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Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

DE GROOT, Tjitske
JACQUET, Wolfgang
MEURS, Pieter
PETERS, Ruth
2020

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Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS).

 

Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test.

 

Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings.

 

Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.

The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania

GROOT, Tjitske de
PETERS, Ruth
BRAKEL, Wim van
MEURS, Pieter
JACQUET, Wolfgang
2019

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Purpose: Albinism in Tanzania causes fierce stigmatisation. Although various stigma reduction interventions (SRI) are employed, research on their effectiveness is lacking. This research aimed to develop a tool to measure albinism-related social stigma among high school students in Tanzania. Cultural equivalence was tested for the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Albinism Social Distance Scale for Adolescents (ASDS-A) assessing conceptual, item, semantic, operational and measurement equivalence.

 

Methods: The methods used were workshops, in-depth interviews, translation and re-translation, discussions, a test (n=337) re-test (n=142) of the survey, and follow-up focus group discussions (n=25).

 

Results: The Scales have proven to be adequate on all equivalences other than measurement equivalence. The reproducibility statistics raise questions that can be explained by characteristics of the sample.

 

Conclusion and Implications: The analysis provides insights for further validation of the Scales, contributes to the discussion about a universal stigma measurement tool and demonstrates the importance of validation studies of existing and proven tools used in a different context.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Exploring Conceptualisations of Disability: A Talanoa approach to Understanding Cultural Frameworks of Disability in Samoa

Picton, Catherine
Horsley, Mike
Knight, Bruce Allen
2016

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Purpose: The concepts of disability were explored from a Samoan cultural frame. The impact of disability conceptualisations on identity development and cultural inclusion were assessed through the Samoan language. The study also evaluated the extent of endorsement of global policy initiatives at a local level.

 

Methods: Through facilitating a Talanoa approach, which is a rich cultural tradition of sharing knowledge, space emerged for dialogue around the lived experiences of members of the disability community in Samoa.

 

Results: Incongruous conceptualisations of disability were identified as a contributing factor in the persistence of stigmatising attitudes and beliefs. Borrowing concepts and terms from moral, medical, and social disability models, this disparity of conceptualisation is reflected in Samoan disability terminology. It was also found that while global policy initiatives are generally politically embraced, they engage more effectively with the community when they areunderpinned by Samoan cultural ontologies.

 

Conclusion: The findings suggest that multiple ideologies regarding rights, capabilities and experiences, challenge the development of identity, self-worth, and inclusion. There is significant value in merging cultural concepts with a social disability model framework. It is important to future development that people with disability can express a sense of cultural identity without risking the right to inclusion and equality.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Social Skills Training of Children with Learning Disability

BHAN, S
FAROOQUI, Z
2013

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Purpose: The ability to recognise emotions in oneself and in others is a fundamental prerequisite to function successfully in the social world. Emotion recognition deficit in people with learning disability may therefore be an important contributory factor to deficits in social skills and poor social adaptation. This study aimed to examine the level of emotional understanding in students with learning disabilities (LD).

 

Method: A pre-test, post-test equivalent groups design was adopted for this study. The focus was on identification of emotions through verbal and pictorial situations, and the appropriate expression of emotions. Training was provided to enhance the emotional understanding of students through the use of ‘I C ME’ module. The 6 emotions addressed in this study were anger, excitement, embarrassment, jealousy, love and anxiety. 30 children with LD, in the age group of 9-12 years, were selected for the study.

 

Results: It was seen that while children with LD had difficulty in the identification of an emotion, they found it more difficult to express the emotion in a socially appropriate way. The post-test results indicated that the training provided to the students significantly improved their emotional understanding.

 

Conclusions: The students learnt about the 6 emotions (anger, excitement, embarrassment, love, jealousy, and anxiety), the vocabulary associated with these emotions, and also the appropriate way to express, self-monitor and self-regulate each emotion.

 

Limitations: Intervention was done for only 6 emotions

Reflections on poverty and disability : a review of literature

KAMPEN, Marlies V
ZIJVERDEN, Ingrid M
EMMETT, Tony
2008

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This study carried out a review of literature describing the relationship between poverty and disability, in order to establish the evidence base for this relationship. Several authors seem to accept the existence of this link, even without a sound research basis. Articles and books were scrutinized to find out what sources were used in these publications to conclude that there was evidence for a strong relationship between disability and poverty. Peer-reviewed articles were used as much as possible.

It was found that cultural determinants play the greatest role in the process of disability leading to poverty. Monetary factors are also essential determinants when it comes to poverty as a result of disability. The relationship between disability and poverty seems to be a vicious circle. Most of the literature concerning poverty and disability is based on non- rigorous (literature) studies.

Relating disability to poverty and vice versa is a complex matter that needs to consider several interdependent factors that influence this process.

 

 

Asia Pacific Disability Rehabilitation Journal, Vol 19, No 1

Practice and preferences of sign languages in the instructions of deaf students: some reflections on the mainstream secondary school of Botswana

LEKOKO, Rebecca N
MUKHOPADHYAY, S
2008

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The use of language for every day communication has been and continues to be an essential element of any teaching and learning environment. In this paper, the focus is on the teaching -learning communication in the education of the learners with deafness. While experiences indicate that some people in Botswana are showing more and more interest in Sign Language as a mode of instruction in the classroom, it is also true that many are far from understanding the "Deaf Culture" and to use sign language in the teaching and learning of deaf students. To a great extent, deaf people in Botswana are still disadvantaged and discriminated against, by their condition. A survey carried out in 2004 (1) revealed that some current practices in the mainstream secondary school of Botswana make it difficult for deaf students to progress. While, for example, participants preferred Total Communication; in practise, Signed English is used. Thus, this paper takes a stance that if practices conflict with preference, low performance should be expected. This is currently the situation at the mainstream secondary schools in Botswana, deaf students' inability to hear has become their inability to learn and progress in education. This could be avoided. In this 21st century, being unable to hear is not a barrier to learning, as we are aware that Sign Languages are there as full languages, for the education of deaf.

 

Asia Pacific Disability Rehabilitation Journal, Vol 19, No 1

Influence of cultural factors on disability and rehabilitation in developing countries [Editorial]

ASIA PACIFIC DISABILITY REHABILITATION JOURNAL
1999

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Western stereotypes of 'community' are used in the planning of many CBR programmes in developing countries. These programmes expose themselves to a higher risk of failure because they tend to conflict with the cultural factors of the host country. This editorial illustrates the significance of cultural influences on disability and rehabilitation in the context of CBR

Framing disability issues in local concepts and beliefs

GROCE, Nora Ellen
1999

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This paper discusses three issues...[for] consideration as part of the evolving discussion of disability in a cross-cultural context. The first concerns seeing socially constructed concepts and beliefs about disability as ideas and attitudes that are often, and increasingly, in transition and not as static conceptual frameworks. The second issue deals with determining the best methodology to understand disability in the individual, family, community and societal setting out of the many methodologies that can be employed in these situations...The third issue is about ensuring that the information gathered is disseminated broadly, which means sharing the information generated not only with those interested in disability issues, but also with those working on issues such as development policy, social change and justice, who know little about disability

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