The experiences of gender diverse and trans children and youth considering and initiating medical interventions in Canadian gender-affirming speciality clinics

Abstract

Background: Canadian specialty clinics offering gender-affirming care to trans and gender diverse children and youth have observed a significant increase in referrals in recent years, but there is a lack of information about the experiences of young people receiving care. Furthermore, treatment protocols governing access to gender-affirming medical interventions remain a topic of debate.

Aims: This qualitative research aims to develop a deeper understanding of experiences of trans youth seeking and receiving gender-affirming care at Canadian specialty clinics, including their goals in accessing care, feelings about care and medical interventions they have undergone, and whether they have any regrets about these interventions.

Methods: The study uses an adapted Grounded Theory methodology from social determinants of health perspective. Thirty-five trans and gender diverse young people aged 9 to 17?years were recruited to participate in semi-structured interviews through the specialty clinics where they had received or were waiting for gender-affirming medical interventions such as puberty blockers, hormone therapy, and surgery.

Results: Young people felt positively overall about the care they had received and the medical interventions they had undergone, with many recounting an improvement in their well-being since starting care. Most commonly shared frustrations concerned delays in accessing interventions due to clinic waiting lists or treatment protocols. Some youth described unwanted medication side-effects and others said they had questioned their transition trajectory at certain moments in the past, but none regretted their choice to undergo the interventions.

Discussion: The results suggest that trans youth and gender diverse children are benefiting from medical gender-affirming care they receive at specialty clinics, providing valuable insight into their decision-making processes in seeking care and specific interventions. Providers might consider adjusting aspects of treatment protocols (such as age restrictions, puberty stage, or mental health assessments) or applying them on a more flexible, case-by-case basis to reduce barriers to access.     

Considerations on medical training for gender-affirming care: Motivations and perspectives

Abstract

Background: Many transgender individuals lack access to needed medical care, partially due to a lack of providers with experience in gender-affirming healthcare.

Aims: The purpose of this study was to identify professional motivators for medical providers seeking out training in gender-affirming care and to define which training experiences were most beneficial to their career development. By identifying experienced providers’ recommendations on which training modalities are most relevant to their practice, we aim to suggest future directions for medical education initiatives to effectively expand the transgender care workforce.

Methods: A voluntary cross-sectional electronic survey was distributed through professional listservs and publicly-available referral lists to interdisciplinary providers who self-identified as having experience in providing care to transgender individuals.

Results: One hundred and fifty-three (n?=?153) physicians, physician assistants, or advance-practice nurses responded to the survey. The majority (96.7%) were located in the United States, representing 37 states. The two most common motivators for seeking out training in gender-affirming care were filling a need in the community (73.0%) and/or having met a transgender-identified person in a clinical setting who requested care (63.8%). While many providers gained skills independently (57.3%), the two most commonly-available training opportunities were professional conferences (57.3%) and mentorship (41.3%). Respondents were most likely to recommend that others in their field be trained via structured clinical experience (e.g., a rotation or longitudinal exposure during training), rather than additional didactic training.

Discussion: This study identifies key high-yield training methodologies which could improve access to quality gender-affirming healthcare. Through integration of structured clinical experiences during training, direct clinical mentorship, and professional development at conferences on gender-affirming care, the workforce of welcoming and prepared healthcare providers for transgender patients will increase. This will lead to a tremendous improvement on access to gender-affirming care in our communities.     

Effect of developmental care for very premature infants on neurodevelopmental outcome at 2 years of age

BackgroundTo determine the effect of developmental care on neurodevelopmental outcome in formerly preterm infants at a corrected age of 2 years.MethodsA prospective phase-lag study was performed at an Austrian neonatal intensive care unit (NICU). From January 2003 to December 2005 (study period of conventional care) and January 2007 to December 2009 (study period of developmental care), we enrolled all infants born in Tyrol at less than 32 weeks of gestation. During this period a total of 261 of 359 preterm infants (participation rate 72.7%) completed the follow-up visit at 2 years of age; there were 124 children in the conventional and 137 in the developmental care group. The association between developmental care and delayed motor or mental development (Bayley Scales of Infant Development II; psychomotor or mental developmental index <85) was analyzed by means of logistic regression analysis at a corrected age of 24 months.ResultsChildren in the developmental care group showed less psychomotor delay than did those in the control group (developmental care group: 16.1%, conventional care group 27.4%; adjusted odds ratio 0.37 [95% confidence interval: 0.19–0.74], P = 0.005). Not smoking in pregnancy and higher gestational age were also significant predictors for a better psychomotor outcome at 2 years of age. Regarding cognitive outcome, no significant difference was observed between these two groups.ConclusionOur data implicate that developmental care may result in an improved 2-year psychomotor outcome in formerly preterm infants.     

Provider quality and barriers to care for transgender people: An analysis of data from the Wisconsin transgender community health assessment

Background: Transgender people in the United States often lack access to high-quality health care.

Methods: A group of researchers and transgender people came together in a community-based participatory research process to survey transgender Wisconsinites about their health care experiences. A multiple regression analysis of survey data was used to evaluate the association between barriers to health care, gender identity, and quality of medical and mental health care provider.

