Sexuality in People with Intellectual Disability: Review of Literature

Sexuality is an important component in people’s lives, however forgotten in people with intellectual disabilities. Faced with this situation, people with intellectual disabilities tend to be in a situation of vulnerability with greater risk of sexual abuse and altered sexual behavior that give them difficulties to have a lasting relationship. A review of the literature was performed in the databases: Medline, Embase, Lilacs and Scielo. Included studies must mention the perception of people with intellectual disabilities about their sexuality in relation to: education, difficulties, strengths, gender identification, the role of the family and their close circle. 898 articles were reviewed by title and abstract. In total, 38 references were selected for full-text review. Being evident the importance of sexuality in people with intellectual disability, this topic should be addressed from a personal level and their close circle (family and support networks) through sex education about: sexuality, anatomy and functioning of the body, sexual abuse, use of contraceptives, and sentimental relationships. Sexuality in people with intellectual disability should be approached in a multidimensional way. An overarching theme is to teach family and educators not to diminish the value that represents sexuality in people and to assist when needed to address the process of sexual development and sexuality.     

A Critical Appraisal of Sexuality and Relationships Programs for People with Acquired Brain Injury

Sexuality and Disability - This literature review presents a critical appraisal of the dominant approaches toward the sexuality and relationships of people with acquired brain injury. In...     

Peer Educators in the Facilitation of Sexuality and Respectful Relationship Education for People with an Intellectual Disability: A Scoping Review and Narrative Synthesis

A scoping review was conducted to identify how peer-education models are being used in sexuality and respectful relationship education for people with a disability. The search was conducted in August 2021 using the Joanna Briggs framework to scope and map the literature and research activity. Using strict criteria, 7 online databases, grey literature and reference lists were searched for resources written or published in the last 15 years (2006–2021). Relevant sources were shortlisted and assessed by the two authors. Six sources met the criteria for inclusion in this review. In total, four educational programs are described and discussed. The results identify four sexuality and respectful relationship programs that met screening criteria: (1) “Telling it like it is!”, (2) “Sexual Lives and Respectful Relationships”, (3) “Talking about sex and relationships: the views of young people with learning disabilities”, and (4) “Health, Safety & Sexuality Training for You & Me”. Peer-educators experienced increased confidence and feelings of empowerment, while people without an intellectual disability reported a greater understanding of the challenges and experiences of people with a disability. The use of peer educators to deliver sexuality and respectful relationship education for people with intellectual disability is a promising education model with multiple potential benefits for participants. However, more research is needed to understand the consequences and limitations of such programs.

     

Talking About Sexuality in the Context of Rehabilitation Following Traumatic Brain Injury: An Integrative Review of Operational Aspects

Sexuality and Disability - An integrative review of the literature reporting operational aspects (how, when, who, with what) of rehabilitation professionals’ discussion of sexuality with...     

Public Opinion on the Sexuality of People with Intellectual Disabilities: A Review of the Literature

Sexuality and Disability - People with intellectual disabilities (PID) experience the same range of sexual thoughts, feelings, desires, and activities as anyone else. However, the public’s...     

Scientific Evidences of Calorie Restriction and Intermittent Fasting for Neuroprotection in Traumatic Brain Injury Animal Models: A Review of the Literature

It has widely been accepted that food restriction (FR) without malnutrition has multiple health benefits. Various calorie restriction (CR) and intermittent fasting (IF) regimens have recently been reported to exert neuroprotective effects in traumatic brain injury (TBI) through variable mechanisms. However, the evidence connecting CR or IF to neuroprotection in TBI as well as current issues remaining in this research field have yet to be reviewed in literature. The objective of our review was therefore to weigh the evidence that suggests the connection between CR/IF with recovery promotion following TBI. Medline, Google Scholar and Web of Science were searched from inception to 25 February 2022. An overwhelming number of results generated suggest that several types of CR/IF play a promising role in promoting post-TBI recovery. This recovery is believed to be achieved by alleviating mitochondrial dysfunction, promoting hippocampal neurogenesis, inhibiting glial cell responses, shaping neural cell plasticity, as well as targeting apoptosis and autophagy. Further, we represent our views on the current issues and provide thoughts on the future direction of this research field.     

