Journal of Intellectual & Developmental Disability最新文献

Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.

Background: Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations.

Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations.

Results: Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found.

Conclusions: The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.

Background: Despite the increasing longevity of people with intellectual disability, community care systems are ill prepared to support the choices of people with intellectual disabilities for ageing well. This study aims to understand ageing experiences among middle-aged adults with intellectual disabilities and their family carers with a focus on their perspectives of ageing well.

Method: Interviews were conducted with 10 middle-aged people with intellectual disabilities and 12 family carers; the interview data were thematically analysed.

Results: The participants highlighted the key elements of ageing well such as importance of living in a familiar place, having a reliable carer, nurturing independence, staying fit and healthy, and actively engaging in social activities.

Conclusions: The findings suggest that middle-aged adults with intellectual disabilities can best age well through future planning, along with support services tailored to respond to their changing needs as they age.

Aims and objectives: To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels.

Background: It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time.

Methods: A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool.

Results: The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder.

Conclusion: Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated.

Background: In forensic settings, patients with intellectual disabilities are overrepresented. A relative novel treatment approach for this population is schema therapy. The goals of schema therapy for offenders with intellectual disabilities are to reduce maladaptive emotional states and to reinforce healthy emotional states and enhancing the patient's ability to ask for help. No studies are examining the effectiveness of this approach.

Method: We examined the effectiveness of Schema Therapy for offenders with intellectual disabilities (ST-ID) in terms of emotional states, psychological complaints, and violence risk in six participants.

Results: Reliable change analyses showed significant improvements in emotional states and certain psychological complaints.

Conclusions: While many questions remain about the effectiveness of ST-ID, our study shows that offenders with ID can benefit from this psychological treatment.

Background: Children with intellectual disabilities are at risk of becoming victims of abuse. However, persons working with this population often lack knowledge on how to interpret signs of abuse. The purpose of this study was to identify and socially validate signs of abuse in children with disabilities.

Method: The study employed a mixed-method sequential design. The first phase consisted of a rapid review of publications that described signs of abuse in children with disabilities (n = 23). The second phase included social validation using an online survey. The participants were professionals working with disability and/or child abuse (n = 39).

Results: A significant difference between the 10 highest rated signs of abuse compared to the 10 lowest rated signs was found. Group comparisons between participants showed significant differences in the ratings of eight signs.

Conclusions: The results from the study can provide guidance to the accuracy of signs of abuse in children with disabilities.

Background: Given the importance of adaptive behaviour (AB) for the identification of intellectual disability and the design of intervention plans for people with Down syndrome (DS), this cross-sectional study explored AB in infants with DS, compared to infants with typical development (TD).

Method: we evaluated 60 infants (10-36 months) with ABAS-II (32 with DS, 28 with TD). Using the developmental trajectories method for data analysis, we compared AB between the two groups.

Results: We found significant differences between groups in most of the skills assessed, in favour of infants with TD. Three different patterns of trajectories were found for the AB and the relation between the groups: (1) no differences (Leisure and Self-Care Skills); (2) differences at the beginning of the trajectory and then a similar slope (Home Living, Self-Direction, Social and Motor Skills); and (3) a similar starting-point with differences in the trajectories (Communication, Community Use, Pre-Academic, and Health and Safety).

Conclusions: This empirical cross-sectional study contributes to the understanding of the development of AB in children with DS, showing both weak areas and skills that continue improving over time in these early years. Contributions and limitations of the study are discussed.

Objectives: To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress.

Methods: Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings.

Results: Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement.

Conclusions: The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed.

Background: Autistic adults with intellectual disabilities (ID) seem to be particularly vulnerable to potentially traumatic experiences and post-traumatic stress disorder (PTSD). Furthermore, this population may be at risk for a different set of traumatic experiences than the general population. However, knowledge is sparse concerning PTSD symptom manifestations in individuals with severe ID.

Method: Exploration of PTSD symptom trajectories and manifestations in an adult, autistic man with severe ID.

Results: Altered arousal/reactivity and problematic avoidance were the most easily observable symptoms. Avoidance seemed to become more generalised over time, and the impact of PTSD on behaviour, level of functioning, and quality of life was severe.

Conclusions: Negligence and coercion in services for autistic adults with ID may involve a traumatic potential for these individuals. Increased awareness of this risk is needed in service providers and mental health professionals.

Background: Body experience is an important facet of psychosocial functioning and health. However, to date no test exists to measure body experience in adults with mild intellectual disability and borderline intellectual functioning (MID-BIF). We therefore adapted the Body Experience Questionnaire (BEQ) to this group, resulting in the BEQ-mb, and evaluated its usability, comprehensibility, and reliability.

Method: The BEQ-mb was developed in five stages: concept development, focus group, verbal reports, pilot testing, and evaluation.

Results: The BEQ-mb is applicable in, and comprehensible by, adults with MID-BIF. Internal consistency is good for the total scale and the body awareness and body satisfaction subscales, but low for the body attitude subscale. Test-retest reliability is excellent for the total scale and the subscales.

Conclusion: The BEQ-mb unlocks new opportunities for clinical examination and research on body experience. Future research is needed to investigate its structural validity.