Au vue de notre expérience en soins palliatifs, nous nous sommes demandés pourquoi la sexualité des patients ne fait-elle pas partie intégrante de la prise en charge globale en soins palliatifs ? Dans notre cadre conceptuel, nous avons travaillé sur les concepts de sexualité, de tabous culturels, de mécanismes de défense des soignants et enfin de dissonance cognitive.
Ce cadre théorique nous a amené à formuler deux hyptohèses :
L'émergence de mécanismes de défense chez les soignants entrave l'ntégration de la sexualité dans la prise en charge globale en soins palliatfs. Ces mécanismes de défense sont l'expression d'une dissonance cognitive.
Afin d'explorer nos hypothèses, nous avons réalisé dix entretiens semi-dirigés avec des soigants travaillant auprès de patients en fin de vie (en unité de soins palliatifs ou en service avec des lits identifiés de soins palliatifs). Après l'analyse des résultats, nos deux hypothèses ont été validées. La confrontation des résultats de l'étude aux apports théoriques nous a permis de dégager des préconisations afin d'intégrer le besoin de sexualité dans notre prise en charge.
Sexuality, as one of the determinants of quality of life, includes different subjective dimensions related to identity, communication and intimacy. According to the World Health Organization (WHO), sexuality is a central aspect of being human throughout life and encompasses sex , gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction".
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BACKGROUND: Although national organizations advocate that health-care providers ask patients about sexual health and sexual and gender minority status-to learn, for example, about side effects of treatment and to understand patients' social support-these conversations often do not occur. This study explored health-care providers' reasons for having/not having these conversations.
METHODS: This single-institution study recruited health-care providers from medical oncology, hematology, radiation oncology, and gynecology. Face-to-face interviews were recorded, transcribed, and analyzed qualitatively.
RESULTS: Three main themes emerged: (1) patient-centric reasons for discussing/not discussing sexual health and sexual and gender minority status ("So I think just the holistic viewpoint is important"); (2) health-care provider-centric reasons for discussing/not discussing these issues ("That's going to take more time to talk about and to deal with…" or "I was raised orthodox, so this is not something we talk about…"; and (3) reasons that appeared to straddle both of the above themes (eg, acknowledgment of the sometimes taboo nature of these topics).
CONCLUSION: Although many health-care providers favor talking with patients with cancer about sexual health and sexual and gender minority status, limited time, personal reluctance, and the taboo nature of these topics appear at times to hamper the initiation of these conversations.
Discussing sexual health with healthcare patients and their partners is difficult and often avoided. The PLISSIT model is a framework to effectively initiate the conversation about sexual concerns. This rapid review and small meta-analysis explores and clarifies knowledge about the effectiveness of PLISSIT in resolving sexual dysfunction and glean insight into its utility as a social work intervention in a palliative care setting. Evidence from 15 interventional studies was synthesized. Cohen’s d-index served as the meta-analytic effect size statistic for each individual study. Significant ds were converted to Cohen’s U3 statistic to aid in practical interpretations. Between-study heterogeneity was evaluated with Cochran’s Q statistic to examine possible relationships between effect sizes and moderator variables. Statistically and practically significant evidence revealed that PLISSIT is effective in treating sexual dysfunction (d = 1.00, U3 = 84%, 95% CI = 1.06, 1.08): 84% of participants who received PLISSIT interventions scored lower on sexual dysfunction measures than did the typical participant in the comparison condition. Study design and frequency of intervention delivery moderated the overall effect. The findings and inferences may be best thought of as developed hypotheses for future research testing.
Cet article décrit certains aspects uniques dans les soins des patients de sexe masculin souffrant d'une maladie hématologique, tout au long du processus, depuis l'étape du diagnostic en passant par la phase de traitement jusqu'à la rémission et parfois, malheureusement, jusqu'à la phase de fin de vie. Ce périple peut s'étendre de quelques mois à plusieurs années. Cet article présente aussi le travail effectué auprès de patients de sexe masculin qui suivent une thérapie de groupe au sein du service. Il met en lumière les défis auxquels les hommes sont confrontés, en particulier dans la société israélienne, lorsqu'ils doivent faire face à une maladie potentiellement mortelle.
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The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.
Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.
