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Menstrual Hygiene Management: Challenges and Coping Strategies for Adolescents with Disabilities in the Kumasi Metro of Ghana

Enoch, Acheampong
Nadutey, Alberta
Afful, Barbara Fosua
Anokye, Reindolf
2020

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Purpose: Effective menstrual hygiene management is vital to the health, well- being, dignity, empowerment, mobility and productivity of girls and women. This study was conducted to ascertain menstrual hygiene management challenges and coping strategies of adolescents with disabilities in the Kumasi Metro of Ghana.

 

Method: An exploratory study design with qualitative approach was employed to select 18 participants. Data was collected through in-depth interviews and focus group discussions, and then transcribed and categorised into specific themes.

 

Results: Females with visual impairment had difficulty in maintaining good menstrual hygiene because of problems in detecting menstrual blood, inability to fix sanitary pads appropriately and wash underwear properly, and anxiety and stress from not knowing whether their period has started. The problems of those with physical impairment were related to inaccessible washrooms, long hours of being seated on the part of wheelchair-users, and difficulty in fixing sanitary pads for those with upper limb impairment. For those with hearing impairment, the main challenge was the communication barrier between them and their significant others whenever they needed help.

 

Conclusion: There are common challenges faced by all girls across the globe with regard to menstrual hygiene management. Adolescent females with disability however face additional challenges with regard to MHM. Those with physical disability encounter accessibility challenges, while the main challenge for the deaf and those with speech problems is communication. The visually impaired live in anxiety due to fear of staining their clothes.

Being a girl & disabled in West Africa : the educational situation in question Mali, Niger, Burkina Faso

Humanity & Inclusion
October 2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Burkina Faso

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Niger

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Mali

Humanity & Inclusion
October 2020

Expand view

Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Work ethics and societal norms influence sick leave and return to work: tales of transformation

MOLDVIK, Isa
STAHL, Christian
MUSSENER, Ulrika
February 2020

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Purpose: This study’s purpose was to explore how people on sick leave manage societal norms and values related to work, and how these influence their perspectives of themselves throughout the rehabilitation process.

 

Materials and methods: This was a longitudinal interview study with a narrative approach, comprising 38 interviews with 11 individuals on long-term sick leave. Data collection was conducted in two phases and analysed iteratively through content analysis.

 

Results: The results suggest that work ethics and societal norms influence individuals’ views of themselves and the sick leave and rehabilitation process. Conforming one’s personal values to the work norm can create internal conflicts and cause feelings of shame for not being able to live up to the established norm. The strong work norm may create unrealistic expectations, which in some cases may result in constraining the return to work process.

 

Conclusion: To transform a sick leave narrative into a positive one, societal norms and their influence on identity needs to be recognised. Stakeholders involved in the process can contribute to a positive transformation by not only supporting return to work, but also to acknowledge and help people manage their self-image as having a disability that limits their ability to work.

Framing heuristics in inclusive education: The case of Uganda’s preservice teacher education programme

NANTONGO, Proscovia S.
October 2019

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Background: Recent education-related research has raised concerns about the persistent exclusion of vulnerable learners in Uganda. The Revised Primary Teacher Education Curriculum of 2013 marked an ambitious yet inconclusive attempt to advance the implementation of inclusive education but has encountered deeply entrenched sociocultural exclusionary practices among education experts.

 

Objectives: This study aimed to explicate education practitioners’ interpretations of Uganda’s flagship inclusive education programme in preservice primary teacher education.

 

Method: Drawing on the conceptual vocabulary of frame analysis and the qualitative analysis of individual and group interviews and classroom observations, the interpretations of inclusive education implementation in preservice primary teacher education in Uganda were examined. The participants included policy design experts, curriculum design experts and classroom practitioners.

 

Results: Three main findings emerged. Firstly, interpretations of inclusive education displayed a narrow framing heuristic of inclusive education as a perfunctory, daily practice rather than a pathway for reflective, inclusive pedagogical engagement. Secondly, the heuristic encouraged the treatment of inclusive pedagogy as a ‘label’ under a specific rubric referring to sensory impairments or disabilities – a historical device for sociocultural exclusion. Thirdly, inclusive education was a praxis but was misframed from its original intentions, causing tension and resentment among practitioners. These findings contribute to the debates on the sustainability of inclusive education beyond preservice teacher education.

 

Conclusion: Uganda’s flagship inclusive education programme in preservice primary teacher education was fraught with tensions, ambiguities and an overt, urgent need for change.

