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Mortality in adolescents after therapeutic intervention for self-harm: A systematic review and meta-analysis 青少年自我伤害治疗干预后的死亡率:系统回顾和荟萃分析。
IF 3.1 Pub Date : 2025-01-23 DOI: 10.1002/jcv2.12302
Faraz Mughal, Paul Young, Daniel Stahl, Joan R. Asarnow, Dennis Ougrin

Background

Self-harm in adolescents is an international concern. Evidence highlights that therapeutic intervention (TI), such as cognitive behaviour therapy informed treatments, after self-harm leads to reduced self-harm repetition. However, there is no prior literature about the effects of TI on future mortality in adolescents. We examined the effect of TI on mortality rates in adolescents across RCTs.

Methods

This review was reported in accordance with PRISMA guidance. MEDLINE, EMBASE, PsycINFO, and Cochrane Library were searched to 19 June 2024. Two authors independently screened titles, abstracts, and full texts against pre-defined criteria. RCTs were included if they compared a TI versus a comparator in adolescents up to 18 years with at least one prior self-harm episode. There was no lower age limit. For the pooled effect size of mortality, the DerSimonian-Laird method was used, and a random effects model for self-harm and suicide attempts. The primary outcome was intra or post-trial mortality in adolescent post TI, and the effect of TIs on self-harm including attempted suicide episodes were secondary outcomes. Analyses were done in Stata.

Results

Twenty-four trials of TIs consisting of 3470 randomised adolescents were included. The pooled risk difference for mortality of participants in the TI group was 0.002 (95% CI −0.003 to 0.008, p = 0.42). There were 6 deaths in the TI group compared to 15 deaths in the comparator group. The pooled risk difference for TI on repeat self-harm was −0.07 (95% CI −0.132 to −0.007, p = 0.028), and −0.05 (95% CI −0.086 to −0.007, p = 0.022) for suicide attempts compared to comparator.

Conclusions

This review found no significant impact of TIs on future mortality in adolescents. We also demonstrated that TIs can reduce suicide attempts which can lead to substantial benefits for adolescents, families, and clinical services.

背景:青少年自残是一个国际关注的问题。有证据表明,自我伤害后的治疗干预(TI),如认知行为疗法,可以减少自我伤害的重复。然而,目前还没有关于心理治疗对青少年未来死亡率影响的文献。我们通过随机对照试验检验了TI对青少年死亡率的影响。方法:本文按照PRISMA指南进行综述。检索MEDLINE、EMBASE、PsycINFO和Cochrane Library至2024年6月19日。两位作者独立筛选标题,摘要和全文对预定义的标准。如果在18岁以下至少有过一次自残行为的青少年中比较TI与对照者,则纳入随机对照试验。没有年龄下限。死亡率的综合效应量采用dersimonan - laird方法,自残和自杀未遂采用随机效应模型。主要结局是青少年接受心理教育后的试验中或试验后死亡率,次要结局是心理教育对包括自杀未遂事件在内的自我伤害的影响。分析在Stata完成。结果:纳入了24项ti试验,包括3470名随机青少年。TI组参与者死亡率的总风险差异为0.002 (95% CI -0.003 ~ 0.008, p = 0.42)。TI组有6例死亡,而比较组有15例死亡。与比较组相比,TI在重复自我伤害方面的总风险差异为-0.07 (95% CI -0.132至-0.007,p = 0.028),自杀企图方面的总风险差异为-0.05 (95% CI -0.086至-0.007,p = 0.022)。结论:本综述未发现TIs对青少年未来死亡率有显著影响。我们还证明,ti可以减少自杀企图,这可以为青少年、家庭和临床服务带来实质性的好处。
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引用次数: 0
Interventions for siblings of children and young people with mental health conditions: A systematic review 对有精神健康问题的儿童和青少年兄弟姐妹的干预措施:一项系统综述
IF 3.1 Pub Date : 2025-01-23 DOI: 10.1002/jcv2.12300
Irena Tetkovic, Joanna K. Anderson, Danielle Brocklebank, Jessica O’Logbon, Anne-Marie Burn, Tamsin J. Ford

Background

Childhood mental health conditions typically affect the entire family, including siblings, however there is a lack of research investigating interventions supporting siblings.