Traumatic Brain Injury in Older Adults: Characteristics,Outcomes, and Considerations. Results From the American Association for the Surgery of Trauma Geriatric Traumatic Brain Injury (GERI-TBI) Multicenter Trial

ObjectivesDescribe the epidemiology of a large cohort of older adults with isolated traumatic brain injury (TBI) and identify predictors of mortality, palliative interventions, and discharge to preinjury residence in those presenting with moderate/severe TBI.DesignProspective observational study of geriatric patients with TBI enrolled across 45 trauma centers.Setting and ParticipantsInclusion criteria were age ≥40 years, and computed tomography (CT)-verified TBI. Exclusion criteria were any other body region abbreviated injury scale score >2 and presentation at enrolling center >24 hours after injury.MethodsThe analysis was restricted to individuals aged ≥65 and stratified into 3 age groups: young-old (65–74), middle-old (75–84), and oldest-old (≥85). Demographic, clinical, and injury data were collected. Predictors of mortality, palliative interventions, and discharge to preinjury residence in the moderate/severe TBI group were identified using Classification and Regression Tree and Generalized Linear Mixed Models.ResultsOf the 3081 subjects enrolled in the study, 2028 were ≥65 years old. Overall, 339 (16.7%) presented with a moderate/severe TBI and experienced a 64% mortality rate. A Glasgow Coma Scale (GCS) score <9 was the main predictor of mortality, CT worsening (odds ratio [OR] = 1.7, P < .04), cerebral edema (OR = 2.4, P < .04), GCS <9, and age ≥75 (OR = 2.1, P = .007) were predictors for palliative interventions, and an injury severity score ≤24 (OR = 0.087, P = .002) was associated with increased likelihood of discharge to preinjury residence in the moderate/severe TBI group.Conclusion and ImplicationsIn this prospective study of a large cohort of older adults with isolated TBI, comparisons across the older age groups with moderate/severe TBI revealed that survival and favorable discharge disposition were influenced more by severity of injury rather than age itself. Indicating that chronological age alone maybe insufficient to accurately predict outcomes, and increased representation of older adults in TBI research to develop better diagnostic and prognostic tools is warranted.     

Value of Nonpharmacological Interventions for People With an Acquired Brain Injury: A Systematic Review of Economic Evaluations

ObjectivesAcquired brain injury (ABI) has long-lasting effects, and patients and their families require continued care and support, often for the rest of their lives. For many individuals living with an ABI disorder, nonpharmacological rehabilitation treatment care has become increasingly important care component and relevant for informed healthcare decision making. Our study aimed to appraise economic evidence on the cost-effectiveness of nonpharmacological interventions for individuals living with an ABI.MethodsThis systematic review was registered in PROSPERO (CRD42020187469), and a protocol article was subject to peer review. Searches were conducted across several databases for articles published from inception to 2021. Study quality was assessed according the Consolidated Health Economic Evaluation Reporting Standards checklist and Population, Intervention, Control, and Outcomes criteria.ResultsOf the 3772 articles reviewed 41 publications met the inclusion criteria. There was a considerable heterogeneity in methodological approaches, target populations, study time frames, and perspectives and comparators used. Keeping these issues in mind, we find that 4 multidisciplinary interventions studies concluded that fast-track specialized services were cheaper and more cost-effective than usual care, with cost savings ranging from £253 to £6063. In 3 neuropsychological studies, findings suggested that meditated therapy was more effective and saved money than usual care. In 4 early supported discharge studies, interventions were dominant over usual care, with cost savings ranging from £142 to £1760.ConclusionsThe cost-effectiveness evidence of different nonpharmacological rehabilitation treatments is scant. More robust evidence is needed to determine the value of these and other interventions across the ABI care pathway.     

