A third of adolescents aged 11 to 19 years report depression symptoms, yet many go undiagnosed or do not receive timely treatment. Those who do seek support often face barriers including stigma and long waiting times, resulting in a significant needs-access gap for adolescents looking to access treatment for depression. Parents play a central role in recognizing adolescents’ symptoms and seeking treatment for them. To deepen the understanding on how to better support parents to support their adolescent child, this meta-synthesis aimed to systematically review qualitative studies on parents’ lived experiences of having an adolescent with depression. A pre-planned systematic search using five databases identified 25 papers meeting full inclusion criteria. Data were extracted and a thematic synthesis was conducted using NVivo, with reporting following PRISMA guidelines. Six themes were generated: (1) How do you know when your adolescent has depression?; (2) Understanding the causes of adolescent depression; (3) Emotional turbulence in parents; (4) Effects on the whole family; (5) Experiences with help-seeking; and (6) Stigma and judgment from others. The findings collectively highlight the need for increased parental involvement in professional treatment provision for adolescent depression, alongside better support for parents’ own wellbeing, and improved access to psychoeducation and parent-directed interventions for adolescents with depression. PROSPERO registration ID CRD42024527144. This systematic review synthesizes evidence on the lived experience of parents of adolescents with depression. 25 papers published between 2004 and 2025 were included in the meta-synthesis. Parents struggle to recognize depression symptoms in adolescents and report self-blame, helplessness and distress. Parents are motivated to initiate the help-seeking process, but their experiences with professional support vary. There is a need for parent-directed support and increased parental involvement in adolescent depression treatment.

In this EURORDIS paper, we explore the importance of psychological support to live will with a rare disease. The literature review highlights the importance of integrating psychological and psychosocial support into rare disease care pathways, particularly at key stages such as diagnosis and disease progression, when emotional distress and uncertainty are often highest. The findings demonstrate that family-centred and community-based approaches improve wellbeing. Interventions that strengthen coping strategies, such as acceptance, resilience, and self-efficacy, are associated with better mental health outcomes and quality of life. Access to peer support, social networks, and clear, reliable information also plays a key role in helping individuals and families manage the challenges of living with a rare condition. The paper calls for more holistic, multidisciplinary and psychologically informed care models, with psychological support embedded throughout care pathways. It also calls for stronger policy action to address gaps in provision and ensure equitable access to mental health and psychosocial support across rare disease systems.

Paediatric stroke can have enduring impacts that influence life trajectories, including young adulthood, a crucial transitory period for establishing independence. Impacts can be heightened for ethnically minoritised populations due to racism in healthcare and general society. This qualitative study aimed to explore ethnically minoritised young adults’ experiences of paediatric stroke. Semi-structured interviews were conducted and analysed using interpretative phenomenological analysis. Reflexivity based on lived experience was embedded throughout the research process, supported through consultation with an advisory group. Results were reviewed by participants to ensure the findings’ credibility. Three themes were identified: Strengths and Strains from Family and Culture described the care and support from community alongside the burdensomeness and rejection from cultural stigma; Misfitting in a White Landscape demonstrated the intersectional marginalisation experienced from White systems; and Carrying the Weight and Finding the Way Through illustrated the emotional toll and resilience from negative social experiences contributing to advocacy for greater inclusion. The findings emphasise the importance of holistically considering the individual needs and experiences of ethnically minoritised young people who have had a paediatric stroke.

In this literature review conducted by EURORDIS, we examine the psychological and psychosocial needs of people living with a rare condition and their families. The findings highlight that people living with a rare condition and their families face common and persistent challenges. These include chronic uncertainty, limited access to reliable information, stigma, social isolation, and difficulties navigating fragmented healthcare systems. Many individuals and caregivers also take on the role of coordinating care themselves, often without adequate support. The report emphasises that psychological needs evolve over time, particularly at key stages such as diagnosis, disease progression, and transition to adult care. Despite this, psychological and psychosocial support remains a major unmet need across the rare disease community. In response, the report calls for more integrated, family-centred and multidisciplinary care, with psychological support embedded throughout the care pathway and stronger links with patient organisations to better support individuals and families.

AIM:To explore and synthesize interview-based, qualitative research of parents' experiences of having a child who had a paediatric stroke. METHOD:A systematic search of literature identified seven studies that used qualitative, interview-based methods to investigate parents' experiences of having a child (younger than 25 years) who had a paediatric stroke. Data were extracted and appraised for quality. All seven studies were included in a meta-ethnography. An advisory group of two parents contributed to the analysis through two consultation meetings. RESULTS:A conceptual model of parents' experiences was developed, highlighting the lack of childhood stroke awareness, insufficient support from healthcare professionals, and the role of societal norms. These factors significantly shaped both the emotional impact on parents and the trajectory of their experiences, from emergency response to adjustment. INTERPRETATION:Greater awareness of childhood stroke, alongside sustained professional support for families, may substantially improve outcomes for parents and their children.

