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Diabetes distress in urban Black youth with type 1 diabetes and their caregivers: associations with glycemic control, depression, and health behaviors. 患有 1 型糖尿病的城市黑人青少年及其照顾者的糖尿病困扰:与血糖控制、抑郁和健康行为的关系。
IF 2.7 3区 心理学 Q2 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-06-13 DOI: 10.1093/jpepsy/jsad096
Meredyth Evans, Deborah A Ellis, Anthony T Vesco, Marissa A Feldman, Jill Weissberg-Benchell, April Idalski Carcone, Jennifer Miller, Claudia Boucher-Berry, Colleen Buggs-Saxton, Bernard Degnan, Bassem Dekelbab, Tina Drossos

Objectives: Adolescents with type 1 diabetes (T1D) and their caregivers endorse high diabetes distress (DD). Limited studies have documented the impact of DD on Black youth. The aims of the present study were to (1) describe DD among a sample of Black adolescents with T1D and their caregivers, (2) compare their DD levels with published normative samples, and (3) determine how DD relates to glycemic outcomes, diabetes self-management, parental monitoring of diabetes, and youth depressive symptoms.

Methods: Baseline data from a multicenter clinical trial were used. Participants (N = 155) were recruited from 7 Midwestern pediatric diabetes clinics. Hemoglobin A1c (HbA1c) and measures of DD, parental monitoring of diabetes care, youth depression and diabetes management behaviors were obtained. The sample was split into (1) adolescents (ages 13-14; N = 95) and (2) preadolescents (ages 10-12; N = 60). Analyses utilized Cohen's d effect sizes, Pearson correlations, t-tests, and multiple regression.

Results: DD levels in youth and caregivers were high, with 45%-58% exceeding either clinical cutoff scores or validation study sample means. Higher DD in youth and caregivers was associated with higher HbA1c, lower diabetes self-management, and elevated depressive symptoms, but not with parental monitoring of diabetes management.

Conclusions: Screening for DD in Black youth with T1D and caregivers is recommended, as are culturally informed interventions that can reduce distress levels and lead to improved health outcomes. More research is needed on how systemic inequities contribute to higher DD in Black youth and the strategies/policy changes needed to reduce these inequities.

目的:患有 1 型糖尿病 (T1D) 的青少年及其照顾者对糖尿病困扰 (DD) 的认可度很高。有关 DD 对黑人青少年影响的研究记录有限。本研究的目的是:(1) 描述 T1D 黑人青少年及其照顾者的糖尿病困扰;(2) 将他们的糖尿病困扰水平与已发表的标准样本进行比较;(3) 确定糖尿病困扰与血糖结果、糖尿病自我管理、父母对糖尿病的监控以及青少年抑郁症状之间的关系:方法:采用一项多中心临床试验的基线数据。参与者(N = 155)是从美国中西部 7 家儿科糖尿病诊所招募的。研究人员采集了血红蛋白 A1c (HbA1c)、DD 测量值、父母对糖尿病护理的监控、青少年抑郁症和糖尿病管理行为。样本分为(1)青少年(13-14 岁;95 人)和(2)学龄前儿童(10-12 岁;60 人)。分析采用了 Cohen's d 效果大小、皮尔逊相关性、t 检验和多元回归等方法:结果:青少年和照护者的DD水平很高,45%-58%的人超过了临床临界值或验证研究样本平均值。青少年和护理人员的DD水平较高与HbA1c升高、糖尿病自我管理能力降低和抑郁症状升高有关,但与父母对糖尿病管理的监督无关:结论:建议对患有 T1D 的黑人青少年和照顾者进行 DD 筛查,并采取有文化背景的干预措施,这些措施可降低困扰程度并改善健康状况。还需要开展更多的研究,以了解系统性不平等是如何导致黑人青少年糖尿病发病率升高的,以及减少这些不平等所需的策略/政策变化。
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引用次数: 0
A systematic review and meta-analysis of pediatric integrated primary care for the prevention and treatment of physical and behavioral health conditions. 儿科综合初级保健对预防和治疗身体和行为健康状况的系统回顾和荟萃分析。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-06-12 DOI: 10.1093/jpepsy/jsae038
Cody A Hostutler, Jeffrey D Shahidullah, Jennifer A Mautone, Tiffany M Rybak, Chimereodo Okoroji, Teryn Bruni, Kevin G Stephenson, Leah Vance Utset, Kurt A Freeman, Leah LaLonde, Andrew R Riley

