Intellectual disability, exercise and aging: the IDEA study: study protocol for a randomized controlled trial.

BACKGROUND: People with intellectual disabilities (ID) have low levels of physical activity (PA) together with accelerated aging profiles. Adherence to PA interventions for persons with ID is low based on barriers such as motivation. The IDEA study aims to determine the effect of two types of exercise programs, continuous aerobic (CAEP) vs sprint interval training (SIT), designed for seniors with ID on health-related physical fitness, cardiovascular parameters, quality of life (QoL), and emotional and cognitive function. METHODS: In this trial, ninety seniors with ID between the ages of 40 and 75 yrs. from occupational health centers from the Autonomous Region of Catalonia (Spain) will be recruited. Participants will be randomly allocated to the CAEP, SIT, and control group. Both intervention groups will train 3 days/week, 1.5 h/day over 6 months. Outcome variables will be assessed at baseline, 6 months and 12 months. The outcome variables include weight, height, body composition, cardiorespiratory fitness, muscle strength, balance, flexibility, cardiovascular parameters (blood pressure, pulse-wave velocity, pulse-wave analysis), QoL and cognitive function. The intervention effect will be determined with mixed models with repeated measures to assess changes in the outcome variables over time (baseline to month 12) and between study arms. Relationship between variables will be analyzed with appropriate regression analyses. DISCUSSION: Various studies reported on CAEP and SIT as exercise interventions for persons with ID with beneficial outcomes on body composition, fitness and blood pressure. To our knowledge, this is the first trial designed to analyse the positive changes on fitness, PA levels, cardiovascular, QoL and cognitive function promoted by CAEP training and SIT in seniors with ID. The findings of this study will assist in the development of more effective exercise interventions to ensure better compliance and adherence to exercise in seniors with ID. TRIAL REGISTRATION: The trial is registered at the ISRCTN registry. Registration number: ISRCTN43594228 . Registered 11 February 2019 - Retrospectively registered.

Medicare Spending and the Adequacy of Support With Daily Activities in Community-Living Older Adults With Disability: An Observational Study.

Background: Identifying factors that affect variation in health care spending among older adults with disability may reveal opportunities to better address their care needs while offsetting excess spending. Objective: To quantify differences in total Medicare spending among older adults with disability by whether they experience negative consequences due to inadequate support with household activities, mobility, or self-care. Design: Observational study of in-person interviews and linked Medicare claims. Setting: United States, 2015. Participants: 3716 community-living older adults who participated in the 2015 NHATS (National Health and Aging Trends Study) and survived for 12 months. Measurements: Total Medicare spending by spending quartile in multivariable regression models that adjusted for individual characteristics. Results: Negative consequences were experienced by 18.3% of participants with disability in household activities, 25.6% with mobility disability, and 20.0% with self-care disability. Median Medicare spending was higher for those who experienced negative consequences due to household ($4866 vs. $4095), mobility ($7266 vs. $4115), and self-care ($10 935 vs. $4436) disability versus those who did not. In regression-adjusted analyses, median spending did not differ appreciably for participants who experienced negative consequences in household activities ($338 [95% CI, -$768 to $1444]), but was higher for those with mobility ($2309 [CI, $208 to $4409]) and self-care ($3187 [CI, $432 to $5942]) disability. In the bottom-spending quartile, differences were observed for self-care only ($1460 [CI, $358 to $2561]). No differences were observed in the top quartile. Limitation: This observational study could not establish causality. Conclusion: Inadequate support for mobility and self-care is associated with higher Medicare spending, especially in the middle and lower ends of the spending distribution. Better support for the care needs of older adults with disability could offset some Medicare spending. Primary Funding Source: The Commonwealth Fund.

Influencing Factors of Transportation Costs Regarding Healthcare Service Utilization in Korea.

