Predictors of caregiver supportive behaviors towards reproductive health care for women with intellectual disabilities

Lin, Lan-Ping; Lin, Pei-Ying; Chu, Cordia; Lin, Junyang

doi:10.1016/j.ridd.2010.10.015

Cited by 13 publications

(13 citation statements)

References 20 publications

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Section: Resultsmentioning

confidence: 99%

“…Five studies investigated the level of training and support provided to carers (professionals and mothers) on how to manage menstruation of a person with an intellectual impairment [34, 35, 42, 48, 49]. Three of these studies [42, 48, 49] focused on professional carers working in institutions and two studies on mothers at home [34, 35]. The three studies conducted in institutions highlighted limited MHM training and standards for intimate and personal care tasks; that the task’s importance was under-recognised by management; understanding of the menstruation of people with intellectual impairments was low, and support provided on menstrual issues was lower than sex education, but higher than menopause [42, 48, 49].…”

Section: Resultsmentioning

confidence: 99%

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Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people

et al. 2019

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BackgroundOne quarter of the global population is of menstruating age, yet menstruation is shrouded in discrimination and taboos. Disability also carries stigma, so disabled people may face layers of discrimination when they are menstruating. The objective of the review is to assess the menstrual hygiene requirements of disabled people, the barriers they face, and the available interventions to help them manage their menstruation hygienically and with dignity.MethodsEligible studies, gathered across all countries, were identified by conducting searches across four databases (MEDLINE, PubMed, EMBASE, Global Health) in May 2017, with alerts set on each database to highlight new titles added until April 2018. Eligible studies incorporated analyses relevant to menstruating disabled people and/or how their carers provide support during their menstrual cycle.ResultsThe 22 studies included were published since 1976; the majority after 2010 (n = 12; 55%). One study was a quasi-experiment; all others were observational. Most studies (n = 15; 68%) were from high income countries and most (n = 17; 77%) focused on people with intellectual impairments, so the review findings focus on this group and their carers. Outcomes investigated include choice and preference of menstrual product, ability to manage menstrual hygiene and coping strategies applied. Barriers faced included a lack of standardised guidance for professional carers; a lack of menstruation training, information and support provided to people with intellectual impairments and their carers; a lack of understanding of severity of symptoms experienced by people with intellectual impairments, the high cost of menstrual products and lack of appropriate options for people with physical impairments. Few interventions were found, and strategies for menstrual hygiene management applied by carers of persons with intellectual impairments include limiting the disabled person’s movements when menstruating and suppressing their menstruation.ConclusionsLittle evidence was identified on the requirements of disabled people and their carers in managing their menstruation, and only one intervention, but a range of barriers were identified. This gap in evidence is important, as the consequences of failing to meet menstrual hygiene needs of disabled people includes shame, social isolation, and even sterilisation.Systematic review registrationPROSPERO CRD42018095497.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people

et al. 2019

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“…They showed that menstruation is viewed by carers (family members) as a con dential topic, so people did not speak to others or seek support from anyone, including medical professionals. This lack of support can negatively affect carer's wellbeing (5,22,28,(66)(67)(68).…”

Section: Lack Of Menstrual Hygiene Information Training and Supportmentioning

confidence: 99%

Qualitative study exploring the barriers to menstrual hygiene management faced by adolescents and young people with a disability, and their carers in the Kavrepalanchok district, Nepal

Wilbur

Kayastha

Mahon³

et al. 2020

Preprint

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Background: Menstrual hygiene management (MHM) is a recognised public health, social and educational issue, which must be achieved to allow the realisation of human rights. People with disabilities are likely to experience layers of discrimination when they are menstruating, but little evidence exists.Methods: The study aims to investigate barriers to MHM that people with disabilities and their carers, face in the Kavrepalanchok, Nepal, using qualitative methods. Twenty people with disabilities, aged 15-24, who menstruate and experience ‘a lot of difficulty’ or more across one or more of the Washington Group functional domains were included, as well as 13 carers who provide menstrual support to these individuals. Purposeful sampling was applied to select participants. Different approaches were used to investigating barriers to MHM and triangulate data: in-depth interviews, PhotoVoice and ranking, market survey, product attribute assessment and user preference with ranking, observation of the water, sanitation and hygiene (WASH) facilities used. We analysed data thematically, using Nvivo 11.Results: Barriers to MHM experienced by people with disabilities differ according to the impairment. Inaccessible WASH facilities were a major challenge for people with mobility, self-care and visual impairments. People with intellectual impairments had difficulty accessing MHM information and their carers despaired when they showed their menstrual blood to others, which could result in abuse. No support mechanisms existed for carers for MHM, who overwhelmed and isolated. Menstrual discomfort was a major challenge; these were managed with home remedies, or not at all. Most participants followed menstrual restrictions, which were widespread and expected, for fear of being cursed if they did not. As disability is often viewed as a curse, this demonstrates the layers of discrimination faced.Conclusion: Issues related to MHM for people with disabilities is more complex than for others in the population due to the additional disability discrimination and impairment experienced. Research exploring these issues must be conducted in different settings, and MHM interventions, tailored for impairment type and carers requirements, must be developed. Attention to, and resourcing for disability inclusive MHM must be prioritised to ensure ‘no one is left behind’.