Objective: To evaluate the effects of behavioral health interventions delivered within pediatric integrated primary care models on clinical outcomes.

Methods: We searched Medline, EMBASE, CENTRAL, PsycINFO, and SCOPUS for studies published from January 1, 1998, to September 20, 2023. We included studies that evaluated onsite behavioral health integration in pediatric primary care using a comparator condition (usual, enhanced usual care, or waitlist). Outcome data on symptom change, impairment/quality of life, health indicator, and behavior change were extracted using Covidence software. The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guideline was followed Risk of bias analysis was conducted using the Cochrane Risk of Bias tool. We used multilevel meta-analysis to synthesize multiple outcomes nested within studies. Open Science Foundation pre-registration: #10.17605/OSF.IO/WV7XP.

Results: In total, 33 papers representing 27 studies involving 6,879 children and caregivers were included. Twenty-four studies were randomized controlled trials and three were quasi-experimental designs. Seventeen papers reported on treatment trials and 16 reported on prevention trials. We found a small overall effect size (SMD = 0.19, 95% confidence interval [0.11, 0.27]) supporting the superiority of integrated primary care to usual or enhanced usual care. Moderator analyses suggested similar effectiveness between co-located and integrated models and no statistically significant differences were found between treatment and prevention trials.

Conclusions: Results suggest that integrated primary care is superior to usual and enhanced usual care at improving behavior, quality of life, and symptoms. Integrated primary care research needs improved standards for reporting to promote better synthesis and understanding of the literature.

目的评估儿科综合初级保健模式中提供的行为健康干预对临床结果的影响:我们检索了 Medline、EMBASE、CENTRAL、PsycINFO 和 SCOPUS 中从 1998 年 1 月 1 日至 2023 年 9 月 20 日发表的研究。我们纳入了使用比较条件(常规护理、增强型常规护理或候补名单)对儿科初级护理中的现场行为健康整合进行评估的研究。我们使用 Covidence 软件提取了有关症状变化、功能障碍/生活质量、健康指标和行为变化的结果数据。偏倚风险分析使用 Cochrane 偏倚风险工具进行。我们使用多层次荟萃分析法对研究中嵌套的多个结果进行综合分析。开放科学基金会预注册:#10.17605/OSF.IO/WV7XP.结果:共纳入 33 篇论文,代表 27 项研究,涉及 6879 名儿童和护理人员。其中 24 项研究为随机对照试验,3 项为准实验设计。17篇论文报告了治疗试验,16篇报告了预防试验。我们发现,综合初级护理优于常规护理或增强型常规护理的总体效应较小(SMD = 0.19,95% 置信区间 [0.11, 0.27])。主持人分析表明,同地模式和综合模式之间的效果相似,治疗和预防试验之间没有统计学意义上的显著差异:结论:研究结果表明,在改善行为、生活质量和症状方面,综合初级护理优于常规护理和强化常规护理。综合初级保健研究需要改进报告标准,以促进更好地综合和理解文献。
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引用次数: 0
Perceived acceptability and appropriateness of a web-based program targeting risk for anxiety in young children and their parents. 针对幼儿及其父母焦虑风险的网络程序的可接受性和适宜性。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-06-10 DOI: 10.1093/jpepsy/jsae040
Isaac A Mirzadegan, Ericka M Lewis, Sally L Cole, Alexandria Meyer

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.

