Using circular questions to explore individual family member experiences of youth gender dysphoria in Australia

Abstract

Background: The number of young people reporting gender dysphoria is increasing worldwide, with gender dysphoria known to affect everyone in the family in unique ways. Previous research has highlighted the importance of family support and understanding; however, much less is known about individual and collective family member experiences, particularly for siblings under the age of 18?years.

Aims: This study sought to identify, describe and interpret individual family member experiences of youth gender dysphoria using semi-structured interviews, incorporating circular questioning, within a whole of family, clinical and wider social context.

Methods: Thirty-five individual family members living in Australia (nine young people aged 12-17?years experiencing gender dysphoria, 10 mothers, eight fathers, and eight siblings aged 11-17?years) were interviewed, exploring positive and negative experiences of youth gender dysphoria, within and outside of the family. Family relationships, support and healthcare experiences were also explored.

Results: All participants reported a mixture of positive and negative experiences of youth gender dysphoria. Levels of acceptance tended to change with the duration of transition, with most family members adapting with time. Siblings reported mixed experiences within the same family, with some struggling to adapt. Most family members felt that including the whole family in the healthcare of the young person was important, although dependent on individual circumstances and family context. Specialist gender care experiences were unanimously positive, although services were considered difficult to access.

Discussion: Family members reported shared and individual positive and negative experiences of youth gender dysphoria across social contexts. Accepting and facilitating gender transition for young people appeared to improve individual and family functioning. Most participants valued a whole of family approach within specialist healthcare. The use of circular questioning in the study helped dispel assumptions and facilitated curiosity for others’ experiences in the family.     

Stigma by Association Among Family Members of People with a Mental Illness: A Qualitative Analysis

People with mental illness are not the sole recipients of stigmatisation; their immediate family members may be subjected to stigma by association. Through semi‐structured interviews, we investigated experiences of stigma by association among 23 immediate family members of people with mental illness. Participants reported experiencing stigma by association from community members, mental health professionals, and civil servants. Familial relationship, co‐residence, and the gender of participants appeared to play a role in their stigma experiences; parents and spouses reported different manifestations of stigma by association than siblings and children, participants who lived together with their family member with mental illness reported increased experiences of stigma by association, and in contrast to male participants, female participants reported others thinking they are overprotective and as such perpetuated, maintained, or sustained their family members' mental illness. The relevance of these factors points to the need for tailored education and emotional support provision to family members of people with mental illness. Moreover, in‐service training for mental health professionals should include the development of relevant social skills that enable the recognition of familial relationships and roles, and family members' fears, concerns, and problems. Copyright © 2014 John Wiley & Sons, Ltd.     

Student Healthcare Clinicians' Illness Narratives: Professional Identity Development and Relational Practice

ABSTRACT

In this qualitative, grounded theory study we examine how the intersection of self-reflection, illness narratives and perceived messages of professional identity inform care provided by medical, nursing, and medical family therapy students to patients and families. We discovered four common challenges students faced navigating personal experiences of illness and connecting to patients: 1) discrepancies between ideal and lived experiences, 2) challenges of healthcare work and culture, 3) navigating power and hierarchy, and 4) developing a shell of privacy. Discussion and implications include interdisciplinary training and collaboration and the unique role of medical family therapists in healthcare.     

Therapists' Perspectives on Working with Interracial Couples

SUMMARY

This paper is based on interviews with seven marriage and family therapists (AAMFT Clinical Members) on their experiences of providing therapy to interracial couples in the course of their private practices. The interviews were conducted by the author as part of a masters thesis project. Interracial couples may frequently present for therapy with a variety of generic couples' issues and concerns. However, therapists often find that underlying these more generic concerns are issues related to the ethnic, racial, and cultural differences that the partners bring to the relationship. This paper focuses on the historical context of intermarriage, specific concerns and issues that interracial couples experience in their relationships, and on the experiences of therapists providing therapeutic services to this diverse and challenging client population.     

Ethical Challenges for Jewish Long Term Care Providers

ABSTRACT

This article discusses the particular ethical challenges and opportunities facing Jewish long term care providers. The discussion begins with background on Jewish healthcare ethics generally and then notes several problems in applying traditional principles in concrete situations today. Specific ethical dilemmas characterizing long term care are described, and their implications for practice within Jewish facilities are explicated. Finally, suggestions are offered regarding special contributions that can be made to both the Jewish community and the larger society by bringing the perspective of Jewish healthcare ethics to the arena of long term care provision and policy-making for aging citizens.     

All careproviders need more opportunities to share their ethical concerns with others

Attention to the ethical concerns of healthcare aides can provide important information about patients' needs to careproviders, improve the ethical environment of an institution, and benefit aides who suffer from bearing ethical concerns alone. All persons benefit from sharing their ethical concerns with others. Among other benefits, ethics consultation offers careproviders, caregivers, healthcare aides, patients, and patients' loved ones an opportunity to have their concerns heard. John Fletcher tried to follow every ethics consultation with a debriefing for all participants, including patients and family members, to increase the possibility for continued healing after the conclusion of the consultation, and there are good reasons to follow this practice.     

