Completed Qualitative Interviews Research Articles

Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth.

Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties. To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed. Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction. This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population.

Exploring staff experiences of remote working in a new community rehabilitation team

Background/Aims Health services required significant adaptation during the COVID-19 pandemic. The remote community enhanced rehabilitation team was created during the pandemic in response to faster discharges. This service evaluation aimed to explore staff experiences of remote working when implementing this new community rehabilitation team. Methods Six members of the community enhanced rehabilitation team, including nursing and psychology staff, completed qualitative semi-structured interviews about staff experiences. The interviews explored experiences of delivering clinical care, providing and receiving team support and personal impacts of remote working. Data were analysed using thematic analysis via a critical-realist approach. Results Thematic analysis from the interview transcripts revealed five main themes: anxiety related to remote working practices during a global pandemic, work–life balance, developing relationships, limits to remote working and working towards a hybrid model. Conclusions Challenges and benefits of remote working were identified along with some mitigations. Moving forward, a hybrid working model would likely benefit both service users and staff.

Body image and psychosocial outcomes in youth and young adults with differences of sex development: a multi-method study.

Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment. This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.

Behavioral weight loss treatment for adults with binge-eating disorder: A qualitative analysis of patients' perspectives and experiences.

Understanding the perspectives of behavioral weight loss (BWL) participants could inform whether, how, and for whom BWL should be offered. All 126 participants in a clinical trial of BWL for adults with binge-eating disorder (BED) and overweight/obesity were contacted about a qualitative study. 45 participants, 11 of whom had dropped out of the parent study, completed qualitative interviews. The interview guide was developed using data from a survey of providers who offer Health at Every Size and other weight-neutral lifestyle interventions. Questions were phrased to invite even the most negative responses. Questions focused on participants' experiences of weight stigma during treatment, perceptions of BWL's calorie and WL goals, and opinions of BWL and weight-neutral interventions. We identified four themes using thematic analysis: (1) BWL did not perpetuate weight stigma. (2) Calorie and WL goals did not exacerbate participants' binge eating. (3) Patients should have the right to pursue any treatment that aligns with their personal goals. (4) BWL can improve participants' overall health. BWL participants with BED and overweight/obesity want others to have access to a program that can reduce both weight and binge eating. Participants emphasized that no treatment works for everyone, and they all agreed that BWL had not perpetuated weight stigma. Fewer than 20% of participants considered the program's calorie and WL goals to be harmful; most participants viewed those goals as achievable and helpful, and many asserted that their participation in BWL had improved their overall health. We interviewed adults with binge-eating disorder and overweight/obesity who had participated in a behavioral weight loss (BWL) program. Our participants wanted others in their position to have access to BWL because it aims to reduce both weight and binge-eating frequency. Efforts should be made to provide patients, clinicians, and policymakers with the knowledge that supervised, evidence-based BWL is an effective and desired treatment choice for this population.

Perceptions about doxycycline post-exposure prophylaxis (Doxy-PEP) as an STI-prevention strategy among gay and bisexual men (GBM) in the United States: Results from a qualitative study

ObjectiveTo leverage qualitative data to explore gay and bisexual men’s (GBM) perceptions about doxycycline post-exposure prophylaxis (Doxy-PEP). Doxy-PEP is a novel biomedical STI-prevention strategy that helps reduce the risk of acquiring bacterial STIs. Little is known about Doxy-PEP’s acceptability in the U.S., nor how best to engage those most vulnerable to STIs in taking up this nascent prevention strategy. MethodBetween July and September of 2023, 24 GBM from across the U.S. completed qualitative interviews about their perceptions regarding Doxy-PEP. Interviews were analyzed using a codebook approach to thematic analysis. ResultsParticipants were generally interested in using Doxy-PEP, but were concerned about the potential for antibiotic resistance, side-effects, medication interactions to occur, along with stigmatizing discourse around its use. Meanwhile, participants were motivated by the simplicity of Doxy-PEP and the protection it could confer on both an individual and community-level— as well as its potential to reduce STI-related anxiety. Finally, participants desired additional information on Doxy-PEP to address their concerns. ConclusionsThere is a need for clear guidelines and expanded public health messaging on Doxy-PEP in the U.S.