研究目的这项混合方法研究考察了5至7岁儿童及其父母对针对焦虑风险(即完美主义或错误敏感性)的新型数字心理健康项目的可接受性和适当性:亲子二人组参加了一个模块化、基于网络的认知行为项目,该项目针对的是犯错后的消极过度反应。该项目名为 "犯错",包括一系列为期 6 个月的视频短片、日记活动和每周提醒,模块分别提供给照顾者和儿童。在完成主要项目模块后,有 86 个家庭完成了自我报告测量,其中 18 个家庭参加了半结构化访谈。我们采用了标准的主题分析法来阐明父母和儿童访谈内容的主题:我们的定量和定性结果基本一致。儿童和家长都认为这个新颖的数字心理健康项目是可以接受的,也是合适的,他们更倾向于认知行为策略,如示范对错误的积极反应、对儿童的错误做出积极回应,以及强调努力而非结果。参与者还提供了与程序内容、交付和参与度相关的有益反馈,以及改进程序的建议:研究结果对以家长为基础、以双亲为基础的项目以及以降低焦虑风险为重点的数字心理健康项目的设计和内容特点具有借鉴意义。
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引用次数: 0
Commentary: Increasing generalizability of parent psychosocial functioning within the context of pediatric chronic pain. 评论:在儿科慢性疼痛的背景下提高家长社会心理功能的通用性。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-16 DOI: 10.1093/jpepsy/jsae019
Brittany Ricart, Jocelyn Smith Carter
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引用次数: 0
Quality of life of caregivers at the end of their child's pediatric cancer treatment: cancer-specific worry and material hardship. 儿童癌症治疗结束后照顾者的生活质量:癌症特有的担忧和物质困难。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-16 DOI: 10.1093/jpepsy/jsae014
Liana R Galtieri, Megan N Perez, Lamia P Barakat

Objective: Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being. Using a psycho-oncology framework, this study aimed to understand the cumulative burden of household material hardship and cancer-related factors on caregiver QOL at the end of treatment.

Methods: Caregivers (N = 143) of children (Mage=10.51 years) within 1 year of ending active cancer treatment completed self-report questionnaires assessing their QOL, cancer-specific worry, and material hardship (e.g., housing, insurance). Total months of active cancer treatment were extracted from the medical record. Hierarchical linear regression was used to test the relative effects of length of treatment, material hardship, and cancer-specific worry on caregiver QOL.

Results: Cancer-specific worry was significantly associated with and accounted for significant variance in caregiver QOL, above and beyond the length of treatment and material hardship. Caregivers who endorsed more cancer-specific worry had poorer QOL. Material hardship was also significantly associated with caregivers' QOL, but length of treatment was not.

Conclusions: Caregivers with sufficient resources and less worry about cancer have higher QOL. Findings highlight the importance of end-of-treatment screening of caregivers' subjective cancer-specific worry in addition to material hardship, irrespective of their cancer-related stressors, for ongoing psychosocial support.

目的:新近的研究表明,由于角色和责任的转变,完成小儿癌症治疗对护理者来说是一项挑战。在儿科癌症治疗期间,护理者较低的生活质量(QOL)与癌症相关变量、较高的癌症护理压力和较多的家庭物质困难有关。护理人员在治疗结束后的生活质量尚未得到充分研究,但这对儿童和家庭的福祉具有重要影响。本研究采用肿瘤心理学框架,旨在了解治疗结束时家庭物质困难和癌症相关因素对照顾者QOL造成的累积负担:儿童(年龄=10.51岁)的照顾者(N = 143)在结束积极癌症治疗后的一年内填写了自我报告问卷,评估他们的QOL、癌症特异性担忧和物质困难(如住房、保险)。从医疗记录中提取了癌症治疗的总月数。采用层次线性回归法检验治疗时间、物质困难和癌症特异性担忧对照顾者QOL的相对影响:结果:癌症特异性担忧与照顾者的 QOL 有显著相关性,并且在照顾者的 QOL 中占显著差异,超过了治疗时间和物质困难的影响。对癌症特异性担忧较多的护理者的 QOL 较差。物质困难也与照顾者的 QOL 有很大关系,但治疗时间的长短与照顾者的 QOL 无关:结论:资源充足、对癌症担忧较少的护理者的 QOL 较高。研究结果凸显了在治疗末期筛查护理人员的主观癌症特异性担忧以及物质困难的重要性,无论他们是否面临与癌症相关的压力,这对持续的心理支持都非常重要。
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引用次数: 0
Understanding health behaviors that modify the risk for obesity in ADHD. 了解改变多动症肥胖风险的健康行为。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-16 DOI: 10.1093/jpepsy/jsae018
Delanie K Roberts, Dustin E Sarver, Annah R Cash, Benjamin H Walker, Crystal S Lim

