Journal of Intellectual & Developmental Disability最新文献

Background: Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings' psychosocial adjustment. Journal of Intellectual Disability Research, 57(9), 861-873. ; O'Neill, L. P., & Murray, L. E. (2016). Anxiety and depression symptomatology in adult siblings of individuals with different developmental disability diagnoses. Research in Developmental Disabilities, 51, 116-125. ). The current study describes psychological distress and symptoms of post-traumatic stress disorder (PTSD) in non-disabled siblings.

Method: Fifty-eight siblings and 86 parents participated.

Results: Parents reported that almost 40% of siblings had psychological symptoms that exceeded clinical cut-off scores; 58.9% of siblings reported symptoms of PTSD that exceeded diagnostic cut-off scores. Symptoms were significantly related to family organisation and control per parent report and negative affect per sibling report.

Conclusion: Growing up with a sibling with PWS may challenge adaptive resources of non-disabled siblings, leaving them vulnerable to psychological distress. Those who care for children with PWS are in a unique position to educate families about the potential vulnerability of non-disabled siblings. We encourage routine screening and support for affected family members, especially siblings.

Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.

Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.

Results: Two overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.

Conclusions: Families of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.

Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia.

Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data.

Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes.

Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity.

Method: The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT).

Results: The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81-0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude.

Conclusion: The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.

Background: Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence.

Method: Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis.

Results: On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle.

Conclusions: Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.

Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD."

Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used.

Findings: The essential meaning of the phenomenon was understood as "continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time." The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns.

Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents' challenges offers them the possibility to participate in society. Healthcare professionals should address the parents' perspectives related to the child's quality of life.

Background: The COVID-19 pandemic has affected education at all levels in various ways. This paper provides a review of the literature on the challenges of online learning for children with special educational needs and disabilities (SEND).

Method: In total, 17 studies from nine countries were analysed. The challenges of online learning for children with SEND reported by teachers and parents and the strategies applied to overcome the challenges were identified.

Results: The challenges of online learning were the need of parental support, routine change, inequities of resources and access to technology, lack of accommodations, and social isolation. There was a considerable lack of interventions aimed at promoting the educational outcomes of children with SEND.

Conclusions: The findings emphasise the importance of parent-teacher collaboration and communication. Suggestions for strategies to address challenges as well as for further research are also discussed.

Medical students receive very little instruction related to caring for people with intellectual/developmental disabilities. As a result, medical students and physicians alike report low levels of confidence in their ability to provide care to this population. In this piece, I provide a medical student's perspective on how to implement changes in the medical school curriculum such that our future physicians are more prepared to provide care to people with intellectual/developmental disabilities.

Background: The aim of this study was to investigate the demographic, clinical characteristics, and service systems of patients with autism spectrum disorder (ASD) and/or intellectual disability presenting to a large paediatric hospital emergency department (ED) with behaviours of concern (BOC) over a two-year period.

Method: Retrospective audit of ED presentations with BOC in patients with ASD and/or intellectual disability from 1 January 2019 to 31 December 2020, at the Royal Children's Hospital, Melbourne, Australia.

Results: There were 124 presentations (84 patients) in 2019 and 129 presentations (82 patients) in 2020. The mean age was 11.7 years. 55% arrived by ambulance, 24% required physical restraint, and 26% required sedation. Re-presentation was predicted by single-parent household, child protection involvement, and requirement of an interpreter.

Conclusions: Children and adolescents with ASD and/or intellectual disability regularly present to ED with BOC. New models of care are required to better support this highly vulnerable patient group.

Background: Mock or practice interviews have become a typical tool for transition programs for individuals with intellectual and developmental disabilities.

Method: We examined what interview skills were most associated with subsequent employment for individuals intellectual and developmental disabilities via practice interviews. The likelihood of employment was measured as a function of whether the interviewer responded that they would hire the individual.

Results: Results indicate that the following job interview skills were considered most important were: sits still and straight; understandable speech; good posture; appropriate voice; and appropriate handshake.

Conclusions: As these potential employers had hired individuals with intellectual and developmental disabilities, we suggest that their feedback would be particularly relevant.