouver 2

Vancouver 3
Vancouver 4

Vancouver 5

Vancouver 6

Vancouver 7

Vancouver 8

Vancouver 9
Vancouver 10

Halifax 1

Gay

72

60

37
68

57

61

42

58

47
36

62
46

62

52

61

Partner

Child

Relationship
to CR

Friend

Partner

Partner

Friend

Friend

Lesbian

Lesbian

Partner

Partner

Heterosexual Child
Lesbian
Partner

Heterosexual Sister

Lesbian

Gay

Gay

Heterosexual Child
Gay
Friend

Lesbian
Partner
Heterosexual Child

lesbian

Gay

Heterosexual Neighbor

60þ Gay

33

Sexual
Orientation

Note: CR = care recipient; CG = caregiver.

F

M

Montreal 2

Halifax 2

M

Gender Age

Montreal 1

Interview

Partner

Partner

Single, widow

Single

CG’s Relationship
Status

Unclear

Unclear

Unclear

Unclear

Cancer, then died
Unclear

Unclear
Cancer, then died

Breast cancer

Brain hemorrhage,
aphasia, then
slow recovery

With partner

With partner

Married
Divorced, with
partner

Divorced

With partner

With partner

With partner

Divorced
With partner

With partner
Single

Confused, colitis,
Divorced
arthritis, glaucoma,
intestinal problems
Disabled in a
With partner
wheelchair;
multiple sclerosis
Cancer
Single

Recovering from
stroke
Unclear

CR’s Health
Status

Lesbian mother Unclear
Partner
In a wheelchair

Lesbian sister

Partner

Gay friend

Gay friend

Gay father
Gay friend

Partner
Gay father

Lesbian friend

Partner

Gay male
tenant

Partner

Gay father

CR

Table 1. Demographic and Relational Chart

Grocery shopping
Instrumental tasks,
physical needs
Phone support, decisions,
occasional meal
Household tasks, phone
support
Household tasks,
accompaniment to
medical appointments
Cleaning, cooking, phone
support
Cleaning, groceries
Accompaniment to
medical appointments,
personal care,
organizing other CGs
Accompaniment to
medical appointments,
instrumental tasks,
emotional support
Decisions, accompaniment
to medical appointments,
emotional support

Groceries, cooking,
personal care,
medication
Household tasks, cooking
Personal care,
shopping, cleaning

Cooking, cleaning,
medication,
personal care
Functional support,
instrumental tasks,
companionship
Cooking, cleaning

Hospital visits

Form of Caregiving

13 years

2 years

Daily

Daily

3-week
visit
3 years
4 years

5 years

Daily
Daily when
visiting
4–5 times/week
Daily

12 years

10 years

5 years
10 years

2–3 times/week

1–2 times/week

4 months
6-hour shifts
around
the clock
Daily
Progressively
more intense
to daily
1 time/week
1–2 times/week

N/A
6 years

24 years

8 years

6 months

1 year

Duration

Daily

3–4 times/week

Daily

Daily

Frequency

community-residing gay and lesbian seniors exists,
recruitment of both seniors and their caregivers was
far more successful. The concern of having to identify as a gay man or lesbian (in the case of spouses
and partners) or as a child of a gay or lesbian senior
(in the case of adult children) in order to participate
in the study may have also contributed to difficulty
in recruitment. Still, we must consider the possibility
that gay and lesbian seniors in these locations have
fewer avenues of informal support or that there
exists a lack of identification on the part of those
who provide support to gay and lesbian seniors with
the term caregiver. Our team theorized that those
caregivers who form part of a friendship or fictive kin network with gay and lesbian seniors may
not identify themselves as caregivers, particularly
given the narrow definitions used in mainstream
service agencies that focus primarily on advancing
a caregiver agenda for heterosexual spouses or adult
children. This may be a subject for future research
initiatives.
Interviews lasted approximately 1.5 to 2 hr and
were audiotaped and transcribed. We developed the
interview protocol in a two-stage process in conjunction with the research advisory group. First we
developed interview guides and tested them with
a small number of caregiver participants. The
interview protocol was semistructured, with openended questions in several theme areas that provided
participants with the opportunity to discuss issues
important to them. The interview was based upon
four broad theme areas: (a) description of the
caregiver role and relationship, (b) experiences of
access to health care on the part of gay and lesbian
seniors and the impact of these experiences on the
caregiver role and relationship, (c) caregiver needs
and issues, and (d) areas for future change. Included
in the first theme discussion was a question designed
to allow participants to explore their identity as
a caregiver, whether they defined themselves as such,
and their feelings regarding caregiving. Section 2 of
the interview focused more specifically upon experiences of caring for a gay or lesbian senior in the
context of access to and equity in health service
delivery (i.e., caregivers’ perceptions of the kind and
quality of care the gay or lesbian senior received
and what this meant for their caregiving role and
responsibilities). Section 3 focused upon participants’
own health care and service needs with respect to
their caregiving role. Finally, Section 4 asked
participants to talk about what services were needed,
with respect to both the gay or lesbian senior as well
as caregivers. Participants had the option of having
a copy of the interview guide during the discussion.
In addition, participants received a 1-page sheet on
which the major themes were highlighted in order to
provide them with an idea of where the interview
was heading. All participants signed a consent form
and were assured of confidentiality in conformity
with ethical procedures of research. Interviews were
Vol. 47, No. 4, 2007