Objective: Research provides support for the associated risk of inadequate sleep duration, limited physical activity, and excessive media use in attention-deficit/hyperactivity disorder (ADHD) and obesity. The present study aims to (1) examine the association between ADHD and overweight or obese status (OW/OB); (2) comprehensively examine sleep duration, physical activity, and media use as potential moderators of OW/OB; and (3) examine the moderating effects of these health behaviors cross-sectionally by comparing medicated youth with ADHD, unmedicated youth with ADHD, and youth without ADHD.

Methods: Data were acquired from the 2018 and 2019 National Survey of Children's Health, a nationally representative survey of caregivers conducted across the United States. The current study used data for youth 11-17 years old with a final sample size of 26,644. Hours of sleep, physical activity, and media use per day were dichotomized based on national recommendation guidelines for each health behavior (i.e., either meeting or not meeting guidelines).

Results: The OW/OB prevalence rate was 7% greater among unmedicated youth with ADHD than among medicated youth with ADHD. Medicated youth with ADHD and peers without ADHD had similar OW/OB rates. Among medicated youth with ADHD, physical activity, sleep duration, and media use did not contribute to OW/OB risk after controlling for family poverty level. However, among unmedicated youth with ADHD, meeting sleep duration guidelines was linked to a lower OW/OB risk.

Conclusion: Overall, findings suggest that clinical providers and parents may wish to prioritize improved sleep duration in the management of OW/OB risk in youth with ADHD.

目的:研究证实,睡眠时间不足、体育活动有限和过度使用媒体与注意力缺陷/多动障碍(ADHD)和肥胖的相关风险有关。本研究旨在:(1)研究多动症与超重或肥胖状态(OW/OB)之间的关联;(2)全面研究睡眠时间、体育锻炼和媒体使用作为 OW/OB 的潜在调节因素;(3)通过比较有多动症的服药青少年、无多动症的服药青少年和无多动症的青少年,横向研究这些健康行为的调节作用:数据来自 2018 年和 2019 年全国儿童健康调查(National Survey of Children's Health),这是一项在全美范围内对照顾者进行的具有全国代表性的调查。本次研究使用了 11-17 岁青少年的数据,最终样本量为 26644 个。根据国家对每种健康行为的建议指南,对每天的睡眠时间、体育活动时间和媒体使用时间进行了二分法(即符合或不符合指南):结果发现:未接受药物治疗的多动症青少年的OW/OB发生率比接受药物治疗的多动症青少年高7%。接受药物治疗的多动症青少年与未接受药物治疗的多动症青少年的OW/OB率相似。在接受药物治疗的多动症青少年中,在控制了家庭贫困程度之后,体育活动、睡眠时间和媒体使用并不会导致OW/OB风险。然而,在未接受药物治疗的多动症青少年中,符合睡眠时间准则与较低的OW/OB风险有关:总之,研究结果表明,临床医生和家长在管理多动症青少年的OW/OB风险时,不妨优先考虑改善睡眠时间。
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引用次数: 0
Child routines moderate a brief behavioral intervention to enhance sleep in school-aged children. 儿童常规调节简短行为干预,以提高学龄儿童的睡眠质量。
IF 2.7 3区 心理学 Q2 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-05-16 DOI: 10.1093/jpepsy/jsae015
Azeb Gebre, Nicola Hawley, Mary A Carskadon, Hollie Raynor, Elissa Jelalian, Judith Owens, Rena R Wing, Chantelle N Hart