To better understand the role of technology in later-life planning among older lesbian, gay, bisexual, and trans (LGBT) adults, we conducted focus groups to explore factors linked to diverse sexual orientations and gender identities. Twenty focus groups were facilitated across Canada with 93 participants aged 55 to 89. Constant comparative analysis yielded four categories: (a) fear, (b) individual benefits, (d) social elements, and (d) contextual elements. Fear related to technology and fear of end-of-life planning. Individual benefits referred to technology as a platform for developing LGBT identities and as a source of information for later-life planning. Social elements were establishment and maintenance of personal relationships and social support networks. Contextual elements referred to physical and situational barriers to technology use that limited access and usability. These findings can inform technological practice and services to enhance later-life planning.
CONTEXT: Palliative care (PC) clinical practice guidelines recommend providers assess the impact of illness on intimacy and sexuality. Previous studies around sexuality and intimacy in patients with advanced illness have largely focused on patients with a cancer diagnosis in the outpatient setting. Little is known about such impact of illness on inpatients receiving PC consultation.
OBJECTIVES: To assess the impact of patient illness on intimacy and sexuality through use of a screening tool and brief clinical questionnaire in hospitalized patients receiving PC consultation.
METHODS: Between January 2016 and May 2017, palliative social workers at three hospitals asked patients to report the level of impact that their illness(es) had on intimacy and to describe the impact. Data were analyzed using descriptive statistics and chi-square analysis. Qualitative data were analyzed using constant comparison methodology.
RESULTS: Among the 97 PC patients screened for intimacy concerns, the majority were female (57.7%), African American (71.1%) and on average 57.9 years of age. Most (91.7%) reported that they had not been previously asked about how their illness had impacted their intimacy. Nearly half (48.4%) reported that illness had moderately or significantly impacted their intimacy; these patients tended to be younger and in a current relationship (P < 0.05).
CONCLUSION: Patients with advanced illness commonly report negative issues regarding intimacy and sexual health. Incorporating routine screening into PC consultation may be warranted.
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.
Grief and bereavement are universal human experiences that do not discriminate based on sex, gender, or sexual orientation. Existing literature provides valuable insight into the bereavement experiences of persons who identify as heterosexuals, but much less can be found on persons who identify as lesbian, gay, bisexual, or transgender/queer* (LGBT*). Given that the historical experiences of loss and personal characteristics such as interpersonal, familial, and social patterns of coping with grief are likely to influence the bereavement process, this study focused on the impact of partner bereavement on the interpersonal relationships and subsequent partnerships of the LGBT* bereaved. To this end, the purpose of this study was to use a mixed-methods approach to better understand how LGBT* persons described their experiences with partner bereavement and to identify what effect these experiences had on interpersonal relationships and subsequent partnerships.
BACKGROUND: Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest.
AIM: To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe.
DESIGN: Qualitative study using thematic analysis of in-depth interviews and focus groups.
SETTING/PARTICIPANTS: A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge).
RESULTS: Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care.
CONCLUSION: Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.
End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. In oncology clinics, where goals of care discussions about end of life are integral and frequent, querying patients about their SGM status and sexual health is of particular importance. The American Society of Clinical Oncology recently released a position statement that called for greater focus on SGM populations with the goal of reducing and eventually eliminating disparities in cancer care within this group. An important first step in addressing such disparities is learning how best to train cancer health-care providers to ask patients about their SGM status and about sexual health in general. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. This article also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.
This paper asks how do the deaths and the postmortem detransitioning (the verbal, visual, and material rejection of a person’s gender identity) of transgender women impact trans activism? After analyzing the case studies of Jennifer Gable and Leelah Alcorn, I outline how the contentious memorialization of transgender women and the disenfranchized grief of survivors influence trans activism. I conclude that activism is characterized by respecting the wishes of the deceased, by preventing the violence which transgender women experience, by advocating for trans elder care, by educating about end-of-life issues, and by lobbying for laws that protect transgender men and women after death.
Lesbian, gay bisexual, transgender, and queer or questioning (LGBTQ) older adults have unique health care needs, especially in the palliative care and hospice setting. In this article, we present a male patient with metastatic ovarian cancer, admitted with worsening dyspnea, now at the end of life. Only his wife was aware of his identified gender, and nondisclosure was very important to him. As he continued to decline, the team navigated LGBTQ-sensitive care within the health care setting, insurance inequalities, and support and communication to his family. This case study summarizes clinical recommendations for the LGBTQ individual in the hospice and palliative care setting, suggesting how our patient's care may have been improved. With the changes in social acceptance and attitudes, the LGBTQ community has become more visible and their numbers appear to be growing. It is important, therefore, that hospice and palliative care providers be educated on their needs to provide competent and inclusive health care.