Is it an abortion: Classification of pregnancy-ending interventions after 24 weeks in the presence of lethal fetal anomalies

ObjectiveTo determine how obstetrician-gynecologists categorize pregnancy-ending interventions in the setting of lethal fetal anomalies. Study DesignWe conducted a sequential explanatory mixed methods study of U.S. obstetrician-gynecologists from May to July 2021. We distributed a cross-sectional online survey via email and social media and completed qualitative telephone interviews with a nested group of participants. We assessed institutional classification as induced abortion versus indicated delivery for six scenarios of ending a pregnancy with lethal anomalies after 24 weeks, comparing classification using McNemar chi-square tests with Benjamini-Hochburg correction for multiple comparisons with false discovery rate of 0.05. We performed thematic analysis of qualitative data and then performed a mixed methods analysis. ResultsWe included 205 respondents; most were female (84.4%), had provided abortion care (80.2%), and were general OB/GYNs (59.3%), with broad representation across pre-Dobbs state and institutional abortion policies. Twenty-one qualitative participants had similar characteristics to the whole sample. Scenarios were classified as induced abortion by the majority of respondents, ranging from 53.2% for 32-week induction for anencephaly, to 82.9% for feticidal injection and 24-week induction for anencephaly. Mixed methods analysis revealed the relevance of gestational age (later interventions less likely to be considered induced abortion) and procedure method and setting (dilation and evacuation, feticidal injection, and freestanding facility all increasing classification as induced abortion). ConclusionThere is wide variation in classification of pregnancy-ending interventions for lethal fetal anomalies, even among trained OB/GYNs. Method, timing, and location of ending a nonviable pregnancy influence classification, though perinatal outcome is unchanged. ImplicationsThe classification of pregnancy-ending interventions for lethal fetal anomalies after 24 weeks as indicated delivery versus induced abortion is reflective of sociopolitical regulatory factors as opposed to medical science. The regulatory requirement for classification negatively impacts access to care, especially in environments where induced abortion is legally restricted.

“Nobody has written the book about what non-binary people should put forward in relationships”: Exploring gender equity in relationships of queer, trans, and non-monogamous young women and non-binary youth in British Columbia, Canada

Understanding the unique ways in which queer, trans, and non-monogamous young women and non-binary youth navigate and negotiate equitable intimate relationships is a first step toward strong research, programs/resources, and policies to support healthy relationship dynamics across the life course. Using a youth-engaged collaborative Reflexive Thematic Analysis, we aimed to explore how youth of diverse genders and relationship experiences understand gender equity in their relationships. Thirty cis- and transgender inclusive young women (46.7%) and non-binary youth (53.3%) aged 17–29 who were in a current (76.6%) or recent (in past 12 months, 23.4%) non-heterosexual and/or non-monogamous intimate relationship and residing in British Columbia, Canada, completed qualitative interviews between August and November 2022. Of the 30 youth, 53.3% reported having experience living as a trans person, 33.3% identified only as bisexual and 10% identified as only lesbian or gay, whereas the remaining 56.7% identified with ≥1 of: queer, pansexual, and demisexual. Participants identified that relationship equity requires: 1) Moving away from cis-heteronormative conceptualizations of gender roles and norms; 2) Actively working to dismantle hierarchal power structures by sharing power, responsibility, labour, and decision-making; and 3) Accommodating and affirming each person's unique needs and identities in a relationship. For theme one, youth further described the ways in which they re-imagined relationship norms and discussed the various challenges to resisting ingrained hierarchical cis-heteronormativity. This research contributes a greater understanding of how to create equitable and healthy relationships and has important implications for healthcare providers, educators, and policymakers working with queer, transgender, and non-monogamous youth.

Project nature: promoting outdoor physical activity in children via primary care

BackgroundFamilies face a range of barriers in supporting their children’s active play in nature including family circumstances, environmental constraints, and behavioral factors. Evidence-based strategies to address these barriers are needed. We aimed to develop and pilot test a primary care-based family-centered behavioral intervention to promote active outdoor play in 4–10 year-old children.MethodsProject Nature, a provider-delivered intervention that provides informational resources and an age-appropriate toy for nature play, was initially developed for children ages 0–3. With stakeholder input, we adapted existing materials for 4–10 year-olds and conducted usability testing at an urban clinic serving families from diverse backgrounds. Subsequently, we conducted a mix-methods pilot study to evaluate intervention feasibility and acceptability. Parents of 4–10 year-olds completed pre- and post-surveys (n = 22), and a purposive subset (n = 10) completed qualitative interviews. Post-intervention, pediatric providers (n = 4) were interviewed about their implementation experiences.ResultsThe majority (82%) of parents liked the information provided and the remaining (18%) were neutral. Qualitatively, parents reported that: the toy provided a tangible element to help children and parents be active, they did not use the website, and they wished the intervention emphasized strategies for physical activity during cold and wet seasons. Providers felt the materials facilitated discussion about behavior change with families. There were no statistically significant changes in PA and outdoor time pre- and post-intervention.ConclusionsProject Nature was welcomed by providers and families and may be a practical intervention to promote outdoor active play during well-child visits. Providing an age-appropriate nature toy seemed to be a critical component of the intervention, and may be worth the additional cost, time and storage space required by clinics. Building from these results, Project Nature should be revised to better support active outdoor play during suboptimal weather and evaluated to test its efficacy in a fully-powered trial.