Objective: To examine whether child routines (the consistency or variation in children's daily routines, household responsibilities, discipline routines, and homework routines) moderated the effectiveness of a brief behavioral intervention to enhance sleep in school-aged children.

Methods: Secondary analysis was conducted with a subset of 66 families with short sleeping (≤9.5 hr/day) children, 8-11 years old (female = 68%; mean age = 9.76, SD = 1.02) who completed the Child Routines Inventory at baseline and were then randomized to receive a behavioral sleep intervention (n = 32) or to control (n = 34). Sleep period was objectively measured using wrist actigraphy at baseline and 2 months post-randomization. Moderation analysis was performed using ordinary least squares regression using the PROCESS macro for SPSS.

Results: Controlling for sleep period at baseline, treatment condition was significantly related to the sleep period at 2 months post-randomization, with the intervention group achieving a longer sleep period compared to the usual sleep period group (control) (b = 46.30, p < .01). Intervention response was moderated by child routines (b = 1.43, p < .05). Specifically, the intervention produced the greatest change in sleep period for children who engaged in greater routine behaviors at baseline than those who engaged in fewer routine behaviors.

Conclusions: Families that engage in routine behaviors may be better equipped to adopt the behavioral modifications required to get a good night's sleep. The findings highlight the importance of working with families to establish routine behaviors to improve responses to behavioral sleep interventions.

目的研究儿童常规(儿童日常生活常规、家庭责任、纪律常规和家庭作业常规的一致性或差异性)是否会调节旨在提高学龄儿童睡眠质量的简短行为干预的效果:我们对 66 个家庭进行了二次分析,这些家庭都有睡眠时间短(≤9.5 小时/天)的 8-11 岁儿童(女性 = 68%;平均年龄 = 9.76 岁,SD = 1.02),他们在基线时填写了儿童常规量表,然后被随机分配到接受行为睡眠干预(32 人)或对照组(34 人)。在基线期和随机后 2 个月,使用腕动仪对睡眠时间进行客观测量。使用 SPSS 的 PROCESS 宏进行普通最小二乘法回归分析:在控制基线睡眠时间的前提下,治疗条件与随机后 2 个月的睡眠时间有显著关系,干预组比常规睡眠时间组(对照组)的睡眠时间更长(b = 46.30,p < .01)。干预反应受儿童作息时间的影响(b = 1.43,p < .05)。具体来说,干预措施对基线常规行为较多的儿童睡眠时间的改变最大,而对常规行为较少的儿童睡眠时间的改变较小:结论:有常规行为的家庭可能更有能力采取必要的行为矫正措施,以获得良好的睡眠。研究结果强调了与家庭合作建立常规行为对改善行为睡眠干预反应的重要性。
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引用次数: 0
Cross-sectional and longitudinal changes in body composition, anxiety, and depression in a clinical sample of adolescents with anorexia nervosa. 神经性厌食症青少年临床样本中身体成分、焦虑和抑郁的横向和纵向变化。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-16 DOI: 10.1093/jpepsy/jsae012
Alexis Dosal, Brenna Denhardt, Rebekah Diaz, Katrina Obleada, Marissa Feldman, Jasmine Reese, Sarah Sobalvarro

Objective: Eating disorders among children and adolescents have increased in prevalence, and mortality rates for anorexia nervosa are among the highest for any psychiatric disorder. Our current study aimed to (a) examine the cross-sectional relationship between body composition and anxiety/depressive symptoms among 97 adolescents and young adults who have been diagnosed with anorexia nervosa, (b) examine the longitudinal changes in body composition and anxiety/depressive symptoms over three months (from baseline to follow-up visit), and (c) examine the longitudinal relationship between change in body composition and change in anxiety/depression over three months.