Promoting Resilience Following Traumatic Brain Injury: Application of an Interdisciplinary,Evidence‐Based Model for Intervention

With an increasing instance of traumatic brain injury and little advancement over recent decades in the rehabilitation of brain injury survivors and their family members, focus has shifted toward the establishment of effective whole‐family resilience promotion interventions. Using the Brain Injury Family Intervention as a model, clinicians constructed two curriculum‐based interventions grounded in resilience theory and drawing from the interdisciplinary approaches of neuropsychology and marriage and family therapy: (a) the Resilience and Adjustment Intervention, for individual survivors of traumatic brain jury, and (b) the Therapeutic Couples Intervention, designed to increase relational satisfaction in couples following a traumatic brain injury. The present study outlines the need for the integration of resilience tenets into rehabilitation techniques, summarizes the empirical justification for the use of an interdisciplinary approach, and offers an overview with implementation specifics regarding these two newly designed interventions.     

Health State Preference Weights for the Glasgow Outcome Scale Following Traumatic Brain Injury: A Systematic Review and Mapping Study

Background

Valid and relevant estimates of health state preference weights (HSPWs) for Glasgow Outcome Scale (GOS) categories are a key input of economic models evaluating treatments for traumatic brain injury (TBI).

Sexuality and Intimacy for People with Congenital Physical and Communication Disabilities: Barriers and Facilitators: A Systematic Review

Barriers and facilitators affecting the social activities of people with congenital physical and communication disabilities are well documented. However, little is known of their experiences of developing sexual and intimate relationships. This study conducted a systematic review of the literature to address this gap in knowledge. Ten online databases were searched for relevant papers between 1990 and 2014. In addition, hand searches of Augmentative and Alternative Communication Journal and the Sexuality and Disability Journal were conducted. Fifteen papers were identified and appraised. The thematic coding approach identified six principal themes. However, the content analysis revealed that the majority of the literature focused on the social needs of people with physical and communication disabilities. Despite evidence that people with disabilities are sexually active, there is little focus on the experiences of people with disabilities developing intimacy and expressing sexuality. The few references to sexuality in the relevant literature focused on protection from abuse, though some researchers called for improved counseling on sexuality and relationships, and improved access to sexual health services. Further research is required to focus on practical and theoretical outcomes to enhance social relationships and sexuality, and offer lovers who use AAC real advice in their search for intimacy.     

Evaluation of the Effect of a Continuous Treatment: A Machine Learning Approach with an Application to Treatment for Traumatic Brain Injury

For a continuous treatment, the generalised propensity score (GPS) is defined as the conditional density of the treatment, given covariates. GPS adjustment may be implemented by including it as a covariate in an outcome regression. Here, the unbiased estimation of the dose–response function assumes correct specification of both the GPS and the outcome‐treatment relationship. This paper introduces a machine learning method, the ‘Super Learner’, to address model selection in this context. In the two‐stage estimation approach proposed, the Super Learner selects a GPS and then a dose–response function conditional on the GPS, as the convex combination of candidate prediction algorithms. We compare this approach with parametric implementations of the GPS and to regression methods. We contrast the methods in the Risk Adjustment in Neurocritical care cohort study, in which we estimate the marginal effects of increasing transfer time from emergency departments to specialised neuroscience centres, for patients with acute traumatic brain injury. With parametric models for the outcome, we find that dose–response curves differ according to choice of specification. With the Super Learner approach to both regression and the GPS, we find that transfer time does not have a statistically significant marginal effect on the outcomes. © 2015 The Authors. Health Economics Published by John Wiley & Sons Ltd.     

Louisiana Implementation of the National Fetal and Infant Mortality Review (NFIMR) Program Model: Successes and Opportunities

