A group of youth with severe and enduring mental health problems (SEMHP) falls between the cracks of the child-and-adolescent psychiatry (CAP) system. An insufficient understanding of these youth's... Show moreA group of youth with severe and enduring mental health problems (SEMHP) falls between the cracks of the child-and-adolescent psychiatry (CAP) system. An insufficient understanding of these youth's mental health problems results in a failure to accurately identify and provide support to these youth. To gain a deeper understanding, the aim of this study is to explore characteristics of youth with SEMHP in clinical practice based on the experiences of youth and clinicians in CAP. This qualitative study consisted of 20 semi-structured interviews with 10 youth with lived experience and 10 specialized clinicians in CAP. Both a thematic and content analysis was conducted to identify, assess, and report themes associated with youth with SEMHP. Themes were individual characteristics such as trauma, masking, self-destructive behavior, interpersonal distrust as well as environmental and systematic characteristics including parental stressors, social isolation and societal stressors, which go beyond the existing classifications. These characteristics profoundly impact youth's daily functioning across various life domains, creating an interactive process, ultimately leading to elusive mental health problems and overwhelming feelings of hopelessness. The authors recommend proper assessment of characteristics in all life domains affected and their perpetuating effect on SEMHP during diagnostics in CAP. Engaging in a dialogue with youth themselves is crucial due to the nature of youth's characteristics, which frequently transcend traditional classifications and may not be immediately discernible. It also requires an integrated care approach, entailing collaborations between educational institutions and mental healthcare providers, and attention to potential indicators of deficits in the healthcare system and society. Show less
Background : While cardiovascular diseases is highly prevalent and an important cause of mortality in autistic adults, knowledge on their increased cardiovascular risk is limited. Hence, this study... Show moreBackground : While cardiovascular diseases is highly prevalent and an important cause of mortality in autistic adults, knowledge on their increased cardiovascular risk is limited. Hence, this study aimed to investigate psychological, behavioral, and physical factors associated with metabolic syndrome (MetS) in adults with autistic traits.Methods : In total, 17,705 adults from the Lifelines Cohort were included and categorized using Autism Spectrum Quotient-10 sum-scores. The quartiles with highest (HQ-traits-group females: n = 2,635; males: n = 1803) and lowest levels of autistic traits (LQ-traits-group, n = idem) were analyzed. Using multivariable logistic regression, the associations between MetS and (self-reported and interviewed) psychological, behavioral, and physically measured factors in these stratified groups were investigated.Results : Among females, MetS was more common in the HQ-traits-group than in the LQ-traits-group (10.0% versus 7.5%, p < 0.01), while this was not the case among males (HQ-traits-group 13.8% versus LQ-traits-group 13.1%, p = 0.52). In both the female and male HQ-traits-group, the presence of MetS was associated with poorer self-reported health, less daily physical activity, and altered leukocyte counts.Conclusion These findings underline the relevance of adequate cardiovascular prevention in adults with higher levels of autistic traits. Future research could gain more insight into the relationship between cardiovascular risk and autistic traits in females, and into tailored cardiovascular prevention. Show less
Soet, R. de; Nooteboom, L.A.; Bansema, C.H.; Ewijk, H. van; Nijland, L.; Vermeiren, R.R.J.M. 2023
Youth with severe and enduring mental health problems (SEMHP) do not profit from regular child and adolescent psychiatric (CAP) treatment. Their changing and complex problems cause enormous... Show moreYouth with severe and enduring mental health problems (SEMHP) do not profit from regular child and adolescent psychiatric (CAP) treatment. Their changing and complex problems cause enormous suffering. To understand why these youth inadequately profit from CAP treatment, this qualitative study aimed to examine the experiences of youth with SEMHP, practitioners, and caregivers to identity barriers and facilitators in treatment. We conducted 31 semi-structured interviews with youth (n = 10), practitioners (n = 10), and caregivers of youth with SEMHP (n = 11). A thematic analysis was performed both deductively and inductively, and the perspectives of participants were compared. Results showed barriers and facilitators in five categories: before treatment, engagement and accountability, trust-based treatment, organization of care, and hopelessness. To restore epistemic trust, a shift from a risk-avoidance approach towards trust-based relationships in treatment is required. Additionally, organizing continuous and tailored care can prevent youth from slipping through the cracks of waiting lists and receiving inadequate treatment. Show less
Beer, C.R.M. de; Domburgh, L. van; Vermeiren, R.R.J.M.; Vreugd, M. de; Nooteboom, L.A. 2023