BACKGROUND: Transportation costs can be a barrier to healthcare services, especially for low-income, disabled, elderly, and geographically isolated populations. This study aimed to estimate the transportation costs of healthcare service utilization and related influencing factors in Korea in 2016. METHODS: Transportation costs were calculated using data from the 2016 Korea Health Panel Study. A total of 14,845 participants were included (males, 45.07%; females, 54.93%), among which 2,148 participants used inpatient and 14,787 used outpatient care services. Transportation costs were estimated by healthcare types, transportation modes, and all disease and injury groups that caused healthcare service utilization. The influencing factors of higher transportation costs were analyzed using multivariable regression analysis. RESULTS: In 2016, the average transportation costs were United States dollars (USD) 43.70 (purchasing power parity [PPP], USD 32.35) per year and USD 27.67 (PPP, USD 20.48) per visit for inpatient care; for outpatient case, costs were USD 41.43 (PPP, USD 30.67) per year and USD 2.09 (PPP, USD 1.55) per visit. Among disease and injury groups, those with neoplasms incurred the highest transportation costs of USD 9.73 (PPP, USD 7.20). Both inpatient and outpatient annual transportation costs were higher among severely disabled individuals (inpatient, +USD 44.71; outpatient, +USD 23.73) and rural residents (inpatient, +USD 20.40; outpatient, +USD 28.66). Transportation costs per healthcare visit were influenced by healthcare coverage and residential area. Sex, age, and income were influencing factors of higher transportation costs for outpatient care. CONCLUSION: Transportation cost burden was especially high among those with major non-communicable diseases (e.g., cancer) or living in rural areas, as well as elderly, severely disabled, and low-income populations. Thus, there is a need to address the socioeconomic disparities related to healthcare transportation costs in Korea by implementing targeted interventions in populations with restricted access to healthcare.

Relationships Between Wheelchair Services Received and Wheelchair User Outcomes in Less-Resourced Settings: A Cross-Sectional Survey in Kenya and the Philippines.

OBJECTIVE: To explore the relationships between wheelchair services received during wheelchair provision and positive outcomes for users of wheelchairs. DESIGN: Secondary analysis of cross-sectional data. SETTING: Urban and periurban communities in Kenya and the Philippines. PARTICIPANTS: Adult basic manual wheelchair users (N=852), about half of whom reported having received some wheelchair services with the provision of their current wheelchairs. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed a survey that included questions related to demographic, clinical, and wheelchair characteristics. The survey also included questions about the past receipt of 13 wheelchair services and 4 positive outcomes for users of wheelchairs. The relationships between individual services received and positive outcomes were assessed using logistic regression analyses. In addition to assessing individual services and outcomes, we analyzed a composite service score (the total number of services received) and a composite outcome score (≥3 positive outcomes). RESULTS: The top 3 individual services from the perspective of relationships with the composite outcome score were "provider did training" (P=.0009), "provider assessed wheelchair fit while user propelled the wheelchair" (P=.002), and "peer group training received" (P=.033). The composite service score was significantly related to "daily wheelchair use" (P<.0001), "outdoor unassisted wheelchair use" (P<.0001), "high performance of activities of daily living" (P=.046) and the composite outcome score (P=.005), but not to the "absence of serious falls" (P=.73). CONCLUSIONS: The receipt of wheelchair services is associated with positive outcomes for users of wheelchairs, but such relationships do not exist for all services and outcomes. These findings are highly relevant to ongoing efforts to optimize wheelchair service delivery.

Oral health and associated factors among preschool children with special healthcare needs.

OBJECTIVE: To investigate the oral health status and associated factors among preschool children with special healthcare needs. SUBJECTS AND METHODS: This was designed as a cross-sectional study. Dental examination was provided to 383 children at Special Child Care Centres. Covariates of interest included children's age, developmental profile, oral health-related behaviours and family social-economic status. The association between children's dental caries experiences, dental plaque deposition and gingival health status were analysed by negative binomial regression, multiple factor ANOVA and binary logistic regression when appropriate. RESULTS: The proportion of children with caries, gingival inflammation and plaque were 30.3%, 89.6% and 95.0%, respectively. Final regression models indicated that (a) tooth decay was associated with dental visit experiences, night bottle-feeding habit, fluoridated toothpaste and monthly income; (b) plaque deposition was associated with intellectual functioning, practical skills, night bottle-feeding habit, use of toothpaste, initiation of toothbrushing habit, toothbrushing duration and additional cleaning habit; (c) gingival status was associated with children's intellectual functioning and toothbrushing frequency. CONCLUSIONS: Poor oral hygiene status existed among preschool children with special healthcare needs. Children's oral health status was associated with their developmental profile, oral health-related behaviours and social-economic status.

Mapping first-line health care providers' roles, practices, and impacts on care for workers with compensable musculoskeletal disorders in four jurisdictions: A critical interpretive synthesis.

BACKGROUND: First-line health care providers are the primary access point for workers' benefits. However, little is known about their impact on quality of care and return-to-work. Our objective was to critically compare literature on the practices of first-line providers for workers with musculoskeletal injuries in Ontario and Quebec (Canada), Washington State (United States), and Victoria (Australia). METHODS: A critical interpretive synthesis of peer-reviewed scientific literature was conducted. The search across six databases yielded 59 relevant publications that were critically appraised. RESULTS: Three themes emerged: 1) how policies about first-line health care providers' modulate worker access to care, 2) how these providers' roles, practices, and training shape disability management, and 3) how the quality of care and disability outcomes are evaluated. CONCLUSIONS: First-line health care providers have a critical influence on workers' trajectories of care. A focus on their role while taking the complexity of the context into account will help orient future policy changes.

The Impact of Adaptive Functioning and Oral Hygiene Practices on Observed Tooth-Brushing Performance Among Preschool Children with Special Health Care Needs.

OBJECTIVES: To investigate the impact of adaptive functioning and oral hygiene practices on tooth-brushing performance among preschool children with special health care needs (SHCN). METHODS: A cross-sectional study was conducted in Special Child Care Centers. Children's tooth-brushing performance was assessed by a standardized 13-step pro forma. Information regarding children's socio-economic status, adaptive skills, and oral hygiene practices were collected. Bivariate analysis and ANCOVA were used to explore the potential factors which might be associated with children's tooth-brushing performance. RESULTS: The tooth-brushing assessment was provided to 379 children with SHCN. Approximately 3% of the recruited children performed the whole tooth-brushing procedure independently. The number of tooth-brushing steps practiced by those children was 4.47 ± 3.56. Children who had established tooth-brushing habit before age one practiced more tooth-brushing steps than children who brushed their teeth after age one (p = 0.029). When children's age, gender, and socio-economic status were adjusted, children who had established regular tooth-brushing habit or children who had high levels of adaptive skills showed better tooth-brushing performance than their peers. Children who used gauze, cotton swab, or dental floss to clean their teeth practiced fewer key tooth-brushing steps than their peers who had never used additional cleaning approaches (p = 0.038). CONCLUSIONS FOR PRACTICE: Children's tooth-brushing performance was associated with adaptive skills and oral hygiene practices. Tooth-brushing training should be provided to children with SHCN in early childhood. For children who had limitations in adaptive functioning, parental assistance or supervision is recommended to guarantee the efficacy and safety of daily tooth brushing.

Improving the quality of primary care for adults with intellectual and developmental disabilities: Value of the periodic health examination.

OBJECTIVE: To implement a Health Check protocol for patients with intellectual and developmental disabilities (IDD) and assess outcomes. DESIGN: Retrospective chart review and staff survey. SETTING: Two Ontario family health teams. PARTICIPANTS: Of 276 patients with IDD identified, 139 received the Health Check (Health Check group). A convenience sample (N = 147) of clinical staff participated in the survey. MAIN OUTCOME MEASURES: The protocol included patient identification, invitation, and modified health examination. Chart review assessed completion of 8 preventive maneuvers, and clinical staff were surveyed on their comfort, knowledge, and skills in care of patients with IDD. Logistic regression analyses were used to compare outcomes for the Health Check and non-Health Check groups, adjusted for practice site. RESULTS: Documentation of blood pressure, weight, body mass index, and influenza vaccination was significantly higher (P < .001) in the Health Check group, exceeding 70% of patients. Screening rates were higher for mammograms (63% vs 54%), fecal occult blood testing (39% vs 23%), and diabetes testing (80% vs 61%), but not significantly so, and they were similar to general population rates. Papanicolaou test rates were low for both groups (34% vs 32%). Staff comfort and skills were rated significantly higher (P < .05) for those who performed the Health Check. Still, fewer than half thought they had the necessary skills and resources to care for patients with IDD. CONCLUSION: Performing the Health Check was associated with improved preventive care and staff experience. Wider implementation and evaluation is needed, along with protocol adjustments to provide more support to staff for this work.

Comprehensive preventive care assessments for adults with intellectual and developmental disabilities: Part 2: 2003 to 2014.

OBJECTIVE: To determine if there has been an increase in preventive care among adults with intellectual and developmental disabilities (IDD) as a result of the publication of the Canadian consensus guidelines on the care of adults with IDD in 2006 and 2011. DESIGN: Ecological study. SETTING: Ontario. PARTICIPANTS: The study group consisted of community-dwelling adults with IDD between the ages of 40 and 64 living in Ontario identified in 2009-2010 through administrative health and social services data. The comparison group consisted of a propensity-score-matched sample of the remaining Ontario population. MAIN OUTCOME MEASURES: A combined measure of a health examination or a Primary Care Quality Composite Score (PCQS) of 0.6 or greater, or both. Both measures were identified using administrative health data. RESULTS: Adults with IDD were 2.04% more likely to have had a health examination or a PCQS of 0.6 or greater before 2011-2012 and 1.70% less likely after 2011-2012. Adults without IDD were 1.03% more likely before 2011-2012 and 13.74% less likely after 2011-2012 to have had a health examination or a PCQS of 0.6 or greater. Male patients with IDD were 15.60% more likely and male patients without IDD were 7.39% less likely to have had a health examination or PCQS of 0.6 or greater compared with female patients. CONCLUSION: Despite the publication of the guidelines there has not been a corresponding increase in the uptake of the annual health examination or in the quality of preventive care among adults with IDD. More is required to reduce this documented inequity in care.

Approach to providing care for aging adults with intellectual and developmental disabilities.

OBJECTIVE: To provide an approach to caring for aging adults with intellectual and developmental disabilities (IDD) in the context of the onset of new or worsening chronic illnesses and the need for planning for the end of life. SOURCES OF INFORMATION: A MEDLINE search identified few review articles in the past 10 years. This review builds on relevant articles and the experiences of the author and colleagues working with aging adults with IDD and their families, physicians, and other caregivers. MAIN MESSAGE: To provide care to this patient group, physicians must understand the diverse cognitive abilities of adults with IDD; the risk factors for physical and mental illnesses; concerns related to diagnostic overshadowing; and the need for coordinating individual care plans for those with serious and terminal illnesses. CONCLUSION: Primary care physicians can provide and coordinate appropriate care for patients with IDD as they face the health challenges associated with aging and dying. Being aware of patients' baseline cognitive abilities and decision-making skills, as well as changes in cognitive abilities associated with aging and complexity of illness, will help determine patients' capacity to consent, identify appropriate treatment choices, and guide coordination of care. Further research and consensus statements are needed to guide best practices based on the Canadian experience and to allow continuing development of caring, professional, and competent providers to support aging adults with all levels of IDD.

Implementation of Health Links coordinated care plans for adults with intellectual and developmental disabilities: Cross-sectoral pilot program.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD) are a complex population that could benefit from improved care coordination across health and social sectors, as they experience poorer health and have higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions. OBJECTIVE OF PROGRAM: To pilot a novel, enhanced model of care coordination for complex patients with IDD. PROGRAM DESCRIPTION: Health Links is a provincial care-coordination program for patients with complex health care needs. This pilot program adapted Health Links to include a guide and training specific to adults with IDD to ensure that these patients' needs were met and high-quality, efficient care was provided. CONCLUSION: A tailored care-coordination approach for adults with IDD was able to identify complex patients in need and successfully bridge cross-sectoral care.

Teaching family medicine residents about care of adults with intellectual and developmental disabilities.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD), a group with complex health problems and inequities in access to health care, look to family physicians for primary care. OBJECTIVE OF PROGRAM: To enable residents to learn and demonstrate competencies that are unique to the care of adults with IDD with minimal extra time and resources required of the residency program. PROGRAM DESCRIPTION: In their regular family medicine teaching practices, residents undertake planned encounters with adults with IDD involving comprehensive health assessments with physical examinations. Tools to implement the Canadian guidelines for primary care of adults with IDD are available to support the residents in their encounters. Background information in the form of self-learning and small group learning resources, field notes with rubrics to assess residents' development of competencies, and faculty development resources are also available. CONCLUSION: It is important to include such planned clinical experiences in family medicine residency curricula because people with IDD have special needs that are difficult to learn about in other settings. It is a benefit to residents to have patients and families actively contributing to teaching.

Palliative care for patients with communication and cognitive difficulties.

OBJECTIVE: To help increase the confidence of both caregivers and clinicians in providing palliative care to adults with intellectual and developmental disabilities (IDD) using an easy-to-follow framework to improve and overcome barriers to effective palliative care in this population. QUALITY OF EVIDENCE: A literature review was conducted to explore recent best evidence to address these palliative care needs and to allow for a focused opportunity to consider the details of implementing clinical practice guidelines in the palliative care context. Evidence ranges from level I to level III. MAIN MESSAGE: Pain and psychological and emotional distress are important issues for individuals with IDD, as they can be difficult to assess and measure, and often present atypically, especially in those with limited communication skills. Further, little is known about end-of-life needs in the adult population with IDD, especially for those living in community residences. The conducted literature review of patient, caregiver, and clinician experiences exposed considerable barriers, including incorrect assumptions about patients' capacity to understand and discomfort of both caregivers and clinicians with open communication. This has resulted in exclusion of adults with IDD from their own care, which has proven harmful. Maximizing time in familiar surroundings and establishing trust and continuity are crucial. Sometimes trial and error with empiric use of comfort medications is necessary, but this can be mitigated with careful examination of distress patterns and judicious use of diagnostic testing. It is always best to integrate the palliative approach into the existing pattern of care. CONCLUSION: The validated tools and recommendations provided will assist with communication, symptom interpretation, treatment decisions, advanced care planning, addressing grief, and important considerations in end-of-life care.

Primary care of adults with severe and profound intellectual and developmental disabilities: Family physicians' perspectives on patient-physician relationships.

OBJECTIVE: To explore family physicians' perspectives on the development of the patient-physician relationship with adult patients living with severe or profound intellectual and developmental disabilities (IDD). DESIGN: Constructivist grounded theory. SETTING: St John's, NL, and across Canada. PARTICIPANTS: Fifteen family physicians currently caring for patients with severe or profound IDD. METHODS: Data were collected via in-depth, semistructured interviews conducted in-person or by telephone. Interviews were audiorecorded and transcribed verbatim. Field notes were documented immediately by the interviewer and discussed with the research team. Memos in the form of reflective notes served as additional sources of data. MAIN FINDINGS: From the perspective of family physicians, the core process in the development of the patient-physician relationship was acceptance. This acceptance was bidirectional. With respect to family physicians accepting patients, family physicians had to accept that their patients with severe and profound IDD were as equally deserving of their respect as any other patient-as unique individuals with their own goals and potential. With respect to patients accepting their family physicians, family physicians had to seek out signs of acceptance from their patients to fully appreciate and develop a trusting relationship. This bidirectional process of acceptance required family physicians to adapt the way they practised (eg, by spending more time with the patient and finding alternate forms of communication). It also required family physicians to define their role (eg, building trust and being an advocate) in a relationship that had the patient as the primary focus but simultaneously acknowledged the important involvement of the caregiver. CONCLUSION: For family physicians, the process of acceptance seems to underpin the development of the patient-physician relationship with adult patients with severe or profound IDD. Findings highlight the need for family physicians to adapt the way they deliver care to these patients and define their role in these complex relationships. Ultimately, this study highlights family physicians' acceptance of their patients' humanity regardless of the nature of the relationship that was created between them.

What adults with intellectual and developmental disabilities say they need to access annual health examinations: System navigation support and person-centred care.

OBJECTIVE: To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs). DESIGN: Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD. SETTING: Ontario. PARTICIPANTS: A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs. METHODS: Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs. MAIN FINDINGS: Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this support were also identified (lack of rapport, perception of unfriendliness, perception that the physician is too busy to tend to needs, and perception that the physician did not want to perform AHEs). CONCLUSION: For adults with IDD, system navigation support and person-centred care were central to accessing AHEs. In collaboration with informal caregivers, physicians have an important role in reducing barriers to patients accessing this valuable preventive care opportunity. Physicians can fulfil some of the needs disclosed by adults with IDD related to attending AHEs by offering support for scheduling appointments, by linking patients with IDD to resources that facilitate appointment attendance, and by increasing consultation duration.

[Health care of people with visual or hearing disabilities]. / Estado actual de la atención sanitaria de personas con discapacidad auditiva y visual: una revisión breve.

Visual or hearing disabilities account for 20% of people reporting some sort of disability. We performed a literature review about the interaction that people with visual or hearing disabilities have with the health care system. We found that these people report a lower quality of life and have a higher frequency of physical and psychological ailments. They also have difficulties to obtain an adequate health care and report a paucity of trained professionals to take care of them.

Examining determinants of lifestyle interventions targeting persons with intellectual disabilities supported by healthcare organizations: Usability of the Measurement Instrument for Determinants of Innovations.

BACKGROUND: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. METHOD: With semi-structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. RESULTS: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi-levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. CONCLUSION: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

Deaf Child and Adolescent Consumers of Public Behavioral Health Services.

This study describes the demographic profiles of 1,164 deaf children and adolescents who are consumers of the public behavioral health services in the state of Maryland. Up until recent years, data about deaf adults, children, and youth were unavailable. Over the past couple years, items to the Outcomes Measurement System (OMS) Interview included questions such as "primary language" and boxes to indicate if the participant was "deaf." The data presented in this paper are extracted from the state database of all consumers of public behavioral health services from January 1, 2016 to January 1, 2018. The sample included 1,166 deaf children and adolescents. The results include a demographic profile of deaf children on the OMS items, including the likelihood of being diagnosed with specific disorders. The results of this sample were also compared to the aggregate results on hearing children and adolescents. Results indicate that deaf youth are homeless at lower rates than their hearing counterparts. They are employed less and less likely to be arrested than their hearing counterparts. Reports of smoking, psychosocial functioning, school performance, and substance use were similar to hearing children and adolescents.

Intellectual disability content within tertiary medical curriculum: how is it taught and by whom?

BACKGROUND: Individuals with intellectual disability experience higher rates of physical and mental health conditions compared with the general population, yet have inequitable access to health care services. Improving the workplace capacity of medical professionals to meet the needs of this population is one way to reduce barriers to care and improve health outcomes. Using diverse pedagogy appropriate to learning outcomes to teach medical students about intellectual disability is a necessary step in improving future workplace capacity. However, there is a lack of research into how, and by whom, medical students are taught about intellectual disability. The aim of this study was to investigate this through an audit of Australian medical school curricula. METHODS: The Deans of Australian universities that provide accredited medical degrees (n = 20) were invited by email to participate in a two-phase audit of intellectual disability content in the curricula. Phase 1 (n = 14 schools) involved the Dean's delegate completing a telephone interview or questionnaire regarding medical course structure. If intellectual disability content was identified, a unit coordinator was invited to complete a survey regarding how this content was taught and by whom (Phase 2; n = 12 schools). RESULTS: There was considerable variability across Australian medical schools regarding methods used to teach content about intellectual disability. Didactic teaching methods were most frequently used (62% of units included some form of lecture), but workshops and tutorials were reasonably well represented (34% of units contained one or both). Thirty-six percent of units included two or more teaching methods. Almost all schools (83%) used some problem- and/or enquiry-based learning. Educator backgrounds included medicine, nursing, and allied health. A majority of schools (n = 9, 75%) involved people with intellectual disability designing and teaching content, but the extent to which this occurred was inconsistent. CONCLUSIONS: Renewing curricula around intellectual disability across all medical schools by introducing varied teaching methods and the inclusion of people with intellectual disability would assist students to develop knowledge, skills, attitudes, and confidence in intellectual disability health. Such renewal offers the potential to reduce barriers to service this population regularly face, thereby improving their health outcomes.

"If I had been given that information back then": An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood.

BACKGROUND: Young people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. METHOD: The methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1-hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. RESULTS: Three themes emerged: (a) "Recognizing and supporting information needs," which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) "Getting creative," which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) "Gaps and advice for the future," which highlighted the need for real-life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. CONCLUSION: Clinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real-life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers.