Journal of Intellectual Disabilities最新文献

ObjectiveThe current mixed-methods systematic review evaluated available literature to find out which attachment-based interventions have been implemented for people with intellectual disability and whether they are efficacious and acceptable.MethodsFive databases were searched (in July 2023 and April 2024), using terms related to intellectual disability and attachment-based interventions. The search yielded 793 papers; 15 papers (13 studies) met inclusion criteria. Relevant data was extracted from each study. Paper quality was appraised using the Mixed Methods Appraisal Tool. Findings were synthesised in an integrative review.ResultsOf the included studies, 7 had people with intellectual disability as participants and 6 had their caregivers. Interventions included education, psychotherapy, technology assisted therapy, video interaction guidance/feedback and circle of security. Research methods varied.ConclusionsEvidence for efficacy and acceptability of interventions was mixed but promising. Most studies had limited generalisability. Therefore, further research is required. Pre-registration with PROSPERO [351287].

Many families of adults with intellectual and/or developmental disabilities in India experience difficulty in accessing services/supports, due to lack of awareness/knowledge of disability rights/laws and available services, and in accessing the services. There remains insufficient research on the information needs of these caregivers and on designing interventions that aim to increase their awareness/knowledge about human rights and supports/services. A strengths-based mixed methods needs assessment was conducted to understand the information needs of these family caregivers. Results showed that caregivers ≥50 years had significantly higher information needs than younger caregivers. Specifically, caregivers with no proficiency in English needed more information on the available services for the care recipients (n = 100). Qualitative results showed that very few caregivers had any awareness or access to information on human rights, disability-related laws/policies or available supports/services (n = 15). Study findings underscore the government's role in improving awareness-raising initiatives and imparting the information in multiple Indian languages.

This qualitative study aimed to explore the experiences of nine fathers with neurodevelopmental disabilities with children in foster care, including their fathering role, visits and formal and informal support. Systematic text condensation was the analysis method used. The respondents' experience of fatherhood revealed two categories: I accept my situation and I am frustrated. Though self-confident, the fathers expressed ambivalence between acceptance and frustration with their role. The study shows that more should be done to provide adapted support for these vulnerable fathers with children in foster care, although they seldom demand such support. Social workers and professionals from the rehabilitation team within the healthcare service should be aware of gendered settings, specifically norms of masculinity. Increased efforts from the social workers may reduce the risks of detachment in parenthood because engaged and informed fathers are in the children's best interests.

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.