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The following resources examine the caring situations of LGBT carers and those they support.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Health, well-being, and social support in older Australian lesbian and gay care-givers

Informal care-givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care-giver is known to be associated with poorer health and well-being, and lesbian and gay care-givers report experiences of stigma and discrimination in the care-giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care-givers. We compared care-givers to non-caregivers on a range of health and well-being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care-givers who were caring for an LGBTI person to those who were caring for a non-LGBTI person. Among the lesbian women, care-givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care-givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well-being compared to those caring for a non-LGBTI person. Overall, results from this study suggest that older lesbian and gay care-givers may be facing some challenges related to their well-being and feeling supported, especially if they are caring for another LGBTI person.

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Caregiving Status and Health of Heterosexual, Sexual Minority, and Transgender Adults: Results From Select U.S. Regions in the Behavioral Risk Factor Surveillance System 2015 and 2016

Background and Objectives Insufficient research attention has been paid to the diversity of informal caregivers, including sexual and gender minority caregivers. This study examined health effects of caregiving separately from sexual orientation or gender identity status, while stratifying by gender among cisgender adults. We hypothesized that compared with heterosexual cisgender noncaregivers, heterosexual caregivers and lesbian/gay/bisexual (LGB), and transgender (T) noncaregivers would report poorer health outcomes (i.e., self-reported health, and poor mental health days and poor physical health days), and LGBT caregivers would report the worst health outcomes. Research Design and Methods This is a secondary data analysis of the 2015 and 2016 Behavioral Risk Factor Surveillance System data from 19 U.S. states. Results After adjusting for covariates and stratifying by gender among the cisgender sample, heterosexual caregivers, LGB noncaregivers and LGB caregivers had significantly higher odds of self-reported fair or poor health (adjusted odds ratios [aORs] 1.3–2.0 for women and 1.2 for men), poor physical health days (aORs 1.2–2.8 for women and 1.3–2.8 for men), and poor mental health days (aORs 1.4–4.7 for women and 1.5–5.6 for men) compared with heterosexual noncaregivers (reference group). By contrast, transgender caregivers did not have significantly poorer health than cisgender noncaregivers. Discussion and Implications LGB caregivers reported the worst health compared with other groups on multiple measures, signifying they are an at-risk population. These results suggest the necessity to develop LGB appropriate services and programs to prevent poor health in LGB caregivers. Existing policies should also be inclusive of LGBT individuals who are caregivers.

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End-of-Life Preparations Among LGBT Older Canadian Adults: The Missing Conversations

LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups 40 participants), lesbian/bisexual women (5 groups 29 participants), and transgender persons (3 interviews, 4 groups 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

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Impacts of regulatory processes on the experiences of carers of people in LGBTQ communities living with mental illness or experiencing a mental health crisis

This article presents the findings of exploratory research on the mental health and community services experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis. The aim of the research is to explore the experiences of carers in relation to provisions for carers and people from LGBTIQ communities in the mental health legislation, policy and practice standards in the state of Victoria in Australia. Data were collected from online surveys and in-depth interviews and analysed according to the alignment of the stated intent of these documents and the actual experiences of carers.

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Carers of people from LGBTQ communities interactions with mental health service providers: Conflict and safety

This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.

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Seeing and Supporting LGBT Older Adults' Caregivers and Families

The article focuses on the role of biological or legal family members of lesbian, gay, bisexual, and/or transgender (LGBT) older adults, in providing better care, comfort and safety, and talks of nurses to develop trust to recognize and communicate, and provides chart on questions to be asked.

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Applying the convoy model to support in care situations

This article considers the future of informal care situations, with a special focus on how social networks can support caring. Noting demographic changes and the endemic need for informal support, we outline the convoy model of social relations for proactive planning and contemporaneous caring. The article is grounded in empirical evidence, including comparative findings from four countries and about caring among two uniquely vulnerable populations: latelife remarried couples and lesbian and gay adults. Finally, we propose that caring be considered no longer an individual responsibility, but rather a family, community and societal responsibility basic to shared values and societal cohesion.

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Discussion Paper 7: Romancing the Carer - Intimate Relationships and Family Caring

This is the seventh paper in the Care Alliance Ireland Discussion Paper Series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion  within the wider community of academics, not-for-profit organisations and other interested parties. 

The relative unavailability of studies specifically addressing the issue of the impact on intimate relationships of Family Carers is worth noting. The majority of studies that have been undertaken often focus exclusively on the impacts of the disability on the relationship, rather than the impact of caring on the partner/spouse providing care, or on the partner/spouse of a Family Carer. Consequently, this paper is exploratory in nature, and is based on discussions with professionals and Family Carers. Where reference material is available, it has been included; however, material was not available for all topics under discussion in this paper.