495

undertaken by the same interviewer in two of the
three regions, allowing for interviewers to learn from
their experience and transfer knowledge from one
interview to the next over the entire period of the
study. This supported integrity in the research process. The guide itself was meant to be open, allowing
participants to focus on specific areas that they
found meaningful while ensuring that they covered
the major themes. Although some change in interviewers occurred in one region over the 3-year
period, all interviewers were trained and were provided with support, feedback, and ongoing training
to ensure consistency in the interview process across
all regions.
We undertook analysis using the grounded theory
method outlined by Glaser and Strauss (1967) and
Strauss and Corbin (1998). Grounded theory is a
popular research methodology developed as a model
for theory generating research. The goal of the
analysis is to identify themes and the relationships
between these themes (patterns). The researchers
worked closely with the advisory group at this stage
to ensure the credibility of the analysis and the
applicability of the emerging concepts to practice
(Lincoln & Guba, 1985). Various members of the
investigative team simultaneously undertook content
analysis of transcripts (Gilgun, 1994) using the constant comparative method (Strauss & Corbin, 1998).
Members met regularly to compare and contrast
their analytic themes. Blind review of coding occurred with a select sample of transcripts to ensure
consistency in analysis and coding. We conducted
qualitative analysis of data on an ongoing basis as
the research proceeded, alongside data collection. In
fact, analysis informed data collection in an iterative
process. In the first pass, we analyzed the transcribed
interviews in order to come up with working concepts and hypotheses that informed future phases of
the work. At this stage, broad concepts such as what
the caregivers said about their experiences, the experience of interventions by health and social service
providers, and caregivers’ needs and perspectives
with respect to service intervention formed the basis
of the analysis. Several interviews were completed
and themes analyzed in order to determine the characteristics of further cohorts or themes we wanted to
address in subsequent interviews. Therefore, interviews occurred throughout the 3 years in stages that
sought to enhance the analytic depth of, and the
comparison in and between, cases. The use of N6,
a qualitative data software program, facilitated
both data coding and analysis.
Finally, in order to ensure that the research
process and the findings were authentic with respect
to the voices and meanings of participants themselves (Lincoln & Guba, 1985), we employed techniques such as member checking (going back to
participants and other key informants to check that
our analysis made sense to them and reflected their
original intent), referential adequacy (referring back

to the literature and to experts in the field to ensure
the analysis was consistent with both interview
transcripts and previous research), and prolonged
engagement (staying in the field and continuing to
interview for a prolonged period of time to ensure
both adequate context and content for analytic
purposes).
Results
Description of Participants
A total of 17 caregivers participated in the current
study. These included 5 from Montreal, 2 from
Halifax, and 10 from Vancouver. Participants in the
study included 4 adult children (3 of whom identified
as heterosexual and 1 as gay), 7 partners (5 lesbian,
2 gay), 4 friends (3 gay, 1 lesbian); and 1 sister and
1 neighbor (both heterosexual). The gender breakdown of the participants fit the expected finding of
more women caregivers (10) than men (7). The age
of the caregivers ranged from 33 years to 68 years,
with an average age of 63 years for the partners and
41 years for the adult children.
The caregivers in the study reported a range of
durations in the caregiving role. Some had only been
caregiving for less than a year, whereas others had
been caregiving for up to 20 years. Five of the
caregivers had provided caregiving support for other
family members and friends prior to the relationship
in question. The frequency of contact varied from
24 hours a day to 2 points of contact (calls, visits)
per week (see Table 1).
Self-Identification as a Caregiver
Research in the general caregiving literature
(reflecting the heterosexual caregiving relationship)
suggests that those family members who provide
unpaid instrumental, physical, financial, and emotional support to older family members do not often
identify themselves as caregivers. This is particularly
true of spouses who see caregiving as a natural
extension of their spousal role, something done out
of love or obligation or as a result of a reciprocal
relationship with the care receiver. Caregivers in the
current study identified with this reality, providing
clear indications that caregivers of gay and lesbian
seniors have the same sense of motivation and
identity (self-identification as a caregiver) as caregivers of heterosexual seniors. The following quote
exemplifies this:

