Project description:Zellweger spectrum disorders (ZSDs) are rare, debilitating genetic diseases of peroxisome biogenesis that require constant management and lifelong care. Nevertheless, the experience of family caregivers for children diagnosed with ZSD is not well understood. In this study, we sought to characterize the emotional experience of ZSD family caregivers. Three 90-min focus groups were conducted with thirty-seven parents (25 mothers and 12 fathers) of children with ZSD during a family advocacy conference. Focus groups were arranged by age of proband (Group 1: 0-4 years, Group 2: 5-10 years, Group 3: >11 years). Audio recordings of focus groups were transcribed and analyzed using software for coding purposes. Analyzed content was validated using peer debriefing, member checking, and method triangulation. Focus group results showed that nearly a third of ZSD caregivers described their overall emotional experience as a "rollercoaster." Additionally, three interconnected themes were identified: 1) range of emotions, 2) stressors, and 3) coping. Feeling overwhelmed and devastated were the most frequently described emotional responses. Corresponding stressors to these emotions included the burden of caregiver tasks associated with ZSD, and negative interactions with healthcare professionals. The most common coping strategies were acceptance of limitations of the diseases, redefining "normal" in the parenting experience, and advocating on behalf of the child and the patient community. This study underscores the profound emotional impact on parents who are caregivers for children with ZSDs, highlighting the utility of patient community feedback and qualitative approaches to fully characterize the overall family experience. Simple, targeted approaches focusing on improved communication between healthcare professionals and families, as well as offering resources for emotional support may greatly improve the lives of families living with ZSD and other rare pediatric diseases.

Project description:IntroductionEmotional disorders (anxiety and depressive disorders) are a relevant public health concern associated with high prevalence, high costs, and important disability. Therefore, research priorities include designing and testing cost-effective interventions to reach everyone in need. Internet-delivered interventions for emotional disorders are effective and can help to disseminate and implement evidence-based treatments. However, although these treatments are generally effective, not all patients benefit from this treatment format equally. Blended treatments are a new form of intervention that combines the strengths of face-to-face and Internet approaches. Nevertheless, research on blended interventions has focused primarily on individual therapy, and less attention has been paid to the potential of using this format in group psychotherapy. This study aims to analyze the feasibility of blended transdiagnostic group CBT for emotional disorders. The current article describes the study protocol for this trial.Method and analysisA one-armed pilot trial will be conducted. Participants will be 30 adults suffering from DSM-5 anxiety and/or depressive disorders. The treatment consists of a blended transdiagnostic group intervention delivered during a period of 24 weeks. Groups of 6 to 10 patients will attend a total of eight 2-hour, face-to-face sessions, alternated with the use of an online platform where they will find the contents of the treatment protocol. The intervention has four core components: present-focused awareness, cognitive flexibility, identification and modification of behavioral and cognitive patterns of emotional avoidance, and interoceptive and situational exposure. These components are delivered in 16 modules. Assessments will be performed at baseline, during the treatment, at post-treatment, and at 3-month follow-up. Clinical and treatment acceptability outcomes will be included. Quantitative and qualitative data (participants' views about blended group psychotherapy) will be analyzed.Ethics and disseminationThe trial has received ethical approval from the Ethics Committee of Universitat Jaume I (September 2019) and will be conducted in accordance with the study protocol, the Declaration of Helsinki, and good clinical practice. The results of this study will be disseminated by presentation at conferences and will be submitted for publication in a peer-reviewed journal.Trial registrationClinicalTrials.gov Identifier: NCT04008576. Registered 05 July 2019, https://clinicaltrials.gov/ct2/show/NCT04008576.