Common features of successful, local-level, Fetal Infant Mortality Review (FIMR) Programs are identified by the National Fetal and Infant Mortality Review (NFIMR) Program, including medical records abstraction and home interviews, case reviews by a case review team (CRT), and community systems action recommendations implemented by a community action team (CAT). This paper presents Louisiana’s FIMR program, an adaptation of NFIMR recommendations. In 2001, the Louisiana Maternal and Child Health Program began a statewide FIMR Network (LaFIMR) based on the NFIMR model. Geographic areas of focus, case identification, staffing, data collection methods, and CRT and CAT membership and activities include modifications of the NFIMR recommendations unique to LaFIMR implementation. Adaptations made to the NFIMR model were advantageous to LaFIMR’s success. Specifically, LaFIMR geographic areas of interest cover multiple natural communities. Compared with independent FIMR programs elsewhere, LaFIMR represents a Title V Program-based coordinated network of regional LaFIMR teams offering opportunities for expanded partnerships. Primary sources for LaFIMR case identification include obituaries and hospital logs, with secondary identification available through vital records. Improvements in vital records data systems are expected to enhance future LaFIMR case identification. LaFIMR-identified records that are linked with vital event certificates provide enhanced contextual findings for reviews and support continuous quality improvement processes. These differences in the LaFIMR implementation reinforce the NFIMR-supported uniqueness of FIMR programs across the United States, and may encourage other FIMR programs to consider how adaptations to NFIMR recommendations could benefit their programs.     

Community-based Model for Dementia Risk Screening: The Beijing Aging Brain Rejuvenation Initiative (BABRI) Brain Health System

ObjectivesTo address the condition that community-based geriatric services for the assessment and promotion of older adults’ cognitive ability systemically aimed at delaying or preventing dementia is lacking in China.DesignA community-based model including cognitive assessment and training, geriatric health guidance and long-term support was designed based on a prospective cohort study.Setting and ParticipantsParticipants (N = 5593) were all from an ongoing cohort study, the Beijing Aging Brain Rejuvenation Initiative (BABRI) study.MethodsWe conducted receiver operating characteristic, stepwise logistic regression and branch-and-bound algorithm analyses to select the most effective tests from the BABRI neuropsychological test battery. Canonical discriminant analysis was conducted to extract the first canonical variable as a composite index of the tests. In addition, we developed comprehensive surveys and computerized cognitive trainings targeting every cognitive domain.ResultsThe BABRI brain health system (BABRI-BHS) was designed to include SCREEN, ASSESS, and DIAGNOSE sessions. When distinguishing cognitively impaired older adults from cognitively healthy older adults, the canonical variable extracted from tests in the SCREEN session achieved an area under the curve (AUC) of 0.730 [95% confidence interval (95% CI) 0.671–0.789], with a sensitivity of 0.630 and a specificity of 0.780; in the ASSESS session, the AUC was 0.906 (95% CI 0.894–0.917), the sensitivity was 0.809, and the specificity was 0.854. A stepwise screening pathway is recommended when using the BABRI-BHS in communities to divide older adults into subtypes and to provide targeted interventions and long-term geriatric health guidance.Conclusions and ImplicationsThe BABRI-BHS is an effective and efficient geriatric health care solution that is suitable for community-based dementia risk screening, providing stepwise cognitive assessments and helping older adults acquire tailored interventions and guidance conveniently.     

Core Domains for a Person-Focused Outcome Measurement System in Cancer (PROMS-Cancer Core) for Routine Care: A Scoping Review and Canadian Delphi Consensus

ObjectivesThe objectives of this scoping review study were 1) to identify core domains and dimensions for inclusion in a person-focused and self-reported outcome measurement system for cancer and 2) to reach consensus among key stakeholders including cancer survivors on the relevance, acceptability, and feasibility of a core outcome set for collection in routine clinical care.MethodsFollowing a scoping review of the literature, a Rand Delphi consensus method was used to engage key interdisciplinary decision makers, clinicians, and cancer survivors in reaching consensus on a core patient-reported outcome domain taxonomy and outcome measures.ResultsOf the 21,900 citations identified in the scoping review, 1,503 citations were included in the full article review (380 conceptual articles, 461 psychometric evaluation articles, and 662 intervention studies) and subjected to data abstraction and mapping. Final consensus was reached on 20 domains, related subdimensions, and 45 self-report measures considered relevant and feasible for routine collection in cancer by the Delphi panel (PROMS-Cancer Core).ConclusionsStandardization of patient-reported outcome data collection is key to assessing the impact of cancer and treatment on the person for population comparison and monitoring the quality of clinical care. The PROMS-Cancer Core taxonomy of domains and outcome measures can be used to guide the development of a patient-reported outcome information system for cancer.