Abstract Introduction Congenital abdominal wall defects (AWD) such as gastroschisis (GS) and omphalocele (OC) are malformations associated with morbidity, especially early in life. Our aim was to identify if screening instruments for mental health indicate elevated levels of difficulties. Method A systematic literature review complying with a PRISMA-protocol (PROSPERO, CRD42023443731) was undertaken. A search across five databases, focusing on mental health difficulties during childhood was conducted. Result Out of 450 articles identified, six were included, in total 168 children (median sample size; 31, range 16-38) covering an age range of 5-17 years. The studies were all cross- sectional, single-centre, originating in the Netherlands(n=3), Australia(n=2), and the USA(n=1),using parent’s reports of the instruments Strength and Difficulties Questionnaire (SDQ), (n=3), Child Behaviour Check List (CBCL), ( n=2) and Behaviour Assessment System for Children –Second Edition (BASC-2), (n=1). In most studies, the AWD group had a higher prevalence of mental health difficulties. Two studies showed that children with AWD had significantly higher levels of difficulties in at least one domain of mental health, while the other four studies found no significant differences. Discussion Screening instruments for mental health difficulties show different results regarding children born with an AWD. A subgroup reported mental health difficulties, but not always significantly more than in the healthy normative population, but previous studies have employed small sample sizes and have lacked the statistical power to detect differences. More research, preferably with larger samples from multiple centres is warranted.

Background Sleep problems are common in adolescents and have detrimental impacts on physical and mental health and daily functioning. Evidence-based treatment like cognitive behaviour therapy for insomnia (CBT-I) is often hard to access, and adolescents may not engage in and adhere to longer, clinician-delivered interventions. Brief, self-guided, and accessible sleep interventions are needed. Objective To explore the user experience of a prototype online self-help single session sleep intervention developed for adolescents. Methods Eleven participants aged 17–19 years (8 females, 3 males) took part in online retrospective think-aloud interviews. Participants first completed the prototype intervention independently and were then shown the intervention page by page and asked to verbalise their thoughts and experiences. Transcripts were analyzed thematically. Results Participants found the intervention helpful. Four themes were generated - ‘Educative: Learning, but more fun’, ‘Effortless: Quicker and Easier’, ‘Personalization: Power of Choice’, and ‘Positivity: Just Good Vibes’. The theme ‘Educative: Learning, but more fun’ encompassed two sub-themes ‘Opportunity to Learn’ and ‘Aesthetics and Learning’. These themes reflected participants’ views that the intervention was educative, personalised, solution-oriented and easy to use, but could incorporate more graphics and visuals to aid in learning and could be made more effortless and positive through modifications to its design. Conclusions Findings convey the importance of ensuring educative well-designed content, personalization, a positive tone, and ease of use while designing interventions targeting adolescents’s sleep and mental health. They also indicate areas for further developing the intervention.

Abstract Background Our knowledge of the broader impacts of antidepressant withdrawal, beyond physical side effects, is limited. Further research is needed to investigate the lived experiences of withdrawal, to aid clinicians on how to guide patients through the process. Aim To explore antidepressant users’ experiences and views on the withdrawal process and how it affected their quality of life across multiple life domains. Design and Setting We conducted in‐depth qualitative interviews with 20 individuals from the community who had attempted to withdraw from Serotonin Reuptake Inhibitor antidepressants in the past year. Method Semi‐structured interviews were conducted online. A topic guide was used to ensure consistency across interviews. The interviews were audio‐recorded and transcribed verbatim and analysed using inductive reflexive thematic analysis. Results Five themes were generated. The first highlighted the challenges of managing the release from emotional blunting and cognitive suppression following antidepressant discontinuation. The second related to the negative impact of withdrawal on close relationships and social interactions. The third showed that concurrent with negative physical symptoms, there was a positive impact on health (exercise was reported by some as a coping mechanism). The fourth theme focused on support from GPs and families, emphasising the importance of mental health literacy in others. The final theme underscored the importance of gradual and flexible tapering in enabling a manageable withdrawal experience, and the consideration of timing. Conclusion The lived experience of withdrawal significantly impacts individuals’ well‐being. Participants emphasised that withdrawal is not just about physical side effects but also affects their emotional, cognitive, and social functioning. Patient and Public Involvement (PPI) Eight people attended individual online meetings to share their experiences of antidepressant withdrawal to help inform the study design and recruitment strategy. Insights from these meetings informed the development of the topic guide. Questions about GP involvement, family relationships, and mood and thinking changes were included based on this PPI work. This ensured the inclusion of topics important to antidepressant users and facilitated the researcher's questioning during the interviews.

