Canice E Crerand, Ayah Shehata, Hailey Umbaugh, Hillary M Kapa, Jennifer Hansen-Moore, Leena Nahata, Cindy Buchanan, Diane Chen, Joseph Rausch, Shivika Udaipuria, Venkata R Jayanthi, Yee-Ming Chan, Keeley J Pratt, Elizabeth Buschur, Justin Indyk, Amy C Tishelman
Objective: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment.
Methods: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews.
Results: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment.
Conclusions: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.
{"title":"Body image and psychosocial outcomes in youth and young adults with differences of sex development: a multi-method study.","authors":"Canice E Crerand, Ayah Shehata, Hailey Umbaugh, Hillary M Kapa, Jennifer Hansen-Moore, Leena Nahata, Cindy Buchanan, Diane Chen, Joseph Rausch, Shivika Udaipuria, Venkata R Jayanthi, Yee-Ming Chan, Keeley J Pratt, Elizabeth Buschur, Justin Indyk, Amy C Tishelman","doi":"10.1093/jpepsy/jsae041","DOIUrl":"10.1093/jpepsy/jsae041","url":null,"abstract":"<p><strong>Objective: </strong>Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment.</p><p><strong>Methods: </strong>This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews.</p><p><strong>Results: </strong>Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment.</p><p><strong>Conclusions: </strong>Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"512-523"},"PeriodicalIF":2.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141312038","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Olivia E Clark, Zoe R Smith, Taylor Hilderbrand, Grayson N Holmbeck
Objective: This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills.
Methods: Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User's Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge.
Results: Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills.
Conclusions: Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.
研究目的本研究旨在描述脊柱裂(SB)青少年病情相关知识增长的特点,确定增长的神经认知预测因素,并研究知识增长与后续医疗自我管理技能水平之间的关联:参与者是从一项大型纵向研究中招募的,该研究涉及 140 名患有脊柱裂的青少年和照顾者,他们在 8 年中每两年填写一次问卷并接受一次访谈。目前的研究包括青少年对病情相关知识和医疗自我管理技能的报告。青少年的注意力和执行功能通过家长和教师的报告以及基于表现的评估进行评估。潜增长曲线在 Mplus Version 8(Múthen, L. K., & Múthen, B. O. [1998].Mplus User's Guide.[第八版]。Muthén & Muthén)来研究青少年报告的病情相关知识随时间的变化。将神经认知变量作为知识增长的预测因素,并使用回归分析从病情相关知识的增长中预测医疗自我管理技能:结果:青少年与病情相关的知识呈线性增长。青少年在基于工作记忆和注意力表现的任务中表现较好,这预示着在 T1 阶段病情相关知识的截距较高,但斜率却不高。教师和家长关于注意力不集中和执行功能障碍的报告对截距和增长的预测不一致。病情相关知识的斜率不能预测青少年随后的自我管理技能:结论:随着时间的推移,患有 SB 的青少年会获得与病情相关的知识。然而,执行功能障碍和注意力不集中可能会阻碍病情相关知识的增长。因此,执行功能支持、注意力相关干预和心理教育可能有助于病情相关知识的增长和日后医疗自我管理技能的提高,但还需要进一步研究评估家庭和文化因素。
{"title":"Growth of condition-related knowledge among youth with spina bifida: associations with neurocognitive functioning and self-management skills.","authors":"Olivia E Clark, Zoe R Smith, Taylor Hilderbrand, Grayson N Holmbeck","doi":"10.1093/jpepsy/jsad097","DOIUrl":"10.1093/jpepsy/jsad097","url":null,"abstract":"<p><strong>Objective: </strong>This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills.</p><p><strong>Methods: </strong>Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User's Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge.</p><p><strong>Results: </strong>Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills.</p><p><strong>Conclusions: </strong>Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"449-458"},"PeriodicalIF":2.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11258814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139431969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Meghan E McGrady, Mary E Keenan-Pfeiffer, Amy C Lang, Amy E Noser, Anshul P Tyagi, Julia K Herriott, Rachelle R Ramsey
Objective: This meta-analysis examined the efficacy of adherence-promotion interventions for children, adolescents, and young adults prescribed a medication for > 90 days as part of a treatment regimen for a medical condition.
Methods: A systematic literature review was conducted to identify randomized controlled trials of adherence-promotion interventions published between 2013 and 2023 and including children, adolescents, and/or young adults with a medical condition. A total of 38 articles representing 39 trials met inclusion criteria. A narrative synthesis was conducted to summarize included trials and a random-effects model was used to compute an overall intervention effect. Effect sizes by adherence outcome assessment methodology, participant age, and technology use were also computed.