Young Women’s Accounts of Caregiving,Family Relationships,and Personal Growth When Mother Has Mental Illness

Family members often serve as the primary source of care and support for loved ones living with mental illness. Although existing research has examined the role of parents and well siblings in providing care to adult children with mental illness, relatively little is known about the caregiving experiences of adult children with a parent with a psychiatric disability. Guided by a life course perspective, the present qualitative study examined first-person accounts of 10 young women attending college (ages 18–22) who were raised by a mother living with mental illness (depression, bipolar, or schizophrenia). Participants completed individual semi-structured interviews in which they described their experiences of caregiving, role reversal, and felt obligation towards mother, their ties to father and siblings, and their views of the impact of maternal mental illness on their lives. Overall, young adults’ accounts of their relationship with mother could be characterized as either predominately positive or predominately negative. In general, participants’ accounts of their caregiving experiences, views of felt obligation, and supportiveness of family ties differed depending on their reports of the overall quality of the mother–daughter relationship. Adult daughters described positive impacts of maternal mental illness on their own lives, regardless of their accounts of relationship quality with their mothers.     

"Broken covenant": healthcare aides' "experience of the ethical" in caring for dying seniors in a personal care home

Canada's population is aging, and seniors constitute the fastest growing demographic in the nation. The chronic health conditions, limited social support, functional decline, and cognitive impairment experienced by seniors may necessitate admission to a personal care home (PCH) setting up until the time of their death. The ethical problems that arise in the care of dying patients are numerous and complicated. The care of dying seniors in PCHs, however, is largely provided by frontline workers such as healthcare aides (HCAs), who usually have little training in palliative care or ethics. Research examining the identification and resolution of ethical problems in care of the dying has been conducted from the perspectives of nurses and physicians in various clinical settings, but the voice of HCAs in PCHs is virtually absent from clinical ethics. Given that the inability to satisfactorily resolve ethical issues in clinical practice is associated with feelings of guilt, powerlessness, avoiding contact with patients, failing to provide good physical care, and increased staff turnover, an empirical examination of HCAs' experiences of ethically challenging situations is warranted. We conducted a phenomenological study to access the lived experience of HCAs (N = 12) working in proprietary and nonproprietary care homes as they encountered situations they deemed ethically challenging in providing end-of-life care to dying seniors. The findings reported here explicate: (1) the types of situations that are ethically problematic for HCAs; (2) the meanings they assign to these situations, and (3) the impact such situations have on the provision of end-of-life care.     

Application of the APA ethics code for psychologists working in integrated care settings: Potential conflicts and resolutions

ABSTRACT

Increasingly, there is evidence of the potential benefits of an integrated care model. In fact, the American Psychological Association (APA) supports the role of psychologists in integrated healthcare given the positive outcomes for patients in primary care settings such as increased access to mental health services, reduced mental illness stigma, and improved health associated with recognizing the impact of psychosocial factors on physical wellbeing. Less attention has been paid, however, to ethical dilemmas that may arise for psychologists working in integrated healthcare. This paper explores considerations for resolving potential ethical conflicts that may arise for psychologists working in integrated care settings.     

Les dispositifs groupaux à l’hôpital et en EHPAD durant la crise de la Covid-19. Quelles demandes,quelles offres,quels apports ?

IntroductionThe COVID-19 crisis has exacerbated the demand for group arrangements dedicated to healthcare professionals and more widely hospital and medicosocial staff.ObjectiveThis article attempts to shed light on the issues at stake in the opening of group settings, between supply and demand, as well as their main organizational and psychological contributions and limitations, through the synthesis of multiple feedbacks from group arrangements carried out by clinical psychologists and researchers during the COVID-19 pandemic.MethodSix female researcher-clinicians met to discuss their experiences in setting up group care facilities. The analysis of the feedback used the concepts of work psychodynamics and group psychoanalysis, making it possible to bring out the organizational and psychological characteristics of group arrangements dedicated to professionals in the healthcare sector.ResultsOur results show that the group arrangement, by allowing the sharing of experiences, helps the mutual recognition between professionals, and thus new identifications in order to avoid the fragmentation of work collectives. The most central point seems to be the capacity of group arrangements to deal with the aggressiveness and anger felt when facing the powerlessness to act in crisis situations. The limits of these groups concern their difficulty in allowing individual rather than collective words to be expressed, and the risk of being the site of a repetition of the trauma for the professionals who sometimes attack or flee from these mechanisms, for fear of what they might bring back to the surface.ConclusionSeveral points of vigilance and recommendations from the experiences reported in this article are explained, in order to enlighten and guide future group facilitators when offering group arrangements built with and for professionals in the healthcare field.     

