Journal of applied research in intellectual disabilities : JARID最新文献

Background: People with intellectual disabilities are at increased risk of forced marriage compared to those without intellectual disabilities. In the UK, this risk is particularly, though not exclusively, associated with South Asian communities and is linked to the desire to secure long-term care.

Method: Focus groups and semi-structured interviews were undertaken with South Asian parents and family carers (n = 22) of adults with intellectual disability and the resultant data thematically analysed.

Results: Although securing care for their intellectually disabled relative was identified as a key motivator for forced marriage, other important themes also emerged. These included cultural and religious beliefs about disability and marriage, and limited understanding of relevant laws. Factors militating against forced marriage were also identified, including fears of abuse and neglect.

Conclusions: Implications for the provision of services and the need for improved access to information on forced marriage of people with intellectual disabilities are highlighted.

Background: The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centred methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM.

Methods: We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53).

Results: DCM provided new insights into the behaviours of clients, enabled professional reflection and gave new knowledge and skills regarding dementia and person-centred care. Appreciation of DCM further increased after the second cycle of application.

Conclusion: DCM is perceived as valuable in ID-care. Further assessment is needed of its effectiveness in ID-care with respect to quality of care, staff-client interactions and job performance.

Background: The prevalence of falls involving people with intellectual disabilities (ID) is high in comparison with the general population. There has been little evidence to date on the contributing risk factors. The objective of this review was to identify risk factors for people with intellectual disabilities.

Method: Literature searches were conducted using electronic databases to explore evidence on the subject, and narrative synthesis was employed to analyse the results.

Results: Seven risk factors were identified: decreasing physical ability, epilepsy, paretic conditions, impulsiveness, previous falls, incontinence and non-use of assistive equipment. Thematic analysis identified factors across the four concepts: the person, the situation, ongoing and protective factors.

Conclusion: Factors for falls involving people with intellectual disabilities are dynamic and multifactorial. Some are specific to the population; however, further research is required to develop the understanding of the possible reasons. The findings have implications across policy, education, practice and research.

Background: People with intellectual disabilities often have low health literacy as a result of their limited language comprehension. The aim of this study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of considering and seeking medical help from their GP. The study was intended as input for an online intervention supporting health literacy.

Methods: A qualitative study, in which 12 semi-structured interviews were conducted with people with mild intellectual disabilities and 4 with relatives of people with mild intellectual disabilities. The interviews were analysed following the principles of thematic analysis.

Results: Difficulties were experienced in the following activities: assessing and proactively reacting to health complaints, processing health information, communicating with a GP and retaining information from the consultation. Support workers and relatives play an important role in all these activities.

Conclusions: To increase the capacity of people with intellectual disabilities to manage their health and seek care from their GP, it is important to support them in the activities they find difficult. Recommendations resulting from the study have been incorporated in an online intervention.

Background: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales.

Method: All fifteen members from a support group for fathers/male carers of children with DDD were invited to take part in qualitative interviews and seven participated. The data were analysed following Braun and Clarke's (Qualitative research in psychology, 2006, 3:77) thematic framework.

Results: Within the group, fathers felt understood by similarly situated men, and a sense of connectivity and belonging. Fathers perceived exclusion elsewhere, including mixed-gender groups. Fathers felt permission to talk in a way consistent with their male identities, and valued receiving, and giving, support.

Conclusions: Mixed-gender support groups may not meet the needs of fathers, and there are potential benefits in providing male-only groups.

Background: The aim of this study was to examine the bidirectional longitudinal associations of several markers of fatness and physical fitness in adolescents with Down syndrome.

Methods: This study comprised a total of 111 adolescents (41 females), aged from 11 to 20 years with complete data at the baseline. We had a drop-out of <10% from the baseline to the 2-year follow-up. The ALPHA health-related fitness test battery for youth was used.

Results: Our results show that all fatness variables at the baseline were associated with a 2-year change in cardiorespiratory fitness (β ranging from -0.32 to -0.38; all p < .05), but not with muscular and motor fitness (p > .05). However, no associations were found between physical fitness components as predictors and fatness indicators (p > .05).

Conclusions: Results suggest that reducing fatness during adolescence might represent a modifiable factor to improve cardiorespiratory fitness at the 2-year follow-up, but not vice versa since associations were not bidirectional.

Background: Valid measures to assess either small or assisted performed movements of people with profound intellectual and multiple disabilities (PIMD) are required. We analysed the construct validity of the Actiwatch-2 to assess movement in people with PIMD.

Method: Twenty-two persons with PIMD were video recorded while wearing an Actiwatch-2. We used 15s-partial-interval recording to record upper body movement, body position and activity situation. Multilevel analyses were used to evaluate if the Actiwatch-2, based on produced counts, could detect changes in these factors.

Results: The presence versus absence of upper body movement and an activity situation in which participants were involved versus not involved resulted in significantly higher counts, with a large variety in predicted counts between participants. No relationship between body position and counts was found.

Conclusions: The Actiwatch-2 seems able to assess obvious upper body movement in people with PIMD, and whether there is involvement in an activity situation.

Background: This paper describes the theory and development of Take it personal! an indicated prevention programme aimed at reducing substance use in individuals with mild intellectual disabilities and borderline intellectual functioning.

Method: The process of the development of Take it personal! followed the steps of the Intervention Mapping protocol. Take it personal! is based on the theory that personality traits are an important construct to understand substance use (14-30 years old). A small modelling study was conducted with six adolescents to examine the feasibility, user-friendliness and potential effectiveness of the intervention.

Results: The results showed that the intervention has good feasibility and user-friendliness. Post-intervention evaluation of frequency, binge drinking and problematic use indicated that use was lower than at pre-intervention.

Conclusions: Take it Personal! can be a promising preventive intervention designed to reduce substance use in individuals in this target group. A larger scale study is needed to draw further conclusions.

Background: Mealtime support has a direct bearing on the diet-related health of men and women with intellectual disabilities as well as opportunities for expressing dietary preferences.

Method: Semi-structured interviews with a sample of direct support staff providing mealtime support to adults with intellectual disabilities.

Results: When managing tensions between a person's dietary preferences and ensuring safe and adequate nutrition and hydration, direct support staff are sensitive to a wide range of factors. These include the following: clinical advice; service users' rights to choose; their (in)capacity to weigh up risks; how service users communicate; the constituents of a healthy diet; and a duty to protect service users' health.

Conclusions: Those responsible for setting standards and regulating the care practices need to look beyond too simple ideas of choice and safety to recognize ways in which providing support at mealtimes is a complex activity with serious consequences for people's health and well-being.

Introduction: There is considerable international research indicating health disparities between people with and without intellectual disabilities. It is important that comparative studies use representative population samples. This study compares a total administrative population of adults with intellectual disability to a random stratified general population sample.

Methods: An administrative population of 217 adults with intellectual disability and a random stratified sample of 2,350 adults without intellectual disability participated. A questionnaire using the International Classification of Diseases (ICD-10) Chapter Headings was administered to all participants to enable a like-for-like comparison.

Findings: Unadjusted comparisons identified that adults with intellectual disability have a greater prevalence of health problems. These problems start early in adulthood and continue throughout life. However, they were less likely to experience cancers and musculoskeletal diseases.

Conclusions: These findings are consistent with the hypothesis that adults with intellectual disabilities have greater prevalence rates of health problems than the general population.