Results: Pediatric adherence-promotion interventions demonstrate a medium effect with those randomized to an intervention displaying greater improvements in medication adherence than those randomized to a comparator condition (SMD = 0.46, 95% CI: 0.31, 0.60, n = 37; 95% Prediction Interval: -0.32, 1.23).
Conclusions: Adherence interventions for children, adolescents, and young adults with medical conditions increase adherence.
{"title":"Systematic review and meta-analysis of interventions to promote medication adherence among children, adolescents, and young adults with medical conditions.","authors":"Meghan E McGrady, Mary E Keenan-Pfeiffer, Amy C Lang, Amy E Noser, Anshul P Tyagi, Julia K Herriott, Rachelle R Ramsey","doi":"10.1093/jpepsy/jsae036","DOIUrl":"10.1093/jpepsy/jsae036","url":null,"abstract":"<p><strong>Objective: </strong>This meta-analysis examined the efficacy of adherence-promotion interventions for children, adolescents, and young adults prescribed a medication for > 90 days as part of a treatment regimen for a medical condition.</p><p><strong>Methods: </strong>A systematic literature review was conducted to identify randomized controlled trials of adherence-promotion interventions published between 2013 and 2023 and including children, adolescents, and/or young adults with a medical condition. A total of 38 articles representing 39 trials met inclusion criteria. A narrative synthesis was conducted to summarize included trials and a random-effects model was used to compute an overall intervention effect. Effect sizes by adherence outcome assessment methodology, participant age, and technology use were also computed.</p><p><strong>Results: </strong>Pediatric adherence-promotion interventions demonstrate a medium effect with those randomized to an intervention displaying greater improvements in medication adherence than those randomized to a comparator condition (SMD = 0.46, 95% CI: 0.31, 0.60, n = 37; 95% Prediction Interval: -0.32, 1.23).</p><p><strong>Conclusions: </strong>Adherence interventions for children, adolescents, and young adults with medical conditions increase adherence.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437680","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Adrianne K Nelson, Christa J Griest, Llubitza M Munoz, Nancy Rumaldo, Ann C Miller, Guadalupe M Soplapuco, Leonid Lecca, Sonya S Shin, Llalu R Acuña, Yesica V Valdivia, Alicia R Ramos, Diego G Ahumada, Blanca R H Ramos, Sarah A Mejia, Esther O Serrano, William H Castro, Victoria E Oliva, Annie S Heyman, Lauren P Hartwell, Ronnie L Blackwell, Diego F Diaz, Martha M Vibbert
Objective: Community-based video interventions offer an effective and potentially scalable early interaction coaching tool for caregivers living in low resource settings. We tested the Universal Baby (UB) video innovation; an early interaction coaching tool using video sourced and produced locally with early child development (ECD) expert supervision.
Methods: This proof-of-concept study enrolled 40 caregivers of children ages 10-18 months assigned to intervention and control groups by health establishments in Carabayllo, Lima, Peru. Mother/child dyads received 12 weekly group health education sessions with social support. Of those, 16 caregivers also received 6 UB videos featuring brain science education and local clips of responsive, reciprocal interaction, also known as "serve and return" interaction. Survey data assessed feasibility and acceptability of the intervention. We assessed improved quality of mother/child interaction using the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes (PICCOLO).
Results: We found the program feasible. We successfully trained the local team to produce UB videos using locally-sourced footage and delivered the videos as part of a community-based intervention. We also found it to be acceptable in that participants enthusiastically received the UB videos, reporting they enjoyed being videotaped, and learned how to recognize and appropriately respond to their child's nuanced sounds and gestures. The median change in total PICCOLO scores favored the intervention group compared to the control group.
Conclusions: UB offers great potential as a sustainable, potentially scalable, and culturally appropriate tool to promote equity for child development among young children living in low resource homes globally.