commitment as a motivating factor for providing
care. This positive aspect of caregiving emerged in
two of our interviews with caregivers in specific
reference to lesbian communities where a value of
solidarity stemming from previous involvement in
feminist organizing may have contributed to other
forms of caregiver identity for these participants.
This pointed to a unique strength of the gay and
lesbian community that could potentially influence
the caregiving experience. One lesbian partner caregiver reflected on how her friends in the lesbian
community might perceive themselves: ‘‘Not as . . .
caregivers, but there would be rallying within the
community to say we need to put support around
[her].’’
This notion of community challenged the idea
that older gay men and lesbians were, because of
their sexual orientation, more isolated than their
heterosexual counterparts. In fact, some research has
suggested that older gay men and lesbians successfully engage in friendships and experience a wide
sense of community throughout their lives that
follows them into their senior years (Shippy et al.,
2004; Thompson & Richardson, 2002).
What was made evident in the current study was
that, for gay and lesbian seniors, the opposite
was equally true. Although some seniors had large
support systems, there were also those who lived
in relative isolation, such as this care receiver
before the lesbian caregiver network mobilized
around her:
. . . we found out that she was very ill and had a terminal cancer. . . . I was working at the bookstore . . .
and she used [to] often visit. . . . And then we
realized we weren’t seeing her anymore, and we
asked around and we heard she was ill. . . . Then
someone I met by accident said to me, ‘‘She’s always
in her apartment. . . . She’s very ill and . . . there’s
really no one looking after her.’’ . . . She wasn’t
eating, you know, she was too weak to eat . . . and
really take care of herself. (Friend, lesbian)

Mediating this reality was a sense of connection to
a wider community exhibited prior to getting older
that facilitated the coming out process, as well as
limited experiences of discrimination faced over time
that may have reduced the fear of connecting to
others:

I’m not really a caregiver, it’s a relationship based
upon love. I love my partner, I was always with him,
we will always be together. . . . It has been 30 years
that we are together, so I take care of him. . . .
(Partner, gay)

In her last round of cancer . . . there were a number
within the lesbian community who in different ways
put support around her. . . . There were lots of
things that came to the door. . . . The lesbian community, her friends, made . . . lots of attempts to
carry her through that time. . . . She would name it
as being held in a womb. . . . The women’s community, in that way, uh, was very supportive for
her. (Partner, lesbian)

One aspect of caring for a gay or lesbian senior
may include the notion of community identity and

Finally, the existence of ageism in the gay and lesbian community may have diminished the sense

496

The Gerontologist

of community felt in younger years leading to
potential areas of vulnerability as people aged:
I think that, the biggest worry was getting older . . .
because like he says, when you’re young, you swing,
you have friends . . . but when you start to lose your
hair, then you’re less sexy and you are alone.
(Female neighbor, heterosexual)

Overall, few caregivers identified outwardly with
the term caregiver. Although the reasons vary, expanding definitions of caregiver to include experiences of those caring for gay and lesbian seniors have
the potential to challenge more narrow definitions
legitimated only through biological connection or
heterosexual marriage currently held paramount in
the field of gerontology.
Discrimination
Previous research in Canada and the United
States has identified the discrimination faced by gay
and lesbian seniors in accessing health care and social
services (Brotman et al., 2003; Kimmel, Rose, &
David, 2006). The current cohort of gay and lesbian
seniors articulated this discrimination in two distinct ways. First was the actual discrimination that
these populations encountered in the health care
system. Second was the anticipation of discrimination
experienced by seniors prior to accessing health
services that mediated their willingness to come out
to health care providers or to access services altogether
(Brotman et al., 2006). This anticipated discrimination was largely based upon previous negative encounters in the health care system as experienced by
gay and lesbian seniors in their younger years, but also
included such realities as hearing stories of discrimination from others or experiencing discrimination in
other contexts (such as family, school, or workplace
settings) that might have caused a person to develop
a generalized expectation of discrimination.
Caregivers in the current study affirmed both of
these realities. For a majority of caregivers interviewed, both experienced and anticipated discrimination played an important mediating role in the
willingness to access resources.
Speaking of the general distrust of health and
social services as a major factor in a care receiver’s
reluctance to use services, these caregivers explained
I am certain [that being gay or lesbian affects the
quality of service one receives]. . . . It’s for sure that
he won’t have confidence in the health care
provider. . . . He is afraid of everything. (Female
neighbor, heterosexual)
My dad’s generation was more conservative,
more guarded. . . . So they are [more] reluctant to
accept help. . . . My dad wouldn’t want to be stigmatized as a gay. (Son, heterosexual)

Almost all of the respondents cited at least one
discriminatory incident with a health or social serVol. 47, No. 4, 2007