The involvement of youth peer workers (YPSWs) in child and adolescent mental health services (CAMHS) stimulates hope, destigmatization, and more culturally and developmentally appropriate support.... Show moreThe involvement of youth peer workers (YPSWs) in child and adolescent mental health services (CAMHS) stimulates hope, destigmatization, and more culturally and developmentally appropriate support. Nevertheless, the collaboration between YPSWs and non-peer colleagues remains challenging, as it requires services to embed a new type of expert into practice. To stimulate the involvement of YPSWs in practice, this study reports on 27 semi-structured interviews with YPSWs and non-peer colleagues to provide insight into the barriers and facilitators in the collaboration process. The study took place in the Netherlands. A total of 10 interviews with YPSWs, and 17 interviews with non-peer colleagues in different healthcare occupations in CAMHS were conducted. Overall, the participants perceived relatively more barriers compared to facilitators in the collaboration process. Barriers to operate efficiently with YPSWs in multidisciplinary teams included: condescending attitudes and professional stigma towards YPSWs; concerns for YPSW boundaries; bureaucratic and clinical language usage by non-peer colleagues; conflicts due to different sets of expertise; and, lack of role clarity and guidelines for YPSWs. To improve the partnership between YPSWs and non-peer colleagues, participants described the importance of supervision and monitoring of YPSW activities. Moreover, participants also stressed the need for clear guidelines, and introduction and evaluation sessions to facilitate the collaboration process. While YPSWs seem to be an asset to CAMHS, there are a number of barriers to overcome. To overcome these barriers, organizational commitment, supervision (especially from peer colleagues), flexibility by non-peer colleagues, training non-peer staff to support YPSWs, and consistent evaluation of the implementation of YPSWs in services is recommended. Show less
Autistic adults often experience health problems and a range of healthcare barriers. Therefore, the aim of this study was to evaluate barriers and explore how primary care providers and autistic... Show moreAutistic adults often experience health problems and a range of healthcare barriers. Therefore, the aim of this study was to evaluate barriers and explore how primary care providers and autistic adults want to improve their primary healthcare. Semi-structured interviews with three autistic adults, two parents of autistic children and six care providers, were performed to evaluate barriers in Dutch healthcare. Next, in a three-round Delphi-study, 21 autistic adults and 20 primary care providers rated barriers in primary healthcare and assessed recommendations based on usefulness and feasibility. In the thematically analysed interviews, 20 barriers in Dutch healthcare for autistic people were identified. In the Delphi-study, the primary care providers rated the negative impact of most barriers lower than the autistic adults. The Delphi-study resulted in 22 recommendations to improve primary healthcare for autistic adults, focused on: primary care providers (i.e. education in collaboration with autistic people), autistic adults (i.e. improvement of preparation for general practitioner-appointments) and organization of general practice (i.e. enhancement of continuity in care). In conclusion, primary care providers seem to assess healthcare barriers as less impactful than autistic adults. With the use of the Delphi-method, useful and feasible recommendations to improve primary healthcare for autistic adults were identified, based on the needs of autistic adults and primary care providers. Lay abstract Autistic adults often encounter different types of healthcare barriers. Because autistic adults also have an increased risk for health problems, the aim of this study was to evaluate barriers and to explore how primary care providers and autistic adults want to improve their primary healthcare. In this co-created study, semi-structured interviews with three autistic adults, two parents of autistic children and six care providers were performed to evaluate barriers in Dutch healthcare. Next, in the survey-study (using the Delphi-method including controlled feedback in three consecutive questionnaires), 21 autistic adults and 20 primary care providers rated the impact of barriers and the usefulness and feasibility of recommendations to improve primary healthcare. In the interviews, 20 barriers in Dutch healthcare for autistic people were found. In the survey-study, the primary care providers rated the negative impact of most barriers lower than the autistic adults. This survey-study resulted in 22 recommendations to improve primary healthcare focused on: primary care providers (including education in collaboration with autistic people), autistic adults (including improvement of preparation for general practitioner-appointments) and organization of general practice (including improvement of continuity in care). In conclusion, primary care providers seem to view healthcare barriers as less impactful than autistic adults. In this co-created study, recommendations to improve primary healthcare for autistic adults were identified, based on the needs of autistic adults and primary care providers. These recommendations provide a basis for primary care providers, autistic adults and their support network to start conversations about, for example, strategies to improve primary care providers' knowledge, autistic adults' preparation for a general practitioner-appointment and organization of primary care. Show less
Bansema, C.H.; Vermeiren, R.R.J.M.; Soet, R. de; Ewijk, H. van; Nijland, L.; Nooteboom, L.A. 2023
