Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.
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Although the literature consistently shows an association between parental substance use disorders (SUDs) and child abuse, it is unknown what factors discern non-abusive and abusive parents with SUDs. This study aims to investigate which specific risk factors are associated with child abuse in clinically treated parents with SUDs in the Netherlands. It examines two groups of parents with SUDs in a clinical setting, with and without known instances of child abuse. These groups were compared on SUD-related factors such as the type and severity of the SUDs, and variables addressing psychological disability such as comorbid diagnoses and quality of life. Besides a marginally significant difference in severity of addiction and a lower mean age of the parents in the child abuse group, no significant differences were found. The small sample size and the inherent difficulty of studying SUDs in a clinical sample likely affected the results
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Research on follow-up outcomes of systemic interventions for family members with an intellectual disability is scarce. In this study, short-term and long-term follow-up outcomes of multisystemic therapy for adolescents with antisocial or delinquent behaviour and an intellectual disability (MST-ID) are reported. In addition, the role of parental intellectual disability was examined. Outcomes of 55 families who had received MST-ID were assessed at the end of treatment and at 6-month, 12-month and 18-month follow-up. Parental intellectual disability was used as a predictor of treatment outcomes. Missing data were handled using multiple imputation. Rule-breaking behaviour of adolescents declined during treatment and stabilized until 18 months post-treatment. The presence or absence of parental intellectual disability did not predict treatment outcomes. This study was the first to report long-term outcomes of MST-ID. The intervention achieved similar results in families with and without parents with an intellectual disability.
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The Sport Empowers Disabled Youth 2 (SEDY2) project encourages inclusion and equal opportunities in sport for youth with a disability by raising their sports and exercise participation in inclusive settings. It was important to ensure that the authentic views, wishes and feelings of youth with a disability regarding inclusion in sport were attained. Therefore, online focus groups were conducted with youth with a disability, their parents and sport professionals in Finland, Lithuania, Portugal and The Netherlands. Seven themes regarding inclusion in sport have been identified from these interviews: having a choice, sense of belonging, everyone can participate, same rights and equality, acknowledge that everyone is unique, inclusion is an ongoing process and terminology (language) is challenging.
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Background: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
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Background Little is known about the nature and reactions to sexual abuse of children with intellectual disability (ID). The aim was to fill this gap. Method Official reports of sexual abuse of children with ID in state care were examined (N = 128) and compared with children without ID (N = 48). Results Clear signs of penetration or genital touching by male (adolescent) peers or (step/foster) fathers were found in most ID reports. Victims often received residential care and disclosed themselves. Type of perpetrator seemed to affect the nature and reaction to the abuse. Cases of children with and without ID seemed to differ in location and reports to police. Conclusions Screening of (foster)homes seems crucial. Residential facilities should find a balance between independence of children and protection. Care providers should be trained in addressing sexual issues and sexual education, accounting for different types of perpetrators (peers/adults). Uniform reporting guidelines are needed.
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The purpose of this article is the presentation of a multidimensional guideline for the diagnosis of anxiety and anxiety-related behavior problems in people with intellectual disability (ID), with a substantial role for the nurse in this diagnostic process. DESIGN AND METHODS: The guideline is illustrated by a case report of a woman with ID with severe problems. FINDINGS: It appears that a multidimensional diagnostic approach involving multidisciplinary team efforts can result in a more accurate diagnosis and improved subsequent treatment. PRACTICE IMPLICATIONS: Nurses should be engaged in the diagnostic process because of their ability to make direct observations and to actively participate in carrying out all parts of the guideline.
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In a class or group of twenty children, - statistically - one child has a developmental language disorder (DLD). For children with DLD it is very difficult to keep up at school. The problems in the language also easily lead to miscommunication, which can cause behavioral problems. The timely recognition of a DLD is of great importance for early treatment. This way you can prevent or reduce problems at school, at home and in the children's leisure time. At the moment, children with DLD are not always identified early.Problems in language development can be identified early, for example at the age of two by child health workers. Parents, kindergarten teachers and elementary school teachers can also identify problems in children's language development. This requires a language screening instrument that can easily determine whether a child's language is 'at risk' or 'not at risk'. Early identification of language problems is important, but until today children are still missed. In this dissertation I present a new instrument for the identification of problems in the language development of children from one to six years old, the Early Language Scale (ELS). I also describe the development of the milestones in the language development of children, how good the current screening at the age of two at the health care office is and what parents think of this language screening. The ELS appears to detect DLD in young children well and can therefore make an important contribution to the detection of these problems at the primary health care.
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BackgroundThe Uganda version of Pediatric Evaluation of Disability Inventory (PEDI-UG) was culturally adapted and validated from the PEDI-US, a tool used to evaluate the functional capability of children with or without disability aged 6 months to 7.5 years in the areas of self-care, mobility and social domains. A group of Ugandan occupational therapists with experience of using PEDI-UG participated in this study to explore the question: What do Ugandan occupational therapists say about the utility and value of the PEDI-UG for children with disabilities?MethodsA qualitative research design was chosen to explore the participants' viewpoints concerning the utility and value of the PEDI-UG for children with disabilities. Purposive sampling was used to recruit health professionals for the focus group discussions. Focus group discussions were carried out with 18 occupational therapists and nurses. Thematic analysis was performed to establish patterns and themes.ResultsSeveral challenges concerning the contextual use of PEDI-UG were reported. For example, PEDI-UG being culturally adapted in two languages (English and Luganda) makes it difficult for health professionals to use it for children whose caregivers are non-English or non-Luganda speakers. In addition, participants reported adapting the way they asked the assessment questions, struggling with how they interpreted the scores and observing the child's skills if required during PEDI-UG interviews with caregivers.ConclusionsThe findings of this study suggest that health professionals are challenged with the use of the PEDI-UG assessment in diverse cultural contexts and/or languages. These challenges are important considerations for the PEDI-UG translation in different Uganda cultural languages and training health professionals on the use and value of PEDI-UG for children with disabilities.
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