Diagnostic odyssey for patients with acid sphingomyelinase deficiency (ASMD): Exploring the potential indicators of diagnosis using quantitative and qualitative data

Acid sphingomyelinase deficiency (ASMD) is a rare, progressive, and potentially fatal lysosomal storage disease. This two-part international study aimed to understand physician, patient, and caregivers' experiences during the ASMD diagnostic journey. Qualitative interviews were conducted with patients with ASMD type B or A/B, caregivers (for patients <18 years), and physicians (January 2018–May 2019). A quantitative patient chart review was then performed by physicians (1–3 charts per physician) (April to May 2020). Overall, 12 physicians and 27 patients (self-reported, n = 11; caregiver-reported, n = 16) completed qualitative interviews. Symptoms first presented at approximately 2 years, with physician visits 2 months–1 year later. On average, diagnosis took 3 years and average age at diagnosis was 5 years. During childhood, all patients reported abdominal enlargement and 67% had respiratory issues. Adult patients frequently reported fatigue (64%) and heart problems (36%). In the quantitative study, 86 physicians reviewed 193 ASMD patient charts. At initial presentation, most patients reported abdominal enlargement (pediatric, 55%; adolescents/adults, 39%). Time to diagnosis ranged 0–10 years for patients with ASMD type A/B or type B, and most patients (85%) received an incorrect initial diagnosis. Diagnosis of ASMD can be challenging, and is often delayed due to disease heterogeneity and misdiagnoses.

Project ECHO in Psychiatric Workforce Development: the Example of a Perinatal Mental Health ECHO.

Perinatal mental health and substance use disorders (PMHSUD) often go unrecognized and untreated. This study examined the use of the Project ECHO model to teach obstetric, primary care, and mental health clinicians about screening, diagnosis, and treatment of PMHSUD. Participants in 3years of the University of Washington's Moms' Access Project (MAP) ECHO program (2019-2022) completed pre- and post-program surveys. Nine participants in year 1 completed qualitative interviews. Dedoose was used for qualitative analysis of interviews. Of 136 participants, 62.5% (15/24) completed both pre- and post-surveys in year 1, 56% (28/50) in year 2, and 32.2% (20/62) in year 3. Most respondents agreed or strongly agreed that they were glad to have participated (96.8%; 60/62) and that they had used information learned in the program in treating a patient (95.1%; 58/61). In all years, respondents endorsed increased confidence regarding learning objectives of the program. Qualitative interviews following year 1 yielded themes of hierarchy of competence, motivation versus results of participation, connection, and politics of change: position and practice type. Findings supported the feasibility, acceptability, and self-reported effectiveness of the ECHO model for workforce development in PMHSUD.

How Personal and Familial Narratives Affect the Decision Making of Mature-Aged First-in-Family Students Pursuing University

Mature-age students who are the first in their family to attend university have navigated a challenging road to higher education. The aim of the present study was to understand the influence and interaction of familial and personal stories of this cohort and their choices about university study – why they initially did not go after high school, and what brought them to university years later. Six first-year students at an Australian university completed qualitative interviews which were thematically analysed. Findings indicated that early in life families discouraged higher education, but students were able to integrate these familial stories with new, life-affirming, personal stories. Students’ choice to attend university was related to psychological capital and agentic abilities via the stories of optimism, hope, efficacy and resilience. Familial stories acted as forerunners to resilience-building for envisioning life-affirming stories about future opportunities for university study and for stability a university degree represented.