The EA-QOL questionnaire measures quality-of-life specifically for children born with esophageal atresia (EA) aged 8–18 and was completed in Sweden and Germany. This study aimed to describe an international collaborative initiative to establish a semantically equivalent linguistic version of the EA-QOL questionnaires in 12 new countries. The 24-item EA-QOL questionnaire was translated into the target languages and the translated questionnaire was evaluated through cognitive debriefing interviews with children with EA aged 8–18 and their parents in each new country. Participants rated an item as to whether an item was easy to understand and sensitive/uncomfortable to answer. They could choose not to reply to a non-applicable/problematic item and provide open comments. Data were analyzed using predefined psychometric criteria; item clarity ≥80%, item sensitive/uncomfortable to answer ≤20%, item feasibility(missing item responses ≤5%). Decision to improve any translation was made by native experts–patient stakeholders and the instrument developer. Like in Sweden and Germany, all items in the cross-cultural analysis of child self-report (ntot = 82, 4–10 children/country) met the criteria for item clarity in all 12 new countries, and in parent-report (ntot = 86, 5–10 parents/country) in 8/12 countries. All items fulfilled the criteria for sensitive/uncomfortable to answer (child-report 1.2–9.9%; parent-report 0–11.6%) and item feasibility. Poor translations were resolved. Hence, this study has established semantically equivalent linguistic versions of the EA-QOL questionnaire for use in children aged 8–18 with repair of EA in and across 14 countries.

Loneliness is a common experience amongst adolescents. As adolescents spend much of their time in school, it is important that school staff can support adolescent students experiencing loneliness. The current study aimed to explore teachers' experiences of a 1-page loneliness toolkit regarding adolescent loneliness. An online survey to collect ratings and descriptions of experiences was distributed to secondary school teachers. Findings showed that both self-rated knowledge and experience of students experiencing loneliness were positively correlated with how useful teachers found the loneliness toolkit. Three themes were developed about how useful teachers found the toolkit; clarity, brings attention to loneliness, and communication. Two themes were developed about how the user experience of the toolkit could be improved; education, and interactive student support. Future research should investigate more effective methodologies aimed at supporting adolescents experiencing loneliness to aid teachers in supporting their students.

INTRODUCTION:Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research.MATERIALS AND METHODS:A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described.RESULTS:Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study.CONCLUSIONS:This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.

Oesophageal atresia–tracheoesophageal fistula (EA-TEF) is a common congenital digestive disease. Patients with EA-TEF face gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life issues in childhood, adolescence and adulthood. Although consensus guidelines exist for the management of gastrointestinal, nutritional, surgical and respiratory problems in childhood, a systematic approach to the care of these patients in adolescence, during transition to adulthood and in adulthood is currently lacking. The Transition Working Group of the International Network on Oesophageal Atresia (INoEA) was charged with the task of developing uniform evidence-based guidelines for the management of complications through the transition from adolescence into adulthood. Forty-two questions addressing the diagnosis, treatment and prognosis of gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life complications that patients with EA-TEF face during adolescence and after the transition to adulthood were formulated. A systematic literature search was performed based on which recommendations were made. All recommendations were discussed and finalized during consensus meetings, and the group members voted on each recommendation. Expert opinion was used when no randomized controlled trials were available to support the recommendation. The list of the 42 statements, all based on expert opinion, was voted on and agreed upon. Currently, systematic care for adults and adolescents with oesophageal atresia–tracheoesophageal fistula (EA-TEF) as they transition into adulthood is lacking. A multidisciplinary group of experts structured this Consensus Statement offering guidelines for the care of adolescents and adults with EA-TEF during transition.

Background: Difficulties impacting mental wellbeing often start in childhood, and universal prevention programmes are gaining attention as a scalable method to mitigate early risks. Send Me Sunshine is a grassroots initiative postal subscription programme for primary school-aged children, with activities designed to promote mental wellbeing. This study aimed to explore the feasibility, acceptability, and demand for this programme. Method: A newsletter was sent to parents of the children in two primary school classes (n=60), inviting participation. A prototype pack was posted to those families who registered their interest. Children (n=15; Mage = 7.6 years) and their parents (n=15) gave feedback via online surveys. Deductive and inductive content analysis and descriptive statistics were used. Results: The prototype postal pack was popular with both children and parents. Participants gave positive feedback about the content and format of the pack indicating good acceptability, and the postal approach showed feasibility. All parents said they would subscribe, and 87% would be willing to pay, suggesting promising demand. Improvements were suggested for future programme development. Conclusion: This postal subscription wellbeing programme was feasible and acceptable in this study, and findings suggest it could work in practice. Empirical studies are now needed to see if it does work and has any effect or efficacy in maintaining or promoting child mental wellbeing.