The inspiration for the paper has been drawn from conversations with some of our member organisations and a number of Family Carers. These Family Carers have indicated that while this topic may not be of relevance to all Family Carers, it is a topic which those supporting carers must be aware of, and not be afraid to address if necessary.

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Discussion Paper 9: Family caring and minority populations

The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.

Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.

This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider. 

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Health-Promoting Self-Care in Family Caregivers

Caregiving for family members with cognitive impairment is stressful and time consuming. Because of the attention needed to manage the memory and behavior problems of the care receiver, family caregivers have little time to attend to their own health needs. Most research related to the health of family caregivers has been conducted within a stress-illness framework. Fewer researchers have studied caregiver health from a health-promotion paradigm. The purpose of this study was to compare health-promoting self-care behavior in family caregivers with demographically matched noncaregivers and to investigate the mediational effect of health-promoting self-care behavior on the relationship between stress and well-being. Findings revealed that family caregivers scored significantly lower on all measures of health promotion, with the exception of Nutrition and Number of Medications, and significantly higher on Barriers to Health-Promoting Actions. Health-promoting self-care behavior acted as a mediator to reduce the effect of caregiver stress on general well-being.

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Searching for LGBT carers: mapping a research agenda in social work and social care

Tentative efforts have been made in UK government policy and through pockets of social work and social care research to recognise how sexuality and gender identity shape the experiences of lesbian, gay, bisexual and transgender (LGBT) individuals providing care to others. In this article, we map the literature base of existing research in the field of LGBT care provision and outline themes of LGBT caring developed from a recent eight-month scoping exercise. Themes were generated from a scoping exercise conducted in England and Wales in which we gathered stakeholders' perspectives, including carers and carer organisations, about future research and problems for LGBT carers through focus groups and semi-structured interviews. We discuss three thematic areas developed from qualitative data: (i) the absent presence of LGBT carers in data collection and monitoring; (ii) the heterosexist responses and heteronormative assumptions encountered by LGBT carers from health and social care professionals, and (iii) efforts to disentangle the needs of transgender people providing care from LGB carers' experiences. To conclude, we identify lessons learnt for future social work research and directions for developing a wider research agenda.

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A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals

Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.

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Sexual Health

Discusses whether national context has influence on the experience and use of highly active anti-retroviral therapy for people living with HIV/AIDS. Information on a research of the International Collaboration on HIV Optimism on the comparison of gay men in terms of their levels of optimism about the effects of highly active anti-retroviral therapy; Statements used in the questionnaires to capture the degree of susceptibility and severity of HIV perceived in the context of treatments; Optimism scores of the population studied; Discussion on the role of informal carers in AIDS social care.

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Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer

There is a growing body of research showing that cancer impacts upon the sexuality of informal carers in a couple relationship with a person with cancer. However, this research is primarily focused on partners of a person with gynaecological or breast cancer, within a framework where the physiological effects of cancer on sexual performance are the focus. We conducted semi-structured interviews with 20 informal carers in a couple relationship with a person with cancer, across a range of cancer types. The aim was to explore accounts of changes to sexuality and intimacy post-cancer, in the context of discursive constructions of sexuality and the caring role. Our findings show that partners’ sexual experiences were shaped by absence of desire in the person with cancer; the stress and exhaustion associated with caring tasks; the repositioning of the person with cancer as childlike or as an asexual ‘sick patient’; and the belief that there were expectations about ‘acceptable’ sexual conduct in the context of cancer caring. Carers accepted the diminishment of their sexual relationship, but expressed feelings of disappointment, anger and sadness about this loss. It is concluded that it is vital that support services are developed, so that couples may develop new sexual strategies, and cope more effectively with potential disruptions to their sexual and intimate relationship.

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Two years on

Briefly reports on the Alzheimer's Society Lesbian and Gay Carers Network.

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All but invisible: older gay men and lesbians

The sexuality of older people and gay and lesbian sexuality in particular, is an issue that has been largely ignored in the nursing literature. But, says the author, older gay men and lesbians are becoming more vociferous about the health and social care services they have a right to expect. 

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Partners in care: being equally different: lesbian and gay carers

The images of other people we see on a daily basis in the media invite us all to compare ourselves with, identify with, or aspire to be like whoever is shown. Mostly this activity is of little significance and hardly touches our lives, but the further we know ourselves to be different from the norm then the more challenging those differences become to us.