497

vice professional. For example, when asked whether
he thought the needs of gay and lesbian seniors were
understood by health and social service providers,
a gay son caregiver to his gay father remarked,
‘‘They told me that it would be better to hide this
aspect . . . the identity of my father.’’
Problems related to current experiences of discrimination (whether overt or covert) seemed particularly acute in relation to workers coming into care
receivers’ homes:
I do know people in home care services who, if they
know a person is lesbian or gay, will refuse and say,
‘‘You must send someone else because I’m not
comfortable with that situation.’’ . . . But they could
also not treat you very well because they have
to do the job . . . especially when it was to do with
personal care, so yeah . . . I think it’s a concern not
just to [my partner] but to me and others, too.
(Partner, lesbian)

Many caregivers expressed that discrimination was
often covert or subtle, thereby making it difficult to
identify, address, or respond to. This factor highlights
the difficulty in distinguishing between subjective
feelings or expectations of discrimination and actual
acts of discrimination. For example, the following two
quotes highlight the subjective feelings these caregivers had regarding health care providers’ treatment
in the form of ‘‘inferences’’ and ‘‘negative energy’’:
It’s a bit of a grey area, it’s hard unless somebody
says something. . . . [The care receiver] was aware of
her inferences . . . and he felt uncomfortable having
her around. (Friend, gay)
[Sighs] Yeah, [we experienced homophobia] just
in terms of energy around us. . . . Sometimes we’d
laugh about it and sometimes we would get irritated.
I do think we had one experience of a nurse being
more grumpy or sharp or impatient . . . her responses
were just more sharp. And I think it had something
to do with her being homophobic. (Partner, lesbian)

These subjective feelings and anticipated forms of
discrimination played an important role in the ways
in which caregivers responded to and experienced
their caregiver role. For example, more than half of
the caregivers spoke of the worry they had in leaving
the care receiver unattended during interactions with
health care professionals for fear of rendering the
care receiver more vulnerable. One lesbian partner
caregiver stated, ‘‘She’s going to have continued care
from this person on the night shift. . . . She is more
vulnerable. . . . I wouldn’t want to—to leave her
there on her own.’’
The fear of facing discrimination when accessing
health services rendered the caregiving experience
more complex. Of particular importance was the
requirement of caregivers to mediate the coming out
process, both with respect to care receivers, and in
many cases, themselves. Partners discussed their
concerns regarding respecting the care receivers’

desire to keep their sexual orientation private in the
context of interactions with the health care system,
thereby rendering the relationship between the care
receiver and the caregiver invisible. Previous research
has identified the common occurrence of older gay
and lesbian couples identifying themselves as
‘‘friends’’ or ‘‘roommates’’ as a coping mechanism
related to their generational experience of privacy
and to mediate negative treatment by others
(Brotman et al., 2003). This may make it increasingly
difficult for caregiving partners to show affection,
provide care when others were present, or gain
recognition as the care receiver’s spouse. For
example, one caregiving male partner described
having to carry his ailing partner into the bathroom
so as to give him a hug away from the eyes of
others. Efforts to advocate on behalf of the care
receiver were also more difficult as, by doing so,
one risked outing the care receiver. Adult children
addressed the difficulty in advocating for appropriate care for their parent in the context of
attempting to keep the sexual identity of their
parent private. As a result of discrimination experienced, adult child caregivers may have chosen not to
discuss the sexual orientation of their parents with
others:

receiver would receive, one gay friend caregiver
responded

I think that’s probably why my sister and I didn’t
openly talk about it to certain people. Because I
think they judged a lot more what’s going on in the
bedroom, and I don’t think that was really
important for my dad. When you talk to people,
when you tell them he’s gay . . . they want to know
more details and that sort of thing . . . what goes on.
They wouldn’t ask the same sort of questions of
a straight couple. And [my dad would get]
frustrated with it. So I just don’t bring it up unless
it’s close friends or something. . . We just have a dad
who just happened to be gay, that’s all. (Son,
heterosexual)

Finally, having the support of others who could
help to navigate the system and identify supportive
allies was an essential coping mechanism for
mediating negative encounters among caregivers.
For example, one caregiver to her lesbian partner
found it helpful to have her son help them navigate
the health system:

I think, you know, fortunately he’s able to voice his
concerns and express . . . what he wants . . . whereas
there are people that, I’m sure, aren’t able to, or are
intimidated and they would just accept the status
quo and . . . not even necessarily [as good as] the
status quo . . . (Friend, gay)