Method: A retrospective chart review was conducted within an interdisciplinary eating disorder clinic between August 2019 and December 2021. In total, 97 adolescents aged 11-20 years old with diagnoses of anorexia nervosa were included in the analyses. Body composition data were collected at each visit along with parent- and youth-report measures of symptoms of anxiety/depression symptoms.

Results: Findings indicated adolescents demonstrated some improvement in body composition, as well as parent-reported reductions in anxiety/depression symptoms. Based on parent reports, increased BMI percentile was associated with improvements in anxiety/depression symptoms. On the other hand, youth did not report significant changes in anxiety/depressive symptoms. Additionally, there were no associated improvements with body composition measures, which may be associated with continued body dissatisfaction or symptoms of anxiety and depression predating the eating disorder.

Conclusions: These results suggest the importance of including interventions addressing depression, anxiety, and body image as part of treatment.

目的:儿童和青少年饮食失调症的发病率越来越高,神经性厌食症的死亡率是所有精神疾病中最高的。我们目前的研究旨在:(a)研究97名被诊断为神经性厌食症的青少年中身体成分与焦虑/抑郁症状之间的横向关系;(b)研究三个月内(从基线到随访)身体成分与焦虑/抑郁症状的纵向变化;以及(c)研究三个月内身体成分变化与焦虑/抑郁变化之间的纵向关系:方法:2019 年 8 月至 2021 年 12 月期间,在一家跨学科进食障碍诊所内进行了一次回顾性病历审查。共有 97 名被诊断为神经性厌食症的 11-20 岁青少年参与了分析。每次就诊时都收集了身体成分数据,同时还收集了家长和青少年报告的焦虑/抑郁症状:研究结果表明,青少年的身体成分有所改善,家长报告的焦虑/抑郁症状也有所减轻。根据家长的报告,BMI 百分位数的增加与焦虑/抑郁症状的改善有关。另一方面,青少年并没有报告焦虑/抑郁症状的显著变化。此外,身体成分测量也没有相关的改善,这可能与持续的身体不满意或饮食失调前的焦虑和抑郁症状有关:这些结果表明,将针对抑郁、焦虑和身体形象的干预措施作为治疗的一部分非常重要。
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引用次数: 0
Co-design and usability of an interactive web-based fertility decision aid for transgender youth and young adults. 为变性青年和年轻人共同设计基于网络的互动式生育决策辅助工具,并提高其可用性。
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-09 DOI: 10.1093/jpepsy/jsae032
Diane Chen, Elaine Shen, Victoria D Kolbuck, Afiya Sajwani, Courtney Finlayson, Elisa J Gordon

Objective: To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design.

Method: TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale).

Results: Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores.

Conclusions: We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.

