Caregiver attitudes to gynaecological health of women with intellectual disability

Lin, Lan-Ping; Lin, Junyang; Chu, Cordia; Chen, Limei

doi:10.3109/13668250.2011.599316

Cited by 12 publications

(6 citation statements)

References 12 publications

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“…They showed that menstruation is viewed by carers (family members) as a confidential 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,[67][68][69].…”

Section: Inadequate 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

Kayastha²,

Mahon

et al. 2021

BMC Public Health

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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, observation, PhotoVoice and ranking. 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, 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; many feared they would be 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,should be developed. Attention to, and resourcing for disability inclusive MHM must be prioritised to ensure ‘no one is left behind’.

show abstract

Section: Inadequate 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

Kayastha²,

Mahon

et al. 2021

BMC Public Health

View full text Add to dashboard Cite

show abstract

“…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: 54%

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

View full text Add to dashboard Cite

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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Caregiver attitudes to gynaecological health of women with intellectual disability

Abstract: The study highlights that service authorities should address health policy initiatives to continue providing workplace training in reproductive health, public reproductive health services. There is also a need for caregivers to increase their knowledge of reproductive health.

Cited by 12 publications

References 12 publications

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

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

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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