Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

"It's Like A Partnership": Exploring the Primary Care Experiences and Patient-Defined Goals of People Who Use Drugs.

BACKGROUND: Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. OBJECTIVE: To explore how PWUD navigate primary care with a focus on understanding their primary care goals. DESIGN: A qualitative study using semi-structured interviews. PARTICIPANTS: PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. APPROACH: Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. KEY RESULTS: Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. CONCLUSIONS: To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.

Perspectives and Recommendations from Hospitalized Patients with Substance Use Disorders: A Qualitative Study.

BACKGROUND: Individuals with substance use disorders (SUDs) are hospitalized in growing numbers. Stigma is pervasive among their hospital providers, and SUD management during medical admissions is often inadequate. However, little is known about how these patients perceive their care quality. In particular, few studies have explored their positive care perceptions or recommendations for improvement. OBJECTIVE: To explore perspectives on positive aspects, negative aspects, and consequences of care, as well as recommendations for improvement among hospitalized patients with SUDs. DESIGN AND PARTICIPANTS: We conducted semi-structured, in-depth bedside interviews (n = 15) with patients who have been diagnosed with a SUD and were admitted to medical or surgical floors of an urban academic medical center. APPROACH: Interviews explored patients' hospital experiences and recommendations for improvement. The interviews were audio-recorded, transcribed verbatim, and imported into NVivo software. Two reviewers independently coded the transcripts using interpretative phenomenological analysis and inductive thematic analysis according to grounded theory, and recurring themes were identified from the data. Patients' demographic and clinical data were analyzed with descriptive statistics. KEY RESULTS: Perceived clinical and emotional proficiency were the most important components of positive experiences, whereas perceived bias and stigmatized attitudes, clinical improficiency, and inhumane treatment were characteristic of negative experiences. Such care components were most consequential for patients' emotional well-being, trust, and care quality. Recommendations for improving care included specific suggestions for initiating and promoting continued recovery, educating, and partnering in compassionate care. CONCLUSIONS: Hospitalized patients with SUDs often experience lower quality and less compassionate care linked to pervasive stigma and poor outcomes. Our study highlights under-recognized perspectives from this patient population, including socioemotional consequences of care and recommendations grounded in lived experiences. By striving to advance our care in accordance with patients' viewpoints, we can turn hospitalizations into opportunities for engagement and promoting recovery.

Identifying barriers and facilitators to self care in young adults with type 2 diabetes.

AIMS: There is a rising trend of young-onset type 2 diabetes (YOD) occurring before the age of 40 years. Lower adherence to self care behaviours (diet, physical activity and taking medication) contributed to poorer glycaemic control and higher risk of complications. Young adults with YOD face unique challenges, and our study aimed to identify the main barriers and facilitators of self care behaviours in this population. METHODOLOGY: A qualitative study was conducted in the National Healthcare Group Polyclinics, Singapore, using in-depth semi-structured interviews. Maximal variation sampling was employed to include participants with YOD of varied age, ethnicity, educational levels and marital status. Thematic analysis was conducted, and barriers and facilitators were identified and mapped to domains of the theoretical domains framework. RESULTS: Twenty-one participants aged 22-39 years were interviewed. We found patterns of intentions, self care behaviours and mindsets that were associated with different barriers and facilitators. Four patterns were identified and were named according to mindsets: avoidant, indifferent, striving and activated. In addition, experience of stigma and self-blame from having type 2 diabetes in young adulthood was common across all mindsets, contributing to poorer self care behaviours and increased psychological burden. CONCLUSION: Our study identified key barriers and facilitators of diet, physical activity and medication adherence in young adults with type 2 diabetes. Understanding barriers and facilitators, as related to mindsets, intentions and behaviours, will support a more individualised care approach.

Impacts of State-Level Opioid Review Programs on Injured Workers and Their Health Care Providers: A Qualitative Study in Washington and Ohio.

