Brain-computer interfaces (BCIs) are access technologies that can improve the occupational participation of children with disabilities. The research on the experiences of pediatric BCI users and their families is currently limited. To explore experiences of pediatric BCI use and future expectations through caregiver perspectives. A qualitative, descriptive study using purposeful sampling and inductive thematic analysis. Investigator triangulation and reflexivity enhanced credibility. Zoom for Healthcare virtual platform. Fifteen parents (12 mothers and 3 fathers) of children and youth with disabilities (ages 6-18 yr; 9 females and 6 males) who participated in a recreational BCI program at a pediatric rehabilitation hospital, with the option of additional at-home BCI use, were selected via purposive sampling. In-depth, semistructured interviews were used to collect data. Three major themes emerged from the central topic of experiencing play using BCIs: (1) transformative experiences, (2) personalization for success, and (3) future hopes. By documenting family experiences with and expectations of BCIs, these findings can guide the development of BCI use in clinical and recreational programs. Occupational therapy practitioners can use the transformative potential of BCI technology to create new pathways for participation and empowerment in the lives of children and youth with disabilities. Plain-Language Summary: Children with complex disabilities often cannot take part in play and recreation. Many activities are not accessible to them. Brain-computer interface (BCI) technologies can help kids play without needing to move or speak. We asked families using BCIs about their experiences. They shared that use of a BCI empowered their child and allowed others to consider them in a new light. Some families enjoyed the programming, and others found the activities too simple over time. Many families shared that BCI headsets were uncomfortable. A better design for kids with disabilities is important. Families hope that BCIs will help kids control their environment in the future. Occupational therapists should understand how kids and families feel about using BCIs. This study helps occupational therapists learn about the benefits of BCIs in their practice and the challenges of using them.

This systematic review provides the first synthesis of mediating and moderating factors in the bidirectional relationship between anxiety and alcohol use and related problems. Six electronic databases were searched for longitudinal studies that assessed a mediator and/or moderator in the anxiety → alcohol or alcohol → anxiety pathway. Risk of bias was assessed with two quality assessment tools developed to assess biases pertaining to mediation and moderation studies, respectively. Of the 14,776 records identified, 55 were eligible, from which effects from 315 unique models were extracted. Effects included 30 mediation analyses, 258 moderation analyses, and 27 other complex analyses (e.g. multiple mediation or three-way moderation). Identified mediating and moderating factors were categorised in line with the biopsychosocial model, with subsequent subtheme classification (e.g. sex, drinking motives). Further to the narrative synthesis, seventeen moderation subthemes provided sufficient data for meta-analysis. Results of the meta-analysis of moderators suggest age (Fisher's z: 0.065 95% CI: 0.017, 0.113), externalising factors (Fisher's z: -0.186, 95% CI: -0.222, -0.150), perceptions of peer alcohol use (Fisher's z: -0.076, 95% CI: -0.119, -0.033), positive family experiences (Fisher's z: -0.081, 95% CI: -0.098, -0.064), and experimental manipulation of anxiety (Fisher's z: 0.242. 95% CI: 0.103, 0.382) significantly moderated the relationship between anxiety and alcohol. Narrative synthesis of other moderating subthemes and all mediation subthemes yielded inconsistent evidence which did not demonstrate conclusive moderated or mediated effects. Across studies, methodological quality was suboptimal, with future directions for research discussed.

