A QUALITATIVE ASSESSMENT OF THE EXISTING ATTITUDES AND

PRACTICES

TOWARDS DISABILITY IN DIEN BIEN PROVINCE, VIETNAM

ATTITUDES AND PRACTICES TOWARDS DISABILITY

Pham Dung, Désirée van Dongen, Fiona Bude, Pamela Wright

Contents of presentation

• Background• Study objective• Methodology• Findings• Conclusion • Recommendation

BACKGROUND

• During the past decades, a shift in recognition from disability as a medical issue to being a social issue as well

• Disability is considered in a social and interactive context

• Social determinant can impact significantly on the lives of persons with disabilities (PWD)

• Studies show that disabled persons may be limited in their participation in society and may encounter multiple barriers in different aspects of life

ICF approach

Health or social condition

ActivityBody Functions& Structure

Participation

Environmental factors Personal factors

Impairments

Limitations

Restrictions

Disability

BACKGROUND (II)

• Especially the level of social awareness about disability shows to have an impact on the inclusion of PWD into the community

• When awareness about disability is low, this often results in misunderstanding and misconceptions attached to disability

• To implement appropriate interventions, accurate knowledge about the substance and structure of attitudes and practices towards disability in community settings is needed

CONTEXT: CBR PROJECT IN DIEN BIEN

• Community-Based Rehabilitation project (CBR) in Dien Bien was supported by MCNV

• Necessary to conduct baseline survey on disability and rehabilitation needs of PWD

• Three stages:1.Household screening to identify possible PWD (January 2014)2.Identification of disability by health professionals (April 2014)3.Household survey to assess rehabilitation needs (May 2014)

• Integration of this study (at stage 3), in order to obtain qualitative information around the subject

RESEARCH OBJECTIVE

• Assess the current status of attitudes and practices towards persons with disabilities across different levels of the community

In addition:• Understand if, and how, these attitudes and practices

influence the degree of social participation of persons with disabilities in communal life.

• Provide recommendations for a strategy concerning the community-based rehabilitation project in Dien Bien.

Approach

• How PWD are treated, perceived and understood results from the process of interaction between different actors in the community and should be viewed from a multi-level perspective

• Four levels:• The individual (PWD)

• Family members of PWD

• The wider community (villagers without disabilities)

• Stakeholders of the public service sector

RESEARCH SUB-QUESTIONS:

1. What are the perceptions of disabled persons related to disability and what is the effect of their disability on relevant aspects of social and everyday life, such as work, education, livelihood and social relationships?

2. What are the perceptions of family members of PWD with regard to the disability of their relative?

3. How is disability understood and what are the preconceived ideas about disability held by the broader community (villagers without disabilities)?

4. How is disability understood and what are the feelings and preconceived ideas about disability held by relevant stakeholders involved in the provision of public services to persons with disabilities?

5. How does the community’s overall awareness about disability influence social inclusion of PWD and, in particular, does this give rise to any indications of more positive or negative behaviours (i.e. stigma or social exclusion) towards PWD in the community?

DESIGN AND METHODS

• Descriptive, qualitative study, aimed at exploring the baseline perceptions about disability, how PWD are treated and what possible barriers PWD face in their everday life

• Plurality of qualitative research methods

• Four different communities in Dien Bien Province• Tan Thanh ward

• Thanh Chan commune

• Quai to commune

• Na Sang commune

Expected information

• Feelings, perceptions, views and experiences:

• PWD: • Well-being • Self-perceptions (self-efficacy, self-confidence)• Social participation• Perceived attitudes of others• Perceived barriers and facilitators

• Attitudes of others:• Feelings about PWD• Competences of PWD• Practices and (supportive) activities towards PWD

STUDY POPULATION

• Persons with disabilities (PWD)1. Mobility, 2. visual and 3. hearing disability

• Family members of PWD 1. Mobility, 2. visual, 3. hearing, 4. intellectual and 5. mental disability