The experiences of transgender and non-binary children and young people and their parents in healthcare settings in England,UK: Interviews with members of a family support group

Abstract

Background: Transgender and non-binary children and young people and their parents in England, UK are poorly served across a range of healthcare settings. Whilst UK equalities legislation and international guidance on transgender healthcare pathways protects this group from discrimination and mandates an affirmative approach, services in England are not keeping pace.

Aims: This study aims to draw on the experiences of transgender and non-binary children, young people and their parents in a support group in England in order to investigate their experiences of healthcare provision, and to develop some ideas for improvement.

Method: Data was collected with participants in a family support group which offers a parent helpline service, social groups for children and parents, and training for schools and other organizations. 65 parents and children from 27 families from the family support group attended participatory workshops where they were given a range of briefs: “health,” “family,” “friends,” and “education.” Their participation involved being asked to define their own interview questions and collect data by interviewing each other. Their interview notes constituted the raw data. Data was coded inductively by the author with respondent checking as a second stage.

Results: Results constitute the views of a small group of people, so cannot be generalized. However, they do illustrate some of the issues which may arise. Participants’ experiences elicited five key themes: professionals’ perceived lack of clinical and therapeutic knowledge; mental distress caused by excessive waiting lists; professionals’ stereotyped gender assumptions; direct discrimination within healthcare settings; and a lack of attention to parent and child voice, especially in terms of school-based experiences and where a patient had a diagnosis of autism.     

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.     

A Comparative Analysis of Ethical and Professional Challenges Experienced by Australian and U.S. Genetic Counselors

Ethical issues are an inevitable part of genetic counseling practice. Prior research identified 16 domains of ethical and professional challenges encountered by practitioners in the United States. In order to further validate these domains, the present study surveyed Australian genetic counselors. Sixty-three respondents rated the frequency with which they encountered each domain, and 39 individuals also provided personal anecdotes detailing their most challenging ethical and professional dilemmas. Every domain reportedly was experienced by the Australian sample. However, there were some differences between Australian respondents and U.S. genetic counselors in frequencies of domain occurrence, and in strategies recommended for resolving them. Several anecdotes illustrate challenging situations due to Australia’s geography, universal healthcare system, and the genetic counseling profession’s evolution in that country. The results generally validate domains identified for U.S. genetic counselors. They further suggest that certain ethical issues may manifest in ways unique to a given country, and therefore they must be addressed in a culturally-appropriate manner.     

Searching for a normal life: personal accounts of adults with schizophrenia, their parents and well-siblings

Using a life course perspective, the research examines personal accounts of adults with schizophrenia, and their parents and well-siblings from six families. Accounts of multiple members of the same family, including the family member with schizophrenia, are used to describe how families understand and accommodate life changes that result from the illness. Families describe the loss of a normal life as one of the most devastating aspects of schizophrenia. We present the personal and social losses described by adults with schizophrenia and their well family members, and document families' search for ways that their ill family member can achieve or maintain valued social roles. The concerns of well family members for the future of the ill family member and ways families contemplate transfer of care issues are described. Implications of the study for community research and action are discussed.     

Ethnicity and the stigma of disabilities

Abstract

Recent studies reveal significant differences in the attitudes held by people of various ethnic groups toward people with disabilities. We surveyed university students and community members on a scale of desired social distance from people with disabilities. Study 1 revealed that Asian-American participants were more likely to stigmatize and less likely to differentiate between individuals with physical and mental illness than were their African-American, Latin-American or European-American counterparts. Study 2 compared U.S. born with Asian born Asian-Americans and found that nativity was a useful predictor of attitudes toward people with disabilities. Asian born participants were more likely to stigmatize disabilities overall (except mental illness and old age) than U.S. born participants presumably because of the level of assimilation. These cultural differences may have health care and psychosocial implications for those who are disabled and for health care providers.     

Race-Related Differences in the Experiences of Family Members of Persons with Mental Illness Participating in the NAMI Family to Family Education Program

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families’ caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.     

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.     

Mothers continuing bonds and ambivalence to personal mortality after the death of their child--an interpretative phenomenological analysis

The main objective of this study was to identify how bereaved mothers describe their coping strategies in their own words. The literature on parental bereavement is sparse, and the present study aims to add to existing knowledge by eliciting the mothers' experiences covering a wide range of child ages including infants, younger children and adults. Semi-structured interviews were held with 13 bereaved mothers in the UK. Causes of death include accident, illness and suicide. The methodological approach was interpretative phenomenological analysis (IPA). This article reports two inter-related recurrent themes: (1) Continuing the bond with the deceased child and (2) Ambivalence to personal mortality. Participants reported that the relationship with their child was continued in a variety of ways, from tending to the grave and the child's remains, through linking objects or by establishing a symbolic representation of the child within their daily lives. All mothers talked openly about their own mortality, either demonstrating ambivalence about their own death, or expressing clear suicidal ideation. Death was seen as a release from living with the pain of loss. The presence of surviving siblings appeared to moderate suicidal ideation, but mothers expressed concerns about their ability to care adequately for other family members during times of intense grief.