Abstract Background Epistaxis, known as a "nosebleed," refers to a sudden bleeding episode that originates from the nose mainly originates from Kiesselbach's plexus. Epistaxis is prevalent among school-age children. Nasal bleeding can be caused by various factors, which can be classified into systemic or local factors. Treatment requires first aid management and seeking medical advice. Thus, the purpose of this study is to assess the parents' knowledge and practices toward childhood epistaxis in Al-Baha City, Saudi Arabia. Methods A cross-sectional study was conducted involving 434 parents residing in Al-Baha City, Saudi Arabia. Data were collected through a structured questionnaire that evaluated participants' demographic information, personal or familial experience with epistaxis, and their knowledge of its definition, causes, complications, and emergency management. Descriptive statistics summarized the demographic data and knowledge levels, while associations between sociodemographic factors and knowledge/practice were analyzed using chi-square tests. Results Four hundred and thirty-four participants were enrolled, predominantly male (60.1%) and primarily aged 45–60 years (37.6%). Overall, 63.1% of the participants had good knowledge. About 54.4% reported having a child who experienced epistaxis, with 64.4% of them having recurrent episodes. 96.1% correctly identified epistaxis as nasal bleeding, but only 45.4% recognized it as an emergency. Common causes of epistaxis reported by the participants were nasal injury (49.7%), high blood pressure (48.4%), and nose picking (43.5%). Complications reported were severe drops in blood pressure (44%) and anemia (43.7%). Regarding practices, only 53.5% had good practices toward epistaxis. Only 45.4% knew to apply pressure on both nostrils, while 42.2% mistakenly believed pressing the upper part of the nose is effective. Regarding body position, only 33.4% chose the correct position of sitting with the head tilted forward. Conclusion Although most of the participants (63.1%) had a good understanding of the condition, practical application was inadequate, particularly in recognizing it as an emergency and implementing effective first-aid measures. Notably, fathers demonstrated greater awareness of epistaxis and its management than mothers. Higher educational attainment, medium to high socioeconomic status, and personal experience with a child suffering from epistaxis were associated with improved knowledge levels.

Strengthening Aboriginal family involvement in the paediatric ESCALATION system: A multi-methods study of Aboriginal families' experiences in raising concerns.

This qualitative study explores how immigrant families experience and negotiate age–grade mismatch during school enrolment and transition, and how family cultural capital shapes their ability to engage with school placement decisions. Age grade mismatch (i.e., being below age grade level) can be considered as either a technical or guardian move, but has significant social, emotional, and educational implications. The research is based on semi-structured interviews with 12 immigrant parents and young people regarding the announcement, justification, and reaction to the placement decision-making in the daily interactions of the family and school, the results of which indicate that age–grade incompatibility is widely perceived as an institutional evaluation instead of an objective adaptation, which shapes the sense of belonging, confidence, and peer relationships in children. The ability of families to challenge or make new deals on the placement decisions differed significantly and was largely connected to access to information, language assistance, social networking, and knowledge of school systems. Some families could mobilise these resources to bring about change, but in other cases, the process appeared to be fixed and intimidating. The research points to the ability of language-based tests to blur the previous education and the support systems to propagate inequalities in situations where there are no established ways of review.

This study aimed to assess how paediatric cystic fibrosis (CF) patients attending an Australian tertiary paediatric hospital accepted and perceived the 'Captains on Call' (CoC) program, a positive distraction initiative by Starlight Children's Foundation Australia (Starlight). We invited caregivers of CF clinic attendees and CF patients aged eight and over to participate in an online survey, and healthcare professionals and Starlight team members involved in CoC to participate in an interview. Eighteen caregivers and ten children completed the survey, while three health professionals and four Starlight team members were interviewed. Findings indicate that CoC positively disrupts healthcare experiences for families, reduces anxiety and fear before and during hospital visits, averts negative rumination for caregivers and improves healthcare professionals' mood during visits. While participants shared their appreciation of CoC interactions being tailored to each child's interests, suggestions were made for better addressing adolescents' unique needs. Overall, CoC emerged as a highly valued program in the CF clinic at Women's and Children's Hospital, Adelaide, demonstrating potential to foster more positive healthcare experiences through play and positive distraction, mitigating the perceived negative impact of hospital visits for children with CF and their caregivers.

Paediatric inflammatory bowel disease (IBD) requires complex, multidisciplinary care. However, variation in service delivery and limited insight into patient and family experience may impact care quality. This study evaluated patient-reported experience in a specialist paediatric IBD multidisciplinary team (MDT) clinic, benchmarked findings against an internal target and informed local quality improvement.All patients and accompanying family members attending the MDT clinic at Sheffield Children's Hospital between November 2023 and May 2024 (n=242 attendances) were invited to complete a 15-item feedback questionnaire covering access, consultation quality, communication, self-management confidence, psychosocial support and environmental factors. Responses were coded numerically (-2 to +2), summed and normalised to a percentage scale. Quality improvement methodology was applied to analyse results against a Trust-defined benchmark of 82.5% and identify SMART (Specific, Measurable, Achievable, Relevant, Time-bound) improvement targets.49 questionnaires were returned (20.2% response rate). High satisfaction was reported for consultation time and clinician responsiveness (100%), staff professionalism (94%) and clarity of management instructions (90%). Domains falling below benchmark included appointment scheduling (77.6%), waiting times (81.6%), communication with primary care (78.6%), self-management confidence (80.6%) and transition planning (66%). Based on the baseline results, we subsequently implemented SMART-based interventions, including nurse-led triage, pharmacist-led medication reviews and structured transition pathways. Early feedback suggested improved coordination and reduced waiting times.Families value MDT outpatient care in paediatric IBD, particularly in-clinic interactions and clarity of care. Persistent gaps in access, primary care coordination and transition planning highlight opportunities for targeted improvement. Integrating patient-reported experience with structured quality-improvement frameworks provides a pragmatic approach to enhancing service delivery and benchmarking outcomes.