Methods

The review was prospectively registered with PROSPERO (CRD42022377163). We conducted systematic searches of 7 databases (Medline, EMBASE, PsycINFO, Child and Developmental and Adolescent Studies, Applied Social Science Index and Abstracts, Education Research Information Centre, and British Eduction Index) for studies evaluating interventions for children and young people (CYP) with siblings presenting with mental health conditions from January 1980 to August 2024. We included interventions for young people aged 4 to 24 years who have a sibling with a mental health condition, with symptoms and impact lasting at least 3 months. Quality of reporting was assessed using the Critical Appraisal Skills Programme qualitative checklist for qualitative and the Effective Public Health Project Practice quality assessment Tool for quantitative studies.

Results

We identified 4 eligible studies; 2 of family-based treatment and the other of drop-in group support from 2469 studies that were screened in total. Quantitative results were rated weak for three out of four studies, while qualitative results were rated moderate for two studies, and high for one study. The two studies of sibling support groups reported high acceptability.

Conclusion

The evidence for the effectiveness of interventions for siblings of CYP with mental health conditions is limited in both size and quality, highlighting a significant gap in research and practice. We cannot draw definitive conclusions from the available evidence, but it suggests support groups have potential to improve sibling outcomes. Additional research is required to determine sibling mental health trajectories and to identify risk and resilience factors possibly influencing poorer mental health outcomes. Clinicians should be mindful of potential effects of mental health conditions on other family members and encourage parents to communicate openly with siblings about family dynamics and the challenges they may face.

儿童时期的心理健康状况通常会影响整个家庭,包括兄弟姐妹,但缺乏调查支持兄弟姐妹的干预措施的研究。方法前瞻性注册为PROSPERO (CRD42022377163)。我们系统地检索了7个数据库(Medline、EMBASE、PsycINFO、儿童与发育与青少年研究、应用社会科学索引和摘要、教育研究信息中心和英国教育索引),以评估1980年1月至2024年8月期间对兄弟姐妹有心理健康问题的儿童和青少年(CYP)的干预措施。我们纳入了年龄在4至24岁之间、有兄弟姐妹有精神健康问题、症状和影响持续至少3个月的年轻人的干预措施。报告的质量评估使用了定性研究的关键评估技能方案定性检查表和定量研究的有效公共卫生项目实践质量评估工具。结果:我们确定了4项符合条件的研究;2个以家庭为基础的治疗和另一个从2469个研究中筛选出来的小组支持。四项研究中有三项的定量结果被评为弱,两项研究的定性结果被评为中等,一项研究的定性结果被评为高。这两项关于兄弟姐妹支持团体的研究报告了较高的可接受性。结论对有心理健康问题的CYP兄弟姐妹进行干预的有效性证据在数量和质量上都有限,在研究和实践中存在显著差距。我们无法从现有的证据中得出明确的结论,但它表明支持团体有可能改善兄弟姐妹的结果。需要进一步的研究来确定兄弟姐妹的心理健康轨迹,并确定可能影响较差心理健康结果的风险和复原力因素。临床医生应注意心理健康状况对其他家庭成员的潜在影响,并鼓励父母与兄弟姐妹公开沟通家庭动态和他们可能面临的挑战。
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引用次数: 0
Link between children's oppositional behaviors and parental quality of life post-ASD diagnosis: Mediating role of parental stress and coping strategies asd后儿童对立行为与父母生活质量的关系:父母压力和应对策略的中介作用
IF 3.1 Pub Date : 2025-01-09 DOI: 10.1002/jcv2.12303
Cécile Rattaz, Andrew Pickles, Christelle Vernhet, Cécile Michelon, Marie-Christine Picot, Amaria Baghdadli

Background

Oppositional behaviors are often an important issue for parents who have a child with autism spectrum disorder (ASD), and have been shown to be related to their Quality of Life (QoL). The present study examines the possible mediation and moderation effects of parenting stress and coping in the relationship between oppositional behaviors in the child with ASD and parental QoL.

