RESUMEN
The present study examines to what extent two core characteristics of the quality of life (QoL) construct were incorporated in the field of autism: (1) its subjective nature; and (2) its multidimensionality. Therefore, we reviewed 174 articles examining QoL in individuals with autism. The review showed parents reporting a lower QoL compared with autistic individuals themselves, especially on internal domains. This may suggest different expectations about what a good QoL may entail. Such an underestimation of QoL by others is commonly observed in individuals with disabilities (the so-called 'disability paradox'). For the multidimensionality of the QoL construct, our findings suggest that the narrower (and more unidimensional) construct of health-related QoL is often measured instead of QoL. Additionally, a substantial proportion of items did not measure QoL, but they evaluated characteristics that may or may not have an impact on QoL. Researchers and clinicians should be aware that QoL domains are selected and operationalized differently by different instruments. QoL may benefit from an exclusive focus on subjective aspects, which can be measured alongside more normative, objective characteristics of individuals or their environment.
Asunto(s)
Trastorno Autístico , Personas con Discapacidad , Formación de Concepto , Humanos , Padres , Calidad de Vida , Encuestas y CuestionariosRESUMEN
Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.
Asunto(s)
Familia , Padres , Niño , Desarrollo Infantil , Humanos , Lactante , InvestigadoresRESUMEN
The neurodiversity movement has introduced a new era for autism research. Yet, the neurodiversity paradigm and the autism clinic remain largely unconnected. With the present work, we aim to contribute to filling this lacuna by putting forward phenomenology as a foundation for developing neurodiversity-affirming clinical interventions for autism. In the first part of this paper, we highlight that autistic people face a severe mental health crisis. We argue that approaches focused on reducing autistic 'symptoms' are unlikely to solve the problem, as autistic mental health is positively correlated with autism acceptance and perceived quality of support provided, not necessarily with lack of 'symptomatologic severity'. Therefore, the development and dissemination of neurodiversity-affirming clinical interventions is key for addressing the autism mental health crisis. However, therapists and researchers exploring such neurodiversity-affirming practices are faced with two significant challenges. First, they lack concrete methodological principles regarding the incorporation of neurodiversity into clinical work. Second, they need to find ways to acknowledge rightful calls to respect the 'autistic self' within the clinic, while also challenging certain beliefs and behaviors of autistic clients in a manner that is sine qua non for therapy, irrespective of neurotype. In the second part of the paper, we introduce phenomenological psychology as a potential resource for engaging with these challenges in neurodiversity-affirming approaches to psychotherapy. In this vein, we put forward specific directions for adapting cognitive behavioral and interpersonal psychotherapy for autism.
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Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from "normal" parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection.
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In recent years, the interest in the relationship between exposure to green spaces and children's and adolescents' mental health has risen. This systematic review aims to provide an overview of observational studies assessing the association between empirical green space exposure with standardized outcome measures of mental health problems, mental well-being and developmental problems in children, adolescents and young adults. The PRISMA statement guidelines for reporting systematic reviews were followed. A PubMed and Scopus search resulted in the inclusion of 21 studies. The evidence consistently suggests a beneficial association between green space exposure and children's emotional and behavioral difficulties, particularly with hyperactivity and inattention problems. Limited evidence suggests a beneficial association with mental well-being in children and depressive symptoms in adolescents and young adults. These beneficial associations are resistant to adjustment for demographic and socio-economic confounders, which thus may represent independent links. Mediating factors and the variability of this association between different age groups are discussed. From a precautionary principle, evidence up to now demands the attention of policy makers, urban planners and mental healthcare workers in order to protect children's and adolescents' mental health in light of rapid global urbanization by providing sufficient exposure to green spaces.