Second-trimester fetal anomaly scan is an important modality of care in antenatal settings for detecting congenital abnormalities and improving maternal and neonatal outcomes. Despite the importance of second-trimester ultrasound anomaly scan, its utilization remains suboptimal in Jordan, due to the existing knowledge gaps, prevailing attitudes, and various barriers which affect utilization and access to this type of diagnostic procedure. To assess the knowledge, attitudes, and barriers related to the utilization of second-trimester anomaly scans among pregnant Jordanian women and to identify the predictors of women's knowledge regarding anomaly scan capabilities. A total of 468 pregnant women attending antenatal clinics in Jordan participated in this cross-sectional study. A valid and self-administered questionnaire was used. Descriptive statistics summarized demographic and clinical characteristics and multiple linear regressions identified the predictors of knowledge regarding anomaly scan capabilities. The findings revealed that 87.0% had good knowledge about anomaly scan capabilities and 13.0% had poor knowledge. The statistically significant predictors of a high level of knowledge were previous anomaly scan history (B = 0.591, p < 0.001), family history of congenital anomalies (B = 0.793, p < 0.001), consanguinity (B = 0.440, p = 0.002), and number of miscarriages (B = 0.221, p = 0.009). The main barriers included: fear of detecting fetal malformations, 17.5%; religious objections to pregnancy termination, 16.6%; and financial barriers, 12.4%. Although most participants (87.8%) expressed an attitude that considered ultrasound to be safe, there were still misconceptions about its potential risks. The study highlights the critical role of personal and familial experiences in shaping women's knowledge about anomaly scans. Although attitudes toward the safety and usefulness of ultrasound were generally positive, targeted educational interventions are needed to address misconceptions about fetal ultrasound scans and barriers to their utilization. Strengthening healthcare provider training and offering counseling during antenatal visits could improve knowledge and utilization rates. Additionally, this study urges health policymakers to ensure anomaly scan coverage for all pregnant women.

The purpose of this study was to explore the personal experiences of families with autism in Pokhara Metropolitan City, Nepal, especially dealing with their challenges and child developmental outcomes during the implementation of a home-based Applied Behavior Analysis (ABA) intervention. As a developing country, Nepal has significant gaps in the localized application and research of ABA. For this reason, this study used an interpretive sequential mixed methods approach to integrate quantitative and qualitative data by administering questionnaires to 30 parents of children with autism in a phased manner and conducting in-depth semi-structured interviews with two of these typical families. The results of the study showed that although parents generally recognized the role of ABA in improving family organization and daily norms, the overall satisfaction with the intervention was extremely low, with 76.67% of the families expressing “dissatisfaction”. Children showed some progress in eye contact and behavior management, but very limited development in language and communication. Families generally faced multiple pressures: heavy financial burdens, overburdened mothers as primary interveners, lack of training resources, and weak social support systems. Qualitative interviews further revealed that insufficient financial subsidies, a disconnection between training and practice, and a lack of ongoing professional guidance are major barriers for families in implementing ABA. The findings of this study suggest that a direct transplantation of the internationally utilized ABA intervention model in Nepal would face significant adaptation deficits. The future support systems should be more focused on developing adaptive programs that fit into Nepal's cultural, economic, and family structures. As the first exploratory study of family-based ABA interventions in the region, this study provides an important empirical basis and direction for subsequent research and practice.