In addition, caregivers also expressed that being
out and having higher self-esteem made advocating
for services easier:
I think the difference [is that] now . . . we have more
of an expectation that people will be more tolerant
or more open than they were [back] then. . . . And
we are also in a different place because we’re more
comfortable, and . . . we can initiate something in
terms of making change . . . (Partner, lesbian)
I think that she [homemaker] was [religious] and
she just says it’s wrong, and she didn’t want to
acknowledge the relationship. . . . And, I don’t think
she was there very long, ‘cause I think he just
contacted the agency [and told them] that she’s not
welcomed back at the house anymore. (Friend, gay)

My son would know who was open to gays and
lesbians in their [medical] practices, and who would
not be . . . or he might have more of a sense [of how]
to navigate through. (Partner, lesbian)

Needless to say, negative experiences of discrimination resulted in reduced trust in health and social
service systems and the practitioners who work
within them:
. . . being in the hospital, in terms of access for
my partner, all those questions are there. . . . How
will the medical staff respond to us? Who’s
going to withdraw good care, or shift care if they
have homophobic [attitudes] or have a sense that
they’re uncomfortable in the room? (Partner,
lesbian)

Being vocal enabled both care receivers and
caregivers to advocate for better service. Five caregivers gave testimony as to how the care receivers
openly voiced their concerns and demanded professional, respectful care with both medical professionals and/or home care staff. When questioned
whether he felt that sexual orientation affected the
quality of health care and social services that the care
498

Adult children providing care to gay and lesbian
parents may have found themselves in a unique place
with respect to the coming out process. Two children
expressed that their parents being out may have led
to assumptions about their own sexual orientation,
thus exposing them to experiences of discrimination
by association despite their own heterosexual
orientation. One caregiver stated:
‘‘What [does it mean] if someone’s parent is
gay?’’ . . . They would probably ask that. And then
they probably question, ‘‘What is your own
sexuality?’’ . . . which is a common question you
hear. And it’s kind of frustrating after you tell it
about 20 times and it goes on and on. . . . It’s my
dad, my dad’s partner, it’s [not me]. (Son,
heterosexual)

This highlights the reality that caregivers who
are put in a position of having to advocate for
their loved one may find themselves exposed to
discrimination.
The Gerontologist

Support
Support can have an important mediating effect
on the negative experiences of caregivers. Although
approximately one fourth of the caregivers interviewed reported having satisfactory to significant
family support, they also pointed to the importance
of ‘‘chosen family’’ (friends and community members who are present to provide support and love in
the absence of biological family).
Overall, interviews revealed that when people had
come out to their families, under the condition that
they were accepted once out, more potential existed
for a wider breadth of support. Alternatively, when
care receivers and caregivers were not well received by
family and did not have other avenues of support, they
may have had to rely on family members who may not
have had the sensitivity, level of acceptance, or courage to advocate adequately for them. In this context,
support from family members may have been more
complex and/or stressful. One caregiver described
how she and her partner dealt with their families:
. . . some of them are still learning what to do with
her sister being in a lesbian relationship. And some
of them did try to find ways to make connection,
and [for] others it was just silence. [I helped] her to
think through how she might want to talk to her
family and identify what she needs from them and
doesn’t need from them. (Partner, lesbian)

Another caregiver expressed the difficulty gay and
lesbian seniors faced when isolated from family. A
lesbian friend caregiver discusses her friend’s situation as follows: ‘‘The family rejection . . . and not
being able to have access to her child [was very
difficult for her].’’
When care receivers were connected to a gay or
lesbian community, the support gap may have been
filled by chosen family or community members. One
lesbian friend caregiver explained, ‘‘. . . and she was
very happy, you know, to see all these lesbians who
were around, and I think that’s very important . . .
because we were her family, you know.’’
This broadened sense of community as family is
not always understood by mainstream health care
providers who continue to view caregivers as biological family members. Anyone outside of this model
is subject to misunderstanding, as one lesbian friend
caregiver stated: ‘‘And it was funny . . . the nurses
asked her from what sect we were. They thought we
were a religious sect, you know [laughs]. . . .’’
Needless to say, regardless of whether it is
through social involvement or through community
groups, the more connection a care receiver or
caregiver has with his or her community or with gay
or lesbian friends, the more potential exists for
a wider network of support; consequently, the more
potential exists for diffusion of caregiver responsibility and mobilization of caregiver support. Individuals who are isolated will be more vulnerable and
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499

