Journal of Intellectual Disability Research最新文献

Background: People with intellectual disabilities (ID) and forensic histories face significant health inequalities, including reduced quality of life and prolonged stays in mental health hospitals. This is a global health issue, and there is an urgent need for evidence-based specific forensic interventions, models of care and service models to allow for effective discharge in the community, improve long-term outcomes and reduce healthcare costs.

Method: This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews. We have adapted Morrisey's framework to report outcomes of clinical models of care to include (i) effectiveness of treatment; (ii) patient safety; (iii) patient and family experience of care; and (iv) staff outcomes, skills and attributes.

Results: Fifty-six studies were included in this review, reporting on 49 interventions, models of care and service models (referred to as 'models'). Four forensic models of care were identified as best practice: the Discharge Pathway Protocol, the Care Pathway-Based Approach, the Psychological Treatment Pathway and the Forensic Intellectual Disability Secure Services (FIDSS) Model of Care. The first three have demonstrated effectiveness in reducing length of stay, facilitating timely discharges and improving patient outcomes for individuals with ID, while the FIDSS Model of Care represents a holistic and culturally sensitive approach emphasising person-centred care, rehabilitation and quality of life. The findings underscore the need for larger studies to explore predictors of successful discharge and long-term outcomes.

Conclusions: This is the first review to bring together 'clinical effectiveness' studies and those reporting on patient and family experience, as well as staff's needs, attributes and experiences. Policymakers and practitioners should consider the models identified here as frameworks for developing effective, person-centred care pathways, ensuring appropriate staff training and support, meaningful communication and work with the patient and their family/peers/support network and integrating community services to address the complex needs of this vulnerable population.

Background: Epilepsy is a chronic neurological disorder that is prevalent among people with intellectual disabilities, profoundly affecting various aspects of life. Understanding the association between epilepsy and reduced quality of life in this population may benefit from exploring self-determination, a key dimension of quality of life. Self-determination evolves throughout life, shaped by personal and environmental factors, including intellectual disabilities and access to supportive interventions. This review aims to map existing research to identify the personal and environmental factors that affect self-determination among people with intellectual disabilities and epilepsy.

Methods: Eight electronic databases (Embase, MEDLINE ALL, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Web of Science, ERIC and Google Scholar) were systematically searched in December 2022 and again on 2 October 2024 to update the previous search. All English-language studies presenting original research data on self-determination among people (above age 10) with intellectual disabilities and epilepsy were included, without date restrictions. The methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool (MMAT). To extract the data, we used the PCC (population, concept and context) framework. To analyse the data, we employed descriptive thematic analysis.

Results: Of the 1485 records identified, nine studies were eligible. These studies employed a qualitative design (n = 7) or were quantitative case studies (n = 2). Together, the studies included 68 participants with varying levels of intellectual disabilities and types of epilepsy and 115 caregivers. Five overarching themes were identified: (1) different approaches to managing epilepsy (n = 4); (2) information sharing and a trust in the collaboration with health care professionals (n = 5); (3) the need for recognition and autonomy in health care and support (n = 5); (4) the tendency of parents and professionals to take over decision making and associated concerns, responsibilities and emotions (n = 6); (5) the importance of considering personal preferences in care and support (n = 5).

Discussion: This review reveals the complex interplay between personal factors (i.e., individual coping strategies) and environmental factors (i.e., characteristics of the relationships with parents and professionals) in shaping self-determination among people with intellectual disabilities and epilepsy. These insights stress the importance of developing interventions to enhance self-efficacy and of specific training to equip caregivers and professionals with autonomy supportive skills to improve well-being at the individual level. This review also highlights a need for quantitative studies to enhance generalisability of findings.

Background: Individuals with intellectual disabilities (ID) are disproportionately exposed to several risk factors for suicidality. However, no meta-analysis has yet quantified the relative risk of suicide and self-harm, including suicide attempts, within this population. The aim of this project was to bring together and synthesise the research on suicidality among individuals with ID.

Methods: A systematic review and meta-analysis was carried out. Medline, Embase, Web of Science and PsycInfo were searched from inception through 4 August 2025. Observational studies with a quantitative design, evaluating the relative risk of suicide or self-harm, including suicide attempts, in individuals with and without ID, were included. Risk of bias was assessed using a shortened version of the Risk Of Bias In Non-randomized Studies-of Exposure (ROBINS-E) checklist. A random effects model was used to synthesise the results.

Results: Eleven primary studies were included in the review (n = 241 438). The level of ID severity was only presented in two articles. Compared to the general population, the pooled relative risk for death by suicide was 0.54 (95% CI 0.33 to 0.89, k = 6, I² = 77%) and the relative risk for self-harm was 3.16, (95% CI 2.3 to 4.35, k = 6, I² = 89%).

Conclusion: The findings suggest that individuals with ID have an elevated risk of self-harm but a lower risk of dying by suicide compared to the general population. However, these results should be interpreted with caution due to the limited number of primary studies and substantial between-study heterogeneity. Further, separate analyses of mild versus moderate-to-profound ID are warranted.