Adolescent-Preferred financial incentives to promote type 1 diabetes Self-Care: A discrete choice experiment.

AIMS: This study aimed to quantify preferences for the characteristics of a financial incentives program that would motivate adolescent engagement in type 1 diabetes (T1D) self-care. METHOD: We performed a discrete choice experiment with 12-18 year-olds with T1D from two pediatric hospital endocrinology clinics (n = 317). We identified key attributes of incentives: (1) monthly value of the reward, (2) payment structure, and (3) difficulty of incentivized behaviors. In twelve choice questions, adolescents chose the incentive option from a pair of profiles that was more likely to motivate them to increase adherence to recommended self-care. Options presented were tailored to adolescents' T1D technology use and perceived difficulty of completing each behavior. We analyzed data using a conditional logit model. RESULTS: The value of the reward accounted for 60.8% of preferences. Adolescents were willing to accept lower value rewards when incentive payments used positive vs. negative reinforcement (-$10.88 (95% CI: -$12.60, -9.24)) and preferred higher incentives for performing hard vs. easier behaviors (+$14.92 (95% CI: +$12.66, +$17.28)). CONCLUSIONS: Stated preferences can inform intervention design. Future research will evaluate the external validity of the discrete choice experiment-informed intervention design by assessing adolescent health and behavioral outcomes in a randomized controlled trial.

Use of Financial Incentives to Promote Adolescent Type 1 Diabetes Self-management: A Pilot Randomized Controlled Trial.

OBJECTIVE: To evaluate whether financial incentives lead to improvement in self-management behaviors and glycemia in adolescents with type 1 diabetes (T1D). RESEARCH DESIGN AND METHODS: Adolescents (12- to 18-year-olds) with T1D selected incentivized self-management behavior and clinical outcome goals in a 3-treatment (gain frame, loss frame, no incentives) crossover randomized controlled trial. Participants could earn up to $180 in each 12-week incentive treatment arm. RESULTS: Compared with a mean 41% behavioral goal attainment within the nonfinancial incentives arm, mean behavioral goal attainment under gain and loss frames was 50% (P < 0.01) and 45% (P < 0.01), respectively. Mean time in range (TIR) in gain frame and loss frame arms was higher 43% (P < 0.01) and 42% (P < 0.01), respectively, compared with when not receiving financial incentives (38%). There was no difference in A1C among the three arms. CONCLUSIONS: Financial incentives can improve diabetes self-management behaviors and TIR in adolescents with T1D in the short-term.

Mobile App Promoting Resilience in Stress Management for Adolescents and Young Adults With Cancer: Protocol for a Pilot Randomized Controlled Trial.

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers. OBJECTIVE: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM). Promoting Resilience in Stress Management is an evidence-based intervention developed in collaboration with AYAs, based on stress and coping theory, resilience theory, and evidence-based coping strategies. We hypothesized that mPRISM would be feasible, acceptable, and appropriate. METHODS: This is a parallel, 2-arm, single-site pilot RCT with a waitlist control design. The study will recruit 80 AYAs with cancer from a clinic. Eligible AYAs are aged 12 to 25 years, within 12 months of a new cancer diagnosis, receiving chemotherapy or radiation therapy, speak, read, or write in English, and are cognitively able to participate in study procedures. Recruitment by clinical research coordinators will occur remotely by phone, video, or text. Participants will be randomized to psychosocial usual care (UC) alone or UC plus mPRISM for an 8-week intervention period, and will remain unblinded to study condition. Enrolled participants will complete surveys at baseline before randomization, 8 weeks, and 3-month follow-up. Using a waitlist design, the UC arm will receive mPRISM upon completion of 3-month follow-up surveys. Those in the UC arm will complete 2 additional measurement points at immediate posttreatment and 3 months later. The primary outcomes of interest are feasibility, defined as ≥60% enrollment and ≥70% retention (ie, percentage of participants who completed the study), and "feasibility, acceptability, and appropriateness" as defined by cut-off scores ≥4/5 on 3 brief validated implementation outcome measures (feasibility of implementation measure, acceptability of intervention measure [AIM], intervention appropriateness measure [IAM]). We will apply top-box scoring for the implementation measures. Exploratory outcomes of interest include patient-reported health-related quality of life, resilience, distress, anxiety, depression, pain, and sleep. We will conduct an intention-to-treat analysis to compare the outcomes of the mPRISM arm versus the control arm with covariate-adjusted regression models. We will summarize individual digital usage metrics using descriptive statistics. RESULTS: Since September 2023, we have enrolled 20 participants and recruitment is ongoing. CONCLUSIONS: Although our previous work suggests AYAs with cancer are interested in mHealth psychosocial interventions, such interventions have not yet been sufficiently evaluated or implemented among AYA oncology patients. mPRISM may serve as a potential mHealth intervention to fill this gap. In this study, we will test the feasibility, acceptability, and preliminary efficacy of mPRISM. This work will inform future larger-scale RCTs powered for efficacy outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT05842902; https://clinicaltrials.gov/study/NCT05842902. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57950.

Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis.

PURPOSE: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer. METHODS: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all "source of support" and "type of support" codes. We assigned a global "sufficiency of support code" to each AYA. RESULTS: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having "mixed support" and described a lack of support in some domains. CONCLUSION: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.

Rationale and design of a randomized controlled clinical trial of a resilience-building intervention in adults with congenital heart disease.

BACKGROUND: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population. METHODS: We designed a phase II randomized controlled clinical trial of patients with moderate or complex ACHD, physiological stages C or D. Enrolled participants will be randomized to receive PRISM or usual care. PRISM is a manualized, skills-based behavioral intervention comprised of four one-on-one sessions targeting resilience resources (stress-management, goal-setting, cognitive reframing, meaning making), an optional session on advance care planning, and a facilitated family meeting. Participants in both groups will complete study questionnaires at enrollment and 3-months later. The primary aim is to describe feasibility, namely the proportions of patients who a) enroll in the study among those eligible, and b) complete the PRISM intervention among those randomized to that arm. We will also evaluate PRISM's efficacy by using linear regression models to compare changes in mean resilience scores between assigned groups. In exploratory analyses, we will evaluate effects on QOL, psychological distress, perceived competence for health care management, and comfort with advance care planning. DISCUSSION: This study will provide rigorous evidence to determine the feasibility and efficacy of a brief intervention to promote resilience and psychosocial health in ACHD. Findings may guide the development of a future multi-site effectiveness study. CLINICAL TRIAL REGISTRATION: NCT04738474.

Resilience and distress among adolescents and young adults receiving hematopoietic cell transplantation: The Promoting Resilience in Stress Management randomized trial.

BACKGROUND: Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant. METHODS: This multisite, parallel, randomized trial was conducted from April 2019 to March 2023. Eligible AYAs were aged 12-24 years, English speaking, and within 1 month of HCT for cancer or cancer predisposition syndrome. They were assigned 1:1 to PRISM (a brief, skills-based intervention targeting "resilience resources" [stress management, goal setting, cognitive reframing, and meaning making]) or usual care (UC). Outcomes included total symptoms of depression and anxiety (Hospital Anxiety and Depression Scale; primary outcome), hope (Snyder Hope Scale), resilience (10-item Connor-Davidson Resilience Scale), and health-related quality of life (HRQOL; Pediatric Quality of Life Inventory Cancer Module). Analyses leveraged multivariable linear regressions; exploratory analyses assessed the influence of baseline depression or anxiety. RESULTS: Of 94 enrolled and randomized AYAs, the mean age was 16.7 years (SD, 4.2); 43 (46%) were female, 56 (60%) were non-Hispanic White, 22 (23%) were Hispanic, and nine (10%) were Black. Most (77%) had leukemia. Of n = 50 randomized to PRISM and n = 44 to UC, 37 (74%) and 33 (73%) completed all study procedures, respectively. In intention-to-treat analyses, PRISM did not affect 6-month depression and anxiety (ß = -1.1; 95% CI, -3.7 to 1.5), hope (ß = 0.83; 95% CI, -3.3 to 4.9), resilience (ß = -0.01; 95% CI, -3.0 to 3.0), or HRQOL (ß = 1.5; 95% CI, -4.7 to 7.9). Among AYAs with preexisting anxiety or depression, PRISM recipients reported greater 6-month improvements in hope (score change, +3.71; SD, 6.9) versus UC recipients (score change, -2.76; SD, 6.5) (p = .04). CONCLUSIONS: Resilience coaching did not influence outcomes in this sample. Exploratory findings suggest it may be more effective when directed toward those with concurrent distress.

Key Psychosocial Health Outcomes and Association With Resilience Among Patients With Adult Congenital Heart Disease.

