Conversations about health–Sharing the personal experiences of women with intellectual disabilities

Cytowska, Beata; Zierkiewicz, Edyta

doi:10.1111/jar.12718

Cited by 6 publications

(5 citation statements)

References 34 publications

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“…Sixteen of the articles on this theme identified barriers or facilitators that people with ID encounter when initiating or maintaining intimate and affective relationships with other people [ 22 , 37 , 41 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 ]. Eleven studies included only people with ID as participants, while five focused on the perceptions of carers (either family or staff).…”

Section: Resultsmentioning

confidence: 99%

The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review

Pérez-Curiel

Sánchez

Morán

et al. 2023

IJERPH

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Although sexuality, reproductive health, and starting a family are human rights that should be guaranteed for all citizens, they are still taboo issues for people with intellectual disability (ID), and even more so for women with ID. This paper systematically reviews the current qualitative and quantitative evidence on the rights of people with ID in regard to Articles 23 (right to home and family) and 25 (health, specifically sexual and reproductive health) of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the current literature, following PRISMA 2020, was carried out in ERIC, PsychInfo, Scopus, PubMed, ProQuest, and Web of Science. In all, 151 articles were included for review. The studies were categorized into six themes: attitudes, intimate relationships, sexual and reproductive health, sexuality and sex education, pregnancy, and parenthood. There are still many barriers that prevent people with ID from fully exercising their right to sexuality, reproductive health, and parenthood, most notably communicative and attitudinal barriers. These findings underline the need to continue advancing the rights of people with ID, relying on Schalock and Verdurgo’s eight-dimensional quality of life model as the ideal conceptual framework for translating such abstract concepts into practice and policy.

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Section: Resultsmentioning

confidence: 99%

The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review

Pérez-Curiel

Sánchez

Morán

et al. 2023

IJERPH

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“…For the elaboration of the scale, fundamental issues about the sexuality of women with intellectual disabilities were considered. According to a bibliographic review, the matters chosen were the following: false beliefs [ 24 ], assumption of asexuality [ 8 , 25 ], or rather, a hypersexual image [ 26 ], infantilization or roles typical of girls or adolescents [ 9 , 25 , 27 ], the existence of intersectional discrimination [ 9 , 27 ], sterilization without prior anticipation or consultation [ 28 , 29 , 30 ], the lack of support to establish affective, loving interpersonal relationships [ 31 , 32 ], the lack of sex education [ 8 , 32 ], sociocultural barriers to live and experience their sexuality in a plane of equal rights, due to prohibitive beliefs such as the lack of control over their own lives [ 8 , 30 , 32 , 33 , 34 ], and a lack of access to health services [ 32 , 33 , 35 , 36 ]. Based on these topics, an initial questionnaire was developed, with 34 qualitative items and three sociodemographic questions: age, sex, and country.…”

Section: Methodsmentioning

confidence: 99%

“…The femininity of women with intellectual disabilities is regarded as “defective”. They cannot hold down any professional occupation and are too irresponsible to be entrusted with caring for a child [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Validation of a Scale on Society’s Attitudes towards the Sexuality of Women with Intellectual Disabilities—Survey Study

Rojas-Chaves

Matheu

Castro-Luna

et al. 2022

IJERPH

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Background: The main aim of this study was to design and validate a questionnaire in Spanish to acknowledge the perception of the sexuality of women with intellectual disabilities. We sought to cover specific spheres of sexuality, such as sexual capacity, decision-making capacity, sexual disinhibition, and sexual education and quality of life. Methods: A questionnaire was developed based on a literature review. Validation was performed using content validation through a panel of experts; construct validation was performed using exploratory and confirmatory factorial analyses; reliability tests were also performed, using Cronbach’s Alpha and the two-halves test. Results: Two-hundred forty-four participants pilot tested the initial 34-item questionnaire. After content validation and exploratory factorial analysis, the resulting 10-item questionnaire showed four domains, with Cronbach’s Alpha values between 0.69 and 0.82. Confirmatory factorial analysis confirmed the domains, and the model’s goodness-of-fit tests were adequate. Conclusions. The final ten-item scale developed in this research proved to be a valid and reliable instrument, as it has good psychometric properties of both validity and reliability. Thus, researchers interested in investigating the social perception of the sexuality of women with intellectual disabilities can use this tool. Future research can extend the validity of this scale to other languages and settings.

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“…Focus groups were considered to be the preferred data collection method for this study, as there is evidence that they offer research participants with intellectual disabilities an opportunity to build confidence through the involvement, peer support and validation of their views [20]. This methodology has also been applied in a number of other studies that sought the perspectives of people with intellectual disabilities [16,[21][22][23].…”

Section: Methodsmentioning

confidence: 99%

“If I Was the Boss of My Local Government”: Perspectives of People with Intellectual Disabilities on Improving Inclusion

Carnemolla¹,

Kelly²,

Donnelley³

et al. 2021

Sustainability

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Despite many initiatives to reframe and support inclusion for people with disabilities, people with intellectual disabilities continue to experience social exclusion in their local communities. This study shares the perspectives of people with an intellectual disability on what matters to them in their local communities. This study aims to inform local governments of the value of engaging with and listening to local people with intellectual disabilities and is an important exploration of how the social sustainability of cities is framed and valued by people who have historically been socially and geographically excluded. Focus groups and interviews were conducted in six local government areas, with a mix of metropolitan and regional areas, in two states of Australia—NSW and Victoria. The study analysed how 45 Australian adults with intellectual disabilities described their local communities and conceptualised better inclusion. The results were collated and organised by applying an adapted framework of inclusive cities. The participants expressed the need for safe, accessible and clean public amenities; accessible information; appropriate communication; and for people to be more respectful, friendly and understanding of the needs of people with intellectual disabilities. This study suggests that local governments can take action in order to improve social sustainability by engaging with local people with intellectual disabilities as citizens, advisors and employees, and by educating the wider community about respect and social inclusion for all.

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Conversations about health–Sharing the personal experiences of women with intellectual disabilities

Cited by 6 publications

References 34 publications

The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review

The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review

Validation of a Scale on Society’s Attitudes towards the Sexuality of Women with Intellectual Disabilities—Survey Study

“If I Was the Boss of My Local Government”: Perspectives of People with Intellectual Disabilities on Improving Inclusion

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