Results: Seventy-seven respondents were included in this analysis. Transmasculine respondents were more likely than transfeminine respondents to report barriers to high-quality health care, but having a high-quality medical or mental health care provider was associated with reporting fewer barriers to care across the entire sample.

Discussion: This community-based study suggests that health care providers play a key role in facilitating access to care for transgender Wisconsinites in the USA.     

The Tarasoff Warning and the Duty to Protect

Summary

Since the case of Tarasoff v. Regents of the University of California, mental health professionals have had an explicit legal duty to warn potential adult victims of violence. Subsequent case law expanded this standard to a broader duty-to-protect. Primary health care providers are increasingly treating psychiatric patients for whom the duty to protect is applicable. However, these providers are often unaware of the legal, ethical, and clinical issues involved. Assessment of violence risk should include demographic, psychiatric, and social dimensions. Interventions include notifying law enforcement authorities, potential victims, and possible use of psychiatric hospitalization to prevent aggressive behavior. The duty-to-protect as a standard-of-care has been applied to several other clinical situations, including impaired driving capacity, high-risk HIV behavior, and child sexual abuse. The article includes a step-by-step clinical protocol for evaluation and intervention in dangerous situations.     

Non-binary youth: Access to gender-affirming primary health care

ABSTRACT

Background: Transgender (trans) youth who identify outside the gender binary are a growing subpopulation. In this article, we document differences in access to gender-affirming health care between binary and non-binary identified trans youth and explore ways of meeting the health needs of non-binary youth within primary care settings.

Methods: The Canadian Trans Youth Health Survey is a national online survey of trans youth, 14–25 years, conducted in 2013–2014. Among the 839 participants who responded to gender identity items in the survey, 41% identified as non-binary. We compared demographic, health outcome, and health care access responses between non-binary and binary (trans girls/women and trans boys/men) youth.

Results: Non-binary and binary youth were similar in most demographics, including age, geographic distribution, and ethnocultural backgrounds, however a larger proportion (82%) of non-binary youth were assigned female at birth. Older non-binary youth (aged 19–25) were significantly more likely to forego needed healthcare than older binary youth; no significant differences were found between younger (14–18) non-binary and binary youth in foregoing healthcare. Overall, non-binary youth (13%) were significantly less likely than binary youth (52%) to access hormone therapy, but they were more likely than binary youth to report experiencing barriers to accessing hormone therapy when needed.

Conclusions: Non-binary trans youth in Canada report challenges in accessing needed gender-affirming healthcare. Primary care providers are well-situated to integrate a broad range of gender-affirming care services into practice in order to address the unique needs of non-binary youth. Future research is warranted to explore experiences of non-binary youth related to barriers to care and to explore how services can be designed and delivered to better meet the needs of non-binary youth seeking gender-affirming primary care.     

Listening to People with Dementia: A Pastoral Care Perspective

SUMMARY

Pastoral and Spiritual Care approaches to the reduction of depression in residential aged care facilities are considered. They are examined through specific one-to-one pastoral care, through a pastoral care person in the team approach to care and through a one-to-many relationship for group spiritual and religious activities. The suggestions in this article are offered as extensions to a manual, Challenge Depression, on managing depression in residential aged care as a way of including pastoral and spiritual care as part of an integrated approach and as part of a stand alone approach of pastoral care.     

Patient-provider care goal concordance: implications for palliative care decisions

Objective: Goal-concordant care is an important feature of high quality medical treatment. Patients’ care goals may focus on curative and/or palliative outcomes. Patients rarely communicate their care goals, and providers’ predictions of patient goals are often inaccurate, corresponding most closely to their own treatment goals. This projection of own goals onto patients introduces the potential for bias, leading to goal-discordant care.

Design and Main Outcomes: We examined goal discordance using data from a U.S. sample of healthcare providers (N?=?492) recruited online in 2017 using GfK Knowledge Panel. Providers reported their perceptions of their patients’ care goals (curative relative to palliative), their own care goals if they were to become ill, and their willingness to deliver palliative care.

Results: For 28% of providers, their own care goals differed from their patients’. Providers were more likely to prioritise palliative care (relative to curative) in their own goals than in their predictions about patients’ goals. Providers were more willing to deliver palliative care when their own goals prioritised more palliative relative to curative care, but their perceptions of patient goals were unassociated with willingness to provide it.

Conclusions: Efforts to improve goal communication and reduce projection biases among providers may facilitate goal-concordant care.     

The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

Coping et odontologie pédiatrique : construction d’un questionnaire français

ObjectiveThe purpose of this study was to build a tool of evaluation of the strategies the children use during a dental care.MethodThirty children (from six to 15 years old), 15 parents and 10 dentists participated in semidirective conversations and in observations.ResultsAn analysis of thematic contents of the conversations and the observations allowed to kick away five categories of strategies and to classify them according to the moment of the meeting.Conclusion and perspectivesQuestionnaires (behaviour, relation, cognition, emotion and somatic) were built. Once validated, these tools should allow to assess the strategies used by the child during a dental care.     