BACKGROUND: Adult congenital heart disease (ACHD) can negatively impact quality of life (QOL). Strengthening resilience may improve this and other psychosocial outcomes important for living a meaningful life. OBJECTIVES: The purpose of this study was to describe resilience and key psychosocial health outcomes in ACHD and evaluate the associations between resilience and these outcomes. METHODS: We conducted a prospective cohort study of outpatients with moderate or complex ACHD between May 2021 and June 2022. Participants completed surveys at baseline and 3 months, evaluating resilience (Connor-Davidson Resilience Scale-10), health-related QOL (EQ5D-3L, linear analog scale), health status (Euroqol visual analog scale), self-competence (Perceived Competence Scale), and psychological symptom burden (Hospital Anxiety and Depression Scale) and distress (Kessler-6). RESULTS: The mean participant age (N = 138) was 41 ± 14 years, 51% were female, and 83% self-identified as non-Hispanic White. ACHD was moderate for 75%; 57% were physiologic class B. Mean baseline resilience score (Connor-Davidson Resilience Scale-10) was 29.20 ± 7.54. Participants had relatively good health-related QOL, health status, and self-competence, and low psychological symptom burden and distress. Higher baseline resilience was associated with better values of all outcomes at 3 months (eg, 1 point higher resilience was associated with 0.92 higher linear analog scale; 95% CI: 0.52-1.32) with or without adjustment for demographics. After further adjusting for the baseline psychosocial measure, only the association between resilience and QOL measures at 3 months remained statistically significant. CONCLUSIONS: Resilience is positively associated with health-related QOL for outpatients with moderate or complex ACHD, though relationships are small in magnitude. Study findings can guide the application of resilience-building interventions to the ACHD population.

Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU.

BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors. METHODS: This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. RESULTS: Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child. CONCLUSIONS: Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective: To examine sources of and changes in stress among parents of children with SNI in the PICU. To compare stressors with "good parent" attributes that describe duties parents aim to uphold for their child. Design/Setting/Subjects: Prospective mixed-methods cohort study at a single U.S. children's hospital. Participants included English-speaking parents/legal guardians of a child with SNI with an expected length of stay >1 week and life expectancy >4 weeks. Measurements: Ten-point stress scale administered at PICU admission and discharge with open-ended response items. A subset of parents completed 1:1 semistructured interviews. Data were integrated to examine differences among participants whose stress increased, stayed the same, or decreased, and themes were compared with "good parent" attributes. Results: Twenty-five parents/legal guardians completed the surveys; 15 completed the interviews. Children were a median of 7 years old (interquartile range [IQR] 4, 9; range 1-21) and had a median PICU length of stay of 10 days (IQR 7, 15; range 3-62). Twenty percent (n = 5) of parents were fathers, and 36% (n = 9) had a minority racial/ethnic background. Stress was moderate at admission (mean 6.8, standard deviation [SD] ±1.7) and discharge (mean 6, SD ±2); 32% (n = 8) reported stress trajectories that stayed the same or increased. Major themes included uncertainty, advocacy, and vulnerability and related closely to "good parent" attributes. Conclusion: Stress among parents of children with SNI related to uncertainty, advocacy, and vulnerability and suggested tensions with "good parent" attributes.

Online Educational Resources for Youth Living With Type 1 Diabetes Transitioning to Adult Care: An Environmental Scan of Canadian Content.

OBJECTIVES: There are many educational resources for adolescents and young adults living with type 1 diabetes; however, it is unknown whether they address the breadth of topics related to transition to adult care. Our aim in this study was to collect educational resources relevant to Canadian youth and assess their quality and comprehensiveness in addressing the knowledge necessary for youth to prepare for interdependent management of their diabetes. METHODS: We conducted an environmental scan, a systematic assessment and analysis, of online education resources in English and French relevant to Canadian youth living with type 1 diabetes. Resources were screened using an open education resource evaluation grid and relevant resources were mapped to the Readiness for Emerging Adults with Diabetes Diagnosed in Youth, a validated diabetes transition readiness assessment tool. RESULTS: From 44 different sources, 1,245 resources were identified and, of these, 760 were retained for analysis. The majority were webpages (50.1%) and downloadable PDFs (42.4%), and 12.1% were interactive. Most resources covered Diabetes Knowledge (46.0%), Health Behaviour (23.8%), Insulin and Insulin Pump Management (11.8% and 8.6%, respectively), and Health-care System Navigation (9.7%). Topic areas with the fewest resources were disability accommodations (n=5), sexual health/function (n=4), and locating trustworthy diabetes resources (n=3). CONCLUSIONS: There are many resources available for those living with type 1 diabetes preparing to transition to adult care, with the majority pertaining to diabetes knowledge and the least for navigation of the health system. Few resources were available on the topics of substance use, sexual health, and reproductive health. An interactive presentation of these resources, as well as a central repository to house these resources, would improve access for youth and diabetes care providers during transition preparation.