Method

Parental stress, coping strategies, parental QoL and children's challenging behaviors (CBCL oppositional problem domain) were studied through parent-report (335 mothers and 230 fathers) over two occasions in a cohort of 485 children and adolescents with ASD (398 boys and 87 girls) with a mean age of 6.14 years (SD = 3.46) at baseline. Mediation and moderation effects were examined using structural equation modeling.

Results

Strong associations between child behaviors, parental stress and parental QoL were evidenced. Parental stress mediated the relationship between opposition in the child and parental QoL at diagnosis, but this effect was much smaller 3 years after diagnosis. Surprisingly, problem solving and social support, two commonly recommended coping strategies, had little or no effect on reducing impact on QoL 3 years later.

Conclusions

Longitudinal analysis allowed us to estimate the causal pathway between child oppositional behaviors, parental stress and impact on parental QoL. Our findings emphasize the crucial role of parental stress, which can mediate the impact of the children's oppositional behaviors on parental QoL. They argue for the need to develop specific interventions for parents focusing on parental stress and child's behavior management.

对自闭症谱系障碍(ASD)儿童的父母来说,对立行为往往是一个重要的问题,并已被证明与他们的生活质量(QoL)有关。本研究旨在探讨父母压力和应对在ASD儿童对立行为与父母生活质量之间可能的中介和调节作用。方法对485名平均年龄为6.14岁(SD = 3.46)的ASD儿童和青少年(男孩398名,女孩87名),通过两次父母报告(335名母亲和230名父亲)对父母压力、应对策略、父母生活质量和儿童挑战行为(CBCL对立问题域)进行研究。采用结构方程模型检验中介和调节效应。结果儿童行为、父母压力与父母生活质量之间存在显著相关性。在诊断时,父母压力介导了儿童对立情绪与父母生活质量之间的关系,但在诊断后3年,这种影响要小得多。令人惊讶的是,问题解决和社会支持这两种通常被推荐的应对策略,在3年后对减少生活质量的影响几乎没有影响。结论通过纵向分析,我们可以估计出儿童对立行为、父母压力和父母生活质量影响之间的因果关系。我们的研究结果强调了父母压力在儿童对立行为对父母生活质量的影响中所起的重要作用。他们认为有必要为父母制定具体的干预措施,重点关注父母的压力和孩子的行为管理。
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引用次数: 0
Beyond the income-achievement gap: The role of individual, family, and environmental factors in cognitive resilience among low-income youth 超越收入成就差距:个人、家庭和环境因素在低收入青年认知弹性中的作用
IF 3.1 Pub Date : 2024-12-20 DOI: 10.1002/jcv2.12297
Divyangana Rakesh, Ekaterina Sadikova, Katie A. McLaughlin

Background

Low socioeconomic status is associated with lower cognitive performance and long-term disparities in achievement and success. However, not all children from low-income backgrounds exhibit lower cognitive performance. Characterizing the factors that promote such resilience in youth from low-income households is of crucial importance.

Methods

We used baseline data from participants in the lowest tertile of income-to-needs in the Adolescent Brain Cognitive Development study and machine learning to identify the factors that predict fluid and crystallized cognitive resilience among youth from low-income backgrounds. Predictors included 164 variables across child characteristics, family and developmental history, and environment.

Results

Our models were reliably able to predict resilience but were substantially more accurate for crystallized cognition (AUC = 0.75) than for fluid cognition (AUC = 0.67). Key predictors included developmental factors such as birthweight and duration of breastfeeding, neighborhood-level factors (e.g., living in concentrated privilege, enrollment in advanced placement courses), children's own temperament and mental health, and other factors such as physical activity and involvement in extracurricular activities.

Conclusion

Our findings highlight the importance of a multifaceted approach to promoting cognitive resilience among children from low-income households in future intervention work.