Policy Points Workers' compensation agencies have instituted opioid review policies to reduce unsafe prescribing. Providers reported more limited and cautious prescribing than in the past; both patients and providers reported collaborative pain-management relationships and satisfactory pain control for patients. Despite the fears articulated by pharmaceutical companies and patient advocates, opioid review programs have not generally resulted in unmanaged pain or reduced function in patients, anger or resistance from patients or providers, or damage to patient-provider relationships or clinical autonomy. Other insurance providers with broad physician networks may want to consider similar quality-improvement efforts to support safe opioid prescribing. CONTEXT: Unsafe prescribing practices have been among the central causes of improper reception of opioids, unsafe use, and overdose in the United States. Workers' compensation agencies in Washington and Ohio have implemented opioid review programs (ORPs)-a form of quality improvement based on utilization review-to curb unsafe prescribing. Evidence suggests that such regulations indeed reduce unsafe prescribing, but pharmaceutical companies and patient advocates have raised concerns about negative impacts that could also result. This study explores whether three core sets of problems have actually come to pass: (1) unmanaged pain or reduced function among patients, (2) anger or resistance to ORPs from patients or providers, and (3) damage to patient-provider relationships or clinical autonomy. METHODS: In-depth semistructured interviews were conducted with 48 patients (21 from Washington, 27 from Ohio) and 32 providers (18 from Washington, 14 from Ohio) who were purposively sampled to represent a range of injury and practice types. Thematic coding was conducted with codebooks developed using both inductive and deductive approaches. FINDINGS: The consequences of opioid regulations have been generally positive: providers report more limited prescribing and a focus on multimodal pain control; patients report satisfactory pain control and recovery alongside collaborative relationships with providers. Participants attribute these patterns to a broad environment of opioid caution; they do not generally perceive workers' compensation policies as distinctly impactful. Both patients and providers comment frequently on the difficult aspects of interacting with workers' compensation agencies; effects of these range from simple inconvenience to delays in care, unmanaged pain, and reduced potential for physical recovery. CONCLUSIONS: In general, the three types of feared negative impacts have not come to pass for either patients or providers. Although interacting with workers' compensation agencies involves difficulties typical of interacting with other insurers, opioid controls seem to have generally positive effects and are generally perceived of favorably.

Qualitative analysis of Canadian blood and plasma donors' views on expanding donor screening eligibility for gay, bisexual, and other men who have sex with men.

BACKGROUND: In many countries, sexually active gay, bisexual and other men who have sex with men (gbMSM) continue to be screened based on their sex or gender and the sex or gender of their sexual partner. However, there is growing support that screening based on specific sexual behaviors that pose risk of transfusion transmissible infection is a better approach to donor screening. STUDY DESIGN AND METHODS: This paper reports results from Phase 1 (qualitative) of a mixed-methods study on Canadian blood and plasma donors' views on expanding eligibility for gbMSM by changing to sexual behavior-based screening. Semistructured interview data with 40 donors (whole blood = 20, plasma = 20; male = 21, female = 18, nonbinary = 1; mean age = 46.2; 10% participation rate) in Canada were analyzed using a thematic approach. RESULTS: All participants, except one, supported the change as they anticipated that at least one of three outcomes would be achieved: increasing blood supply, enhancing equity, and improving or maintaining the safety of blood supply. One donor who was more skeptical of the change questioned the scientific evidence for the change and indicated mistrust of state institutions. The discussion considers implications for blood operators' communication strategies that can be used to reduce donor discomfort with the changes to donor screening. CONCLUSION: In a nonrandom, purposive sample of 40 Canadian blood and plasma donors, most participants held favorable views regarding expanding the eligibility of gbMSM donors based on sexual risk behavior. Understanding donors' views on increasing eligibility may inform Canadian Blood Services and other blood operators as they develop their communications plans.

Advancing gender inclusivity for Two-Spirit, trans, nonbinary and other gender-diverse blood and plasma donors.