Willingness to donate kidneys among relatives of hemodialysis patients is a critical issue, particularly in low-resource settings like Gaborone, Botswana, where kidney disease is a growing public health concern. This study aimed to examine the willingness of relatives of hemodialysis patients to donate kidneys and to identify health status factors that influence this willingness. A descriptive cross-sectional approach was adopted, using a standardized questionnaire to collect information from 131 family members of patients undergoing hemodialysis at selected health institutions in Gaborone. Both descriptive and inferential statistical techniques were applied to detect trends and associations among the study variables. The study revealed that 67.2% of relatives of hemodialysis patients in Gaborone expressed willingness to donate a kidney, while 32.8% were unwilling. Logistic regression showed that willingness to donate kidneys was significantly associated with perceived medical compatibility (AOR = 3.63). This study emphasizes the important influence of prior family experience with organ donation or transplantation on individuals’ willingness to donate kidneys. Public health strategies should leverage the influence of prior familial experiences with organ donation to enhance willingness to donate kidneys. Educational programs and counseling sessions can incorporate personal stories and testimonials from families who have participated in donation or transplantation, helping to reduce fear, build familiarity, and motivate potential donors. Healthcare providers should offer tailored guidance that reassures potential donors about the process, risks, and outcomes, while highlighting relatable experiences that encourage positive attitudes.

ABSTRACT Singlehood is on the rise, with one in three early midlife adults neither married nor cohabiting. However, most have experienced some family-building behaviors, making these singles a heterogeneous group. We drew on the life course perspective to assess how earlier family-building experiences were related to future family desires. Using a 2023 survey of U.S. single, early midlife adults aged 30–50 (N = 799), we investigated the linkages between prior marital experience, prior cohabitation experience, and having had a child with desires to form a new union using multinomial logistic regression. We also assessed how these same family experiences were related to desires to have a(nother) child using logistic regression. Early midlife singles varied in their relationship desires, with more wanting to cohabit with a partner than any other option, although substantial shares were either uncertain about their desires or simply did not want to cohabit or marry. Prior cohabitation experience was positively associated with wanting to form a union. Most early midlife single adults did not want to have a child and prior family experiences were immaterial to their fertility desires. A one-size-fits-all relationship trajectory does not apply to early midlife single adults.

ABSTRACT The present scoping review aimed to shed light on individuals’ motivations for choosing social work as a profession, an issue of particular relevance in a context of growing recruitment difficulties in the social work sector. Examination of 52 empirical studies conducted in Western countries and published in peer-reviewed journals provided an overview of current knowledge about explicit and implicit motivations for choosing social work. The predominant explicit motivations are altruistic motives (helping others or promoting social change), followed by the rewards individuals expect to gain from doing social work, such as establishing interpersonal relationships, feeling competent, and developing as a person. Other explicit motivations include career aspects and the fact that the opportunity arose. Implicit motivations for choosing social work include adverse or traumatic family experiences and the influence of role models, particularly relatives or social workers encountered as a service user. Finally, indirect information from the composition of the studies’ samples suggests that gender (female) may also influence decisions to become a social worker. However, none of the studies included in the review evaluated the mechanisms underlying the influence of the motivations identified. Furthermore, most included studies focused on social work students which limits the generalizability of some findings.

There is growing concern and controversy surrounding the rise of ‘chemsex’ – the use of psychoactive drugs during sex – among gay men. Concern centres on public health implications and the social costs of treatment, while the controversy relates to its psychological origins and appropriate interventions. Chemsex promotes disinhibition, confidence, libido and a sense of belonging; yet carries significant risks including sexually transmitted infections, mental illness, and death. Its use is often interpreted as a response to the historically homonegative social context of being gay, and the traumatic impact of the HIV pandemic. Although new HIV therapies may reduce fear of infection, research suggests that an HIV diagnosis remains traumatic for gay men, reinforcing anxiety about social acceptance. Chemsex can be understood at both individual and social levels through Fairbairn’s object relations theory. The social context may be conceptualised as a dynamic of libidinal and anti-libidinal social forces or ‘bad objects’, with the HIV pandemic symbolising a ‘traumatic release of bad objects’. For some gay men, this context precipitates release of repressed bad object relations rooted in early homophobic familial and communal experience. This fosters identification with bad objects and acceptance of the ‘burden of badness’. Such dynamics create an ‘internal saboteur’, which directs aggression towards the object and the self for being exciting and needy, respectively. Thus, gay intimacy may be unconsciously sabotaged or permitted only with punitive consequence. This pattern appears in a growing subgroup of gay men who seek intimacy through the potentially damaging route of chemsex, as illustrated in a case vignette. The article encourages debate around formulation, intervention and resource. Therapies, while being affirmative, should not only support clients in addressing negative beliefs and social stigma, but also aim to integrate repressed bad object relations and associated feelings.