低社会经济地位与较低的认知表现和长期的成就和成功差异有关。然而,并非所有来自低收入家庭的孩子都表现出较低的认知能力。描述促进低收入家庭青年这种适应能力的因素是至关重要的。方法:我们使用来自青少年大脑认知发展研究和机器学习中收入到需求最低分位数参与者的基线数据,以确定预测低收入背景青年的流体和结晶认知弹性的因素。预测因子包括164个变量,涉及儿童特征、家庭和发展史以及环境。结果我们的模型能够可靠地预测弹性,但对于结晶认知(AUC = 0.75)比流体认知(AUC = 0.67)要准确得多。关键的预测因素包括发育因素,如出生体重和母乳喂养的持续时间,社区水平因素(如生活在特权集中的地区,参加大学先修课程),儿童自身的气质和心理健康,以及其他因素,如体育活动和课外活动的参与。我们的研究结果强调了在未来的干预工作中,从多方面提高低收入家庭儿童的认知弹性的重要性。
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引用次数: 0
Investigating the reasons behind a later or missed diagnosis of attention-deficit/hyperactivity disorder in young people: A population cohort study 调查年轻人注意力缺陷/多动障碍诊断较晚或漏诊的原因:一项人口队列研究
IF 3.1 Pub Date : 2024-12-18 DOI: 10.1002/jcv2.12301
Isabella Barclay, Kapil Sayal, Tamsin Ford, Ann John, Mark J. Taylor, Anita Thapar, Kate Langley, Joanna Martin

Background

Attention Deficit Hyperactivity Disorder (ADHD) is a common neurodevelopmental condition, more often diagnosed in males. In many individuals, particularly females, ADHD is diagnosed later or missed, the reasons for this are not fully understood. Timely diagnosis is needed to provide support, management, and treatment to improve outcomes. This study aimed to understand why some young people with ADHD experience later or missed diagnosis and to consider sex differences.

Methods

This study included 9991 (females = 43.69%) individuals from the Millenium Cohort Study, a UK based population study which defined recognised ADHD by a parent-reported clinician diagnosis, and unrecognised ADHD by parent-reported questionnaires. Behavioural and emotional difficulties, engagement in leisure activities, and parental characteristics, were compared between those recognised earlier (by ages 5/7, n = 264, f = 19.3%) versus later (by ages 11/14, n = 260, f = 21.2%), and those recognised (n = 524, f = 20.2%) versus unrecognised (n = 1,138, f = 38.7%) using logistic regression, with odds ratios (OR) and 95% confidence intervals (CI) analysed. Sex differences were investigated with an interaction analysis.

Results

Those recognised with ADHD earlier had more peer, conduct, and emotional problems, emotional dysregulation, lower cognitive ability, and poorer prosocial skills compared with those recognised later, ORs ranged from 0.27 (95% CI = 018, 0.41) to 1.20 (95% CI = 1.20, 1.32). Similar findings were seen when comparing those with recognised and unrecognised ADHD; ORs ranged from 0.11 (95% CI = 0.09, 0.15) to 1.31 (95% CI = 1.19, 1.43). Additionally, those recognised were more likely to have diagnosed autism and have less reported physical activity. Sex stratification showed that recognised males had higher emotional dysregulation than unrecognised males, but this was not seen in females.

Conclusions

Our findings highlight the need to consider ADHD referral, regardless of cognitive and prosocial ability or comorbidities, if children are displaying ADHD symptoms. Additionally, symptoms of ADHD not traditionally included in screening criteria, such as emotional dysregulation, should be considered to improve gender-inclusive recognition of ADHD.