Evaluating barriers and facilitators to healthcare providers’ use of an emergency department electronic referral portal for high-risk children with asthma using the Theoretical Domains Framework

Objective Urban children with asthma are at risk for frequent emergency department (ED) visits and suboptimal asthma management. ED visits provide an opportunity for referrals to community-based asthma management services. Electronic medical record-based referral portals have been shown to improve quality of care but use of these portals by healthcare providers (HCPs) is variable. The purpose of the study was to investigate facilitators, barriers, and recommendations to improve the use of an electronic referral portal to connect children presenting with asthma exacerbations in an urban pediatric ED to community-based education and case management services. Methods The study was grounded in the Theoretical Domains Framework, an implementation provided the theoretical basis of the study. All ED HCPs were invited to complete qualitative interviews; twenty-three HCPs participated. Interviews were coded using directed content analysis. Results Facilitators to portal use included its relative ease of use and HCP beliefs regarding the importance of such referrals for preventive asthma care. Barriers included insufficient time to make referrals, lack of information regarding the community agency and challenges communicating the value of the referral to patients and/or their caregivers. Conclusions Successfully engaging HCPs working in ED settings to use electronic portals to refer children with asthma to community agencies for health services may involve helping providers increase their comfort and knowledge of the external provider agency, ensuring organizational leaders support the need for preventive asthma care and provision of feedback to HCPs on the success of such referrals in meeting the needs of those families served.

Preventing alcohol use post-bariatric surgery: patient perspectives on a technology-based approach.

Nearly two-thirds of patients engage in alcohol use after bariatric surgery, while a substantial number meet criteria for alcohol use disorder after their procedure. Given that pre-surgical education may not be sufficient, alternative methods of preventing post-surgical drinking are needed. We sought feedback on a proposed technology-based intervention to reduce alcohol use for individuals who have undergone bariatric surgery. Twenty patients who consumed alcohol post-surgery completed qualitative interviews where they provided opinions on sample intervention content, delivery method, timing, and other aspects of a two-session web-based intervention followed by tailored text messaging for 6 months. Interviews were recorded, transcribed, and coded using thematic analysis principles. Participants strongly endorsed using technology to deliver an alcohol intervention, citing the interactivity and personal tailoring available in the proposed software. Education about the effects of post-surgical drinking and learning new coping strategies for social situations were the two most salient themes to emerge from questions about intervention content. Throughout the interviews, participants strongly highlighted the importance of measuring patient readiness to change alcohol use and matching intervention content to such motivation levels. Respondents felt that text messages could extend what they had learned, but also requested additional non-alcohol content (e.g., recipes, exercise tips). Most participants agreed that an online forum consisting of peers and professionals with whom they could ask questions and interact would be useful. Web- and text message-based interventions may be an acceptable approach to prevent alcohol use post-bariatric surgery.

Examining the perceived impact of the COVID-19 pandemic on cervical cancer screening practices among clinicians practicing in Federally Qualified Health Centers: A mixed methods study.

The COVID-19 pandemic led to reductions in cervical cancer screening and colposcopy. Therefore, in this mixed methods study we explored perceived pandemic-related practice changes to cervical cancer screenings in federally qualified health centers (FQHCs). Between October 2021 and June 2022, we conducted a national web survey of clinicians (physicians and advanced practice providers) who performed cervical cancer screening in FQHCs in the United States during the post-acute phase of the COVID-19 pandemic, along with a sub-set of qualitative interviews via video conference, to examine perceived changes in cervical cancer screening practices during the pandemic. A total of 148 clinicians completed surveys; a subset (n=13) completed qualitative interviews. Most (86%) reported reduced cervical cancer screening early in the pandemic, and 28% reported continued reduction in services at the time of survey completion (October 2021- July 2022). Nearly half (45%) reported staff shortages impacting their ability to screen or track patients. Compared to clinicians in Obstetrics/Gynecology/Women's health, those in family medicine and other specialties more often reported reduced screening compared to pre-pandemic. Most (92%) felt that screening using HPV self-sampling would be very or somewhat helpful to address screening backlogs. Qualitative interviews highlighted the impacts of staff shortages and strategies for improvement. Findings highlight that in late 2021 and early 2022, many clinicians in FQHCs reported reduced cervical cancer screening and of pandemic-related staffing shortages impacting screening and follow-up. If not addressed, reduced screenings among underserved populations could worsen cervical cancer disparities in the future. This study was funded by the American Cancer Society, who had no role in the study's design, conduct, or reporting.

Family Partner: study protocol for a pilot randomised study of a home-visitation intervention in Norway.