AIM AND OBJECTIVE:To explore the experience of healthcare transition from paediatric to adult health care for adults born with oesophageal atresia and tracheo-oesophageal fistula (OA/TOF) and parents.BACKGROUND:OA/TOF is a rare and chronic health condition that can require lifelong medical follow-up and management. There is evidence to suggest that transitioning from paediatric to adult health care can be problematic for people with rare and chronic conditions, including OA/TOF. The previous literature suggests that the experience of transitioning with a rare condition is more complex than transitioning with a common chronic condition.DESIGN:The current study was a qualitative, cross-sectional, survey-based study.METHODS:Data were collected through an online survey. Parents of children born with OA/TOF (n = 23) and adults born with OA/TOF (n = 16) were recruited through a UK-based OA/TOF patient charity. Data from six open-ended questions were analysed using a hybrid approach combining elements of inductive and deductive thematic analyses. Throughout the research process, the SRQR were followed.RESULTS:Five themes were constructed during the analysis, reflecting the experience of parents and adults transitioning from paediatric to adult health care: thrown into the unknown; a cultural shift; stepping back and stepping up; 'no transition as such'; and living with uncertainty.CONCLUSIONS:The findings suggested that a formalised, managed healthcare transition is not commonly experienced by people born with OA/TOF and parents.RELEVANCE TO CLINICAL PRACTICE:We recommend a formalised healthcare transition process in OA/TOF, including preparation for transition and having a named key worker to manage the multidisciplinary transition process. The results also highlighted the need for adults born with OA/TOF to have access to a specialist health service with knowledge and understanding of issues related to OA/TOF.

BackgroundEsophageal atresia (EA) is a rare congenital anomaly characterized by a discontinuity of the esophagus. Following surgical repair, survival rates have improved dramatically the past decenniums and today exceed 90%, but the children commonly present with esophageal and respiratory morbidity. In 2018, a condition-specific quality-of-life questionnaire for children with esophageal atresia (EA) aged 2–7 in Sweden-Germany was finalized (The EA-QOL questionnaire). The study aim was to describe the evaluation of the new translations across 12 new countries in Europe, Asia, Africa, Central-and North America.MethodsFollowing forward-backward translation into the new languages, the 17-item EA-QOL questionnaire was tested in cognitive debriefing interviews with parents of children with EA aged 2–7. Parents rated if each item was easy to understand (clarity) and sensitive to answer (interference with personal integrity). They could skip responding to a non-applicable/problematic item and give open comments. Predefined psychometric criteria were used; item clarity ≥80%/item sensitive to answer ≤20%/item feasibility ≤5% missing item responses. The decision to modify the translation was based on native expert, patient stakeholder, and instrument developer review, and the need for harmonization between translations.ResultsSimilar to findings in the Swedish-German cognitive debriefing, the cross-cultural analysis of input from 116 parents from 12 new countries (4–14 parents, median 9 parents/country) showed that all items in the EA-QOL questionnaire fulfilled the criteria for item clarity ≥80% and sensitive to answer (ranging from 1%-4.5%), although results varied between countries. Four items had missing responses between 5.2% and 13.4%, three within the same domain and were in line with parents’ explanations. Poor translations and feasibility were improved.ConclusionsBased on parent input, the collaboration between native experts, patient stakeholders, and instrument developers, a linguistic version of the EA-QOL questionnaire for children aged 2–7 for use in and across 14 countries has been established. These efforts have set the conditions for a cross-cultural field test of the EA-QOL questionnaire and will open the doors for a new chapter in outcome research, registries, and clinical practice concerning children with EA. In the long-term, this will help increase knowledge of the disease's burden, promote patient-centeredness, exchange of information between nations, and strengthen evidence-based treatments for children born with EA.