背景:注意缺陷多动障碍(ADHD)是一种常见的神经发育疾病,多见于男性。在许多个体中,特别是女性,ADHD诊断较晚或被遗漏,其原因尚不完全清楚。需要及时诊断以提供支持、管理和治疗以改善预后。这项研究旨在了解为什么一些患有多动症的年轻人经历了较晚的诊断或错过了诊断,并考虑了性别差异。方法本研究包括9991名(女性= 43.69%)来自千禧队列研究的个体,这是一项基于英国的人群研究,通过父母报告的临床医生诊断来定义可识别的ADHD,通过父母报告的问卷来定义未识别的ADHD。使用logistic回归分析了早期(5/7岁,n = 264, f = 19.3%)和晚期(11/14岁,n = 260, f = 21.2%)和早期(n = 524, f = 20.2%)和未识别(n = 1138, f = 38.7%)患者的行为和情感困难、参与休闲活动和父母特征,并分析了比值比(OR)和95%置信区间(CI)。通过相互作用分析调查性别差异。结果较早诊断为ADHD的患者与较晚诊断的患者相比,有更多的同伴、行为和情绪问题、情绪失调、较低的认知能力和较差的亲社会技能,or范围为0.27 (95% CI = 018, 0.41)至1.20 (95% CI = 1.20, 1.32)。在比较确诊和未确诊的ADHD患者时,也发现了类似的结果;or范围为0.11 (95% CI = 0.09, 0.15)至1.31 (95% CI = 1.19, 1.43)。此外,那些被识别的人更有可能被诊断为自闭症,并且报告的体育活动较少。性别分层显示,被识别的男性比未被识别的男性有更高的情绪失调,但这在女性中没有发现。结论:我们的研究结果强调,如果儿童出现ADHD症状,无论其认知能力和亲社会能力或合并症如何,都需要考虑ADHD转诊。此外,传统上不包括在筛查标准中的ADHD症状,如情绪失调,应考虑改善对ADHD的性别包容性认识。
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引用次数: 0
Camouflaging in neurodivergent and neurotypical girls at the transition to adolescence and its relationship to mental health: A participatory methods research study 向青春期过渡的神经分裂女孩和神经畸形女孩的伪装及其与心理健康的关系:参与式方法研究
IF 3.1 Pub Date : 2024-12-17 DOI: 10.1002/jcv2.12294
Ailbhe McKinney, Sarah O’Brien, Jacqueline A. Maybin, Stella W. Y. Chan, Simone Richer, Sinead Rhodes

Background

Adolescent girls with diagnoses of autism, ADHD and/or developmental coordination disorder (DCD) are at higher risk for mental health problems than boys with the same diagnoses and neurotypical girls. These girls are called neurodivergent here, though neurodivergence includes a broader range of diagnoses. One possible reason for this mental health disparity could be camouflaging, a coping strategy used more by girls. Camouflaging is when the individual pretends to be neurotypical, often involving substantial effort. This study aims to understand: (a) if the use of camouflaging has started by early adolescence, (b) how components of camouflaging (assimilation, masking, and compensation) present at this age, (c) if age predicts camouflaging and (d) what is the relationship with mental health.

Methods

Participatory methods: A co-production team of 15 adult neurodivergent women co-produced the project and ranked camouflaging as their most important research theme.

Main Study: Participants were 119 girls (70 neurodivergent, 49 neurotypical) aged 11–14 years. A transdiagnostic approach was adopted and the neurodivergent group had a diagnosis of autism, ADHD and/or DCD. Girls completed self-report measures of camouflaging, anxiety, and depression in an online meeting with a researcher.

Results

Neurodivergent and neurotypical girls presented similarly on two components of camouflaging namely masking and compensation, components related to presenting in a socially acceptable way and mimicry. Groups differed on the assimilation component, which is related to trying to fit in and involves the feelings of pretending/acting. Age had a medium effect on camouflaging with higher levels of camouflaging observed in older girls. Camouflaging scores strongly predicted anxiety and depression scores in both groups.

Conclusions

The use of camouflaging, specifically assimilation, is evident in a transdiagnostic sample of 11–14 year old neurodivergent girls. Importantly, the strong relationship between camouflaging and poor mental health is present at this early age, substantiating the co-production team's insights.