Female surgeons more commonly delay childbearing and experience higher rates of infertility than women in the general population. More women are entering orthopaedic surgery but face unique challenges in family building. The accessibility of fertility preservation strategies among female orthopaedic surgeons remains underexplored. We aimed to investigate facilitators of and barriers to oocyte cryopreservation, especially during orthopaedic residency. A survey regarding family planning and experiences surrounding oocyte cryopreservation was designed and distributed via residency program directors, regional orthopaedic societies, and the Ruth Jackson Orthopaedic Society. Female orthopaedic surgery residents, fellows, and attending physicians were invited to participate. Of 169 participants, 107 (63%) reported intentionally delaying childbearing and 58 (34%) reported delaying or planning to delay for ≥4 years. Although 91 respondents (54%) had considered oocyte cryopreservation, only 36 (21%) had undergone or planned to undergo at least 1 cycle and 55 (33%) ultimately decided not to undergo it. Inflexible scheduling of work, lack of insurance coverage, and restrictive leave policy were the most important barriers to oocyte cryopreservation during residency. Among current residents and fellows, 30 (38%) would not have been comfortable telling program leadership that they were planning to undergo oocyte cryopreservation and 25 (32%) reported that they would not have been provided adequate scheduling flexibility. When given 5 multiple-choice questions about female fertility and the oocyte cryopreservation process, respondents answered a mean of 1.46 questions correctly. This study revealed a high degree of interest in oocyte cryopreservation among survey respondents but identified persistent barriers of financial burden, inflexible scheduling, institutional stigma, and limited fertility knowledge. Residency programs should prioritize schedule flexibility, proactive leadership support, and privacy-conscious accommodations for fertility-related care as well as structured reproductive health education for trainees. Barriers to fertility preservation during orthopaedic training directly affect physician well-being and the ability to recruit and retain women in this specialty, which, in turn, impact patient access to quality care from a diverse physician workforce.

ABSTRACTCommunity has long been key to the well‐being of gay men, yet little research examines how gay fathers, specifically, relate to the broader LGBTQ+ community. Drawing on interviews with 18 mostly White, (upper‐) middle‐class Canadian gay fathers, I investigate their expectations and experiences of family and community, showing they describe ‘gay community’ in terms of gay ancestors, friends, and shared gay activities. Fathers express deep gratitude for past LGBTQ+ people whose interdependent collective struggle secured their rights to marry and parent. They hope for support from family and gay friends and strive to maintain community ties, but find their efforts complicated by the demands of intensive parenting, geographic distance, and limited childcare support. As children grow, fathers build community with the straight parents of their children's friends, demonstrating how social class, whiteness, and homonormativity shape the reorganisation of these Canadian gay fathers’ lives—a process I call the gay parental turn.

ABSTRACT Purpose This study explored the lived experiences and family-related factors shaping pathways into substance use and homelessness among women experiencing homelessness in Tehran. Materials and Methods A qualitative phenomenological design was employed using Colaizzi’s method. Data were collected through semi-structured interviews with 26 homeless women in Tehran and were analyzed to identify recurring themes related to family experiences, substance use, and homelessness. Results The findings revealed multiple interrelated factors contributing to substance use and housing loss, including early and forced marriage, exposure to violence, coercion by male relatives into criminal activities, early sexual experiences, trauma, emotional disengagement from family, and escape from adverse home environments. Discussion These findings highlight the complex interplay of family dynamics, gendered power relations, social pressures, and personal trauma in shaping women’s pathways into substance use and homelessness. The results suggest that homelessness among women cannot be understood as the outcome of a single event, but rather as a cumulative process rooted in harmful family and social conditions. Conclusion Addressing early trauma and adverse family experiences may improve treatment engagement and strengthen the effectiveness of support services. Preventive and intervention efforts focusing on family violence, trauma, and social support are likely to play an important role in reducing women’s risk of homelessness and its associated harms.