thus deserve the particular attention of service
providers and systems.
The issue of finding supportive environments for
caregiving children may have been more complex,
however, as participants’ friendship and family
circles did not necessarily contain individuals who
were gay friendly and, thus, these caregivers may
have felt isolated in their role. Those who have
managed to identify support for themselves did so
through a pathway familiar to gay and lesbian
people. Four caregivers interviewed expressed that
they themselves received support from other members of their family network (including children,
siblings, and nieces or nephews) as well as from
within their friendship circle. This reality confirms
that caregivers can also experience feelings of
support from a broader network, just as gay and
lesbian seniors do. Generally, they locate those
members of their community, family, or friendship
network who are supportive of gay and lesbian
people and who have some knowledge of the
community. In fact, 3 of the 4 caregivers of gay
and lesbian seniors who themselves identified as
heterosexual expressed the importance of selecting
friends who were supportive of gay and lesbian
people. An adult heterosexual son caregiver explained the source of most of his support: ‘‘Probably
my friends, you know. I have a good, close network
of friends, and they know that my dad is gay.’’
Services
Given the important role that caregivers of gay and
lesbian seniors play, it would seem essential for there
to be some supportive services made available to
them. Unfortunately, caregivers expressed a lack of
awareness within mainstream service settings regarding their needs or realities. One caregiver stated:
I guess there’s not many organizations that you can
go to as a caregiver and say, you know, ‘‘Can you
help me out? You know, I’m stressed out,’’ and stuff
like that. I would never do that. I would probably
go to my friends. . . . I don’t know if there’s any
support group for . . . sons and daughters looking
after their [gay] parents. (Daughter, heterosexual)

Several caregivers also stated that, although they
could identify a caregiver support group in their
geographic area, they were reluctant to join because
of fears of being ostracized, discriminated against, or
isolated within the heterosexist environment. Indeed,
previous research has indicated that many caregiver
support groups are implicitly limited to a heterosexist
framework (Moore, 2002). The following adult
child caregiver reinforced this point:
. . . of course, [it] would be great to have . . . a
support group. [You] can go and talk about the
caregiving needs of your dad or his partner and not
be given the same sort of stigmatism. . . . If I went

to a support group, it would probably be more of
a straight group . . . and they would get into issues
about your dad being gay and [ignore] his care
needs. I find that frustrating. I probably wouldn’t go
back. (Son, heterosexual)

The following caregiver drew the connection
between her partner needing a support group
specifically for lesbians and the fact that she herself
might also benefit from a similar group for caregivers:
. . . I know that [my partner] has attempted, even
through the health care system, to find a support
group where she could talk about what it’s like to be
a lesbian [with an illness]. And for her it carries
some differences. . . . There isn’t a place where she
can talk about what it means, as a partner to a
woman and in her own sense of herself as lesbian. . . .
Perhaps that would have been helpful for me, too,
because [lesbian] partners carry [the] journey differently. (Partner, lesbian)

Discussion
In the current study, caregivers shared their
experiences of caring for a gay or lesbian senior
from a variety of perspectives and positions.
Participants addressed discrimination in care, both
from the perspective of what the care receiver
experienced as well as in the context of caregiver
support. For the most part, caregivers expressed that
both actual discrimination and the fear of being
discriminated against (what we have described as the
anticipation of discrimination) have an impact upon
how seniors use services and how caregivers interact
with services in order to protect care receivers from
potential harm. Anticipation of discrimination can
be based upon many experiences (e.g., those of
seniors and their caregivers in previous encounters or
in their younger lives, or those they have heard from
others). In addition, although experiences of hostility
were more common in historical accounts, there
continues to be discrimination, albeit often more
subtle, in the form of negative attitudes, comments,
or, as one caregiver put it, ‘‘energy’’ that surrounded
their treatment. In the end, when care receivers are
reluctant to access health and social services because
of real or anticipated discrimination, the consequences for caregivers are numerous. First, if care
receivers are alienated from services, then it is
reasonable to assume that caregivers might also
refrain from making the most of services available in
an effort to protect and/or respect the wishes of
their loved ones, or to avoid discrimination themselves. Second, the less care receivers make use of
health and social services, the more is demanded of
their caregivers. In essence, caregivers of gay
and lesbian seniors may provide care for individuals who might otherwise receive care through
the long-term-care or home care network. There
500

are several aspects to specialized services that could
be considered. These include such issues as the
development of mandatory training sessions on
the needs, realities, and issues facing gay and
lesbian seniors and their caregivers; the hiring of
gay and lesbian health care workers; specialized
support groups or telephone support lines for
caregivers caring for gay and lesbian seniors; and
community outreach programs designed to invite
gay and lesbian community health professionals
onto boards and committees within mainstream
agencies.
In order for experts to address the important
concerns revealed by this study, caregiver participants made several recommendations for current
health and social service agencies and providers in
the senior services sector. There was an expressed
need for specialized senior services, including those
found in the voluntary, home care, and residential
sectors. Whether these are identified and created
within existing publicly funded services or developed
through the voluntary or private sector remains an
important question for consideration, particularly
with respect to access and equity. Several caregivers
pointed to the debates within the gay and lesbian
communities as to whether it is possible to advocate
for the creation of specialized services through the
public sector. As one caregiver stated in reflecting on
retirement and nursing homes
With gay couples going into retirement more and
more, I would hope someone would open up a gay
seniors home one day. . . . And then the [question of]
public versus private . . . in the public system, which
is funded by government dollars, [you] probably
couldn’t impose . . . but private health care, because
it’s private, they might be able to open a gay home. . . .
(Friend, gay)