This article describes the Lesbian and Gay Carers’ Network. The author argues that there remains a deep need within the health and social service sector, and indeed in the residential home sector, to learn more about us as ‘gay’ people, to learn how to empathise so that they feel safe to talk about their relationships and needs, and to encourage them to request help without feeling threatened. When society achieves that then the need for ‘gay’ people to act  as a network will decrease, but society is  long way from that goal at present.

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Categories and their consequences: Understanding and supporting the caring relationships of older lesbian, gay and bisexual people

This article advocates incorporating biographical narratives into social work practice involving older lesbian, gay and bisexual service users. Offering a critique of ‘sexuality-blind’ conditions in current policy and practice, the discussion draws on qualitative data to illustrate the potential benefits of narrative approaches for both practitioners and service users.

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Handle with care

Despite being an integrated part of the social care system, people with caring responsibilities often find their needs neglected by the NHS. Reports on research into developing an effective code of practice.

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Gay and lesbian carers: ageing in the shadow of dementia

This article reports on findings from a qualitative study, undertaken in England, which explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore this experience through the lens of a person's gay or lesbian sexuality. The paper reports two related themes that emerged from the wider study – respondents' hopes, fears and plans for the future and, specifically, the way in which their caring experiences had coloured their views and expectations of how their own health and social care needs may be met. Respondents' narratives reflect a range of pervasive anxieties about the future. First, about the possibility that they might be diagnosed with a condition such as dementia and, consequently, the myriad ways in which their sexualities and lifestyle choices may be perceived and interpreted as they themselves age and, possibly, require health and/or social care and support. In light of these concerns, respondents reflected upon the need for specialist service provision for older gay and lesbian people – an idea that was, perhaps surprisingly, not universally welcomed.

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Older LGBT people’s care networks and communities of practice: a brief note

This article critically examines literature relating to the care of older lesbian, gay, bisexual and transgender (LGBT) people. It promotes an analysis of the network context of this care and advocates the use of the concept of ‘communities of practice’ to understand the processes of network participation and identity negotiation.

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Hidden caregivers: providing appropriate services

3rd in a series of 5 articles on informal carers in the UK, focusing on carers who may be more isolated. 

Although most caregivers are, by the nature of care giving, hidden, some caregivers are perhaps more noticeable than others. This suggests that some caregivers are less noticeable, more hidden. This third article in this series on caregivers will focus on the ‘more hidden’ of the caregivers: male caregivers, young caregivers, BAME caregivers, LGBT caregivers, rural caregivers and caregivers who are elderly or have a disability themselves. Some suggestions will be offered that may help healthcare assistants (HCAs) and nurses to support these caregiver groups.

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A fairer future: the Equality Bill and other action to make equality a reality

The Equality Bill will strengthen equality law in England, Wales and Scotland by: introducing a new public sector duty to consider reducing socioeconomic inequalities; putting a new Equality Duty on public bodies; using public procurement to improve equality; banning age discrimination outside the workplace; introducing gender pay and equality reports; extending the scope to use positive action; strengthening the powers of employment tribunals; protecting carers from discrimination; protecting breastfeeding mothers; banning discrimination in private members’ clubs; and strengthening protection from discrimination for disabled people. This document explains how the Bill, supported by other action being taken by the Government and partners, will make Britain a fairer place to live and work now and in the future.

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Nearest and dearest? The neglect of lesbians in caring relationships

The article argues that caring within lesbian relationships has been ignored in social and health care studies and practice. It critiques the dominance of caring debates by relationships between parents and children and partnerships, but with the unspoken presumption that those involved are heterosexual. The paper concludes that social workers should engage with lesbian carers in supporting individuals and networks. It draws out a range of implications for policy, practice and research agendas.

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The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: A consumer-led project

Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care.

Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee.

The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences.

This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.

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Caring for mum and dad: lesbian women negotiating family and navigating care

This article reports on findings from a qualitative study that explored the experiences of twenty-one gay men and lesbian women who care, or cared, for a person with dementia in England. The aim of the study was to explore how a person's gay or lesbian sexuality might impact upon their experience of providing care in this context. Analysis of the data identified a number of consistent themes—carers' experiences of the early signs and symptoms of dementia, of receiving the diagnosis, becoming a carer and their hopes and fears for the future in light of their care-giving experiences. The article reports on one theme that emerged from the wider study—the strategies lesbian carers used to negotiate the complex and contested category of the ‘family’ in the context of their care-giving experiences. The findings highlight the variety of ways in which families, of both biology and choice, were central to respondents' experiences of providing care for parents with dementia and of receiving support for themselves.

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