{"title":"Proof of concept of the Universal Baby video innovation for early child development in Lima, Peru.","authors":"Adrianne K Nelson, Christa J Griest, Llubitza M Munoz, Nancy Rumaldo, Ann C Miller, Guadalupe M Soplapuco, Leonid Lecca, Sonya S Shin, Llalu R Acuña, Yesica V Valdivia, Alicia R Ramos, Diego G Ahumada, Blanca R H Ramos, Sarah A Mejia, Esther O Serrano, William H Castro, Victoria E Oliva, Annie S Heyman, Lauren P Hartwell, Ronnie L Blackwell, Diego F Diaz, Martha M Vibbert","doi":"10.1093/jpepsy/jsae035","DOIUrl":"https://doi.org/10.1093/jpepsy/jsae035","url":null,"abstract":"<p><strong>Objective: </strong>Community-based video interventions offer an effective and potentially scalable early interaction coaching tool for caregivers living in low resource settings. We tested the Universal Baby (UB) video innovation; an early interaction coaching tool using video sourced and produced locally with early child development (ECD) expert supervision.</p><p><strong>Methods: </strong>This proof-of-concept study enrolled 40 caregivers of children ages 10-18 months assigned to intervention and control groups by health establishments in Carabayllo, Lima, Peru. Mother/child dyads received 12 weekly group health education sessions with social support. Of those, 16 caregivers also received 6 UB videos featuring brain science education and local clips of responsive, reciprocal interaction, also known as \"serve and return\" interaction. Survey data assessed feasibility and acceptability of the intervention. We assessed improved quality of mother/child interaction using the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes (PICCOLO).</p><p><strong>Results: </strong>We found the program feasible. We successfully trained the local team to produce UB videos using locally-sourced footage and delivered the videos as part of a community-based intervention. We also found it to be acceptable in that participants enthusiastically received the UB videos, reporting they enjoyed being videotaped, and learned how to recognize and appropriately respond to their child's nuanced sounds and gestures. The median change in total PICCOLO scores favored the intervention group compared to the control group.</p><p><strong>Conclusions: </strong>UB offers great potential as a sustainable, potentially scalable, and culturally appropriate tool to promote equity for child development among young children living in low resource homes globally.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2024-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141318586","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Atara Siegel, Robin Lockridge, Kari L Struemph, Mary Anne Toledo-Tamula, Paige Little, Pamela L Wolters, Anne Dufek, Cecilia Tibery, Melissa Baker, Brigitte C Wideman, Staci Martin
Objectives: Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness.
Methods: AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION).
Results: Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer.
Conclusions: In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care.
{"title":"Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.","authors":"Atara Siegel, Robin Lockridge, Kari L Struemph, Mary Anne Toledo-Tamula, Paige Little, Pamela L Wolters, Anne Dufek, Cecilia Tibery, Melissa Baker, Brigitte C Wideman, Staci Martin","doi":"10.1093/jpepsy/jsae006","DOIUrl":"10.1093/jpepsy/jsae006","url":null,"abstract":"<p><strong>Objectives: </strong>Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness.</p><p><strong>Methods: </strong>AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION).</p><p><strong>Results: </strong>Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer.</p><p><strong>Conclusions: </strong>In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"383-391"},"PeriodicalIF":2.7,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11175589/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139747562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Diabetes distress in urban Black youth with type 1 diabetes and their caregivers: associations with glycemic control, depression, and health behaviors.","authors":"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","doi":"10.1093/jpepsy/jsad096","DOIUrl":"10.1093/jpepsy/jsad096","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"394-404"},"PeriodicalIF":2.7,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139433230","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"A systematic review and meta-analysis of pediatric integrated primary care for the prevention and treatment of physical and behavioral health conditions.","authors":"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","doi":"10.1093/jpepsy/jsae038","DOIUrl":"https://doi.org/10.1093/jpepsy/jsae038","url":null,"abstract":"<p><strong>Objective: </strong>To evaluate the effects of behavioral health interventions delivered within pediatric integrated primary care models on clinical outcomes.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2024-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141312037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Perceived acceptability and appropriateness of a web-based program targeting risk for anxiety in young children and their parents.","authors":"Isaac A Mirzadegan, Ericka M Lewis, Sally L Cole, Alexandria Meyer","doi":"10.1093/jpepsy/jsae040","DOIUrl":"https://doi.org/10.1093/jpepsy/jsae040","url":null,"abstract":"<p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141301878","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Commentary: Increasing generalizability of parent psychosocial functioning within the context of pediatric chronic pain.","authors":"Brittany Ricart, Jocelyn Smith Carter","doi":"10.1093/jpepsy/jsae019","DOIUrl":"10.1093/jpepsy/jsae019","url":null,"abstract":"","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"318-320"},"PeriodicalIF":3.6,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140177196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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。
{"title":"Quality of life of caregivers at the end of their child's pediatric cancer treatment: cancer-specific worry and material hardship.","authors":"Liana R Galtieri, Megan N Perez, Lamia P Barakat","doi":"10.1093/jpepsy/jsae014","DOIUrl":"10.1093/jpepsy/jsae014","url":null,"abstract":"<p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":48372,"journal":{"name":"Journal of Pediatric Psychology","volume":" ","pages":"348-355"},"PeriodicalIF":3.6,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140066072","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}