• Community members without disabilities

• Stakeholders of the public service sector•People’s Committee

•Social Affairs section

•Communal health station

•Education

•Socio-political mass organizations: women union

Balanced distributions concerning specific socio-demographic characteristics, including age, gender and type of disability

DATA COLLECTION

• Focus group discussions (FGDs)• N = 10

• PWD, family members of PWD and villagers without disabilities

• Aimed at obtaining an in-depth understanding of main questions in interactive way

• Creative and visualization techniques incorporated

• In-depth interviews (IDIs)• N = 16

• PWD, family members of PWD, public service providers

• Aimed at deepening the information obtained in FGD

Figure 1. Methods and participants

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FINDINGS

PWD’s experience

• Feelings:• Sadness• Low self-esteem and self-confidence• Low self-efficacy• Loneliness• Shyness • Embarrassment

• Main factors: • Not having a job and contribute economically • Difficulties to get married• Not having friends or being able to join them• Feeling different compared to others

“As time goes by and seeing my same-aged friends can do many things and get a better life, while I can’t work and my family is still having many difficulties, I feel so sad.” (PWD with a mobility disability in Quai To)

Feelings of PWD: unconfidence

• “I feel unconfident. That I can’t communicate with others makes me shy. I don’t understand what they are saying to me. They told me: “You’re stupid”.” (PWD with hearing disability in Na Sang)

• “I feel shame, as my leg is not normal. When people look at me, I wear long trousers to cover the leg so they don’t have to see it. (PWD with mobility disability in Quai To)

• “People are looking a lot. It makes me feel shy and uncomfortable, because I also want to be normal and be like them.” (FGD participant with mobility disability in Thanh Chan)

Attitudes of others that PWD perceived

• PWD feel love and support from others

“The neighbours come to encourage me and sometimes they give some food or money. They feel poor for me and want to share. They love and symphatize me.” (FGD Tan Thanh)

• However, PWD also experience negative attitudes• Other people feel uncomfortable• Other people keep distance• Other people say bad things about them (sometimes indirectly)

“Some people think that if someone with a disability comes to their house during TET holiday or new house ceremony, they will get bad luck the rest of the year. But they don’t say that directly."

PWD self - stigma

• Internalized (or self-)stigma exists to great extent• Low self-esteem

• Low self-confidence

• Behaviour (extremely introvert, shy, sometimes reluctant to talk)

• Experienced stigma:• Not able to find a job

• Unble to marry

• Refused, sent away or dropped out of school

• People keep distance

PWD’s perceived stigma

• Associations • Ignorance• Rejection• Name-calling

“We have high stairs. Sometimes my disabled relative has to go down. People in the surrounding see that and they know that she can’t do it by herself. But they don’t help, they refuse to. They are afraid that their clothes will get dirty.”

Impact: restriction of participation

• "Yes. When someone has new house ceremony or a wedding party, I don’t want to come, because I am afraid I can bring bad luck to them.”

(PWD with mobility disability in Quai To)

• “I am 37 years old now and still single. No one asks me for engagement. Because I am disabled, no one wants to marry me. I also don’t want to myself, because I worry about the future. I may not have a happy family life and I worry that I can’t take care.” (PWD with mobility disability in Na Sang)

• "Sometimes I play with friends, but often during break time I stay inside all alone. It feels like being inside a prison. Then I just play on my own.”

(10 year-old girl with visual disability in Thanh Chan)

Impact: Social exclusion

• Many PWD have difficulty to socially integrate:• Don’t join social and collective events• Stay at home most of the time• Difficulties in social relationships• No or limited education and employment

• “I think the family members just don’t want to go with disabled people. People with disability almost spend their time inside their house.”

• “They are accepted, but they can't play, communicate with other children. They feel ashamed, can't communicate and join friends. They sit on their study seat whole time.”

Experience of family members of PWD

• Feelings:• Love and affection • Sadness• Acceptance • Limited future perspective • Unconfidence • Stress and burden

“Living with unwanted people is very difficult. It’s not our choice, but we have to live with them. We cannot kill them.”