BACKGROUND AND OBJECTIVES: Two-Spirit, trans, nonbinary and other gender-diverse (2STGD) donors face challenges in donation. While many blood operators aim to address these challenges, to date, no empirical study with these donors has been conducted to guide their efforts. This paper reports 2STGD donors' views on a two-step approach asking donors their gender and sex assigned at birth (SAAB), and expanding gender options in donor registration. MATERIALS AND METHODS: A qualitative community-based study was conducted with 2STGD donors (n = 85) in Canada. Semi-structured, in-depth interviews were conducted from July to October 2022, audio-recorded and transcribed. Data were analysed using a thematic analytic framework. RESULTS: Participants were divided on their views of a two-step approach asking gender and SAAB. Themes underlying views in favour of this approach included the following: demonstrating validation and visibility, and treating 2STGD donors and cisgender donors alike. Themes underlying views not in favour or uncertain included potential for harm, compromising physical safety, and invalidation. All participants were in favour of expanding gender options if blood operators must know donors' gender. CONCLUSION: Results indicate that a two-step approach for all donors is not recommended unless the blood operator must know both a donor's gender and SAAB to ensure donor and/or recipient safety. Gender options should be expanded beyond binary options. Ongoing research and evidence synthesis are needed to determine how best to apply donor safety measures to nonbinary donors.

Barriers and facilitators to national guideline implementation for palliative cancer care in a Danish cross-sectoral healthcare setting: A qualitative study of healthcare professionals' experiences.

OBJECTIVE: Patients with incurable cancer should receive general palliative care according to their needs, as provided through collaboration between hospital departments, municipalities, and general practices and as outlined in national guidelines. However, the implementation of general palliative care in Denmark has been inadequate. This study aimed to investigate the healthcare professionals' (HCPs') perceptions on barriers to and facilitators of the implementation of the Danish National Guideline (NG) for general palliative care. METHODS: This descriptive, qualitative study was guided by the Consolidated Framework for Implementation Research (CFIR). Qualitative focus group and individual interviews were conducted with 23 HCPs. The interview guide, coding, analysis, and reporting of findings were developed within the CFIR framework. RESULTS: The main barriers to implementing NG were as follows: lack of knowledge about the NG, lack of an implementation plan, and insufficient communication and collaboration across sectors. Important facilitators were as follows: HCP motivation to meet palliative care needs, HCPs with special functions taking responsibility for incorporating NG into local guidelines, and the role of district nurses specialised in palliative care as opinion leaders providing security and continuity for the HCPs working in palliative care. CONCLUSIONS: To address the needs of patients with incurable cancer, greater efforts are required on implementing general palliative care. Although HCPs in our setting were motivated to improve NG implementation, financial resources and strategies are necessary to ensure sufficient knowledge uptake and accommodate identified barriers in order to translate the NG into practice.

Exploring Social Support Dynamics After Bariatric Surgery: Insights From Patients and Providers.

INTRODUCTION: Weight loss after bariatric surgery is impacted by several factors, and social support is one of them. Our objective was to characterize patient and provider perceptions about social support after bariatric surgery. METHODS: We reported a secondary analysis of qualitative data acquired from semi-structured interviews conducted from January-November 2020 with bariatric surgery patients and providers. Participants included primary care providers, health psychologists, registered dietitians, bariatric surgeons, and patients with at least 1 y of follow-up after their bariatric procedure. Interview guides were designed using a hybrid of Andersen's Behavioral Model of Health Services and Torain's Framework for Surgical Disparities. Using directed content analysis, study team members generated codes, which were categorized into themes about social support pertaining to dietary habits, physical activity, and follow-up care. RESULTS: Forty-five participants were interviewed, including 24 patients (83% female; 79% White; mean age 50.6 ± 10.7 y) and 21 providers (six primary care providers, four health psychologists, five registered dieticians, and six bariatric surgeons). We identified four themes relating to social support affecting weight loss after surgery: (1) family involvement in helping patients adjust to the bariatric diet, (2) engagement in activities with partners/friends, (3) help with transportation to appointments, and (4) life stressors experienced by patients within their social relationships. CONCLUSIONS: Continued assessment of interpersonal factors after bariatric surgery is essential for weight loss maintenance. Providers can contribute by reinforcing the facilitators of social support and making referrals that may help patients overcome barriers to social support for sustained weight loss after surgery.

