Substance use among individuals with intellectual disabilities living independently in Flanders

Background: Over the past decades, there has been increased scientific and clinical interest in substance use among individuals with intellectual disabilities (ID). Despite raised interest and awareness in the topic, lack of supportive data on prevalence and risk factors highlights the need for ongoing research. The aims of this cross-sectional multicenter study were to examine the nature and extent of substance use in individuals with ID living independently, to investigate group differences in substance use and related problems, and to explore the role of substance-related knowledge and attitudes in substance use behaviors. Method: Participants were 123 individuals with mild to moderate ID receiving support from independent living services. Data were gathered by means of a structured interview strategy (i.e. the Substance Use and Misuse in Intellectual Disability - Questionnaire; SumID-Q). Results: Findings revealed that rates of lifetime use of licit and illicit substances were higher than those found in earlier studies among individuals with ID and the general population. While cannabis use was the only illicit substance reported, current tobacco and alcohol use were shown to be highly prevalent (48%-45.5%). Rates for the latter were similar to earlier studies among community samples of individuals with ID. In contrast to our hypotheses, few group differences in substance use behaviors were observed. Male gender was associated with age of onset of alcohol and tobacco use and tobacco use-related problems, while younger age was found to be associated with lifetime use of cannabis. No evidence was found regarding the role of knowledge; however, smokers and alcohol users rated tobacco and alcohol use more positively. Conclusion: This study demonstrated that individuals with ID living independently use a wide range of licit and illicit substances and present divergent levels and patterns of substance use. Notwithstanding the role of personal choice in substance use, more research is needed to better understand the nature and extent of substance use and related problems, as well as the role of substance-related knowledge and attitudes in individuals with ID

Theory-Driven Interventions

Theory-driven interventions can be defined as practices or interventions which are based on an explicit theoretical model including an articulation of the causal link between an intervention and its outcomes. A clear description is provided how and why the intervention leads to specific outcomes such as improved quality of life (QoL)

'Tell me about your child, the relationship with your child and your parental experiences' : a qualitative study of spontaneous speech samples among parents raising a child with and without autism spectrum disorder, cerebral palsy or down syndrome

Ample quantitative studies have shown that parents raising children with neurodevelopmental disabilities are prone to experience more stress and challenges in their parenthood. Notwithstanding the strength of this line of research, qualitative studies are crucial to grasp the complex reality of these parenting experiences. This qualitative study adopted the Self-Determination Theory to analyze parents' described experiences, appraising both challenges and opportunities in parents' psychological need for autonomy, relatedness, and competence. A multi-group comparative design is adopted to examine similarities and differences in the perspectives of 160 parents raising an adolescent with autism spectrum disorder, cerebral palsy, Down syndrome, or without a disability (M age child = 13.09 years, 67.5% boys). Parents' perspectives were examined through speech samples probing parents to talk spontaneously about their child, their relationship with the child, and their parental experiences. Forty samples in each group were randomly chosen from a larger dataset and were analyzed using deductive thematic analysis. Parents of children with a disability described more need-frustrating but also more autonomy-satisfying experiences compared to parents of children without a disability. Parents of children with autism spectrum disorder reported the most challenges concerning their relatedness with their child and their own parental competence. Parents raising a child with cerebral palsy expressed the most worries about their child's future and continuity of care. Parents of a child with Down syndrome described the most need-satisfying experiences in their family life. This study offers a more balanced view on the realm of parenting a child with a neurodevelopmental disability

Development of the Quality of Life in Youth Services Scale (QOLYSS) : content-related validity evidence based on adolescents’ and expert reviewers’ perspectives