背景:被诊断为自闭症、多动症和/或发育协调障碍(DCD)的青春期女孩比同样诊断的男孩和神经正常的女孩有更高的心理健康问题风险。这些女孩在这里被称为神经分化,尽管神经分化包括更广泛的诊断。造成这种心理健康差异的一个可能原因是伪装,这是女孩更常用的一种应对策略。伪装是指一个人假装自己是正常的,通常需要付出很大的努力。本研究旨在了解:(a)伪装的使用是否在青春期早期就开始了;(b)伪装的成分(同化、掩盖和补偿)在这个年龄段是如何存在的;(c)年龄是否预测了伪装;(d)与心理健康的关系是什么。方法:参与式方法:一个由15名成年神经分化女性组成的合作制作团队共同制作了这个项目,并将伪装作为他们最重要的研究主题。主要研究对象:119名11-14岁的女孩(70名神经发散型,49名神经正常型)。采用跨诊断方法,神经发散组被诊断为自闭症、ADHD和/或DCD。在与研究人员的在线会议中,女孩们完成了伪装、焦虑和抑郁的自我报告。结果:神经发散型和神经正常型女孩在伪装的两个组成部分,即掩蔽和补偿,以社会可接受的方式呈现和模仿相关的组成部分上表现相似。各组在同化成分上存在差异,同化成分与试图融入社会有关,涉及假装/表演的感觉。年龄对伪装有中等影响,在年龄较大的女孩中观察到更高的伪装水平。伪装得分强烈预测了两组的焦虑和抑郁得分。结论:在11-14岁神经发散性女孩的跨诊断样本中,伪装,特别是同化的使用是明显的。重要的是,伪装和不良心理健康之间的强烈关系在这个早期就存在,证实了联合制作团队的见解。
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引用次数: 0
Cultivating participatory processes in self-harm app development: A case-study and working methodology 在自我伤害应用程序开发中培养参与性过程:案例研究和工作方法。
IF 3.1 Pub Date : 2024-12-11 DOI: 10.1002/jcv2.12295
Camilla M. Babbage, Joanna Lockwood, Lily Roberts, Josimar Mendes, Chris Greenhalgh, Lucy-Paige Willingham, Emmanuel Wokomah, Rebecca Woodcock, Petr Slovak, Ellen Townsend, the Digital Youth research team

Background

Self-harm and suicide related behaviours are increasing in young people, and clinical support is not adequately meeting needs. Improved approaches to assessment and the clinical management of self-harm will result from codesign processes and include greater shared decision-making between young people and practitioners. The CaTS-App (an adapted digital version of the existing Card-Sort Task for Self-harm research tool) aims to facilitate a collaborative understanding of adolescent self-harm and support decision-making within clinical settings. The codevelopment of a digital, clinical tool which meets the needs of multiple stakeholders requires careful consideration.

Methods

We present a case-study describing the participatory aspects of the development of the CaTS-App, which included comprehensive patient involvement, research activities and coproduction with diverse young people aged 17–24 with lived experience of self-harm. We share our processes and activities to deliver safe, engaging, sustainable, ethical and responsible participatory practice and co-created knowledge, in the codevelopment of the CaTS-App.

Results

Activities spanned a 48-month period in both face-to-face and online settings. Example processes and activities are provided in narrative, tabular and diagrammatic form, alongside discussion of the rationale for choices made. A summary methodology is also shared to stimulate continued discussion and development of participatory approaches in digital mental health.

Conclusions

The paper contributes important insight and practical detail for the delivery of genuine participatory processes in digital mental health development when working with a population who may be considered vulnerable.

背景:年轻人的自残和自杀相关行为正在增加,临床支持不能充分满足需求。共同设计过程将改善自我伤害的评估和临床管理方法,并包括年轻人和从业人员之间更多的共同决策。CaTS-App(现有的自我伤害卡片分类任务研究工具的数字版本)旨在促进对青少年自我伤害的协作理解,并在临床环境中支持决策。共同开发一种满足多个利益相关者需求的数字化临床工具需要仔细考虑。方法:我们提出了一个案例研究,描述了CaTS-App开发的参与性方面,其中包括全面的患者参与,研究活动以及与17-24岁有自残经历的不同年轻人的合作。我们分享我们的流程和活动,以提供安全、参与、可持续、道德和负责任的参与式实践和共同创造的知识,共同开发CaTS-App。结果:活动跨越了48个月的面对面和在线设置。示例过程和活动以叙述、表格和图表的形式提供,同时讨论了所做选择的基本原理。还分享了一种总结方法,以促进数字精神卫生参与性方法的持续讨论和发展。结论:本文为在与可能被认为是弱势群体合作时,在数字心理健康发展中提供真正的参与性过程提供了重要的见解和实用细节。
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引用次数: 0
No decision about me, without me: Collaborating with young people in mental health research 没有我,就没有我:与年轻人合作进行心理健康研究。
IF 3.1 Pub Date : 2024-12-11 DOI: 10.1002/jcv2.12291
Alex Lloyd, Tom (Chin-Han) Wu, Laura Lucas, Adeola Agunbiade, Romana Saleh, Pasco Fearon, Essi Viding

