Journal of Intellectual & Developmental Disability最新文献

Background: Shared decision-making between patients and primary healthcare professionals positively impacts health outcomes. However, people with intellectual disability face additional barriers and require supported shared decision-making (SSDM) to participate. Little is known about how healthcare professionals use SSDM with this population. This paper explores the facilitators and barriers experienced, and strategies/resources employed by healthcare professionals working with people with intellectual disability.

Method: Ten purposively sampled primary healthcare professionals participated in semi-structured interviews. This descriptive qualitative study used content analysis. Findings were compared with a proposed model of factors influencing triadic (the person with intellectual disability, their caregiver and the healthcare professional) SSDM.

Results: Five factor categories emerged: previous training/experience; engagement and trust; effective collaboration with caregivers; organisational culture and contexts; and familiarity/confidence with communication support strategies and resources.

Conclusions: Healthcare professionals can leverage pre-existing skills and knowledge, but provision of targeted professional development may reduce anxiety and increase successful SSDM.

Background: The current study explored the perspectives of staff working with adults with intellectual disabilities and behaviours that challenge. We sought insight into their understanding of procedural fidelity and challenges faced when implementing behaviour support.

Method: We interviewed 15 staff members supporting adults with intellectual disabilities in residential settings. Participants included five front-line staff, five residential managers, and five clinicians. Interviews were transcribed and thematic analysis conducted.

Results: Issues identified by the participants related to four main themes: (1) Organisational and environmental constraints; (2) Understanding and monitoring of procedural fidelity; (3) Theory versus practice; (4) There's nothing positive about behaviour support.

Conclusion: Across staff groups, lack of understanding of fidelity emerged, as well as minimal accountability regarding behaviour support. Front-line staff felt isolated and under pressure. Greater emphasis on partnership, practice leadership, and positive feedback may give front-line staff the support needed to use behavioural interventions with high fidelity.

Background: Parental intellectual disability is considered a risk factor for child removal internationally. In New South Wales, Australia, authorised clinicians are court appointed experts who assess parenting and cognitive capacity in child protection matters.

Method: This study examined a sample of 20 assessment orders requesting parenting capacity and cognitive capacity assessments and corresponding authorised clinician reports.

Results: Authorised clinicians were requested to assess whether parental intellectual disability and cognitive impairment posed the risk of harm to children. Clinicians assessed parents as either "able with support" or "unable" to provide adequate care to their child.

Conclusion: Our findings highlight the law's conceptualisation of risk, parenting capacity, and cognitive impairment in binary terms (i.e., risk or no risk, able or unable), which in turn limits casework planning and clinicians' framing of parents' abilities. We provide recommendations to improve fair and equitable assessment processes for parents with cognitive difficulties, as well as access to timely and appropriate services.

Background: Opportunities for students with intellectual disability to attend postsecondary education have increased with the rise of inclusive post-secondary education (IPSE) supports, bringing the need to examine the experiences of students and their instructors.

Method: This qualitative study used semi-structured interviews with 12 university instructors of IPSE students and 10 IPSE students to examine experiences with course adaptations.

Results: Results indicate that instructors desired greater institutional support, training, and information as they felt unsure about their abilities to support students with intellectual disability and had varied understanding of accommodations and modifications. Students wanted to be seen as capable university students, utilised peer mentor supports, and were able to provide information about how they learned in a university setting.

Conclusions: The study found that students were valuable but often underutilised sources of information about their own access needs and sometimes worked through and around university systems. Implications for practice are provided.

Background: Service providers' knowledge and attitude of people with disabilities is the foundation for inclusion. This qualitative study explored awareness and intervention beliefs of intellectual disability in 106 teachers and 170 preservice students in Kuwait.

Method: After reading an unlabelled vignette about a young man with an intellectual disability, participants answered two open-ended questions to identify his problem and possible intervention. Data were coded and thematically analysed.

Results: The four causal belief themes involved cognitive, academic-occupational, psychosocial, and personal/life-skill factors. The three intervention themes that emerged promoted personal/professional growth, educational and career enhancement and rehabilitation/psychosocial support. Results revealed few participants accurately identified intellectual disability. Most attributed the problem to personal factors. Recommendations for intervention centred on personal/professional development and rehabilitation and psychosocial support, in line with the causal beliefs.