 

 

African Journal of Disability, Vol 8, 2019

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia

KERSTENS, Hans C J W
SATINK, Ton
NIJKRAKE, Maarten J
DE SWART, Bert J M
VAN LITH, Bas J H
GUERTS, Alexander C H
NIJHUIN-VAN DER SANDEN, Maria W G
April 2019

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Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

 

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

 

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

 

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

The current situation of persons with disabilities in Jordan

THOMPSON, Steven
August 2018

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This K4D helpdesk research report seeks to explore the current (2018) situation of persons with disabilities (PWD) in Jordan. It presents recent data on the state of PWD in Jordan, such as data on access to basic services for PWD. It also considers the political, social, cultural, and economic context for PWD in Jordan. Finally, it explores laws and policies relevant to the rights of PWD in Jordan. It considers the situation for Syrian refugees with disabilities with regards to the above themes. Where possible, the report presents data disaggregated by age and gender

‘We need “culture-bridges”: professionals’ experiences of sex education for pupils with intellectual disabilities in a multicultural society

LÖFGREN-MÅRTENSON, Charlotta
OUIS, Pernilla
2018

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This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

The long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world

SHORE, Susan
2017

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Background: Lack of access to mobility for people with disabilities, particularly in less- resourced settings, continues to be widespread. Despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent.


Objectives: Previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. The current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair.


Method: One hundred and ninety-one subjects from Peru, Uganda and Vietnam received one of two models of wheelchair provided by the Free Wheelchair Mission. Using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. Variables of overall health, employment, income and travel were explored through non-parametric analysis.


Results: There was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (Friedman test for overall change, p = 0.000). Employment status showed a small but significant increase at 12 and 30 months (Cochran’s Q, p = 0.000). Reported income increased slowly, becoming significantly different at 30 months (Friedman test, p = 0.033). There was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. There was higher satisfaction with the GEN_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. Overall wheelchair satisfaction and maintenance levels were favourable.


Conclusion: While overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. Further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. This study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments.

School toilets: queer, disabled bodies and gendered lessons of embodiment

SLATER, Jenny
JONES, Charlotte
PROCTER, Lisa
2016

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In this paper we argue that school toilets function as one civilising site [Elias, 1978. The Civilising Process. Oxford: Blackwell] in which children learn that disabled and queer bodies are out of place. This paper is the first to offer queer and crip perspectives on school toilets. The small body of existing school toilet literature generally works from a normative position which implicitly perpetuates dominant and oppressive ideals. We draw on data from Around the Toilet, a collaborative research project with queer, trans and disabled people (aroundthetoilet.wordpress.com) to critically interrogate this work. In doing this we consider ‘toilet training’ as a form of ‘civilisation’, that teaches lessons around identity, embodiment and ab/normal ways of being in the world. Furthermore, we show that ‘toilet training’ continues into adulthood, albeit in ways that are less easily identifiable than in the early years. We therefore call for a more critical, inclusive, and transformative approach to school toilet research.

Tackling sexual abuse of people with disabilities - report. What to do in the case of rape or sexual assault (A guide for vctims, their families and friends) - booklet

ADVANTAGE AFRICA
KIBWEZI DISABLED PERSONS ORGANISATION (KDPO)
INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
November 2016

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"The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders". Powerpoint slides of the research findings and posters are also available.

 

The booklet is a simple guide written to support victims of sexual abuse and their families to know their rights and to understand what services are available to them. 

The Paralympic Games and the Promotion of the Rights of Persons with Disabilities

UN CHRONICLE
September 2016

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This article explores the effect of the paraolympic games on driving social inclusion and an understanding of disability and disability rights around the world. Highlighting the poor conditions before the Bejing games in 2008, the article explains how perceptions and awareness within society have changed. The article also highlighted the United Kingdom as a leader in the field of disability rights and equality thought protection of those rights. 

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Report of the Special Rapporteur on the rights of persons with disabilities (theme: the right of persons with disabilities to social protection)

DEVANDAS-AGUILAR, Catalina
August 2015

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'In the present report, the Special Rapporteur, Catalina Devandas-Aguilar, provides a study focusing on disability-inclusive social protection as a prerequisite for the universalization of social protection. She stresses that social protection is fundamental for achieving the social inclusion and active participation of persons with disabilities, and promoting their active citizenship. She also argues that to achieve disability-inclusive social protection, States must move away from traditional disability-welfare approaches towards embracing the innovative rights based model'

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