Involving young people with lived experience in youth mental health research is important. In recognition of the value of collaborating with experts by experience, international funders are increasingly mandating that mental health research is developed by teams that include individuals from the population of study. Yet, research into how Patient Public Involvement, specifically co-production and co-design, is implemented in youth mental health research is limited to date. The current review examined this question and identified common practices for collaborating with experts by experience in young people's mental health research. Academic databases were systematically searched for studies that had involved young people in mental health research, had described these activities, and had reported some demographic information about the experts by experience. From a total of 2130 studies that were screened, 37 studies were eligible for inclusion. The use of co-production and co-design spanned a wide range of topics, including interventions, digital support tools and psychometric studies. Interactive workshops were the primary method of engaging experts by experience, although some studies utilised interviews or focus groups. From the reviewed studies we identified common methodological practices including: Scene setting, utilising a cyclical process, ensuring appropriate engagement and recognition of the cultural context. We draw on these findings to suggest common methods for conducting co-production and co-design activities, and emphasise the importance of ensuring experts by experience are respected and safeguarded throughout their collaboration in research. We also outline areas that deserve future attention and development, and include a response from two young people aged 16–18 and their suggestions for improving and extending co-production methods.

让有生活经验的年轻人参与青年心理健康研究是很重要的。认识到根据经验与专家合作的价值,国际资助者越来越多地要求心理健康研究由包括研究对象个人在内的团队开展。然而,迄今为止,对青少年心理健康研究中如何实施患者公众参与,特别是共同制作和共同设计的研究是有限的。目前的审查审查了这个问题,并确定了在年轻人心理健康研究中与专家合作的常见做法。系统地检索了学术数据库,查找涉及青年人参与心理健康研究的研究,这些研究描述了这些活动,并根据经验报告了有关专家的一些人口统计信息。在总共2130项被筛选的研究中,37项研究符合纳入条件。联合制作和共同设计的使用涵盖了广泛的主题,包括干预措施、数字支持工具和心理测量学研究。虽然有些研究利用访谈或焦点小组,但互动式讲习班是根据经验吸引专家的主要方法。从回顾的研究中,我们确定了常见的方法实践,包括:场景设置,利用循环过程,确保适当的参与和对文化背景的认识。根据这些发现,我们建议开展合作生产和共同设计活动的共同方法,并强调在研究合作过程中确保经验丰富的专家得到尊重和保护的重要性。我们还概述了未来值得关注和发展的领域,并包括两位16-18岁的年轻人的回应以及他们对改进和扩展合作制作方法的建议。
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引用次数: 0
Deepening the participation of neurodivergent youth in qualitative mental health research: Co-development of a general approach and the evaluation of its implementation in a study on emotion 深化神经分化青年在质性心理健康研究中的参与:一种通用方法的共同发展及其在情绪研究中的实施评估。
IF 3.1 Pub Date : 2024-12-07 DOI: 10.1002/jcv2.12287
Myrofora Kakoulidou, Georgia Pavlopoulou, Susie Chandler, Steve Lukito, Maciej Matejko, Isabel Jackson, Beta Balwani, Tiegan Boyens, Dorian Poulton, Luke Harvey-Nguyen, Zoe Glen, Archie Wilson, Elisa Ly, Elizabeth Macauley, Sylvan Baker, Georgina Bullen, Edmund J. S. Sonuga-Barke, RE-STAR team

Background

There is a growing expectation that neurodivergent young people, such as those with diagnoses of attention-deficit/hyperactivity disorder (ADHD) and/or autism, should play a central role in shaping research on neurodevelopmental conditions. However, currently, their involvement is typically limited to arms-length advice. To address this, the Regulating Emotions-Strengthening Adolescent Resilience (RE-STAR) programme has co-developed a framework for deepening the involvement of neurodivergent participants in translational research. Here we apply this to build, implement and evaluate a new approach to participatory qualitative research.