Conclusions: The findings are discussed in relation to the participants' local culture, and implications are suggested for training and assessment.

Background: Individuals with intellectual disability have deficits in postural balance and mobility. This study aimed to explore the effect of listening to music on postural balance and mobility in individuals with intellectual disability.

Method: Ten participants with intellectual disability and 10 participants with typical development performed postural balance and mobility tests [Time Up and Go (TUGT)/Ten Metre Walking (TMWT)] in three music conditions: no music, preferred music, and Mozart's Jupiter music.

Results: Results revealed that listening to Mozart's Jupiter decreased (p < 0.001) the center of pressure mean velocity values for both groups. In individuals with intellectual disability, the TUGT and the TMWT time to execution increased (p < 0.001) in the preferred music compared to the no music condition whereas the Mozart music has no significant effect (p ≥ 0.05).

Conclusion: Listening to Mozart's Jupiter enhanced static postural balance, whereas listening to the preferred music impaired mobility in individuals with intellectual disability.

Background: The aim of this study was to establish the perceived quality of life in twin siblings of individuals with profound intellectual and multiple disabilities (PIMD) living in Poland.

Method: Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded theory methodology principles.

Findings: The results of this study yielded insights into the quality of life of twin siblings of persons with profound intellectual and multiple disabilities. Inquired about their lives in the capacity of siblings, the interviewees provided a narrative around their experiences as twins of individuals with PIMD.

Conclusion: Research participants described both positive and negative experiences, indicating that having a sibling with profound intellectual and multiple disabilities affected their quality of life in diverse ways. In addition, the obtained results may be of cognitive merit to practitioners and researchers working with families of people with PIMD.

Background: Despite progress in implementing the rights outlined in the UN Convention on the Rights of Persons with Disabilities, individuals with intellectual disability encounter challenges in participating in daily life autonomously. Exclusion and stereotypes persist, impacting education, employment, and social participation. Inclusive sports programs, particularly the Special Olympics Unified Sports® program, aim to enhance social inclusion for these persons.

Method: This quantitative cross-sectional study compares attitudes across three groups: Unified Sports® partners, volunteers, and general population. Attitudes were measured using the Attitudes Toward Intellectual Disability Questionnaire.

Results: Results reveal that both Unified Sports® partners and volunteers exhibit more positive attitudes compared to the general population. More frequent contact with individuals with intellectual disability is associated with more positive attitudes.

Conclusion: While limitations exist, this study provides insights into the relationship between inclusive sports programs and attitudes toward individuals with intellectual disability, laying the groundwork for further research and practical applications.

Background: Researching the perspectives of people with profound intellectual and multiple disabilities (PIMD) presents complexity and uncertainty. Traditional research often prioritises rational, objectivist methods, which may overlook this complexity.

Aims: This study aimed to develop methodological cues for researchers studying the perspectives of people with PIMD by exploring how support workers and relatives deal with the uncertainty of uncovering these perspectives, drawing on Zinn's typology of strategies for dealing with uncertainty: "rational," "non-rational," and "in-between".

Method: We conducted interviews with support workers and relatives and observed interactions through shadowing.

Results: All of Zinn's strategies were observed, leading to six cues: (1) practicing an ethic of engagement; (2) valuing non-rational knowledge; (3) collaborating closely with caregivers; (4) acknowledging intertwined perspectives; (5) adopting phenomenological approaches; and (6) accepting uncertainty as inevitable.

Conclusion: These cues promote an "anti-sceptical ethic of engagement" that encourages researchers to actively attune to the perspectives of people with PIMD.

Background: Adults with Down syndrome have demonstrated lower rates of community participation, which is known to reflect a poorer quality of life. This cross-sectional study used survey data completed by 27 care partners of adults with Down syndrome to understand if lower community participation was associated with a recent decreased independence in activities of daily living.

Method: Decreased independence in activities of daily living were examined using the NTG-Early Detection Screen for Dementia. The frequency of participation was reported using the Guernsey Community Participation and Leisure Assessment.

Results: All changes in activities of daily living showed statistically significant associations with lower participation. Decreased independence in dressing was most strongly associated with a lower frequency of visiting museums (ρ=-0.533, p = .006).

Conclusions: Decreased independence in activities of daily living may be useful clinical indicators of lower community participation.