The issue of financing is paramount in order to
ensure the development and delivery of services and
equitable access. It is essential that gay and lesbian
community organizations, as advocates for the
eradication of homophobia and heterosexism, be
financially supported to develop expertise to address
the needs of gay and lesbian seniors and their
caregivers as the most appropriate place to begin
change-making efforts. Findings also point to the
need for the development of services, including
support groups, targeted for caregivers. Five caregiver respondents either anticipated or had experienced support groups operating within heterosexist
frameworks, and this served as enough deterrent for
them not to access those support services that may
have been available.
All of the caregivers highlighted education and
training of health and social service professionals
in hopes that these practitioners could learn acceptance, address heterosexist assumptions, and confront homophobia. Also, individuals who work with
seniors in the health and social service sector would
The Gerontologist

benefit from learning to identify the more subtle
clues behind individuals’ reluctance to access services
so that they may proactively address potential
problems, concerns, or needs.
Caregivers who felt comfortable advocating for
care receiver rights to full and equal access to services tended to have a sense of entitlement to and
assurance of their own rights as well as a comfort
with being out as gay or lesbian themselves, as was
the case with partners and/or friends providing care.
The implications of this finding for health and social
service professionals entail working toward empowering seniors and their caregivers as well as developing explicitly gay- and lesbian-friendly services
or safe spaces for those caregivers and care receivers
who might still be ‘‘in the closet.’’ This includes but
is not limited to such issues as training employees at
all levels so that they provide a warm and welcoming
environment; using gender-neutral language in discussions about relationships, life history, and identity; providing opportunities to celebrate all forms of
diversity; ensuring confidentiality in communication;
supporting the wishes seniors have regarding care
planning and making sure that they are understood
and respected; and engaging in dialogue with gay
and lesbian community organizations to enhance
integration and knowledge transfer.
Findings indicate that, overall, support tends to
mediate negative experiences, especially when it
comes in the form of advocacy around potentially
discriminatory behaviors or policies. The gay and
lesbian caregivers in this study were mostly out to
their families, and this seemed to be an important
factor in garnering more support for the care
receiver. When care receivers are less out in their
gay or lesbian communities or are isolated from the
potential of community, they may have to rely on
inadequate family support or force more responsibility onto the relatively isolated shoulders of the
caregiver. Here it is also important to address
situations in which adult children (or other biological family members) are in conflict with a gay or
lesbian partner in the care of an older adult. In some
cases, the partner may be unlikely to have legal
rights, and a biological family member who is not
comfortable with a relative’s sexual orientation
might command power that alienates the partner.
Although this reality has changed in Canada, where
the legal recognition of same-sex partnerships has
given legal rights to partners, these partners might
not always be vocal, identify as a conjugal partner in
the public realm, or be prepared to advocate for
himself or herself in the context of a disagreement
between the partner and the biological family.
Family structures and relationships are complicated,
and there may be some instances when heterosexual
family members either get involved even though they
are not entirely comfortable with the care receiver’s
sexual orientation or exclude a supportive partner or
ally from decision-making capacity. The implication
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501

for health and social service professionals again
involves sensitivity to the needs of caregivers and
care receivers as well as to the potential reasons for
conflict in families regarding care and decision
making. This puts the responsibility on health care
providers to engage in family conflict resolution or to
advocate for the same-sex partner in cases in which
the older person cannot speak on his or her own
behalf. It also points to the necessity of educating
older gay and lesbian people about the need to create
living wills and/or mandates to ensure that their care
desires and needs are understood, to provide caregivers with adequate documentation as to their role,
and to provide further assurances that these will be
respected in emergency situations.
Finally, specific attention is warranted to the
unique issues and realities facing heterosexual caregivers, particularly children, caring for gay and
lesbian seniors. This population has not received
much attention from researchers or practitioners to
date. The current study points to shared concerns
with other caregivers of gay and lesbian seniors,
most notably regarding the role they play in
mediating discrimination, advocating for appropriate services, and providing hands-on care. However,
adult children who are heterosexual may also be
exposed to homophobic and heterosexist discrimination as a result of their roles as caregivers; these
are forms of discrimination that they may be ill
equipped to face. For example, they likely have not
experienced these forms of discrimination first hand.
In addition, compared to gay and lesbian partner or
friend caregivers, heterosexual caregivers may have
fewer contacts with individuals or communities who
can provide a supportive environment in dealing
with this new and difficult experience. Only one of
the heterosexual caregivers in the current study made
mention of having supportive relationships within
the gay community. Two other heterosexual caregivers spoke of having close friends who knew of the
sexual orientation of the care receiver. Helping build
connections to people who can help heterosexual
caregivers deal with and respond to discrimination
would surely reduce stress and provide opportunities
to learn how to address both the experience, and
anticipation, of discrimination. Although caregiver
support services and voluntary caregiver organizations
must be made more welcoming for caregivers of gay
and lesbian seniors as a whole, it may be best to offer
adult children a space to discuss their unique
experiences and to connect with one another.
The results of this study clearly indicate that
although experiences of caregivers to gay and lesbian
seniors often echo those of caregivers to heterosexual
older adults, differences do exist. These revolve
primarily around the real and anticipated discrimination confronted from professionals, and programs
and policies that not only do not take these
populations into consideration but often deter them
from making themselves visible. The legitimate fears