A small group of youth and emerging adults deals with severe and enduring mental health problems (SEMHP). Current mental health care struggles to recognize and treat this group timely and... Show moreA small group of youth and emerging adults deals with severe and enduring mental health problems (SEMHP). Current mental health care struggles to recognize and treat this group timely and adequately, leaving these youth between the cracks of the system. A first step to improve care for this group is to gain a deeper understanding of the characteristics of youth with SEMHP. Therefore, this study aimed at reviewing current literature about this target group and what is known so far about their characteristics. We included 39 studies with a focus on youth aged 12-25 years with SEMHP. After critical appraisal, a content analysis and in-depth thematic analysis were conducted. According to the included studies, youth with SEMHP were characterized by severe distress and recurrent comorbid mental health problems, with pervasive suicidality. Further, underlying trauma, family conflicts, peer rejection, deep feelings of hopelessness, and psychosocial malfunctioning characterized SEMHP. It was described that for youth with SEMHP a pervasive pattern of dysfunction in multiple domains is present leading to a detrimental impact. Subsequently, this pattern exerts a reciprocal influence on the mental health problems, causing a vicious circle further worsening SEMHP. Our findings emphasize the need for a holistic approach and to look beyond the traditional classification system in order to meet the needs of these youth with wide-ranging comorbid mental health problems. Show less
Soet, R. de; Vermeiren, R.R.J.M.; Bansema, C.H.; Ewijk, H. van; Nijland, L.; Nooteboom, L.A. 2023
Youth with severe and enduring mental health problems (SEMHP) tend to drop out of treatment or insufficiently profit from treatment in child and adolescent psychiatry (CAP). Knowledge about factors... Show moreYouth with severe and enduring mental health problems (SEMHP) tend to drop out of treatment or insufficiently profit from treatment in child and adolescent psychiatry (CAP). Knowledge about factors related to treatment failure in this group is scarce. Therefore, the aim of this systematic review was to thematically explore factors associated with dropout and ineffective treatment among youth with SEMHP. After including 36 studies, a descriptive thematic analysis was conducted. Themes were divided into three main categories: client, treatment, and organizational factors. The strongest evidence was found for the association between treatment failure and the following subthemes: type of treatment, engagement, transparency and communication, goodness of fit and, perspective of practitioner. However, most other themes showed limited evidence and little research has been done on organizational factors. To prevent treatment failure, attention should be paid to a good match between youth and both the treatment and the practitioner. Practitioners need to be aware of their own perceptions of youth's perspectives, and transparent communication with youth contributes to regaining their trust. Show less
Beer, C.R.M. de; Nooteboom, L.A.; Domburgh, L. van; Vreugd, M. de; Schoones, J.W.; Vermeiren, R.R.J.M. 2023
Gastrointestinal symptoms and their relation to physical and mental aspects in adults with an autism spectrum disorder (ASD) are poorly understood, despite their high prevalence. Therefore, the aim... Show moreGastrointestinal symptoms and their relation to physical and mental aspects in adults with an autism spectrum disorder (ASD) are poorly understood, despite their high prevalence. Therefore, the aim of this study is to examine psychological, behavioural and biological factors associated with gastrointestinal symptoms in adults with ASD (traits). We included 31,185 adults from the Lifelines Study. Using multivariable logistic regression, we analysed the association between gastrointestinal symptoms and psychological, behavioural (questionnaire-assessed) and physically measured biological factors in adults with ASD (n = 309), without ASD (n = 30,876), and in the quartiles with highest (n = 7783) and lowest (n = 7783) Autism Spectrum Quotient-10 sum scores. In the ASD-group, gastrointestinal symptoms were associated with psychiatric comorbidity (odds ratio: 2.71, 95% confidence interval: 1.51-4.85), more stress (odds ratio: 1.15, 95% confidence interval: 1.06-1.26), and worse perceived health (odds ratio: 2.32, 95% confidence interval: 1.62-3.34). In the quartile with the highest Autism Spectrum Quotient-10 sum scores, gastrointestinal symptoms were also associated with these psychological factors, and with less physical activity (odds ratio: 0.95, 95% confidence interval: 0.92-0.98). Our study demonstrates that not only adults with ASD but also adults with autistic traits are at increased risk for gastrointestinal symptoms, which is associated with psychological and behavioural factors. This suggests that an integrated psychosomatic approach of gastrointestinal symptoms in adults with ASD (traits) is needed. Lay abstract Little is known about factors related to the increased risk for gastrointestinal symptoms in adults with an autism spectrum disorder (ASD), while the negative impact of gastrointestinal symptoms is evident. Especially, the relationship between gastrointestinal symptoms and psychological, behavioural, and biological risk factors in adults with ASD (traits) is unclear. Autistic peer support workers and autism-advocates also emphasised the importance of identifying risk factors, because of the high prevalence of gastrointestinal problems in people with ASD. Therefore, our study investigated which psychological, behavioural, and biological factors are associated with gastrointestinal symptoms in adults with ASD or with autistic traits. We analysed data from 31,185 adults in the Dutch Lifelines Study. Questionnaires were used