Definitions of resilience and resilience resource use as described by adults with congenital heart disease.

Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients' psychosocial health. Objective: We aimed to describe patients' resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22-44); 52% identified as female and 72% non-Hispanic white. Participants' anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term "resilience," all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.

Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment.

CONTEXT: Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences. OBJECTIVE: To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions. METHODS: This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated. RESULTS: Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents. CONCLUSION: Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.

Protocol for the promoting resilience in stress management (PRISM) intervention: a multi-site randomized controlled trial for adolescents and young adults with advanced cancer.

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at high risk of poor psychosocial outcomes, and evidence-based interventions designed to meet their psychosocial and communication needs are lacking. The main objective of this project is to test the efficacy of a new adaptation of the Promoting Resilience in Stress Management intervention for AYAs with Advanced Cancer (PRISM-AC). METHODS/DESIGN: The PRISM-AC trial is a 2-arm, parallel, non-blinded, multisite, randomized controlled trial. 144 participants with advanced cancer will be enrolled and randomized to either usual, non-directive, supportive care without PRISM-AC ("control" arm) or with PRISM-AC ("experimental" arm). PRISM is a manualized, skills-based training program comprised of four 30-60 min, one-on-one sessions targeting AYA-endorsed resilience resources (stress-management, goal-setting, cognitive-reframing, and meaning-making). It also includes a facilitated family meeting and a fully equipped smartphone app. The current adaptation includes an embedded advance care planning module. English- or Spanish-speaking individuals 12-24 years old with advanced cancer (defined as progressive, recurrent, or refractory disease, or any diagnosis associated with < 50% survival) receiving care at 4 academic medical centers are eligible. Patients' caregivers are also eligible to participate in this study if they are able to speak and read English or Spanish, and are cognitively and physically able to participate. Participants in all groups complete surveys querying patient-reported outcomes at the time of enrollment and 3-, 6-, 9-, and 12-months post-enrollment. The primary outcome of interest is patient-reported health-related quality of life (HRQOL) and secondary outcomes of interest include patient anxiety, depression, resilience, hope and symptom burden, parent/caregiver anxiety, depression and health-related quality of life, and family palliative care activation. We will conduct intention-to-treat analysis to compare the group means of primary and secondary outcomes between PRISM-AC arm and control arm with regression models. DISCUSSION: This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience and reduce distress among AYAs with advanced cancer. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03668223, September 12, 2018.

Protocol for The Promoting Resilience in Stress Management (PRISM) Intervention: a multi-site randomized controlled trial for adolescents and young adults with advanced cancer.

Background Adolescents and young adults (AYAs) with cancer are at high risk of poor psychosocial outcomes, and evidence-based interventions designed to meet their psychosocial and communication needs are lacking. The main objective of this project is to test the efficacy of a new adaptation of the Promoting Resilience in Stress Management intervention for AYAs with Advanced Cancer (PRISM-AC). Methods/design: The PRISM-AC trial is a 2-arm, parallel, non-blinded, multisite, randomized controlled trial. 144 participants with advanced cancer will be enrolled and randomized to either usual, non-directive, supportive care without PRISM-AC ("control" arm) or with PRISM-AC ("experimental" arm). PRISM is a manualized, skills-based training program comprised of four 30-60 minute, one-on-one sessions targeting AYA-endorsed resilience resources (stress-management, goal-setting, cognitive-reframing, and meaning-making). It also includes a facilitated family meeting and a fully equipped smartphone app. The current adaptation includes an embedded advance care planning module. English- or Spanish-speaking individuals 12-24 years old with advanced cancer (defined as progressive, recurrent, or refractory disease, or any diagnosis associated with < 50% survival) receiving care at 4 academic medical centers are eligible. Patients' caregivers are also eligible to participate in this study if they are able to speak and read English or Spanish, and are cognitively and physically able to participate. Participants in all groups complete surveys querying patient-reported outcomes at the time of enrollment and 3-, 6-, 9-, and 12-months post-enrollment. The primary outcome of interest is patient-reported health-related quality of life (HRQOL) and secondary outcomes of interest include patient anxiety, depression, resilience, hope and symptom burden, parent/caregiver anxiety, depression and health-related quality of life, and family palliative care activation. We will conduct intention-to-treat analysis to compare the group means of primary and secondary outcomes between PRISM-AC arm and control arm with regression models. Discussion This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience and reduce distress among AYAs with advanced cancer. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. Trial registration: ClinicalTrials.gov Identifier NCT03668223, September 12, 2018.