Objective: Feeding and swallowing difficulties in children are increasing due to improved survival rates of children with complex medical conditions. Despite being common complications of esophageal atresia (EA), EA related feeding difficulties have received little attention in research. Establishing positive feeding interactions and practices are important for child health and development, and for parental and child mental health. The current study aimed to investigate the parental experiences of feeding a child born with EA. Methods: An international online survey was developed and disseminated to parents of children born with EA, aged 0-12 years, in collaboration with a patient charity for EA. Reflexive Thematic Analysis was used to analyze the qualitative survey responses. Results: 176 participants were included in the qualitative sample from a larger international online survey study, chosen by a process of selective coding. Three themes were constructed during the analysis: 1) Anxiety, trauma and loss; 2) Isolated and unsupported; and 3) Supported. The results indicated that parents of children born with EA experienced significant anxiety related to their child's swallowing and feeding difficulties and traumatic experiences during feeding, and that these led to parents feeling a sense of loss and sadness. It was also found that support, or a lack of support, within parents' social environment might mediate parental experiences of child's feeding difficulties. Conclusions: This study highlighted the importance of support for parents of children born with EA, and suggested a need for improved guidance for feeding and swallowing difficulties. (c) 2022 The Authors. Published by Elsevier Inc.

Background: Living with a rare and chronic health condition can have a significant impact on psychological well-being and mental health. There is a growing understanding that Esophageal Atresia (EA), a rare birth defect often accompanied by a Trachea-Esophageal Fistula (TEF), is a complex health condition that requires lifelong medical attention beyond pediatric care into adulthood. Given the reciprocal relationship between one's physical and psychological well-being, the aim of this study was to develop a better understanding of the mental health of adults born with EA/TEF. Methods: An international online survey was designed and disseminated in collaboration with an EA/TEF patient charity. The qualitative data was analyzed using a reflexive and inductive Thematic Analysis to explore the research question "How can being born with EA/TEF affect psychological well-being in adulthood?" Results: A total of 92 adults born with EA/TEF completed the online survey from 11 different counties. Five themes were generated during the analysis: 'Negative Experience with Healthcare Professionals', 'The Perception of Surgical Scars', 'The Psychosocial Consequences of Dysphagia', 'The Legacy of Medical Trauma', and 'Resilience in the Face of Adversity'. Conclusion: The results indicated that adults born with EA/TEF might face emotional challenges that can negatively affect their psychological well-being and mental health. It was also found that some adults born with EA/TEF demonstrate resilience through positive reappraisal of adverse experiences. The current study suggests that a multidisciplinary approach to the care of adults born with EA/TEF is necessary and directions for future research are discussed.

PURPOSE:Caring for a chronically ill child can be stressful and requires additional care from parents. Parental mental health and stress may impact both parental and child wellbeing, leading to maladaptive parenting practices, and interference with illness management. The aim of the study was to explore the levels of anxiety and depression in parents of children born with esophageal atresia (EA) and to investigate whether parental anxiety and depression were associated with child's medical characteristics or with parental factors. DESIGN AND METHODS:An international online survey was developed and disseminated to parents of children born with EA, aged 0-12 years, via EA patient charity social network sites. A one-way between subjects ANOVA and post hoc statistical analyses were used to examine differences in mean scores of parental anxiety and depression between sub-groups that described child's medical characteristics and parental characteristics. RESULTS:A total of 240 parents completed the survey from 17 different countries. Of these, nearly 70% self-reported raised levels of anxiety, whilst 38% self-reported raised levels of depression. Statistically significant differences in mean scores of parental anxiety and depression were found between sub-groups that described the child's feeding problems, parental age, and perceived support for caring, caring stress and money matters. CONCLUSION:Child's feeding problems related to esophageal atresia, and parental factors, such as younger age, perceived lack of support for caring, caring stress, and money worries, may contribute to the increased levels of parental anxiety and depression in parents of children born with EA.

Background: There is limited research into the experiences of receiving and providing help in the context of hoarding disorder. Aims: The present study aimed to explore the experiences of older people with hoarding difficulties receiving help and volunteers providing support to people with hoarding problems. Method: Qualitative methods were adopted to investigate the lived experience of participants. A total of seven volunteer helpers and four people with hoarding disorder were recruited and interviewed using a semi-structured interview, designed to explore experiences of providing and receiving help. Qualitative analysis of the interview data was performed using interpretive phenomenological analysis. Results: Four superordinate themes were identified: relationship between client and volunteer; (')live life again'; challenges; and supporting volunteers. The relationship was crucial in providing a trusting foundation from which clients felt able to move forward. Volunteers provided a space for clients to talk and appropriate self-disclosure helped to build a relationship. The informal and 'non-professional' status of volunteers enabled clients to take the lead and feel more in control of the therapeutic process. Volunteer flexibility and lack of time constraints contributed to clients 'making space' for themselves, both in their home and their lives. The support from volunteers enabled clients to 'live life again' and created a domino effect, bringing about improvements in other areas of their lives. Conclusions: The findings are discussed in relation to the training of health professionals to work with people with hoarding difficulties and the implications of the findings for treatment approaches and service provision.