Methods

Development – Building on the track record of successful collaboration between RE-STAR academic researchers (ARs) and its Youth Researcher Panel (Y-RP), a cycle of meetings was convened to co-develop a collaborative protocol for the participatory approach. Implementation – ARs and Y-RPers applied the general protocol to study a specific topic. This involved co-designing and co-delivering an interview schedule to study the emotional experiences of 12 adolescents with diagnoses of ADHD and/or autism and then co-analysing the interviews. Evaluation – ARs, Y-RPers and interviewees shared their reflections on the participatory approach and its implementation, during interviews (N = 36) and short open-ended surveys (N = 22).

Results

Development - The protocol for the participatory approach gave detailed advice on how to engage Y-RP members (or equivalent) in the co-design, co-delivery and co-analysis of interviews. Implementation - The approach was successfully implemented by ARs and Y-RPers working together to co-design an interview to study the emotional lives of adolescents with diagnoses of ADHD and/or autism, co-deliver it and then co-analyse the interview scripts. Evaluation - The implementation experience of the Y-RP, ARs and interviewees was characterised by common themes relating to (a) adapting research methods and making practical adjustments; (b) taking on new roles, adding value to research and (c) valuing neurodivergent characteristics.

Conclusions

This new RE-STAR protocol proved feasible to implement in a way that was generally perceived, from multiple perspectives, to add depth and authenticity to research into the experiences of neurodivergent young people.

背景:越来越多的人期望神经分化的年轻人,如那些被诊断为注意力缺陷/多动障碍(ADHD)和/或自闭症的年轻人,应该在形成神经发育条件的研究中发挥核心作用。然而,目前,他们的参与通常仅限于提供适当的建议。为了解决这个问题,调节情绪-加强青少年恢复力(RE-STAR)项目共同开发了一个框架,以深化神经分化参与者在转化研究中的参与。在这里,我们将此应用于构建、实施和评估参与性定性研究的新方法。方法:发展-基于RE-STAR学术研究人员(ARs)与其青年研究小组(Y-RP)之间成功合作的记录,召开了一系列会议,共同制定参与式方法的合作协议。实现- ar和y - rper应用通用协议来研究特定主题。这包括共同设计和提供一个访谈时间表,研究12名被诊断为多动症和/或自闭症的青少年的情感经历,然后共同分析访谈。在访谈(N = 36)和短期开放式调查(N = 22)期间,评估专家、Y-RPers和受访者分享了他们对参与式方法及其实施的看法。结果:发展-参与式方法的协议就如何让Y-RP成员(或同等人员)参与访谈的共同设计、共同交付和共同分析提供了详细的建议。实施-该方法已被ar和y - rper成功实施,他们共同设计了一个访谈,研究被诊断为ADHD和/或自闭症的青少年的情感生活,共同交付,然后共同分析访谈脚本。评价- Y-RP、ar和受访者的执行经验的特点是(a)调整研究方法和作出实际调整;(b)承担新的角色,为研究增加价值,(c)重视神经分化特征。结论:这个新的RE-STAR方案被证明是可行的,以一种普遍感知的方式实施,从多个角度,增加了研究神经发散性年轻人经历的深度和真实性。
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引用次数: 0
Participatory research in child psychology & psychiatry: Embracing untidiness to break new ground 儿童心理学和精神病学的参与式研究:拥抱邋遢,开辟新天地。
IF 3.1 Pub Date : 2024-12-04 DOI: 10.1002/jcv2.12284
Andrea MacLeod, Ifigeneia Manitsa, Stephane De Brito

We are pleased to present our Special Issue on Participatory Research. In this editorial, we outline how the disability rights movement has been instrumental to the development of participatory approaches, before giving consideration to some of the debates and criticisms associated with participatory research in practice. We summarise the contributions offered by the studies within this issue and propose four areas of consideration, drawn from the body of included research, to inform future developments.

我们很高兴推出我们的参与性研究特刊。在这篇社论中,我们概述了残疾人权利运动如何对参与式方法的发展起着重要作用,然后考虑到实践中与参与式研究相关的一些辩论和批评。我们总结了本期研究提供的贡献,并从纳入的研究中提出了四个考虑领域,以告知未来的发展。
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引用次数: 0
期刊
JCPP advances
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