Attribute Development in Health-Related Discrete Choice Experiments: A Systematic Review of Qualitative Methods and Techniques to Inform Quantitative Instruments.

OBJECTIVES: This review sought to identify the qualitative methods and techniques that researchers have used in the past decade to develop attributes and inform health-related discrete choice experiments (DCEs) surveys from a patient perspective. METHODS: The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews. An adapted appraisal tool following guidelines for reporting qualitative research for quantitative instruments and criteria for attribute development in DCEs was applied for quality assessment and data extraction. A narrative approach was used to synthesize data. This examination included consideration of issues pertaining to sampling, data collection, data analysis, attribute list reduction, wording, methodological adaptations to capture patient preferences, and testing the pre-experimental design decisions of the DCE survey. RESULTS: Of 8505 articles identified for abstract screening, 680 were included for full-text screening, 36 of which met the inclusion criteria. Practices to improve methodological robustness included pre-data collection materials to inform instruments, data collection methods specific for decision-making scenarios, purposeful selection of data analysis methods to address the research question, and participants' involvement in reducing the list of attributes. Examples of methodological adaptations for patients were noted. CONCLUSIONS: DCEs have the potential to become a mixed-method approach in which the qualitative phase informs a reduced list of attributes for a survey, serves the predesign decisions of the experiment by testing trade-offs, overlapping, understandability, face, and content validity and provides explanations of the quantitative results. Establishing guidelines for using qualitative methods for DCE attribute development may help to broadly enhance the methodological robustness of DCEs.

Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About Expectations and Experiences.

BACKGROUND: For many patients with post-COVID-19 condition (long COVID), primary care is the first point of interaction with the health care system. In principle, primary care is well situated to manage long COVID. Beyond expressions of disempowerment, however, the patient's perspective regarding the quality of long COVID care is lacking. Therefore, this study aimed to analyze the expectations and experiences of primary care patients seeking treatment for long COVID. METHODS: A phenomenological approach guided this analysis. Using purposive sampling, we conducted semistructured interviews with English-speaking, adult primary care patients describing symptoms of long COVID. We deidentified and transcribed the recorded interviews. Transcripts were analyzed using inductive qualitative content analysis. RESULTS: This article reports results from 19 interviews (53% female, mean age = 54 years). Patients expected their primary care practitioners (PCPs) to be knowledgeable about long COVID, attentive to their individual condition, and to engage in collaborative processes for treatment. Patients described 2 areas of experiences. First, interactions with clinicians were perceived as positive when clinicians were honest and validating, and negative when patients felt dismissed or discouraged. Second, patients described challenges navigating the fragmented US health care system when coordinating care, treatment and testing, and payment. CONCLUSION: Primary care patients' experiences seeking care for long COVID are incongruent with their expectations. Patients must overcome barriers at each level of the health care system and are frustrated by the constant challenges. PCPs and other health care professionals might increase congruence with expectations and experiences through listening, validating, and advocating for patients with long COVID.Annals Early Access article.

"It Can't Hurt!": Why Many Patients With Limited Life Expectancy Decide to Accept Lung Cancer Screening.