“Because they know nothing, they went shitting everywhere in the house. That’s really bad for our children and grandchildren so we had to take them out and make them stay in that tent.” (Family member of two intellectual and mentally disabled PWD)

Attitudes and role of family

• Attitudes and role:• Love and care, responsibilty

• Acceptance

• Different estimated competences

• Sometimes lack of care-seeking behaviour

• Long distances

• Poverty

• Lack of knowledge

Attitudes of others that family perceived• Many family members feel respected and treated equally by

others• Other people come to encourage, support and share with them

• However, family members also perceive negative attitudes:• Ignorance • Feeling of having less influence• People saying bad things

• Self-stigma: • Unconfidence, shame, concerns about disclosure

“Yes, of course I feel shame. If my children were all normal, I could have more confidence. I just think so. Other people don’t say that. But now I still do some social work for the community. I am the leader of the Retired Soldiers Association in our village. Because I still contribute to social work, I don’t think other people will look at me with less respect.”

Community’s experience

• Feelings• Compassion and love• Helplessness• Sometimes fear and reluctance

“We feel so poor for them. But we also have limited knowledge. We don’t know how to make them feel better.”

• Attitudes and practices• Supportive and caring • Some (indirect) negative attitudes• Relatively low perceived competences of PWD

Attitudes in the community

• Stigma and discrimination present to certain extent:• Rejection and ignorance• Avoidance (because of fear)• Associations • Name-calling• Imitation

“They don’t want to talk themselves. That’s a group that just sits and does nothing.”

"The neighbourhood children sometimes come to joke and then run away. They call the disabled person ‘stupid’ or ‘dumb’. Sometimes PWD can realize, but children just do this because they see that the PWD is abnormal."

Public service providers

• Perceptions:• Disadvantaged group in society who needs support• Difficulties in communication

• Activities and support: Occasional gifts Home-visits Mobilizing community Policy implementation (monthly financial allowance and

documentation)

PWD benefit from this, however, current support is not systmatic and long-term, irregular and unstructured lack of resources, collaboration and belief and perceived

restrictions from higher level

Public service providers

• “It’s my responsibility and I work to fulfil this responsibility till the disabled people feel comfortable.”

• “Now in my commune, we have no resources to assist PWD. There is only occasional gift giving, beside government support.”

• “The council on disability is not active now. We just evaluate, but don’t support PWD and we don’t have an action plan. Because our community finds it difficult to evaluate. Our commune is very poor.”

PWD’s perceived barriers

• Education• No specialized skills, materials and approaches to

teach PWD• Not being able to develop in learning

• Employment• Not able to find a job, no suitable jobs • Not contribute financially

• Social relationships• Getting married• Joining friends

• Transportation

CONCLUSION (I)

• Majority of PWD feels sad and experiences social exclusion

• Internalized and experienced stigma exists among PWD

• Family members of PWD perceive great burden and (self-) stigma exist among a certain part of family members

• The wider community holds symphatic and supportive attitudes towards PWD

• However, enacted stigma of the wider community also exist to certain extent

CONCLUSION (II)

• Significant lack of facilities and opportunities for PWD to support them in the fulfillment of their rights

• Participation restrictions of PWD:• Education

• Employment

• Social events (sport, celebrations, friendship)

• Marrying and family life

Important notes

• Individual differences in findings and variations between:• Different age groups• Type of disability• Current social activity and participation • Region (urban and rural areas)

• Inconsistencies in obtained data between different actor groups: different perceptions • Family members and community members• Public service providers

RECOMMENDATION

• Significant need for support of PWD:• Empowerement

• Self-awareness, knowledge about rights and opportunities, self-efficacy, self-advocacy and self-confidence

• Increase community awareness• Knowledge, contact with PWD

• Socio-economic development • Through employment, i.e. provision of microcredit

Participatory approach• Actively involve PWD, their families and other villagers

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