Every year, about 5% of children in Norway experience severe child maltreatment and need support from the child welfare services. However, research-supported interventions for this group are lacking. The current study piloted an intensive home-visitation intervention, Family Partner, which aims to reduce child maltreatment among at-risk parents by improving parental skills, agency and trust in the welfare services, and children's well-being. The randomised controlled trial piloted in this study examines the acceptability of the Family Partner intervention for staff and families and evaluates its feasibility for a full-scale randomised controlled trial. This protocol outlines a prospective, parallel, pilot randomised trial of the Family Partner intervention in three Norwegian municipal child welfare services. The participants are families with children under 12 years of age, where the parents are identified as having challenges. Families in the treatment group receive the Family Partner intervention, while families in the control group receive ordinary child welfare services. Data are collected at baseline, and at 3, 6, 12 and 18 months after recruitment. The pilot study monitor retention and adherence to inform the feasibility of a future full-scale randomised study. To assess the acceptability of the trial and intervention, a subsample of the participating families, as well as the family partners and representatives of the child welfare services in each municipality, are invited to complete qualitative interviews. The results will guide the design of a fully powered randomised controlled trial of the Family Partner intervention compared with ordinary child welfare services. ClinicalTrials.gov identifier: NCT04957394; Pilot Trial of Family Partner: a Child Maltreatment Prevention Intervention (FAMPART); registered on 12 July 2021.

Qualitative Examination of the Impact of the COVID-19 Pandemic on Access and Adherence to Pre-exposure Prophylaxis (PrEP) Among Sexual and Gender Minorities.

During the COVID-19 pandemic, pre-exposure prophylaxis (PrEP) access and adherence decreased nationwide. This study examined pandemic-related disruptions to PrEP access and adherence among clients of a health center (Center) in Los Angeles, California. Clients (n = 25) and Center personnel (n = 11) completed qualitative interviews from March to July 2021. Although the Center provided options for remote PrEP care (i.e., telehealth, STI self-testing kits, and prescription delivery), clients experienced difficulty navigating services or lacked equipment for telehealth. More than half (n = 13) of clients discontinued PrEP during COVID-19 due to decreased sexual partners, relocation, or insurance status changes. Among those who continued PrEP, the majority reported no change in adherence, while a minority reported worsening adherence due to distractions/forgetting, prescription refill issues, lack of insurance coverage, and fear of completing in-person visits. Findings highlight the challenges of navigating PrEP services during COVID-19 and suggest PrEP services enhancement to adapt to crisis events.

Parents' Preferences for Primary Care-Based Behavioral Services and the COVID-19 Pandemic: A Mixed Method Study.

This study examined how family factors impacted parents' attitudes toward integrated behavioral health (IBH) in pediatric primary care during the COVID-19 pandemic. We hypothesized that COVID-19 impact would predict family functioning challenges, and that pre-existing familial contextual factors would predict parents' interest in IBH modalities. Parents of children ages 1.5-5 years (N = 301) from five primary care clinics completed a survey with measures assessing familial contextual factors (income, race and ethnicity, and parents' childhood adversity), COVID-19 impact on family relationships and wellbeing, family functioning (child behavior, parenting self-efficacy, and parent psychological functioning), and parents' preferences for behavioral support in primary care. A subsample of parents (n = 23) completed qualitative interviews to provide deeper insights into quantitative relationships. Higher COVID-19 impact was significantly associated with worse parent mental health and child behavior problems, as well as lower interest in IBH virtual support options. Overall, lower SES and racial and/or ethnic minority parents both indicated greater interest in IBH modalities compared to higher SES and White parents, respectively. Qualitative interviews identified how pandemic stressors led to increases in parents' desire for behavioral support from pediatricians, with parents sharing perspectives on the nature of support they desired, including proactive communication from providers and variety and flexibility in the behavioral supports offered. Findings have important implications for the provision of behavioral supports for families in primary care, underlying the need to increase parents' access to IBH services by proactively providing evidence-based resources and continuing to offer telehealth support.

Satisfaction With Participation in the First STEPS Behavioral Intervention: Experiences of Parents of Young Children With Newly Diagnosed Type 1 Diabetes.