Spiritual Need Five: Providing Quality Pastoral Care as a Congregation

SUMMARY

Critical to the needs of older adults is the care and nurturing of the feelings and emotions that often offer context for the human spirit. Grounded in the history of pastoral care, this chapter explores an approach to pastoral care that is reflective of the author's study and experience in the parish.     

The role of goal adjustment in symptoms of depression,anxiety and fatigue in cancer patients receiving psychosocial care: A longitudinal study

Objective: This study examined whether cancer patients reported increases in their goal adjustment capacities while receiving psychosocial care and whether these increases were related to changes in symptoms of depression, anxiety and fatigue. Goal adjustment was conceptualised as two independent capacities: goal disengagement (i.e. disengage from unattainable goals) and goal reengagement (i.e. reengage into new goals).

Design: This naturalistic, longitudinal study focused on 241 cancer patients receiving psychosocial care at one of the seven psycho-oncology institutions in the Netherlands. Data was collected before the start of psychosocial care (T1) and nine months thereafter (T2). Hierarchical regression analysis was used to examine the research questions.

Main Outcome Measures: Goal adjustment, symptoms of depression, anxiety and fatigue.

Results: At group level, patients reported small increases in goal disengagement (d = .22) but no significant change in goal reengagement (d = .09). At an individual level, 34% of cancer patients reported an increase in goal disengagement and 30% reported an increase in goal reengagement. Increases in goal reengagement were significantly associated with decreases in both depressive and anxiety symptoms, but not to changes in fatigue.

Conclusion: Findings indicate that particularly improvements in goal reengagement are beneficial for cancer patients’ psychological functioning.     

The Care-Based Ethic of Nazi Medicine and the Moral Importance of What We Care About

This article reports on an inquiry into ideas used to justify the shift of medical ethos in Germany prior to and during the Nazi era, specifically the principles of care advocated by Erwin Liek and Karl Kötschau, the era's most influential medical theorists, who argued that commitments to care of individual sick persons (Fürsorge) had to give way to a preventive care that respects emerging needs of the entire society (Vorsorge). The article examines both the socio-cultural factors that shaped, and the far-reaching effects of, this manipulation of care. It argues that we should be attentive to the meaning and requirements of the care revealed in this debate, the ancient Greek idea of care as a concerned moral option.     

Women,Mental Health,and Managed Care

Abstract

Managed care has changed the way that mental health care is provided. These insurers manage such factors as length and type of therapy made available, access to therapy, and level of payment for therapy. Women, as the majority of those insured by managed care and as consumers of mental healthcare, are differentially affected by these changes.     

Common barriers to healthcare for transgender people in the U.S. Southeast

Abstract

Background: Transgender and non-binary people are more likely to face barriers to healthcare than their cisgender counterparts. The majority of work in this area centers on the experiences of transgender people in northern cities and urban enclaves, yet over 500,000 transgender people live in the U.S. Southeast.

Aims: The purpose of this study is to explore barriers to healthcare among transgender people in the U.S. Southeast.

Methods: The research team conducted four 120-minute focus groups (eligibility criteria: 18?years or older, self-identify as transgender, live in the U.S. Southeast). Participants completed a demographic questionnaire prior to the start of the focus group. Each focus group explored access to and experiences of receiving basic healthcare as a transgender person in the U.S. Southeast. Established qualitative methods were used to conduct the focus groups and data analysis.

Results: Participants (n?=?48) ranged in age from 19 to 65, with the majority identifying as trans women (43.8%) and non-binary (33.3%). The sample was racially diverse: White (50%), Black (37.5%), and Latinx or Multiracial (12.5%). Multiple barriers to care were identified: (1) fear and mistrust of providers; (2) inconsistency in access to healthcare; (3) disrespect from providers; and, (4) mistreatment due to intersecting experiences of gender, race, class, and location.

Discussion: Transgender Southerners face barriers to care at the structural, cultural, and interpersonal levels. The study results have implications for researchers, as well as providers, practices, and health care systems throughout the region.     

‘If they didn’t support me,I most likely wouldn’t be here’: Transgender young people and their parents negotiating medical treatment in Australia

Abstract

Background: It is increasingly recognized that transgender young people require affirming medical care, however the provision of such care may be mitigated by the availability of services and the views of parents.

Aims: This study aimed to explore the views of Australian transgender young people (aged 11–17) and their parents with regards to medical treatment.

Methods: Ten qualitative interviews were conducted with parent-child dyads in two Australian states. Thematic analysis was undertaken on responses to interview questions related to family relationships, views about medical treatment (specifically hormone blockers and hormones), and the relationship between medical treatment and sense of self.

Results: Themes developed focused on the importance of strong supportive parent-child relationships, the meaning of and access to hormone blockers, and the meaning of and access to hormones.

Discussion: The paper concludes by discussing the implications of the findings for clinical services, particularly in relation to supporting parents to be affirming of a transgender child, the need to prepare transgender young people and their parents for the passage of time in regards to medical treatment, and the need to focus on expectations in regards to sense of self in relation to medical treatment.