Despite increased interest in the quality of life of younger populations, the quality of life of youngsters in vulnerable situations such as those in youth services remains under-researched. To gain insight into critical ingredients for understanding and enhancing the lives of these youngsters, appropriate assessment tools are needed. This study focuses on providing content-related validity evidence for the new Quality of Life in Youth Services Scale (QOLYSS) for adolescents in youth services. A sequential approach to item generation, refinement, and evaluation is presented. The initial item bank is devised by means of a thorough literature search and evaluated against findings from qualitative research among adolescents in youth services. In addition, a three-round international expert panel (N = 5) is convened to align identified items to the adopted quality of life framework, and to provide evidence on domain representation and relevance. Last, input is collected from adolescents in youth services themselves. More specifically, 20 group discussions and 13 individual interview sessions are organized to support 21 adolescents in critically assessing the content of the item bank on level of relevance, clarity, and coverage. The expert panel resulted in a provisional scale of 262 unique items that, based on adolescents’ input, is further reduced to a set of 88 items. Adolescents omitted items because of divergent reasons (e.g., content-overlap, self-evident character of the items, level of irrelevance). Explanatory qualitative information on the item selection process is provided. This study provides a detailed understanding of the content-related validity evidence of a new multidimensional quality of life scale. Moreover, it highlights the importance of acknowledging youngsters as critical partner in quality of life research and assessment

Quality of Life Outcomes for Adolescents in Youth Care

Internationally, Quality of life (QOL) research among children and adolescents has seen a marked proliferation over the past decades. Despite conceptual and methodological progress in this field, there still is much to learn about the QOL of young people involved in child and youth welfare and protection services. The present study investigates how adolescents between 12 and 18 years old in residential and non-residential youth care services (N = 271) perceive their QOL on the basis of a new specific measure: the Quality of Life in Youth Services Scale (QOLYSS). It further examined associations between demographic and placement-related factors and adolescents' QOL. Descriptive statistics, correlational analyses, and multiple regression analyses were carried out for the overall and domain-specific QOL outcomes. Results show that adolescents reported the highest QOL scores regarding self-determination, material well-being, and personal development. The highest proportions of low domain scores were found in emotional well-being, social inclusion, rights, and physical well-being. Female gender, residential care, and older age were identified as factors associated with lower QOL in a number of QOL domains. Concerning the placement-related factors, length in care and age at entry in care, no significant association was found. The findings of this study support the importance of upholding a broad and multifaceted approach in research and practice when evaluating adolescents' QOL. This study shed light on several specific areas that require particular attention when aiming to enhance the QOL of adolescents in everyday practice and draws attention to gender and contextual disparities

“Tell me about your child, the relationship with your child and your parental experiences”: A qualitative study of spontaneous speech samples among parents raising a child with and without Autism Spectrum Disorder, Cerebral Palsy or Down Syndrome

Ample quantitative studies have shown that parents raising children with neurodevelopmental disabilities are prone to experience more stress and challenges in their parenthood. Notwithstanding the strength of this line of research, qualitative studies are crucial to grasp the complex reality of these parenting experiences. This qualitative study adopted the Self-Determination Theory to analyze parents’ described experiences, appraising both challenges and opportunities in parents’ psychological need for autonomy, relatedness, and competence. A multi-group comparative design is adopted to examine similarities and differences in the perspectives of 160 parents raising an adolescent with autism spectrum disorder, cerebral palsy, Down syndrome, or without a disability (M age child = 13.09 years, 67.5% boys). Parents’ perspectives were examined through speech samples probing parents to talk spontaneously about their child, their relationship with the child, and their parental experiences. Forty samples in each group were randomly chosen from a larger dataset and were analyzed using deductive thematic analysis. Parents of children with a disability described more need-frustrating but also more autonomy-satisfying experiences compared to parents of children without a disability. Parents of children with autism spectrum disorder reported the most challenges concerning their relatedness with their child and their own parental competence. Parents raising a child with cerebral palsy expressed the most worries about their child’s future and continuity of care. Parents of a child with Down syndrome described the most need-satisfying experiences in their family life. This study offers a more balanced view on the realm of parenting a child with a neurodevelopmental disability