Parents of young children with new-onset type 1 diabetes (T1D) often experience significant distress and struggle with T1D management during a challenging developmental stage. The First STEPS (Study of Type 1 in Early childhood and Parenting Support) trial evaluated a stepped-care behavioral intervention comprising increasingly intensive intervention steps (peer parent coach, cognitive-behavioral counseling, consultations with diabetes educator and psychologist) based on need. The intervention improved parental depressive symptoms compared to usual care. Subsequently, we examined parent satisfaction with the intervention to guide potential implementation and refinement for future trials. Participants were 157 parents of young children newly diagnosed with T1D. At 9 months post randomization, n = 153 completed satisfaction questionnaires and n = 17 completed qualitative interviews. Satisfaction ratings about trial procedures and each intervention step were summarized. We used thematic analysis with the interview transcripts to generate themes related to participants' experiences in the trial overall and intervention specifically. We explored differences in themes between participants who did versus did not respond to the intervention and among those who experienced different intervention steps. Most participants in both arms rated study participation and methods positively (>95%), and those completing interviews described high satisfaction with study procedures overall, retention incentives, and contact with study staff. Intervention participants' satisfaction ratings were high across steps. Two qualitative themes reflected satisfaction with the intervention enhancing self-efficacy and social support. High satisfaction suggests implementing a stepped-care behavioral intervention as part of routine clinical care following T1D diagnosis would be well received.

“It became easier once I knew”: Stakeholder perspectives for educating children and teenagers about their difference of sex development

ObjectiveSecrecy about a child’s difference of sex development (DSD) can lead to internalized shame and stigma. We explored how teenagers and adults with DSD, parents, healthcare providers, and allied professionals value and perceive patient education. MethodsStakeholders (n = 110) completed qualitative semi-structured interviews. Relevant themes for educational content were queried and organized. ResultsEducation was consistently identified as essential to successful outcomes. There was less consistency in how to educate patients. Disagreement existed regarding who should champion the education process. Participants believed medically relevant information should be shared gradually with attention to developmental capacity. Details were lacking regarding how much or what information to share. Participants noted that vetted resources were helpful. Benefits of sharing condition-specific information with patients included supporting their psychosocial development. Barriers included parental resistance to sharing information due to shame/stigma, and cultural and/or family dynamics. ConclusionsStakeholders’ different perspectives regarding patient DSD education warrant future research to focus on the design, evaluation, and implementation of education-focused interventions. Practice implicationsHealthcare providers are responsible for supporting the education of children and teenagers with DSD about their condition. When considering barriers, adopting a cultural or family systems framework can reduce parental resistance and promote open dialogue.

Barriers and facilitators to the use of medication for opioid use disorder within the criminal justice system: Perspectives from clinicians

IntroductionThis study examines social service clinicians' (SSCs) perspectives of factors within the criminal justice system that impact justice-involved individuals' use of medications for opioid use disorder (MOUD). Opioid use disorder (OUD) rates are high among justice-involved individuals, and overdose risk is heightened upon release from incarceration. This study is innovative, as it specifically focuses on criminal justice contexts that influence the MOUD continuum of care from the perspective of clinicians working within the criminal justice system. Understanding criminal justice-related facilitators and barriers to MOUD treatment will guide tailored policy intervention to increase MOUD use and promote recovery and remission among justice-involved individuals. MethodsThe study completed qualitative interviews with 25 SSCs who are employed by a state department of corrections to provide assessment and referrals to substance use treatment to individuals on community supervision. The study used NVivo software to code the major themes found within each transcribed interview; two research assistants participated in consensus coding to ensure consistency in coding across transcripts. This study focused on the secondary codes that fell under the “Criminal Justice System” primary code, as well as codes that indicated barriers and facilitators to MOUD treatment. ResultsSSCs cited sentencing time credits as structural facilitators of MOUD treatment; clients sought more information about extended-release naltrexone since time off of their sentence was available if initiated. Support for extended-release naltrexone by officers and judges was often mentioned as an attitudinal facilitator of initiation. Poor intra-agency collaboration among department of corrections agents was an institutional barrier to MOUD. Also, probation and parole officers' stigma surrounding other types of MOUD, specifically buprenorphine and methadone, was an attitudinal barrier to MOUD within the criminal justice system. ConclusionsFuture research should examine the effect that time credits have on extended-release naltrexone initiation, considering the wide consensus among SSCs that their clients were motivated to initiate this type of MOUD because of the resulting time off their sentences. Stigma among probation and parole officers and lack of communication within the criminal justice system need to be addressed so that more individuals with OUD may be exposed to life-saving treatments.