Journal of Intellectual Disabilities最新文献

Background: Instruments on parenting goals are often outdated and don't consider goals related to capabilities and needs of children with (severe) disabilities. This study aimed to develop an inclusive questionnaire on parenting goals applicable to parents of all children (0-21 years). Method: The iterative development process relied on academic and experiential expertise of parents and professionals; and included consultation of relevant literature, interviews with 6 parents of a child with severe to profound intellectual disabilities, a feedback round with diverse stakeholders, and a pilot study. Results: The Inclusive Parenting Goals Questionnaire (IPGQ) is a 99-item summated rating scale demonstrating high face and content validity. A renewed and inclusive definition of parenting goals was formulated, alongside extensive reflection on theoretically robust and practically relevant categorization. Discussion: The IPGQ is suitable for gaining insight into parents goal patterns and differentiating between (various groups of) parents. It also provides a basis for further discussion and elaboration.

The aim of this review was to identify the type, content, and effectiveness of psychological parenting interventions for parents of children with intellectual disabilities to enhance child behavior and/or parental well-being. A systematic search yielded 21 studies involving 1825 participants. Studies were evaluated according to intervention content, pre- and post-treatment and follow-up effect sizes, and risk of bias. We categorized the interventions into those targeting 'Child or interaction' (child behavior, interaction and learning, understanding disability), and those targeting 'Parent' (parental well-being) or both themes. All these interventions had positive effects on parental well-being or child behavior. Parental outcomes were improved by interventions targeting 'Parental well-being', as well as 'Child or interaction'. Child behavior showed improvements in programs focusing on 'Child or interaction', and in a mindfulness-based parental well-being program. During follow-up, most effects were sustained or further increased, but some studies showed no improvements over the control group.

An experience of belonging is commonly absent in the lives of adults labelled with intellectual disability, negatively impacting health, well-being, and quality of life. This ethnographic study, informed by critical disability and feminist relational theory, explored the belonging experiences of five adults labelled with intellectual disability in a Canadian city. Using participatory methods, the research identified mutuality, agency, and acceptance as key factors shaping their experiences. Findings emphasize the role of genuine relationships, the connection between agency and belonging, and the need to continue to build community capacity to embrace diversity. Findings call for further research exploring the relationship between belonging, mutuality, agency, and acceptance as one step towards collectively supporting the social inclusion of people labelled with intellectual disability. This work demonstrates how spaces, places, and relationships of belonging identified by people labelled with intellectual disability have generative potential - acting as promising examples of the conditions that enable belonging to flourish.

The acceptance of disability within society is increasing. However advances in clinical and medical procedures make it easier to test for genetic markers and to allow pregnant women to choose to terminate a pregnancy. One of the screenings offered is for Down syndrome. The availability of this screening is often cause for discussion within society. The way in which this screening test and subsequent results are delivered can prompt difficult emotions in parents. This narrative review aims to draw together papers exploring the opinions on prenatal testing from parents of individuals with Down syndrome. Twelve studies were analysed using Thematic Synthesis. Five superordinate themes were identified: decision making and reason for not testing, professionals, post-test emotions, societal opinions, opinions on the logistics of testing. The results suggest that there are still varied opinions and experiences of prenatal testing, often dependant on interactions with society and professionals.

People with intellectual disabilities have fewer opportunities to develop and strengthen self-determination. In this inclusive study, we aimed to understand how adults with intellectual disabilities perceive independence, including their definitions, the possibilities for achieving it, and the needs associated with it. Co-researchers with and without intellectual disabilities conducted individual and focus group interviews with 33 people with intellectual disabilities. Applying reflexive thematic analysis three main themes were generated: Conceptualizing their own independence at present and in the future, Person-specific factors that impact independence, and the need for change. Participants' perspectives on self-determination reflected the diversity of their experiences related to living conditions, competencies, attitudes of significant others, as well as characteristics arising from the disability itself or associated disorders and conditions. Inclusive design of the study proved an adequate methodology. The added value and implications for practice are discussed.

Background: The prevalence of limited communication abilities in adults with intellectual disabilities is high with adverse effects on social participation. To address their limited opportunities to engage in conversational interchanges, along with the shortage of professional workforce in many rehabilitation settings, we considered a volunteer-based program to enhance communication abilities. Method: In this preliminary study we employed a Friendly Visitor program, in which a group of four women (27-33 years-old) with mild-to-moderate intellectual disabilities were visited weekly for three months by a group of visitors, forming an unstructured social group. Results: Following the meetings, improvements were found for the participants in several pragmatic skills (conversational competence, e.g., initiation, asking questions) and language production abilities (e.g., the number of two-word-utterances). Conclusions: Such effects may promote independence, reduce isolation, and increase integration and quality of life. Further studies with larger samples and more rigorous designs are needed to confirm these initial findings.

BackgroundWomen with intellectual disability run an increased risk of dying of breast cancer compared to the general population. There is a clear connection between late detection and low participation in the mammogram screening program. This study aimed to explore the views and experiences of breast health care in women with intellectual disability.MethodSemi-structured interviews were performed individually and in small groups among 11 women with intellectual disability in Sweden.ResultsBreast cancer screening is not adapted to women with intellectual disability. Insufficient support and disrespectful treatment can cause ignorance, fear and anxiety. Familiarity with processes and personal networks are examples of improvement in participation.ConclusionPreventive breast health care is a sensitive topic for many women with intellectual disability that needs to be addressed. Preventive breast health care needs to be more inclusive and better adapted. Personal networks must not determine the possibility of preventive care.

The present research investigated the lived experiences of mothers of children with mild intellectual disabilities in a central city in Iran. The research method was qualitative and phenomenological type. Eleven families were selected from males with intellectual disabilities who were graduated from secondary vocational centers through purposeful sampling and participated in in-depth semi-structured interviews. The data was analyzed by Colaizzi method. The main themes extracted from the interviews with mothers were: employment and financial independence; physical and mental health; sexual and marriage issues; and life after the death of parents. The results showed the lived experiences of mothers and their concerns regarding employment, marriage, sexual issues, physical and mental health, and the future of their children. The results recommended that the government should take steps to remove life obstacles for adults with intellectual disabilities by modifying the methods of education and rehabilitation of people with intellectual disabilities in the country.

The study investigated the impact of motor dual-task training on gait and mobility in children with intellectual disabilities. Performance was assessed using the Timed Up and Go Test (TUGT) and the 10-Meter Walking Test (TMWT) before and after an 8-week training period, with participants divided into a Trained Group (n=12) and a Control Group (n=14). Results indicated that, across both groups and regardless of session, TUGT and TMWT scores were significantly higher (p < 0.001) in the motor dual-task condition compared to the single-task condition. Post-training, TUGT scores significantly decreased (p < 0.05) in the single-task condition. The Trained Group showed significant improvements in second motor-task performance on both TUGT (p < 0.05) and TMWT (p < 0.001) under dual-task conditions, while the Control Group showed no change. The study demonstrated the effectiveness of motor dual-task training in enhancing mobility in children with intellectual disabilities.