Journal of Intellectual Disability Research最新文献

{"title":"Eating and feeding disorders in adults with intellectual developmental disorder with and without autism spectrum disorder.","authors":"M O Bertelli, F Paletti, M Piva Merli, A Hassiotis, A Bianco, S Lassi","doi":"10.1111/jir.13195","DOIUrl":"10.1111/jir.13195","url":null,"abstract":"<p><strong>Background: </strong>The present observational cross-sectional study aimed at investigating the prevalence of feeding and eating disorders (FEEDs) in adults with intellectual disability (ID)/intellectual developmental disorder (IDD) with or without autism spectrum disorder (ASD) and specific problem behaviours (PBs).</p><p><strong>Methods: </strong>Two hundred six adults with ID/IDD consecutively attending residential and rehabilitative facilities, 59.2% of which had co-occurring ASD, were assessed for presence of FEEDs by a structured interview specifically developed for the study and Diagnostic Manual - Intellectual Disability criteria.</p><p><strong>Results: </strong>The 4.3% of the sample fully met the diagnostic criteria for anorexia nervosa, 6.7% for bulimia nervosa (BN) and 22.8% for binge eating disorder (BED). Furthermore, at least one observable symptom of these disorders was found in higher percentages of the sample. A higher prevalence of FEEDs was found in ID/IDD plus ASD than in ID/IDD alone. PBs were also significantly higher in participants with co-occurring ASD and had a positive correlation with the number of FEED symptoms, especially for BN and BED.</p><p><strong>Conclusions: </strong>The study enriches previous literature and considers novel aspects such as the behavioural/observable presentation of symptoms as well as the association with ASD and PBs. These issues deserve a specific consideration within standard psychiatric assessment and future research, especially in persons with major communication and/or cognitive difficulties.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"153-164"},"PeriodicalIF":2.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142590858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Adults With Intellectual Disabilities and Incontinence: Assessment and Toileting Issues.","authors":"Janet Finlayson, Dawn A Skelton, Paul Ord, Fiona Roche, Audrey Marshall, John Butcher, Nick Gore","doi":"10.1111/jir.13202","DOIUrl":"10.1111/jir.13202","url":null,"abstract":"<p><strong>Background: </strong>Urinary and bowel incontinence are more common in adults with intellectual disability (ID), compared to the general population. Little is known about their incontinence experiences and toileting issues. The aim was to learn about their experiences and toileting issues.</p><p><strong>Method: </strong>Incontinence and toileting issues assessment was conducted with a community-based sample of 22 adults with ID and urinary incontinence, with or without bowel incontinence. Assessment included the IPSS, ICIQ-UI, and POTI checklists; bladder scans; and urine sample screening for presence of a urinary tract infection.</p><p><strong>Results: </strong>The majority (19 adults, 86%) developed urinary incontinence during adulthood. Seven adults (32%) also experienced bowel incontinence, and constipation was the most commonly reported health condition (13 adults, 59%), other than urinary incontinence. Fifty per cent (11 adults) had been treated for a urinary tract infection within the previous 12 months.</p><p><strong>Conclusion: </strong>There is an urgent need to develop accessible and reliable incontinence assessment materials with and for adults with ID and their supporters. These assessments should pay close attention to health conditions that can cause incontinence in this group and factors associated with incontinence which are more commonly experienced by adults with ID. These factors are potentially modifiable.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"165-175"},"PeriodicalIF":2.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735887/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142709680","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A comprehensive overview of neuropsychiatric symptoms in adolescents with 22q11.2 deletion syndrome.","authors":"I Selten, J Blok, T Boerma, A A A M J Djelantik, M Houben, F Wijnen, J Zinkstok, J A S Vorstman, A M Fiksinski","doi":"10.1111/jir.13196","DOIUrl":"10.1111/jir.13196","url":null,"abstract":"<p><strong>Background: </strong>The 22q11.2 deletion syndrome (22q11DS) is associated with a variety of neuropsychiatric outcomes that vary across deletion carriers. We adopted a dimensional approach to provide a comprehensive overview of neuropsychiatric symptom expression in adolescents with 22q11DS and further our understanding of the observed phenotypical heterogeneity.</p><p><strong>Methods: </strong>Participants were 208 adolescents with 22q11DS between 10 and 19 years old. Semi-structured clinical interviews and IQ tests were used to quantify symptom expression on multiple symptom dimensions, some reflecting DSM-IV diagnostic domains. We investigated symptom expression in those with and without a formal DSM-IV classification and examined between and within symptom dimensions. We used correlation analyses to explore associations between different symptom dimensions.</p><p><strong>Results: </strong>We demonstrated inter-individual differences in symptom expression, both between and within neuropsychiatric symptom dimensions. On most symptom dimensions, more than 50% of adolescents expressed at least one clinically relevant symptom. In addition, a significant proportion of youth without a formal DSM-IV diagnosis reported clinically relevant symptoms (e.g. >85% of those without an ADHD diagnosis reported ADHD symptoms). The exploratory correlation analysis indicated mostly positive correlations between symptom dimensions.