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most aging Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analyzed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasize the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.
La sexualité reste une dimension de vie encore peu abordée par les soignants. La cancérologie n’y échappe pas et c’est réellement une donnée qui n’est jamais abordée en soins palliatifs. Néanmoins, la sexualité fait partie de la vie, d’où notre intérêt pour la place de la sexualité. Pour cela nous avons réalisé des entretiens semi-directifs auprès de 27 patients pris en charge en soins palliatifs pour un cancer. Ces entretiens sont axés sur la place de la sexualité chez le patient. Nous nous sommes intéressés à leur sexualité avant la prise en charge pour leur cancer. Puis l’entretien s’est orienté sur la sexualité actuelle afin de voir si celle-ci a changé. L’intérêt de l’étude c’est également porté sur les besoins et les plaintes que les patients peuvent avoir concernant leur vie intime et sexuelle. Cette investigation a mis en avant un intérêt pour la sexualité de tous les patients de l’étude même si la maladie a engendré des changements dans leur intimité et leur sexualité. Il ressort également un manque de contact physique ressenti par les patients lors des périodes d’hospitalisations. De plus les patients ne sont pas satisfaits du respect de leur intimité lors des périodes d’hospitalisations.
The Department of Veterans Affairs (VA) is likely the largest provider of health care for LGBT persons in US. However, histories of homophobia, stigma, discrimination, and past military policies have all had a lasting impact on the health of LGBT veterans. Effects can be seen across healthcare needs, disparities, access, and utilization for or by LGBT veterans. A case from a VA hospice unit is used to illustrate some challenges and opportunities when providing end-of-life care for an older, lesbian veteran. This veteran had been cared for by her wife who was struggling to meet care needs at home. Over time, it became clear that the wife was emotionally and financially dependent on the veteran, and would be facing many psychosocial and financial challenges when the veteran died. However the wife was reticent to accept referrals for help or services due to past negative experiences with social service agencies related to her sexual orientation. The interdisciplinary team collaborated to care for the veteran's medical needs, and the wife's emotional and psychosocial needs, until after the veteran's death. This case highlights many of the unique needs and challenges that may arise in caring for LGBT veterans and their families at end-of-life.
Sexuality and intimacy, including contact, tenderness, and love, are important at every life stage. Intimate expression is especially vital at the end of life, when relationships with loved ones are time limited. Unfortunately, care providers often ignore the potential need for sexual expression, especially at the end of life. In this article, we consider current research on sexuality and end-of-life care and situate these two fields in an ecological framework. We explore how end-of-life sexuality and intimacy can be supported by practitioners in multiple nested contexts and provide suggestions for theoretically-driven interventions. We also provide reflexive considerations for practitioners.
End-of-life care has attracted increased attention in recent years due to increases in both the number and mean age of the world's population; however, the experiences of LGBT persons during end-of-life care remain understudied. Given the health disparities and barriers to care experienced throughout the life course of LGBT persons, the frequent involvement of legal spouses in end-of-life care, and the recency of marriage equality, it can be surmised that LGBT persons might experience significantly different barriers to their desired end-of-life care compared to their heterosexual and cisgender counterparts. This article aims to synthesize what is known about these barriers, particularly in the absence of legal marriage or protective legal documentation. Of two hundred and twelve articles reviewed, twenty-three were included for analysis. Common barriers that emerged were discriminatory laws (e.g., prohibitions against same-sex marriage) and policies, lack of decision-making capacity, lack of knowledge regarding patient wishes, lack of visitation rights, challenges from biological next of kin, and discrimination and psychological distress. Recommendations for future research are provided based on gaps that were identified. These include increased research on transgender persons and bisexual persons, and on providers of end-of-life care. In addition, the recommendations take into account that important legislative and policy changes occurred after the period in which the studies reviewed here were published. The impact of those changes cannot be reported in this study and should be determined by future studies. This synthesis provides the contextual understanding necessary for research and improvement in this vastly understudied area.