Project description:In low- and middle-income countries (LMICs), children and families face a multitude of risk factors for mental health and well-being. These risks are even further exacerbated in humanitarian emergencies. However, access to effective mental health services in such settings is severely limited, leading to a large mental health treatment gap. Middle childhood (5-12 years) is a crucial period for human development during which symptoms of emotional distress often emerge, with one in three mental disorders developing prior to age 14. However, there is little evidence of effective psychological interventions for children in this developmental stage, and suitable for implementation within LMICs and humanitarian emergencies. We conducted this evidence review to inform the development of a new intervention package based on existing best practice for this age group, drawing insights from both global and LMIC resources. Our review synthesizes the findings of 52 intervention studies from LMICs and humanitarian settings; 53 existing systematic reviews and meta-analyses covering both LMICs and high-income countries, and 15 technical guidelines. Overall, there is limited high-quality evidence from which to draw recommendations for this age group; however, some promising intervention approaches were identified for children experiencing externalizing and internalizing symptoms, traumatic stress and a combination of difficulties. Several effective interventions utilize cognitive-behavioral techniques for children, in either group or individual format, and incorporate caregiver skills training into treatment, although the findings are mixed. Most evaluated interventions use specialists as delivery agents and are lengthy, which poses challenges for scale-up in settings where financial and human resources are scarce. These findings will inform the development of new psychological interventions for children in this age group with emotional and behavioral difficulties.

Project description:BackgroundBlended therapy (BT) combines digital with face-to-face psychological interventions. BT may improve access to treatment, therapy uptake, and adherence. However, research is scarce on the structure of BT models.ObjectiveWe synthesized the literature to describe BT models used for the treatment of psychological disorders in adults. We investigated whether BT structure, content, and ratio affected treatment efficacy, uptake, and adherence. We also conducted meta-analyses to examine treatment efficacy in intervention-control dyads and associations between treatment outcomes versus BT model structure.MethodsPsycINFO, CINAHL, Embase, ProQuest, and MEDLINE databases were searched. Eligibility criteria included articles published in English till March 2023 that described digital and face-to-face elements as part of an intervention plan for treating psychological disorders in adult patients. We developed a coding framework to characterize the BT interventions. A meta-analysis was conducted to calculate effect size (ES; Cohen d and 95% CIs) regarding pre- and posttreatment outcomes in depression and anxiety versus BT structure. The review was registered with PROSPERO and followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines.ResultsSearches identified 8436 articles, and data were extracted from 29 studies. BT interventions were analyzed and classified according to mode of interaction between digital and face-to-face components (integrated vs sequential), role of the components (core vs supplementary), component delivery (alternate vs case-by-case), and digital materials assignment mode (standardized vs personalized). Most BT interventions (n=24) used a cognitive behavioral therapy approach for anxiety or depression treatment. Mean rates of uptake (91%) and adherence (81%) were reported across individual studies. BT interventions were more effective or noninferior to treatment as usual, with large spread in the data and a moderate to large ES in the treatment of depression (n=9; Cohen d=-1.1, 95% CI -0.6 to -1.6, P<.001, and z score=-4.3). A small, nonsignificant ES was found for anxiety outcomes (n=5; Cohen d=-0.1, 95% CI -0.3 to 0.05, P=.17, and z score=-1.4). Higher ESs were found in blended interventions with supplementary design (depression: n=11, Cohen d=-0.75, 95% CI -0.56 to -0.95; anxiety: n=8, Cohen d=-0.9, 95% CI -0.6 to -1.2); fewer (≤6) face-to-face sessions (depression: n=9, Cohen d=-0.7, 95% CI -0.5 to -0.9; anxiety: n=7, Cohen d=-0.8, 95% CI -0.3 to -1.3); and a lower ratio (≤50%) of face-to-face versus digital sessions (depression: n=5, Cohen d=-0.8, 95% CI -0.6 to -1.1; anxiety: n=4, Cohen d=-0.8, 95% CI 0.006 to -1.6).ConclusionsThis study confirmed integrated BT models as feasible to deliver. We found BT to be effective in depression treatment, but anxiety treatment results were nonsignificant. Future studies assessing outcomes across different psychological disorders and therapeutic approaches are required.Trial registrationPROSPERO CRD42021258977; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=258977.