目标:通过以用户为中心的参与式设计,为变性和非二元性(TNB)青年/年轻成人及其父母开发一个以患者和家庭为中心的生育相关医疗决策援助(AFFRMED)互动网站,以促进有关生育保护干预措施的共同决策:方法:招募有兴趣或正在接受青春期抑制或性别确认激素治疗的 TNB 青年/青壮年以及符合条件的 TNB 青年/青壮年的父母参加一系列以人为本的迭代式共同设计会议,以开发 AFFRMED 的初始原型。随后,TNB青年/青少年和TNB青年/青少年的家长被招募参加可用性测试访谈,其中包括可用性测量(即情景调查问卷、净促进得分、系统可用性量表):27名参与者完成了18次迭代协同设计会议,并对10个版本的AFFRMED提供了反馈意见(16名TNB青年/青少年和11名家长)。9 名 TNB 青少年和 6 名家长完成了个人可用性测试访谈。总体而言,参与者对 AFFRMED 在可接受性、适宜性、可用性和满意度方面的评价都很高。然而,不同治疗组群的得分各不相同,对青春期抑制治疗感兴趣或正在接受治疗的 TNB 青少年的可用性得分最低:我们共同创建了一个以青少年和家庭为中心的生育决策辅助原型,以在线互动的形式提供教育和决策支持。未来的发展方向包括测试该辅助决策工具在提高生育和生育保护知识、决策自我效能和决策满意度方面的效果。
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引用次数: 0
Using the consolidated framework for implementation research to identify challenges and opportunities for implementing a reproductive health education program into sickle cell disease care 利用实施研究的综合框架,确定在镰状细胞病护理中实施生殖健康教育计划的挑战和机遇
IF 3.6 3区 心理学 Q1 Medicine Pub Date : 2024-05-03 DOI: 10.1093/jpepsy/jsae031
Zachary A Colton, Sophia M Liles, Megan M Griffith, Charis J Stanek, Joseph Walden, Allison King, Toyetta Barnard-Kirk, Susan Creary, Leena Nahata
Background As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease (FUTURES). The study aim was to use the Consolidated Framework for Implementation Research (CFIR) during pre-implementation to identify challenges and opportunities from the individual to systems level of implementation to ultimately optimize the integration of FUTURES into clinical practice. Methods Semi-structured interviews were conducted with clinicians, research team members, and adolescent and young adult (AYA) males with SCD and their caregivers who participated in pilot testing. Interviews (N = 31) were coded inductively and then mapped onto CFIR domains (i.e., outer setting, inner setting, characteristics of individuals, and intervention characteristics). Results Research team interviews indicated the lack of universal guidelines for reproductive care in this population and gaps in reproductive health knowledge as key reasons for developing FUTURES, also highlighting the importance of collaboration with community members during development. Clinicians reported intraorganizational communication as essential to implementing FUTURES and discussed challenges in addressing reproductive health due to competing priorities. Clinicians, AYAs, and caregivers reported positive views of FUTURES regarding length, engagement, accessibility, and content. Suggestions for the best setting and timing for implementation varied. Conclusions Using CFIR during the pre-implementation phase highlighted challenges and opportunities regarding integrating this program into SCD care. These findings will inform adaptation and further testing of FUTURES to ensure effective implementation of this novel education program.
背景 随着镰状细胞病 (SCD) 患者存活率的提高,人们呼吁改善他们的生殖保健和结果。研究小组创建了一个名为 "了解镰状细胞病生殖健康的生育教育"(FUTURES)的网络项目。研究目的是在实施前使用实施研究综合框架 (CFIR),识别从个人到系统层面实施过程中的挑战和机遇,最终优化 FUTURES 与临床实践的整合。方法 对参与试点测试的临床医生、研究团队成员、患有 SCD 的青少年男性患者及其照顾者进行了半结构化访谈。对访谈(N = 31)进行归纳编码,然后映射到 CFIR 领域(即外部环境、内部环境、个人特征和干预特征)。研究小组的访谈结果表明,缺乏针对该人群的生殖保健通用指南和生殖健康知识缺口是开发 FUTURES 的主要原因,同时还强调了在开发过程中与社区成员合作的重要性。临床医生表示,组织内部的沟通对于实施 FUTURES 至关重要,他们还讨论了因优先事项相互竞争而在解决生殖健康问题方面面临的挑战。临床医生、青壮年和护理人员对 FUTURES 的时间长度、参与度、可及性和内容表示肯定。关于实施的最佳环境和时机的建议各不相同。结论 在预实施阶段使用 CFIR 凸显了将该计划纳入 SCD 护理的挑战和机遇。这些发现将为 FUTURES 的调整和进一步测试提供依据,以确保这一新型教育计划的有效实施。
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Journal of Pediatric Psychology
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