</p><p><strong>Conclusions: </strong>The finding that most adolescents with 22q11DS express neuropsychiatric symptoms, even in the absence of a DSM-IV classification, has substantial ramifications for guiding adequate support. Findings may spur further research into the dimensional structure of neuropsychiatric symptoms in 22q11DS and aid in uncovering mechanisms that contribute to symptom expression. Ultimately, this provides leads to improve clinical care for 22q11DS and to understand phenotypical variation in other high-risk genetic variants.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"113-126"},"PeriodicalIF":2.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735868/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"High frequency of mitochondrial DNA rearrangements in the peripheral blood of adults with intellectual disability.","authors":"B K Bulduk, J Tortajada, L Torres-Egurrola, A Valiente-Pallejà, R Martínez-Leal, E Vilella, H Torrell, G Muntané, L Martorell","doi":"10.1111/jir.13197","DOIUrl":"10.1111/jir.13197","url":null,"abstract":"<p><strong>Background: </strong>Mitochondrial DNA (mtDNA) rearrangements are recognised factors in mitochondrial disorders and ageing, but their involvement in neurodevelopmental disorders, particularly intellectual disability (ID) and autism spectrum disorder (ASD), remains poorly understood. Previous studies have reported mitochondrial dysfunction in individuals with both ID and ASD. The aim of this study was to investigate the prevalence of large-scale mtDNA rearrangements in ID and ID with comorbid ASD (ID-ASD).</p><p><strong>Method: </strong>We used mtDNA-targeted next-generation sequencing and the MitoSAlt high-throughput computational pipeline in peripheral blood samples from 76 patients with ID (mean age 52.5 years, 37% female), 59 patients with ID-ASD (mean age 41.3 years, 46% female) and 32 healthy controls (mean age 42.4 years, 47% female) from Catalonia.</p><p><strong>Results: </strong>The study revealed a high frequency of mtDNA rearrangements in patients with ID, with 10/76 (13.2%) affected individuals. However, the prevalence was significantly lower in patients with ID-ASD 1/59 (1.7%) and in HC 1/32 (3.1%). Among the mtDNA rearrangements, six were identified as deletions (median size 6937 bp and median heteroplasmy level 2.3%) and six as duplications (median size 10 455 bp and median heteroplasmy level 1.9%). One of the duplications, MT-ATP6 m.8765-8793dup (29 bp), was present in four individuals with ID with a median heteroplasmy level of 3.9%.</p><p><strong>Conclusions: </strong>Our results show that mtDNA rearrangements are frequent in patients with ID, but not in those with ID-ASD, when compared to HC. Additionally, MitoSAlt has demonstrated high sensitivity and accuracy in detecting mtDNA rearrangements, even at very low heteroplasmy levels in blood samples. While the high frequency of mtDNA rearrangements in ID is noteworthy, the role of these rearrangements is currently unclear and needs to be confirmed with further data, particularly in post-mitotic tissues and through age-matched control studies.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"137-152"},"PeriodicalIF":2.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735882/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142590864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and evaluation of the Trauma Screener-Intellectual Disability: a post-traumatic stress disorder screening tool for adults with mild intellectual disability or borderline intellectual functioning.","authors":"A Versluis, C Schuengel, L Mevissen, A de Jongh, R Didden","doi":"10.1111/jir.13198","DOIUrl":"10.1111/jir.13198","url":null,"abstract":"<p><strong>Background: </strong>This study aimed to evaluate the validity and reliability of the adult self-report and proxy version of the Trauma Screener-Intellectual Disability (TS-ID) in adults with mild intellectual disability or borderline intellectual functioning (MID-BIF). An optimal cut-off value was determined for the ratio of specificity to sensitivity for predicting the diagnosis of post-traumatic stress disorder (PTSD).</p><p><strong>Methods: </strong>The TS-ID was adapted from a Dutch Child and Adolescent Trauma Screener, for use with adults with MID-BIF. Outcomes based on the TS-ID were compared with the presence of PTSD, as classified using the Diagnostic Interview Trauma and Stressors-Intellectual Disability (Mevissen et al. 2018). The TS-ID adult version was administered to 97 participants with MID-BIF who lived in supported housing, whereas the TS-ID proxy version was administered to 92 family members or professional caregivers.</p><p><strong>Results: </strong>The TS-ID adult version showed high internal consistency (Cronbach's α = .94) and excellent validity (AUC = .94) for distinguishing PTSD in adults with MID-BIF. Optimal specificity and sensitivity was found at a cut-off score of 18. Although the TS-ID proxy version demonstrated excellent internal consistency (Cronbach's α = .93), it showed no validity in statistically distinguishing PTSD in adults with MID-BIF.</p><p><strong>Conclusions: </strong>The TS-ID showed favourable psychometric qualities as a screening instrument of PTSD in the case for people with MID-BIF.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"127-136"},"PeriodicalIF":2.