Feasibility and Acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) Intervention for Caregivers of Children with Craniofacial Conditions.

OBJECTIVES: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. DESIGN: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. PARTICIPANTS: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. INTERVENTION: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart. MAIN OUTCOME MEASURES: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. RESULTS: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. CONCLUSIONS: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation.

Protocol for the Promoting Resilience in Stress Management (PRISM) intervention: A multi-site randomized controlled trial for adolescents with type 1 diabetes.

BACKGROUND: Adolescents with type 1 diabetes (T1D) are at high risk for elevated diabetes distress, which greatly impacts diabetes management, glycemic outcomes and overall quality of life. Developing protective skills and "resilience resources" to navigate adversity and manage diabetes distress has high potential to help adolescents with T1D achieve optimal behavioral, psychological, and health outcomes. The "Promoting Resilience in Stress Management" (PRISM) program is a manualized, brief, skills-based intervention delivered over 6 months via two 45-60 min one-on-one sessions and a family meeting with a PRISM coach, and supplemented by booster calls and a digital app. This trial (PRISM versus usual care)is designed to:: (1) assess PRISM's impact on glycemic outcomes and diabetes distress among adolescents with T1D, and (2) explor PRISM's impact on resilience, self-reported adherence, and quality of life. METHODS: We describe the protocol for a multi-site randomized controlled trial designed for adolescents ages 13-18 with elevated diabetes distress. The primary trial outcomes are glycemic outcomes and diabetes distress 6 months post-randomization. Secondary outcomes include resilience, self-reported adherence, and QOL 6 months post-randomization. Our hypothesis is that youth in the PRISM group will demonstrate better glycemic outcomes and improved diabetes distress, adherence, resilience, and QOL compared to usual care. CONCLUSIONS: This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience among adolescents with T1D and elevated diabetes distress. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. TRIAL REGISTRATION: Prospectively registered at Clinicaltrials.gov (NCT03847194).

Seeking virtual support: Digital technology use in adolescent and young adults with advanced cancer.

BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.

Assessment of Resilience Training for Hospital Employees in the Era of COVID-19.

Importance: Health care workers face serious mental health challenges as a result of ongoing work stress. The COVID-19 pandemic exacerbated that stress, resulting in high rates of anxiety, depression, and burnout. To date, few evidence-based programs targeting mental health outcomes in health care workers have been described. Objective: To assess the feasibility, acceptability, and preliminary outcomes of a skills-based coaching program designed to reduce stress and build resilience. Design, Setting, and Participants: A pilot cohort study was conducted between September 2020 and April 2021 using preprogram and postprogram assessments and a mixed-methods analysis. Duration of follow-up was 7 weeks. The coaching program was delivered via video conferencing. Participants were health care workers and staff from a large urban health system. Intervention: The Promoting Resilience in Stress Management (PRISM) program, a manualized, skills-based coaching program originally developed for adolescents and young adults with serious/chronic illness, was adapted to support health care workers and staff ("PRISM at Work"). It included 6 weekly 1-hour group sessions. Main Outcomes and Measures: Feasibility was defined a priori as 70% completion rates. Acceptability was defined quantitatively (satisfaction scores) and qualitatively (open-ended questions regarding experience with program). Preliminary outcomes were assessed with preprogram and post program assessments of self-reported resilience, stress, anxiety, and burnout using validated instruments. Descriptive statistics summarized demographic variables and feasibility and acceptability. Linear mixed effects regression models examined preliminary outcomes, controlling for relevant covariates. Results: A total of 153 participants (median [SD] age, 40.6 [10.1] years; 142 [92%] were female; 128 [84%] identified as having White race; 81 [53%] were in patient-facing roles) enrolled. Of the 132 health care workers who provided follow-up surveys, 120 (91%) had completed the program, and 116 (88%) reported being satisfied. Answers to open-ended questions suggested that participants wanted more PRISM either with longer or additional sessions. Participant-reported resilience (ß = 1.74; 95% CI, 1.00-2.48), stress (ß = -2.40; 95% CI, -3.28 to -1.51), anxiety (ß = -2.04; 95% CI, -2.74 to -1.34), and burnout-exhaustion (ß = -0.37; 95% CI, -0.56 to -0.18) improved after the program. Conclusions and Relevance: Results of this study suggest that PRISM at Work may have utility for health care workers and staff in that the program was found to be feasible, acceptable, and associated with improved outcomes.