PURPOSE: Lung cancer screening (LCS) has less benefit and greater potential for iatrogenic harm among people with multiple comorbidities and limited life expectancy. Yet, such individuals are more likely to undergo screening than healthier LCS-eligible people. We sought to understand how patients with marginal LCS benefit conceptualize their health and make decisions regarding LCS. METHODS: We interviewed 40 people with multimorbidity and limited life expectancy, as determined by high Care Assessment Need scores, which predict 1-year risk of hospitalization or death. Patients were recruited from 6 Veterans Health Administration facilities after discussing LCS with their clinician. We conducted a thematic analysis using constant comparison to explore factors that influence LCS decision making. RESULTS: Patients commonly held positive beliefs about screening and perceived LCS to be noninvasive. When posed with hypothetical scenarios of limited benefit, patients emphasized the nonlongevity benefits of LCS (eg, peace of mind, planning for the future) and generally did not consider their health status or life expectancy when making decisions regarding LCS. Most patients were unaware of possible additional evaluations or treatment of screen-detected findings, but when probed further, many expressed concerns about the potential need for multiple evaluations, referrals, or invasive procedures. CONCLUSIONS: Patients in this study with multimorbidity and limited life expectancy were unaware of their greater risk of potential harm when accepting LCS. Given patient trust in clinician recommendations, it is important that clinicians engage patients with marginal LCS benefit in shared decision making, ensuring that their values of desiring more information about their health are weighed against potential harms from further evaluations.

Developing an AI Tool to Derive Social Determinants of Health for Primary Care Patients: Qualitative Findings From a Codesign Workshop.

PURPOSE: Information about social determinants of health (SDOH) is essential for primary care clinicians in the delivery of equitable, comprehensive care, as well as for program planning and resource allocation. SDOH are rarely captured consistently in clinical settings, however. Artificial intelligence (AI) could potentially fill these data gaps, but it needs to be designed collaboratively and thoughtfully. We report on a codesign process with primary care clinicians to understand how an AI tool could be developed, implemented, and used in practice. METHODS: We conducted semistructured, 50-minute workshops with a large urban family health team in Toronto, Ontario, Canada asking their feedback on a proposed AI-based tool used to derive patient SDOH from electronic health record data. An inductive thematic analysis was used to describe participants' perspectives regarding the implementation and use of the proposed tool. RESULTS: Fifteen participants contributed across 4 workshops. Most patient SDOH information was not available or was difficult to find in their electronic health record. Discussions focused on 3 areas related to the implementation and use of an AI tool to derive social data: people, process, and technology. Participants recommended starting with 1 or 2 social determinants (income and housing were suggested as priorities) and emphasized the need for adequate resources, staff, and training materials. They noted many challenges, including how to discuss the use of AI with patients and how to confirm their social needs identified by the AI tool. CONCLUSIONS: Our codesign experience provides guidance from end users on the appropriate and meaningful design and implementation of an AI-based tool for social data in primary care.

Using brief reflections to capture and evaluate end-user engagement: a case example using the COMPASS study.

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .

Alcohol Consumption Among Persons Living with HIV: Perceptions, Messages and Interventions-A Qualitative Study at an HIV Treatment Clinic in South Western Uganda.

In Sub-Saharan Africa, efficacy trials of brief interventions to reduce unhealthy drinking among persons living with HIV (PLWH) have yielded mixed results. A better understanding of the perceptions of drinking, especially by PLWH, and how drinking is talked about at HIV treatment clinics in this setting, may guide more optimal designs for future trials. We conducted a qualitative study at an HIV treatment clinic in South Western Uganda to better understand perceptions of drinking, how drinking is talked about, and perceptions of interventions, especially a protocolled screening and brief intervention (SBI) for unhealthy drinking among PLWH. We conducted in-depth interviews with 17 PLWH who engaged in unhealthy drinking and 6 health workers, and one focus group discussion with 3 community advisory-board members. We performed manual preliminary data analysis and computer-assisted detailed thematic analysis to identify emergent themes. Four themes emerged: perceptions of alcohol use in the general population; perceptions of alcohol use in PLWH; interaction between PLWH and health workers about alcohol use; perceptions of interventions for unhealthy drinking including SBI. Unhealthy drinking was seen as a problem in the general population and among those with HIV, where it was negatively perceived. Communication about drinking was done by counselors, but doctors participated in screening for unhealthy alcohol use. Messages about drinking covered reduction and abstinence. Participants expressed positive attitudes towards SBI and preference for person-delivered SBI over technological alternatives. A protocolled SBI for unhealthy alcohol use among PLWH would be well-received but successful implementation may depend on mode of delivery.