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735870/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142576406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Social Internet Use by People With Intellectual Disabilities: A Systematic Review and Thematic Synthesis of Qualitative Studies.","authors":"Johanna L L van Alem, Noud Frielink, Petri J C M Embregts","doi":"10.1111/jir.13211","DOIUrl":"https://doi.org/10.1111/jir.13211","url":null,"abstract":"<p><strong>Introduction: </strong>Although existing research has explored both the benefits and risks associated with social internet use amongst people with intellectual disabilities (ID), a comprehensive understanding of the underlying reasons for this engagement is still lacking. This systematic review synthesizes literature investigating the reasons for social internet use amongst people with ID.</p><p><strong>Methods: </strong>Eight electronic databases (Cinahl, Cochrane, Embase, ERIC, Google Scholar, Medline, PsycINFO and Web of Science) were systematically searched in June 2023 and November 2024 and screened using active machine learning techniques. Studies were considered for inclusion if they qualitatively described the reasons, motivations and personal opinions of people with ID regarding their social internet use in English and were published in peer-reviewed journals. Caregivers' insights were included if individuals could not verbally communicate directly. Only voluntary social internet use was considered; interventions were excluded unless preintervention views on social internet use were reported. Risk of bias was assessed using the Mixed Methods Appraisal Tool (MMAT; Hong et al. 2018). Data were extracted using the SPIDER tool and analysed using thematic synthesis.</p><p><strong>Results: </strong>In total, 21 relevant articles were identified. Most studies described social internet use in Western contexts (n = 19), primarily amongst adults (n = 16). Four articles specifically addressed social internet use during COVID-19. Only seven studies explicitly reported participants' level of ID, with six focusing on mild-to-moderate ID and one on profound and multiple ID. Four themes emerged: a feeling of fitting in (n = 12), maintaining connections (n = 16), making new connections (n = 14) and enhancing autonomy and empowerment (n = 10).</p><p><strong>Discussion: </strong>The findings underscore the importance of social internet use in fostering feelings of inclusion, connectedness and autonomy amongst people with ID. These insights can guide researchers and caregivers in developing tailored support strategies that both maximize the benefits and mitigate the risks of online social engagement for this population. By understanding the specific reasons behind social internet use, caregivers can offer more personalized guidance that aligns with the individual needs and preferences of people with ID. The review also highlights a need for future research to adhere to reporting guidelines to enhance transparency and quality in the field.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143023829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Unlocking Vision Care Accessibility: Evaluating Caregivers' Willingness to Pay in Specialised Eye Clinics for Family Members With Intellectual Disabilities.","authors":"Chiun-Ho Hou, Yueh-Ching Chou, Christy Pu","doi":"10.1111/jir.13210","DOIUrl":"https://doi.org/10.1111/jir.13210","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disabilities (IDs) require more vision care but encounter considerable challenges during eye examinations. Specialised clinics established specifically for people with IDs are generally limited. This study aims to evaluate primary family caregivers' willingness to pay (WTP) for specialised ophthalmology services designed for people with IDs.</p><p><strong>Methods: </strong>Between 15 August and 5 October 2023, we conducted a face-to-face survey targeting primary family caregivers of people with IDs in two local authorities in Taiwan. We obtained a probability sample through stratified random sampling. A total of 657 family caregivers completed this survey, with a response rate of 82.6%. WTP was evaluated using a contingent valuation method in a hypothetical ophthalmology clinic conceptualised through a qualitative study. Two-part models were estimated.</p><p><strong>Results: </strong>The WTP for specialised ophthalmology services designed for people with IDs varied from NT$96.9 (US$3.2) to NT$217.7 (US$7.3) for the lowest-income group (p < 0.001) and from NT$513.0 (US$17.1) to NT$648.6 (US$21.6) for the highest-income group (p < 0.001). Factors such as family income, self-reported financial satisfaction and concern for the ocular health of family members with IDs significantly influenced WTP.</p><p><strong>Conclusions: </strong>Caregivers' WTP is low relative to the minimum operational costs of specialised ophthalmology clinics within the Taiwanese National Health Insurance scheme. This finding highlights the need for public funding to support such clinics and ensure that they can address the vision health disparity observed between people with and without IDs.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142964579","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID-19 Pandemic in the UK: Longitudinal Study.","authors":"Paul A Thompson, Eleanor Summers, Sue Caton, Nikita Hayden, Stuart Todd, Edward Oloidi, Laurence Taggart, Rosemary Kelly, Jill Bradshaw, Roseann Maguire, Andrew Jahoda, Chris Hatton, Richard P Hastings","doi":"10.1111/jir.13206","DOIUrl":"https://doi.org/10.1111/jir.13206","url":null,"abstract":"<p><strong>Background: </strong>Longitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.