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“…However, the finding that carers were particularly concerned that the young person with difficulties remembering or concentrating would not follow cultural and social norms (including menstrual restrictions), and that they would refuse to wear a menstrual product and go out with menstrual blood on her clothes is highlighted in studies carried out in India (23), Taiwan (41), the UK (42) and Canada (26). Our study showed that there is a lack of social support and information about how to care for another person's menstrual cycle, and that menstrual care is viewed as a private issue by carers is prevalent in other studies (22,23,(43)(44)(45). In this study, as in others, a lack of social support and information about how to care for another person's menstrual cycle, contributes to carers feeling overwhelmed and isolated (22,23,(43)(44)(45).…”

Section: Discussionmentioning

confidence: 47%

“…Our study showed that there is a lack of social support and information about how to care for another person's menstrual cycle, and that menstrual care is viewed as a private issue by carers is prevalent in other studies (22,23,(43)(44)(45). In this study, as in others, a lack of social support and information about how to care for another person's menstrual cycle, contributes to carers feeling overwhelmed and isolated (22,23,(43)(44)(45). This can negatively affect carer's wellbeing, which in turn could impact on the person they support (5).…”

Section: Discussionmentioning

confidence: 53%

Barriers to Menstrual Hygiene Management Faced by Adolescents and Young People with a Disability, and their Carers in the Kavrepalanchok District, Nepal

Wilbur¹,

Kayastha²,

Mahon³

et al. 2020

Preprint

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Background Menstrual hygiene management (MHM) is a recognised public health, social and educational issue, which must be achieved to allow the realisation of human rights. People with disabilities are likely to experience layers of discrimination when they are menstruating, but little evidence exists on this topic. Methods The study aims to investigate the barriers to MHM that people with a disability, and their carers, face in the Kavrepalanchok, Nepal, using qualitative methods. Twenty people with disabilities, aged 15 to 24, who menstruate and experience ‘a lot of difficult’ or more across one or more of the Washington Group functional domains were included, as well as 13 carers who provide menstrual support to these individuals. Two stages of purposive sampling and snowball sampling were applied to identify participants. We used different approaches to investigating barriers to MHM including: in-depth interviews, PhotoVoice and ranking, market survey of menstrual products and user preference with ranking, accessibility and safety audits of the water and sanitation facilities. We analysed data thematically, using Nvivo 11. Results Barriers to MHM experienced by people with disabilities differ according to the functional limitation. Inaccessible water, sanitation and hygiene facilities were a major challenge for people with mobility, self-care and visual limitations. People with intellectual impairments had difficulty accessing MHM information and their carers despaired when they showed their menstrual blood to others, which could result in abuse. No support mechanisms exist for carers for MHM and they felt overwhelmed and isolated. Menstrual discomfort was a major challenge; these were managed with home remedies, or not at all. Most participants followed menstrual restrictions, which were widespread and expected, for fear of being cursed if they did not. As disability is often viewed as a curse, this demonstrates the layers of discrimination faced. Conclusion Issues related to MHM for people with disabilities is more complex than for others in the population due to the additional disability discrimination and functional limitations experienced. Attention to, and resourcing for disability inclusive MHM must be prioritised for progress to be made towards the Sustainable Development Goals, which aims to ‘Leave No One Behind’.

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Predictors of caregiver supportive behaviors towards reproductive health care for women with intellectual disabilities

Cited by 13 publications

References 20 publications

Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people

Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people

Qualitative study exploring the barriers to menstrual hygiene management faced by adolescents and young people with a disability, and their carers in the Kavrepalanchok district, Nepal

Barriers to Menstrual Hygiene Management Faced by Adolescents and Young People with a Disability, and their Carers in the Kavrepalanchok District, Nepal

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