ABSTRACT Background This study sought to understand the shared experiences of families impacted by postpartum psychosis. Methods Four couples were interviewed and shared how they have made sense of this traumatic experience together over time. Data was analysed using Dialogical Narrative Analysis. Interpretation of the findings is limited by the small sample size. Results Amongst this small group of white-British, heterosexual couples, increased empathy seems to develop towards others experiencing mental health difficulties following lived experience of postpartum psychosis. Some evidence of increased feelings of closeness and strength within relationships was found, but this was not consistent across the whole sample. Discussion These findings suggest potential value in implementing couple-based interventions within perinatal mental health services.

After a pediatric intensive care unit (PICU) admission, children can experience long-term effects on their growth and development, termed post-intensive care syndrome in pediatrics (PICS-p). The impact of a PICU admission on a family's social health is understudied, especially for families with low socioeconomic status (SES) who may be at greater risk for PICS-p. This study explored how families with low SES experience the social aftermath of a PICU admission, specifically the impacts on aspects of social health, including routines, relationships, and finances. We performed a prospective cohort study using a constructivist approach to qualitative research. We purposefully sampled and interviewed primary caregivers of patients with low SES requiring PICU admission 1 to 2months after hospital discharge. Consistent with reflexive thematic analysis, we created inductive codes, developed themes from these codes, and used an existing family adaptation model to organize themes. We interviewed 20 families (17 mothers, 1 foster mother, 1 grandmother, and 1 father) and constructed the following themes: (1) families had to adjust to achieve a balance, even before the PICU admission; (2) a PICU admission is a critical disruption; and (3) families had to actively work to adapt after PICU admission by increasing supports, decreasing demands, and altering their attitudes. PICU admission can be a critical disruption requiring families to adapt to a new normal. Building on existing literature, we present the Family Adjustment and Adaptation to Critical Illness model. Future efforts should work to understand and optimize families' ability to increase supports and decrease demands.

Black fathers in America play crucial roles in the development of their children, but face systemic and structural inequities that strain their fatherhood role and negatively affect their well-being and family experiences. Research on Black fatherhood has traditionally been reactive, deficit-based, and conducted without input from Black fathers themselves, with fatherhood services and policies following suit. The present study utilized concept mapping, a community-based participatory research method, to assess what Black fathers in America need to adapt and succeed in their fatherhood role despite the sociopolitical context in which they live. Black community advisory board participants (n = 9) brainstormed 60 unique items and grouped them into six unique clusters: gatekeeper-less resources, tools of relational engagement, receptivity to influence, sustained mentorship and accountability growth, positive internal mindset, and purposeful leadership. By centering the voices of Black fathers and those who support them, this study provides a framework for future programmatic and advocacy efforts to foster the positive adaptation and success of Black fathers. (PsycInfo Database Record (c) 2026 APA, all rights reserved).

This pilot investigation aims to: 1) determine public understanding of brain death/death by neurologic criteria (BD/DNC), 2) identify approaches that may help families understand the concept and process of BD/DNC determination, and 3) contribute recommendations to a future BD/DNC toolkit. Multicenter mixed-methods study of Patient and Family Advisory Council (PFAC) members carried out during 2024. Four children's hospitals in the United States. PFAC members. Following an introductory PFAC meeting outlining the study objectives, we distributed surveys to PFAC members to assess baseline understanding of BD/DNC. At a subsequent PFAC meeting, investigators provided education on BD/DNC, presented case scenarios, and led focus groups to explore content and resources of potential benefit to a future BD/DNC determination family toolkit. Thematic content analysis was used to summarize meeting field notes. Thirty members completed the online survey and 55 participated in focus groups. Among survey respondents, 8 of 30 were familiar with the term death by neurologic criteria, 3 of 30 knew how BD/DNC is diagnosed, and 8 of 30 understood the distinctions between BD/DNC, coma, and persistent vegetative state. Focus groups highlighted facilitators to effective family discussions, including: 1) cultural sensitivity, 2) multidisciplinary team involvement/availability, 3) empathetic communication, 4) peer supports, and 5) trust. Barriers included: 1) limited communication training/skills, 2) lack of standardized care/information, 3) insufficient real-time credible resources, 4) perceived links with organ donation, 5) time constraints, and 6) diagnostic confusion. Participants recommended toolkits incorporating plain-language explanations (e.g., infographics), free online resources, and peer support. Our findings confirm that lay person understanding of BD/DNC is limited, even for PFAC members. Family understanding and experiences during this emotionally challenging time might be improved with: 1) clinician training in clear and culturally responsible communication, 2) online educational resources, and 3) consistent institutional support.