Project description:BackgroundBlended behavior change interventions combine therapeutic guidance with online care. This new way of delivering health care is supposed to stimulate patients with chronic somatic disorders in taking an active role in their disease management. However, knowledge about the effectiveness of blended behavior change interventions and how they should be composed is scattered.ObjectiveThis comprehensive systematic review aimed to provide an overview of characteristics and effectiveness of blended behavior change interventions for patients with chronic somatic disorders.MethodsWe searched for randomized controlled trials published from 2000 to April 2017 in PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials. Risk of bias was assessed using the Cochrane Collaboration tool. Study characteristics, intervention characteristics, and outcome data were extracted. Studies were sorted based on their comparison group. A best-evidence synthesis was conducted to summarize the effectiveness.ResultsA total of 25 out of the 29 included studies were of high quality. Most studies (n=21; 72%) compared a blended intervention with no intervention. The majority of interventions focused on changing pain behavior (n=17; 59%), and the other interventions focused on lifestyle change (n=12; 41%). In addition, 26 studies (90%) focused on one type of behavior, whereas 3 studies (10%) focused on multiple behaviors. A total of 23 studies (79%) mentioned a theory as basis for the intervention. The therapeutic guidance in most studies (n=18; 62%) was non face-to-face by using email, phone, or videoconferencing, and in the other studies (partly), it was face-to-face (n=11; 38%). In 26 studies (90%), the online care was provided via a website, and in 3 studies (10%) via an app. In 22 studies (76%), the therapeutic guidance and online care were integrated instead of two separate aspects. A total of 26 outcome measures were included in the evidence synthesis comparing blended interventions with no intervention: for the coping strategy catastrophizing, we found strong evidence for a significant effect. In addition, 1 outcome measure was included in the evidence synthesis comparing blended interventions with face-to-face interventions, but no evidence for a significant effect was found. A total of 6 outcome measures were included in the evidence synthesis comparing blended interventions with online interventions, but no evidence for a significant effect was found.ConclusionsBlended behavior change interventions for patients with chronic somatic disorders show variety in the type of therapeutic guidance, the type of online care, and how these two delivery modes are integrated. The evidence of the effectiveness of blended interventions is inconsistent and nonsignificant for most outcome measures. Future research should focus on which type of blended intervention works for whom.

Project description:BackgroundRisk of being diagnosed with different developmental disorders is found to vary with immigrant background. Knowledge about such differences in Norway are a starting point for equity in health services quality, and for early identification and prevention. Our objective was to assess the risk of receiving diagnoses of developmental disorders among children born in Norway (2006-2017) to two or one immigrant parent compared to children with two Norwegian-born parents.MethodsInformation on developmental disorders was from the Norwegian Patient Register (NPR) and information on immigrant background, parental country of origin, parental education, and household income from Statistics Norway. We estimated hazard ratios (HR) with Cox proportional hazard regressions. With children with Norwegian background as reference category, we estimated HRs for immigration background and region of origin. All analyses were adjusted for sex, year of birth, parental education, and household income.ResultsChildren with two immigrant parents had a lower risk of receiving any developmental disorder diagnosis [HR 0.80 (95% CI 0.77, 0.82)] than children with Norwegian background, and lower risk of being diagnosed with attention deficit hyperactivity disorder (ADHD) diagnosis [HR 0.24 (95% CI 0.22, 0.27)], learning difficulties diagnosis [HR 0.39 (95% CI 0.33, 0.47)], and behavioral and emotional disorders [HR 0.52 (95% CI 0.49, 0.55)]. Children with immigrant parents had higher hazard than Norwegian background children of autism spectrum disorder (ASD) [HR 2.21 (95% CI 2.04, 2.39)], mental retardation [HR 1.84 (95% CI 1.64, 2.07)], language disorders [HR 1.30 (95% CI 1.20, 1.40)], and unspecified developmental disorders [HR 1.22 (95% CI 1.17, 1.28)]. Children with only one immigrant parent had lower risk of diagnoses than children of two immigrants.ConclusionRisk of receiving a diagnosis of various developmental disorders varied substantially by immigrant background. Understanding the underlying mechanisms of these differences is warranted to ensure equity in health services and timely intervention.

Dataset Information

Parents' acceptability of blended psychological interventions for children with emotional disorders

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets