Self-Report Stress Measures to Assess Stress in Adults With Mild Intellectual Disabilities—A Scoping Review
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SUBMITTER: de Witte M
PROVIDER: S-EPMC8573329 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundPeople with intellectual disabilities (IDs) face significant communication barriers when accessing health care services; they find it difficult to identify and describe conditions clearly enough to support practitioners in making an accurate diagnosis. In addition, medical professionals generally have little knowledge and understanding of the needs of people with ID, which may result in the use of consultation techniques that do not cater to their patients' skills.ObjectiveThis review aims to identify and synthesize the literature on alternative and augmentative communication technologies that are used to support adults with mild ID during the exchange of information with medical practitioners.MethodsWe performed a scoping review of studies published in English that describe the technologies that are used to promote communication with patients with mild ID during medical consultations. The databases searched were PubMed, ACM Digital Library, and Google Scholar. A qualitative framework-based approach was used to synthesize the data and discern key recurring themes across the identified literature.ResultsOf the 1557 articles screened, 15 (0.96%) met our inclusion criteria. The bulk of the communication aids used focused on low-tech solutions, including patient passports, note-based prompts, Talking Mats, health diaries, and easy-read information sheets. Their influence on current practice ranged from advancing medical professionals' knowledge of the health and communication needs of people with ID to increasing interagency collaboration, patient advocacy skills, and health promotion activities. The major barriers to the implementation of low-tech aids were a lack of portability and increased maintenance efforts. Only 3 studies explored the use of mobile apps to promote communication. Their findings indicated that high-tech solutions offer greater customization with regard to the accessibility and health care needs of people with ID.ConclusionsAlternative and augmentative communication technologies have the potential to increase the quality of care provided to patients with mild ID; however, little work has been carried out in this area. Greater emphasis must be placed on (high-tech) two-way communication aids that empower patients to become involved in decisions regarding their care. Quantitative evaluation methods should be used to discern the true benefits of such aids, and researchers should describe their study protocols in depth to promote replication and generalizability.
| S-EPMC8235287 | biostudies-literature
Project description:Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities (MID) who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly important. In order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID (N = 13) from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive (e.g., music listening) interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of "synchronizing" can be seen as a sub goal because it often precedes working on the other two goals of "tension release" or "direct relaxation," which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research.
| S-EPMC7759728 | biostudies-literature
Project description:Individuals with disabilities are regarded as a highly vulnerable population group, particularly as far as oral health is concern. However, few studies have assessed the impact of the oral condition on the quality of life of these individuals. Therefore, the aim of this study is to expand knowledge on the oral health status of the Portuguese adults with mild intellectual disability, and to assess how the patient's oral health is related to their quality of life. A sample of 240 adults with mild intellectual disabilities linked to the Portuguese Federation for Intellectual Disability, were interviewed using a previously validated version of the Oral Health Impact Profile. An oral health examination was also conducted using three oral health indexes: Clinical Oral Health Index (COHI); Clinical Oral Care Needs Index (COCNI) and the Clinical Oral Prevention Index (COPI). Sociodemographic characteristics and dental health factors were also collected, following statistical analysis. More than half of the individuals (54,9%) presented one or more problems of major to severe impact on health (COHI level 2); only 4,6% of the individuals do not need treatment or examination (COCNI level 0) and 85% of the study sample needs measures of educational or preventive action (COPI level 1). In 76,9% of the participants, oral health had impact on the quality of life. The most affected dimensions of life were physical pain with 61,9%, followed by psychological discomfort and psychological disability with 45,1% and 45%, respectively. With relation to oral health factors and sociodemographic variables it was verified that fewer teeth and higher self-perception of need for dental treatment had a negative impact on the quality of life. On the other hand, institutionalization and an increase in at least one category in the self-perception of the oral health status had a positive impact on the quality of life. Given the high burden of oral disease and the considerable impact on quality of life found in this study, the establishment of guidelines to improve the oral health and quality of life of these individuals should be regarded as imperative.
| S-EPMC5862473 | biostudies-other
Project description:Background: Autism spectrum disorder (ASD) is an early-onset and lifelong neurodevelopmental condition frequently associated with intellectual disability (ID). Although emerging studies suggest that ASD is associated with premature ageing and various medical comorbidities, as described for ID, data are scarce. Objectives: To determine the comorbidity burden and its association with distinct clinical presentation in terms of ASD severity, adaptive skills, level of autonomy, and drug exposure in a well-phenotyped sample of individuals with ASD-ID-the EFAAR (Frailty Assessment in Ageing Adults with Autism Spectrum and Intellectual Disabilities) cohort. Methods: A total of 63 adults with ASD-ID, with a mean age of 42.9 ± 15.1 years, were recruited from 2015 to 2017 from nine specialized institutions. They underwent detailed clinical examinations, including screening for comorbidities, ASD severity [Childhood Autism Rating Scale (CARS)], adaptive functioning [Vineland Adaptive Behavior Scale II (VABS-II)], autonomy [activities of daily living (ADLs)], and drug use [polypharmacy and the Drug Burden Index (DBI)]. The comorbidity burden was evaluated using the Cumulative Illness Rating Scale (CIRS-G) and its sub-scores [the severity index (CIRS-SI) and severe comorbidity (CIRS-SC)]. Results: We found a large range of comorbidities, including gastrointestinal disorders and mental and neurological diseases. Overall, 25% of our ASD-ID sample had chronic kidney disease with the associated increased cardiovascular risk factors. The comorbidity burden was high (mean CIRS-G total score of 10.6 ± 4.8), comparable with that observed among patients older than those in our population hospitalized in geriatric departments. Furthermore, the comorbidity burden positively correlated with age, decreased autonomy, and polypharmacy. Conclusion: The severity of the comorbidity burden associated with premature ageing in adults with ASD and ID highlight their crucial need of personalized medical care.
| S-EPMC6761800 | biostudies-literature
Project description:BackgroundThere is a lack of standardization regarding how to assess and categorize alcohol intake in older adults. The aim of this study was to systematically review methods used in epidemiological studies to define drinking patterns and measure alcohol consumption among older adults.MethodsA systematic search was conducted in the MEDLINE, PubMed, PsycINFO, EMBASE, and CINAHL databases for studies published from January 2009 to April 2021. Studies were included if they were observational studies with a quantitative design; the mean age of the participants was ≥ 65 years; questionnaires, screening tools, or diagnostic tools were used to define alcohol consumption; and alcohol consumption was self-reported.ResultsOf 492 studies considered, 105 were included. Among the 105 studies, we detected 19 different drinking patterns, and each drinking pattern had a wide range of definitions. The drinking patterns abstaining from alcohol, current drinking, and risk drinking had seven, 12 and 21 diverse definitions, respectively. The most used questionnaire and screening tools were the quantity-frequency questionnaire, with a recall period of 12 months, and the full and short versions of the Alcohol Use Disorders Identification Test, respectively.ConclusionNo consensus was found regarding methods used to assess, define, and measure alcohol consumption in older adults. Identical assessments and definitions must be developed to make valid comparisons of alcohol consumption in older adults. We recommend that alcohol surveys for older adults define the following drinking patterns: lifetime abstainers, former drinkers, current drinkers, risk drinking, and heavy episodic drinking. Standardized and valid definitions of risk drinking, and heavy episodic drinking should be developed. The expanded quantity-frequency questionnaire including three questions focused on drinking frequency, drinking volume, and heavy episodic drinking, with a recall period of 12 months, could be used.
| S-EPMC8675766 | biostudies-literature
Project description:INTRODUCTION:There is increasing attention on the cancer burden for adults with intellectual and developmental disabilities (IDD). Emerging evidence suggests there are differences in cancer experiences and outcomes for individuals living with IDD, from risk through survivorship. These differences may be attributed to features of the IDD, such as cognitive deficits and communication, as well as social determinants of health-like lower education levels and ableism. However, there is no comprehensive overview of the literature quantifying these potential disparities and describing the influencing factors. In this paper, we describe a scoping review protocol to systematically review published literature on cancer for adults with IDD. The purpose of this review is to identify differences in cancer risk, stage at diagnosis, treatment and survival along the cancer continuum for adults with IDD and outline potential contributing factors creating these disparities. METHODS AND ANALYSIS:We will follow Arksey and O'Malley's expanded framework for scoping reviews to conduct this review. We will systematically search electronic databases for peer-reviewed, published journal articles to identify appropriate studies in collaboration with a health science librarian. Two reviewers will independently review titles and abstracts followed by a full-text review to determine whether it meets inclusion criteria. A data chart for collecting and sorting information will be developed in consultation with the team. Results will be collated and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews: PRISMA-Scoping Reviews. Extracted information will be summarised quantitatively and qualitatively to meet review objectives. ETHICS AND DISSEMINATION:This scoping review will employ a methodology to identify literature related to cancer outcomes and experiences for adults with IDD. Results will be disseminated to relevant stakeholders who care for and support individuals with IDD at local, provincial and national levels and through publishing findings. By highlighting the disparities in the cancer system and gaps in the research, this scoping review can provide direction for future action.
| S-EPMC6858132 | biostudies-literature
Project description:BackgroundThe provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study.MethodA five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion.ResultsA total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence.ConclusionDescribing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities.
| S-EPMC9314007 | biostudies-literature
Project description:BackgroundWhilst there are studies that have systematically reviewed the psychometric properties of quality of life measures for children and young people with intellectual disabilities, these narrowly focus on disease or health conditions. The objective of this planned systematic review is therefore to collate, summarise, and critically appraise the psychometric properties of self-report health-related quality of life (HRQoL) and subjective wellbeing measures used by adolescents (aged 11-16) with an intellectual disability.MethodsWe designed and registered a study protocol for a systematic review of studies which explores the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. Electronic databases including PsycINFO, CINAHL, MEDLINE, and ERIC will be searched using predefined search terms to identify relevant studies. Quantitative and mixed-methods studies, and studies published in peer-reviewed journals or grey literature, will be included. Review papers, editorials, and case studies will be excluded. Eligible studies should identify self-report measures which assess HRQoL and subjective wellbeing among adolescents with intellectual disabilities. The methodological quality of the included studies will be assessed by applying the COSMIN Risk of Bias checklist. The quality of the evidence (i.e. the total body of evidence used for the overall ratings on each psychometric property of an instrument) will be evaluated in accordance with the modified GRADE guidelines.DiscussionThis systematic review will be among the first to systematically explore the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. By providing evidence-based knowledge about measures being used in HRQoL and subjective wellbeing research amongst this population, and more importantly how reliable and valid these measures are, the most suitable for use will be identified. Our findings will be of potential interest to clinicians, researchers, and service providers who need information about the methodological quality and the characteristics of measures to make informed decisions about the most reliable and valid tool for a specific purpose. The findings from this study will contribute to the knowledge surrounding available and appropriate measures to use for measuring HRQoL and subjective wellbeing of adolescents with intellectual disabilities, which are necessary to inform intervention development and future health policy.Systematic review registrationThe protocol has been registered at the International Prospective Register of Systematic Reviews (PROSPERO). The registration number is CRD42021231697 .
| S-EPMC9063098 | biostudies-literature
Project description:Self-determination is a human right that people with profound intellectual and multiple disabilities (PIMD) risk not being granted. Exploration of such topics and research in general has traditionally not included people with PIMD as sources of knowledge; rather, the perspective of others has been sought. Ethnographic methods highlighting descriptions of lived experience have been argued as a way of including such individuals, producing knowledge building on the person's perspective. Exploring the human right to be self-determined through ethnographic approaches can bring novel ways of understanding the concept, both about how to listen and learn from such experiences, and about implications for understanding self-determination. All people have the potential for self-determination, by being understood through embodied communication in caring relationships. By fostering relations with people with PIMD in sensitive, ethical ways, and addressing their profound dependency, their self-determination can be realized. WHAT THIS PAPER ADDS: Attentive engagement with people with lived experience of profound intellectual and multiple disabilities can inform both researchers and clinicians on self-determination. Through real-life descriptions, self-determination is demonstrated to move beyond independence and choice-making.
| S-EPMC10084087 | biostudies-literature
Project description:Individuals with intellectual disabilities (ID) are at high risk for high levels of sedentary behaviour. To inform the development of programmes to reduce sedentary behaviour, insight into the correlates is needed. Therefore, the aim of this study is to review the evidence on correlates of sedentary behaviour in adults with ID. We performed a systematic literature search in Ovid Medline, Ovid Embase, Web of Science and Google Scholar up to 19 January 2018, resulting in nine included studies that were published from 2011 to 2018. Correlates were categorized according to the ecological model. Studies predominantly focused on individual level correlates. Of those correlates studied in more than one study, having epilepsy was associated with less sedentary behaviour and inconsistent results were found for sex, genetic syndromes, weight status, physical health, mobility, level of ID, and mental health. Of the few interpersonal and environmental factors studied, only living arrangements were studied in more than one study, with inconsistent results. To date, we have limited and inconclusive evidence about correlates of sedentary behaviour in adults with ID. Only when future studies unravel correlates and determinants, across all domains of the ecological model, will the potential opportunities to improve health by reducing sedentary behaviour come within reach.
| S-EPMC6210806 | biostudies-other