Experiences of Palliative and End-of-Life Care among Older LGBTQ Women: A Review of Current Literature

Valenti, Korijna; Jen, Sarah; Parajuli, Jyotsana; Arbogast, Annabelle; Jacobsen, Anna Liss; Kunkel, Suzanne

doi:10.1089/jpm.2019.0639

Cited by 18 publications

(16 citation statements)

References 38 publications

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“…Older LGBT women may have different kinship networks from gay men and heterosexual older adults that include extended family of choice, former partners, former partners' new significant others, and longtime friends that serve as a community of support. Even within this smaller subgroup of LGBT women, there are differences and variation that warrant recognition (Institute of Medicine (US) Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities, 2011;Valenti et al, 2020). For populations such as older LGBT women, whose perspectives are not always included distinctly in research, there is the risk that their preferences may not be heard or met.…”

Section: Introductionmentioning

confidence: 99%

“…Though researchers have begun to inquire about the EOL experiences and subsequent bereavement needs of the LGBT population, there is a need for specific research in relation to older women's perspectives around EOL, including their interactions with health care and support professionals as well access to preferred grief support (Valenti et al, 2020). While it can be argued that the population of LGBT older women mirrors other adults in respect to lack of knowledge of and access to EOL information, this population is distinct in its history of advocacy, political action, and community building with the goal of emancipation from limitations, isolation, and other barriers to personal needs.…”

Section: Introductionmentioning

confidence: 99%

“…Whether through heteronormative assumptions of service providers or other support networks, outright discrimination and homophobia, or isolation, scholars have found that experiences faced specifically by older LGBT women inform future EOL preparation choices (Hash & Netting, 2007;June et al, 2012). Fears and concerns still may arise regarding personal agency, acceptance, and other bereavement needs (Farmer & Yancu, 2015;Valenti et al, 2020), and these concerns may influence the partner or spouse's perspectives around EOL and grief support well after the EOL experience of a significant other. This population may be wary of communications and interpersonal interactions during and after EOL experiences because of historical and cultural elements that frame their experience.…”

Section: Introductionmentioning

confidence: 99%

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We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner

et al. 2021

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We examine the end-of-life (EOL) experiences, communications, and grief support during and after their loved one’s death of older lesbian, gay, and bisexual women (LGB) ages 60 to 85 who have lost a spouse or partner. Queer gerontology was used as a theoretical framework, and descriptive qualitative analytical methods were used to discern themes. Through semi-structured interviews with a purposive sample of 16 participants, we identified two main themes: Gathering the Women and Compassionate Care. Although older LGB women may have some similar support needs as non-LGB adults, other needs are distinct but often unmet. While our participants’ interactions with health care professionals were overtly positive, there was often a lack of communication about grief resources, including lesbian and women-specific grief groups. Overall researchers, policymakers, and practitioners should be mindful of the importance of fully integrating and including populations into their care practices to avoid creating systems of superficial tolerance.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner

et al. 2021

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“…Stevens and Abrahm [ 56 ] identify that additional education is important to provide culturally competent care to gender and sexually diverse people in the palliative context. Examples of such care include staff engaging affirmatively with the person’s chosen family, using preferred pronouns, support to maintain preferred gender presentation and meticulous confidentiality [ 57 , 58 ]. Rosa et al [ 58 ] (p. 3) note that heteronormative and cisnormative lenses alienate intimate partners and caregivers and emphasise that “[c]are that is dignified, person-centered, and concordant with a patient’s values must honor the sacred bond of family-however they define it.”…”

Section: Discussionmentioning

confidence: 99%

Palliative Care, Intimacy, and Sexual Expression in the Older Adult Residential Care Context: “Living until You Don’t”

Cook

Henrickson

Schouten

2022

IJERPH

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Commonly, frail older adults move to residential care, a liminal space that is their home, sometimes a place of death, and a workplace. Residential facilities typically espouse person-centred values, which are variably interpreted. A critical approach to person-centred care that focuses on social citizenship begins to address issues endemic in diminishing opportunities for intimacy in the end-of-life residential context: risk-averse policies; limited education; ageism; and environments designed for staff convenience. A person-centred approach to residents’ expressions of intimacy and sexuality can be supported throughout end-of-life care. The present study utilised a constructionist methodology to investigate meanings associated with intimacy in the palliative and end-of-life care context. There were 77 participants, including residents, family members and staff, from 35 residential facilities. Analysis identified four key themes: care home ethos and intimacy; everyday touch as intimacy; ephemeral intimacy; and intimacy mediated by the built environment. Residents’ expressions of intimacy and sexuality are supported in facilities where clinical leaders provide a role-model for a commitment to social citizenship. Ageism, restrictive policies, care-rationing, functional care, and environmental hindrances contribute to limited intimacy and social death. Clinical leaders have a pivotal role in ensuring person-centred care through policies and practice that support residents’ intimate reciprocity.

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“…For example, people who experience social disadvantage or are at risk of homelessness face barriers that can limit their ability to access and maintain access to various services (Shulman et al 2018), including aged and end of life care. There is little understanding in Australia of the unique issues faced by LGBTI people in end of life care and advance care planning, coupled with a lack of recognition of sexual or gender identity and lack of knowledge around legal rights (Griebling 2016;Valenti et al 2020).…”

Section: Introductionmentioning

confidence: 99%

Steps towards equitable care: creating web pages to highlight diversity for Australia’s aged care and end of life care workforce

Rowley

Tieman

Jones

2022

Aust. J. Prim. Health

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Background. The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safety findings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations. Methods. Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. Results. Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users. Conclusions. As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a personcentred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce.

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Experiences of Palliative and End-of-Life Care among Older LGBTQ Women: A Review of Current Literature

Cited by 18 publications

References 38 publications

We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner

We Speak a Different Language: End-of-Life and Bereavement Experiences of Older Lesbian, Gay, and Bisexual Women Who Have Lost a Spouse or Partner

Palliative Care, Intimacy, and Sexual Expression in the Older Adult Residential Care Context: “Living until You Don’t”

Steps towards equitable care: creating web pages to highlight diversity for Australia’s aged care and end of life care workforce

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