Journal of Intellectual & Developmental Disability最新文献

Background: Transitioning to paid employment is part of the natural progression to adulthood, yet the number of people with an intellectual disability who are competitively employed globally is low. This study systematically reviewed the literature to understand characteristics of programs that support competitive employment outcomes for young people with an intellectual disability.

Method: Five databases were searched. Two quality assessment tools were used: the Effective Public Health Practice Project (EPHPP) tool; and the Mixed Methods Appraisal Tool (MMAT). Content analysis was conducted using Braun and Clarke's theoretical thematic analysis framework.

Results: Key findings demonstrated the importance of early career planning, work exposure, post-secondary education and certification, and on-the-job training.

Conclusion: Further research, along with the application and adaptation of existing international studies presented in this systematic review, could drive system-wide changes prioritising competitive employment outcomes for young people with intellectual disability, enabling them to experience the benefits of competitive employment.

Background: The aim was to explore the executive function profile of a group of Mexican people with Down syndrome (DS) aged 12-30 years during the COVID-19 pandemic.

Aim: To analyse the relationships between mental, chronological age and eight domains of executive function.

Method: Participants were 42 people with DS with a chronological age (CA) of 12-30 years and a mean nonverbal mental age (MA) of 7 years. MA was evaluated with Raven's Progressive Matrices test and executive function with the Behaviour Rating Inventory of Executive Function (BRIEF-2); both were administered online.

Results: The Monitor, Emotional Control, Initiative, and Organisation of Materials scales showed strengths, while Working Memory, Plan/Organise, Shift, and Inhibit scales showed weaknesses. CA correlated negatively with seven of the eight executive domains. Chronologically older participants showed less impairment in skills such as inhibition, emotional control, working memory, and monitoring. Nonverbal MA correlated negatively with two domains: emotional control and monitoring.

Conclusion: Participants' executive profile during the COVID-19 pandemic was consistent with that reported in studies prior to the pandemic.

Background: A peer-led self-advocacy group, Our Voice SA, is used as a case study to explore how the social engagement of people with intellectual disability contributed to their self-advocacy about things that are important to them.

Method: Secondary analyses of data (interviews, observations and program data) were thematically analysed using Clifford Simplican's analytical lens of "freedom through encounter".

Results: Social engagement encounters in peer-led self-advocacy led to individual and group agency for freedom. The findings explore becoming known, seen, and heard; freedom to express what matters; and unfreedom: silencing self-advocacy.

Conclusion: A "freedom through encounter" lens is a useful perspective on how people navigate social inclusion to participate and challenge expectations. Allies were critical for overcoming structural, interdependent barriers, and supporting capacity for leadership and rights awareness that helped elevate the confidence and skills of people with intellectual disability to speak up.

Background: Fetal alcohol spectrum disorder (FASD) is a highly prevalent neurodevelopmental disability caused by prenatal alcohol exposure (PAE). Healthcare professionals (HCP) are key in prevention, diagnosis, and supporting individuals with FASD. This study explored the FASD knowledge, attitudes, and practices among HCP in Aotearoa, New Zealand (NZ).

Methods: We conducted an online survey of HCP working in NZ. The survey measured knowledge of FASD, beliefs and attitudes about FASD, experiences and practices with FASD and future training.

Results: Of the 96 participants, more than 90% self-reported a good or very good understanding of FASD, and around half had a patient with FASD. However, less than half felt prepared to support someone with FASD. Participants identified lack of professional training, services, and funding as barriers to support individuals with FASD.

Conclusion: We identified a need to provide training and promote awareness and recognition for HCP to support individuals with FASD.

Background: Support from staff plays an important role in quality of life for people with intellectual disability. This study focuses on service users' views of Active Support as good support and whether Active Support increases the quality of everyday support in group homes.

Method: Nine service users were interviewed at baseline and at follow-up one year after staff received Active Support training. Thematic analyses were used to develop themes.

Results: Three main themes were created: (1) Home is more than just a place, it is a feeling; (2) Good care is caring with accessible communication; and (3) Time is precious. Participants were more satisfied with most of the support at follow-up, particularly choice-making, control in everyday life, relationships, and emotional support.

Conclusions: Active Support corresponds well with service users' perceptions of good support. In future studies of Active Support service users' voices should be a part of the follow-up.

Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations.

Method: A qualitative inductive, thematic analysis was performed of 14 audio-taped consultations with intellectual disability physicians for patients with PIMD to explore how TK is represented and considered between parents and physicians.

Results: Parents conveyed their TK by sensing and perceptions of changes of their child's behaviour. Our findings demonstrate that parents of individuals with PIMD primarily shared TK concerning pain, sleeping issues, and epilepsy. Physicians recognised and incorporated parents' TK, highlighting its significance in patient care.

Conclusion: This study underscores the important role of TK in consultations for patients with PIMD. Parents' TK help to shape medical-decisions, urging physicians to validate parents' TK while relating this TK to other types of medical knowledge.