Dataset Information

A tool for assessing sexual knowledge of people with Intellectual disabilities in Norway.

ABSTRACT:

Background

Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact.

Methods

37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians' (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data.

Results

A weighted Cohen's kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception.

Conclusions

The SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights.

SUBMITTER: Svae GB

PROVIDER: S-EPMC10985616 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature

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Publications

A tool for assessing sexual knowledge of people with Intellectual disabilities in Norway.

Svae Gøril Brevik GB Zachariassen Peter P Fjeld Wenche W Søndenaa Erik E

Frontiers in psychiatry 20240319

<h4>Background</h4>Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact.<h4>Methods</h4>37 people with i ...[more]

PMID: 38566961

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Project description:ImportanceSmall, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking.ObjectivesTo identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD.Design, setting, and participantsThis retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024.ExposurePeople who had a documented birth in Medicaid during the study years.Main outcome and measuresPerinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression.ResultsThe study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD.Conclusions and relevanceIn this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.

Project description:BackgroundCancers are as common in individuals with intellectual disabilities as in the general population (GP). For the subgroup of people with profound and multiple disabilities (PMD) who present with both severe intellectual disability and major motor disorders, the frequency and distribution of cancers are currently not known, preventing proper cancer surveillance.MethodsWe carried out a systematic and synthetic review of the medical literature, including a focused search of Japanese data.ResultsThe total risk of cancer in individuals with PMD is thought to be lower than in the GP, possibly due to a shorter life expectancy. They have reduced exposure to cancer risk factors, such as alcohol, tobacco, sunlight, human papillomavirus infection, occupational toxins, and being overweight. On the other hand, individuals with PMD present a greater frequency of gastroesophageal reflux disease, Helicobacter pylori gastritis, chronic cystitis, and cryptorchidism, which increase the risk for cancer of the esophagus, stomach, urinary bladder, and testes. In addition, certain genetic disorders underlying compromised motor and cognitive functions are associated with higher risk of childhood cancers. An analysis of 135 cancers in persons with PMD in Japan suggested that they present a particular tumor profile, with certain cancers rarer than in the GP, whereas cancers of the digestive tract are frequent. Cancers of the digestive tract occurred significantly earlier than in the GP (colon: average age 48.3 years vs. 71.3 years in the GP, esophagus: 39 years vs. 72 years in the GP). An increasing number of therapeutic successes in children and adults with PMD have been reported in different countries when cancers are discovered early.ConclusionIndividuals with PMD must be appropriately monitored for cancer. Screenings for breast and colon cancer, as well as regular monitoring of the esophagus, stomach, urinary bladder, and testicles, are necessary. Population-based epidemiological studies are needed to better understand risk factors, frequency, and distribution of cancers in the PMD population.

Dataset Information

A tool for assessing sexual knowledge of people with Intellectual disabilities in Norway.

Background

Methods

Results

Conclusions

Publications

A tool for assessing sexual knowledge of people with Intellectual disabilities in Norway.

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