to evaluate the presence of an autism spectrum disorder diagnosis, autistic traits, gastrointestinal symptoms, psychological and behavioural factors. Biological factors were examined with body measurements. We found that not only adults with ASD but also adults with higher levels of autistic traits were at increased risk for gastrointestinal symptoms. Adults with ASD who experienced psychological problems (psychiatric problems, worse perceived health, chronic stress) had a higher risk for gastrointestinal symptoms than adults with ASD without these psychological problems. Moreover, adults with higher levels of autistic traits were less physically active, which was also associated with gastrointestinal symptoms. In conclusion, our study highlights the relevance of identifying psychological problems and evaluating physical activity when trying to help adults with ASD or autistic traits and gastrointestinal symptoms. This suggests that healthcare professionals should be more aware of behavioural and psychological risk factors when evaluating gastrointestinal symptoms in adults with ASD (traits). Show less
Beer, C.R.M. de; Nooteboom, L.A.; Domburgh, L. van; Vreugd, M. de; Schoones, J.W.; Vermeiren, R.R.J.M. 2022
Youth peer support workers (YPSWs) are young adults with lived experience of mental illness during childhood or adolescence who support young people receiving treatment in mental health services.... Show moreYouth peer support workers (YPSWs) are young adults with lived experience of mental illness during childhood or adolescence who support young people receiving treatment in mental health services. The contributions made by YPSWs are a promising development to facilitate consumer-centered and recovery-oriented care. Although the youth peer support workforce is expanding rapidly, structurally embedding YPSWs in practice is challenging. To overcome these challenges and thereby improve care for young people, insight into YPSW roles, barriers and facilitators for implementing and pursuing youth peer support (YPS) is a necessity. This systematic review examined the published literature to identify existing knowledge on YPSW roles in treatment settings, and the barriers and facilitators for implementing and pursuing YPS in practice. A total of 24 studies from a variety of youth serving contexts were included in this review. Thematic synthesis resulted in six YPSW roles and five themes with barriers and facilitators. The roles included the: engagement role, emotional support role, navigating and planning role, advocacy role, research role and the educational role. The themes explored the needs of YPSWs, experiences of YPSWs, relationships between service users and YPSWs, the collaboration process between YPSWs and non-peer staff, and organizational readiness. This review underlines that YPSWs likely are a valuable addition to numerous youth treatment contexts. Overall, the implementation of YPSWs is a multifaceted operation that requires careful planning. We recommend services to set clear and realistic expectations for YPSWs, to consider potential power imbalances between YPSWs and non-peer staff, to provide adequate resources to pursue YPS, and to approach the implementation of YPSWs with a growth mindset. Show less
To ensure the continuity of care during the COVID-19 pandemic, clinicians in Child and Adolescent Psychiatry (CAP) were forced to immediately adapt in-person treatment into remote treatment. This... Show moreTo ensure the continuity of care during the COVID-19 pandemic, clinicians in Child and Adolescent Psychiatry (CAP) were forced to immediately adapt in-person treatment into remote treatment. This study aimed to examine the effects of pre-COVID-19 training in- and use of telepsychiatry on CAP clinicians' impressions of telepsychiatry during the first two weeks of the Dutch COVID-19 related lockdown, providing a first insight into the preparations necessary for the implementation and provision of telepsychiatry during emergency situations. All clinicians employed by five specialized CAP centres across the Netherlands were invited to fill in a questionnaire that was specifically developed to study CAP clinicians' impressions of telepsychiatry during the COVID-19 pandemic. A total of 1065 clinicians gave informed consent and participated in the study. A significant association was found between pre-COVID-19 training and/or use of telepsychiatry and CAP clinicians' impressions of telepsychiatry. By far, the most favourable impressions were reported by participants that were both trained and made use of telepsychiatry before the pandemic. Participants with either training or use separately reported only slightly more favourable impressions than participants without any previous training or use. The expertise required to provide telepsychiatry is not one-and-the-same as the expertise that is honed through face-to-face consultation. The findings of this study strongly suggest that, separately, both training and (clinical) practice fail to sufficiently support CAP clinicians in the implementation and provision of telepsychiatry. It is therefore recommended that training and (clinical) practice are provided in conjunction. Show less
Introduction: Integrated care for children and their families is often organized in multidisciplinary teams. In these teams, evaluation and reflection during Multidisciplinary Team Discussions ... Show moreIntroduction: Integrated care for children and their families is often organized in multidisciplinary teams. In these teams, evaluation and reflection during Multidisciplinary Team Discussions (MTDs) are fundamental to learning, improving interprofessional collaboration, and increasing the quality of care. The effectiveness of MTDs varies widely in practice. Therefore, this study's objective was to identify facilitators and barriers for evaluation and reflection in MTDs, and concurrently formulate practical recommendations for professionals to improve their MTDs.Methods: This study's action research cycle consisted of a qualitative component to identify facilitators and barriers to evaluation and reflection in MTDs. We observed MTDs in multidisciplinary teams and interviewed professionals, parents, managers, and local policy makers. Concurrently, practical recommendations were iteratively developed during project team meetings, learning sessions, and a focus group.Results: Nine practical recommendations were formulated based on the identified facilitators and barriers, including preparatory activities to ensure purpose, timing, and relevant stakeholder involvement; specific points of attention during MTDs to ensure effectiveness; and tracking follow up steps after MTDs to ensure a learning process.Conclusion: The practical recommendations should be incorporated in daily practice to support professionals in Youth Care to increase satisfaction and improve effectiveness of evaluation and reflection during MTDs. Show less
Families with multiple needs across life domains often deal with a multitude of professionals from various organizations. This frequently results in fragmented support. In theory, integrated care... Show moreFamilies with multiple needs across life domains often deal with a multitude of professionals from various organizations. This frequently results in fragmented support. In theory, integrated care is considered the ultimate solution to overcome this fragmentation in Youth Care. However, in practice, providing integrated care is easier said than done. Consequently, professionals, organizations, and policy makers struggle to implement an integrated approach. It is becoming increasingly clear that integrated care requires more than merging organizations or establishing multidisciplinary teams. Many scholars claim that it is a necessity to evaluate integrated care in real-life settings, and thereby unravel facilitators and barriers for professionals.This dissertation aims to increase understanding of facilitators and barriers for professionals to provide integrated care from various perspectives: a systematic literature review, semi-structured interviews with professionals and parents, and an action-based research study in integrated care teams in the Netherlands. With the outcomes of this dissertation, clinical and research practices will be better informed about the complexity of integrated care on a professional level. Show less
Background To meet the needs of high-vulnerable families with severe and enduring problems across several life domains, professionals must improve their ability to provide integrated care timely... Show moreBackground To meet the needs of high-vulnerable families with severe and enduring problems across several life domains, professionals must improve their ability to provide integrated care timely and adequately. The aim of this study was to identify facilitators and barriers professionals encounter when providing integrated care. Methods Experiences and perspectives of 24 professionals from integrated care teams in the Netherlands were gathered by conducting semi-structured interviews. A theory-driven framework method was applied to systematically code the transcripts both deductively and inductively. Results There was a consensus among professionals regarding facilitators and barriers influencing their daily practice, leading to an in depth, thematic report of what facilitates and hinders integrated care. Themes covering the facilitators and barriers were related to early identification and broad assessment, multidisciplinary expertise, continuous pathways, care provision, autonomy of professionals, and evaluation of care processes. Conclusions Professionals emphasized the need for flexible support across several life domains to meet the needs of high-vulnerable families. Also, there should be a balance between the use of guidelines and a professional's autonomy to tailor support to families' needs. Other recommendations include the need to improve professionals' ability in timely stepping up to more intensive care and scaling down to less restrictive support, and to further our insight in risk factors and needs of these families. Show less
To overcome fragmentation in support for children and their families with multiple and enduring problems across life domains, professionals increasingly try to organize integrated care. However, it... Show moreTo overcome fragmentation in support for children and their families with multiple and enduring problems across life domains, professionals increasingly try to organize integrated care. However, it is unclear what facilitators and barriers professionals experience when providing this integrated care. Our systematic review, including 55 studies from a broad variety of settings in Youth Care, showed that integrated care on a professional level is a multi-component entity consisting of several facilitators and barriers. Findings were clustered in seven general themes: ‘Child’s environment’, ‘Preconditions’, ‘Care process’, ‘Expertise’, ‘Interprofessional collaboration’, ‘Information exchange’, and ‘Professional identity’. The identified facilitators and barriers were generally consistent across studies, indicating broad applicability across settings and professional disciplines. This review clearly shows that when Youth Care professionals address a broad spectrum of problems, a variety of facilitators and barriers should be considered. Show less