</p><p><strong>Methods: </strong>Family carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020-2022). Growth models were used to determine the change in family-carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories.</p><p><strong>Results: </strong>Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.</p><p><strong>Conclusions: </strong>Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Factors Associated With Depression in Caregivers of Adults With Down Syndrome.","authors":"Amy E Bodde, Brian C Helsel, Jessica Danon, Joseph Sherman, Anna Rice, Kristine Williams, Bethany Forseth, Joseph E Donnelly, Lauren T Ptomey","doi":"10.1111/jir.13208","DOIUrl":"10.1111/jir.13208","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers of those with developmental disabilities have higher rates of depression and anxiety compared with caregivers of those without development disability. Few studies have examined factors that contribute to caregiver depression, including the appraisal of caregiving responsibilities and the physical fitness and daily function of the care recipient. The purpose of this study was to identify intrapersonal (caregiver) and interpersonal (care recipient) factors associated with depressive symptoms in caregivers of adults with Down syndrome (DS).</p><p><strong>Methods: </strong>Twenty-four adults with DS participating in a 12-month physical activity trial completed physical fitness and function tests (VO_2peak, hand grip strength, timed up and go, five times sit to stand) and activities of daily living (ADL) surveys at their baseline visit. Caregivers (n = 24) of the adults with DS completed surveys on caregiving distress, quality of life (QoL) and depressive symptoms. We evaluated the associations of these assessments on caregiver depressive symptoms using Mann-Whitney U tests and Spearman correlations.</p><p><strong>Results: </strong>Adults with DS were 23 ± 7.5 years, 58% female; caregivers were 54 ± 10 years, 100% female, 96% family members. Caregiver depressive symptoms were significantly associated with caregiving distress (p = 0.024) and caregiving QoL (r = -0.58, p = 0.003). Hand grip strength of care recipients was inversely correlated with caregiver depressive symptoms (r = -0.45, p = 0.03), but other assessments of physical function and ADL were not associated with caregiver depressive symptoms.</p><p><strong>Conclusions: </strong>Caregiver depressive symptoms were related to modifiable factors related to the caregiver and care recipient. Intervening to improve caregiving appraisal and functional strength of the care recipient may positively impact caregiver mental health.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882446","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Contraceptive and Pregnancy Decision-Making Autonomy and Health Care Experiences Among Women With Intellectual Disabilities.","authors":"Kari Dee Vallury, Victoria Tucker, Nicola Sheeran","doi":"10.1111/jir.13207","DOIUrl":"https://doi.org/10.1111/jir.13207","url":null,"abstract":"<p><strong>Background: </strong>There is currently limited research exploring the extent to which women with an intellectual disability experience autonomy over contraception, pregnancy timing and pregnancy outcome decisions. Previous studies have highlighted inequities in sexual and reproductive health outcomes. However, barriers and facilitators of reproductive autonomy for women with an intellectual disability across the reproductive journey, including health care experiences, are poorly described; this is the focus of the current study.</p><p><strong>Methods: </strong>Ten women with intellectual disabilities participated in focus groups or individual interviews where they discussed their experiences of accessing sexual and reproductive health services and making reproductive health decisions. Data were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Three themes elucidate how a lack of sexual and reproductive health information and violence impacted many participants' ability to control timing of conception and make informed pregnancy outcome decisions. The first theme describes contraceptive literacy as a barrier to reproductive autonomy. Most participants received no contraception or reproductive health education prior to their first pregnancy. While most women were aware of common forms of contraception and pregnancy options, their contraceptive knowledge was incomplete or incorrect. The second theme explores how most participants experienced agency over pregnancy outcome decisions, though informed decision-making was hampered by reproductive coercion and abuse, delayed pregnancy detection and insufficient information about all pregnancy options. The third theme identifies health professionals as pivotal in empowering reproductive agency and facilitating informed decision-making.</p><p><strong>Conclusions: </strong>Women with intellectual disabilities demonstrate the willingness and the ability to make informed and autonomous reproductive health decisions when appropriately supported with care and information. However, they face reproductive coercion and abuse and are often required to overcome numerous systemic challenges to assert their reproductive rights. Significant efforts are needed to better understand and address barriers to informed reproductive decision-making.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882403","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}