that seniors have of encountering homophobia and
heterosexism in health and social services may mean
that caregivers are called on to care more intensely
and for a longer period of time than other caregivers.
This points to a need for involving gay and lesbian
health activists in organizations, services, and policy
development to ensure that issues of overt and subtle
discrimination are seen, highlighted, and addressed
effectively.
The inclusion of gay and lesbian caregivers in
already existing diversity agendas within mainstream
senior services and caregiver organizations is a necessity in order to advance responsiveness and support
to them. This could be facilitated by an expansion of
the often narrow definitions of caregiving currently
in place in both professional and popular discourse
that prioritize recognition of those biologically
related or married to the care receiver. Indeed, the
sense of solidarity and community that lead some to
the caregiving role in gay and lesbian communities
can provide a new model of care beneficial to all
seniors and their caregivers. Understanding under
what conditions the development of such a sense of
community solidarity can lead to a decision to care
can help professionals enhance and support options
that are truly community driven and responsive to all
older people in society.
Finally, given the paucity of research on caregiving to gay and lesbian seniors, we suggest that much
more research needs to be undertaken to explore
these important and pressing issues. Our study was
limited by several factors, including sampling processes that contributed to a lack of diversity in
participants on the basis of race, ethnicity, and class.
We also were unable to a large degree to identify
caregivers in smaller regions. In addition, issues
regarding identity as both a caregiver or as gay or
lesbian contributed to difficulties in recruitment. In
this study, several participants told us that they did
not identify themselves as caregivers (as is consistent
with all caregivers), but simply as family or loved
ones. In light of this, future studies must adapt
outreach and recruitment strategies to identify
people through the widest lens possible in order to
ensure inclusion of those who would otherwise not
come forward because of lack of identification with
the targeted population. Using terms that describe
people’s role in the context of care and not simply
the caregiver label might help to increase the
diversity of participants. Finally, the study was also
limited by the use of gay and lesbian identity
labeling for outreach and recruitment purposes. As
with much research on gay and lesbian populations,
those who were most comfortable identifying themselves as gay or lesbian were most likely to agree to
participate. This resulted in a lack of representation
of those who do not identify with these labels or who
are not out to others. Most people we interviewed
were comfortable either with being out or with their
care receiver being out. As a result, the current study
502

missed the most invisible cohort of caregivers.
Caregivers who were not part of this study because
of even greater distress, greater disconnection, or
greater distrust of the research establishment might
have had even more serious limitations and problems. Certainly, the combined factors of not identifying as a caregiver and being private about the
orientation of the care receiver as gay or lesbian
posed some problems with respect to recruitment
efforts. Future research areas include some proposed
previously, such as a comparative analysis of gay and
lesbian caregivers, heterosexual caregivers, and other
minority caregivers (including ethnocultural minority populations); caregiving to pre- and postliberation seniors; experiences in rural contexts and
with respect to diverse social variables, such as race,
ethnicity, and class; legal and financial concerns in
the context of rights-based discussions across jurisdictions; caregiving to gay and lesbian seniors in
institutional settings; and caregiving issues for bisexual and transgendered seniors.
There are many unexplored avenues of caregiving
to gay and lesbian seniors. In Canada specifically, the
possibilities for funding and institutional support for
research and the interest in advocating for practice
and policy changes to support gay and lesbian
seniors and their families are slowly increasing.
Researchers must be encouraged to undertake
projects in a manner that prioritizes resource sharing
and partnerships with community and health care
organizations to ensure that results are communicated to health care professionals and community
activists. In this way, research findings can contribute to the development of a commitment to
change on the part of gay and lesbian communities
and mainstream health care sectors in order to
guarantee that gay and lesbian seniors and their
families find support, comfort, and services designed
to meet their needs as they age.
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Received July 21, 2006
Accepted January 2, 2007
Decision Editor: Linda S. Noelker, PhD