Development of a blueprint for sibling psychosocial services: A nationwide study.

BACKGROUND: Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. RESULTS: Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. CONCLUSIONS: The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.

Characterizing medical decision-making in sickle cell disease during childhood: Qualitative perspectives of caregivers.

INTRODUCTION: Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD. METHODS: Parents and primary caregivers (N = 27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. RESULTS: Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision-making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers' medical decision-making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers' decision-making varied based on disease severity, disease management experience, and time since diagnosis. DISCUSSION: Findings highlight how processes underlying caregivers' decision-making are directly influenced and informed by caregivers' lived experiences. Future work should develop provider-initiated collaborative interventions to support medical decision-making.

"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

A qualitative account of mothers of pediatric heart transplant recipients' experience at a pilot mindfulness-based retreat: insights for implementation.

OBJECTIVE: To explore participants' shared experience attending a pilot mindfulness-based retreat (MBR) intervention supporting the psychological well-being of mothers of pediatric heart transplant (HTx) recipients. METHODS: A qualitative description approach was used within a larger hybrid mixed-methods pilot study evaluating the implementation-effectiveness of a 2-day MBR tailored specifically for a pediatric HTx population. A purposive sample of mothers was recruited from a leading Canadian pediatric HTx center, and each represented a primary, female-identifying caregiver, sharing residence with a pediatric HTx recipient of at least 4 months post-transplant. Two focus groups were conducted after and 16 individual interviews 3 months after the MBR to elicit participants' in-depth experience attending the MBR. Reflexive thematic data analysis led to theme development through an iterative process with consensus among team members. RESULTS: Sixteen mothers of pediatric HTx recipients (mean patient age 9.8 years; mean time post-transplant 8.2 years) participated in the MBR held in Ontario, Canada. Qualitative findings illuminated mothers' shared experience attending the MBR, reflecting three themes that describe key intervention elements beyond those affiliated with mindfulness practice alone: "respite," "readiness," and "relationships." Findings highlight acceptability and appropriateness as distinct yet interrelated implementation outcomes. CONCLUSIONS: Elements of "respite," "readiness," and "relationships" are key components of the MBR experience that offer valuable intervention and clinical considerations related to mothers' psychological well-being. Aligning intervention acceptability and appropriateness through tailored strategies may aid implementation. Future research considering maternal readiness relative to support intervention participation is warranted.

Perceived acceptability and appropriateness of a web-based program targeting risk for anxiety in young children and their parents.

OBJECTIVE: This mixed-methods study examined perceived acceptability and appropriateness of a novel digital mental health program targeting anxiety risk (i.e., perfectionism or error sensitivity) in 5-to-7-year-old children and their parents. METHODS: Parent-child dyads participated in a modular, web-based cognitive-behavioral program targeting negative overreactions to making mistakes. The program, "Making Mistakes", consisted of a 6-month series of short video clips, journaling activities, and weekly reminders, and modules were delivered to caregivers and children separately. 86 dyads completed self-report measures, 18 of whom participated in semi-structured interviews, following completion of the primary program module. A standard thematic analysis was used to elucidate themes from the parent and child interview content. RESULTS: Our quantitative and qualitative results were generally aligned. Children and parents viewed the novel digital mental health program as acceptable and appropriate, favoring the cognitive behavioral strategies such as modeling positive reactions to mistakes, responding positively to child mistakes, and emphasizing effort over outcome. Participants also provided helpful feedback related to program content, delivery, and engagement, as well as suggestions to enhance the program. CONCLUSIONS: Findings have implications for design and content features of parent-based and dyad-based programs, as well as digital mental health programs focused on reducing anxiety risk.