I really loved all the interactive elements of this course, hearing from stakeholders themselves, which reflects what we as researchers should all be doing. I also loved building my resource ...
I really loved all the interactive elements of this course, hearing from stakeholders themselves, which reflects what we as researchers should all be doing. I also loved building my resource library with all of the extra materials you provided. I have had a hard time in the past, here in the US, finding research on this topic from a development pe I thought this course was a fantastic dive into all things related to research on people with disabilities! rspective. I must have been looking in the wrong places, or, to be honest, had no idea where to look. I didn’t know the London School of Hygiene and Tropical Medicine did this work! So, the amount of information was helpful, presented in an informative and engaging manner, and the quality of materials was high-level. I am thrilled to have been a part of this experience.
Population-level data on disability are essential to inform and motivate evidence-based advocacy and disability inclusive policy and programmes. However, these data are lacking in many countries. To address this data gap in Guatemala, we conducted a study to estimate the prevalence of disability and to compare the experiences of people with and without disabilities in key life areas including work, education, health and water and sanitation.
The study, conducted between June and October 2016, was a collaborative project between The National Disability Council of Guatemala (CONADI), UNICEF Guatemala, CBM and the International Centre for Evidence in Disability (ICED) at LSHTM.
What methods did we use?1) Measuring the prevalence of disability:
We conducted a population-based survey to estimate the prevalence of disability in Guatemala. We selected a sample of 13,800 people, throughout the country, using random sampling methods so it was representative of the whole population. To assess for disability, participants were interviewed using the Washington Group Extended Set of questions for adults and UNICEF/Washington Group extended set of questions for children. We introduced these tools in Step 2.2. They ask about reported difficulties in different functional domains (seeing, hearing, walking, communication and cognition, anxiety and depression). As the picture below shows, we also used mobile-based tools to test people’s vision, hearing and physical functioning (see Step 2.4). All data were collected on android tablets using a bespoke app developed for this study.
Testing for vision and hearing impairments in the Guatemala National Disability Survey. Copyright: ICED, LSHTM2) Measuring differences between people with and without disabilities:
We used a nested case-control study (see Step 1.11) to compare the lived situation for people with and without disabilities in key life areas. The ‘cases’ were people with disabilities identified in the survey. For each case, we selected a ‘control’ without a disability of the same sex, age (+/-5 years) and from the same community as the case. Cases and controls were interviewed, in their homes, using a standardised questionnaire. The life areas we collected information on included work, education, health, water sanitation and hygiene, quality of life and participation. Table 1 shows examples of the types of information we collected within these areas.
3) Exploring experiences of people with disabilities
We also conducted a qualitative study; in-depth interviews were used to explore the experiences of people with disabilities in greater depth. Therefore, this study used mixed methods (see Step 1.15).
Table 1: Examples of outcomes measured to compare people with and without disabilities
Examples of data collected
Whether currently working/worked in past year, Types of work undertaken, Work security, Barriers to working
Attendance at school, Grade/level of school, Days of school missed, Access to school facilities (e.g. water, toilets)
Frequency of seeking health care, Experience of seeking health care (including: Attitude of health workers, Ease of understanding information/communicating with health professionals), Barriers to seeking health care
Water, Sanitation and Hygiene
Types of toilet facilities and water sources used, Difficulties using toilet facilities/accessing water sources, Need for assistance using toilet facilities/accessing water
Level of difficulty performing various activities (e.g. related to self-care, domestic, school, community) in their current environment
Frequency and severity of problem with different environmental barriers (e.g. inaccessible transport, negative attitudes)
Quality of life1
Measured using the World Health Organisation Quality of Life-Bref (WHO-QOL-Bref) [REF] which includes 26 questions across four domains: physical health, psychological health, social relationships and the environment
What did the study tell us?
Disability is common in Guatemala: according to the survey findings 10.2% of the population have a disability and a third (31%) of all households include at least one person with a disability. Disability prevalence varied quite markedly between regions (see figure 1).
Figure 1: Prevalence of disability by region
The case-control study highlighted that people with disabilities across Guatemala face significant restrictions accessing services and participating in key life areas. Some of these findings are summarised below. For more details, please see the full study report (in the See Also section).
Adults with disabilities were less likely to be working (23%) compared to their peers without disabilities (47%) (Figure 2). They also had less stable work opportunities: they were more likely than adults without disabilities to report working only occasionally rather than throughout the year.
One respondent in the qualitative study described the difficulties they faced finding work since they had become disabled:
“When I was in good shape, I went to the fields and worked. I worked in agriculture. Now that I cannot, I no longer go out, things have changed a lot because I cannot do what I did before…when one is good, one takes to the fields to cut the wood, to grow his crop, and brings it home… and catches fish so the family can eat….but now I am no longer able to do all this.”
In rural areas, children with disabilities were less likely to attend school (61%), compared to children without disabilities (82%). Access to education was lowest for children with physical and cognitive limitations.
People with disabilities were three times more likely to have experienced a serious health problem in the past year. They were also more likely to report being disrespected or having difficulties understanding information given to them at health centres.
The qualitative study found that for people with disabilities, the costs associated with seeking health care (e.g. transport and medication) were impoverishing and a significant source of stress. This was particularly difficult for people in rural areas because specialised health services (e.g. rehabilitation) are far away and transport costs are high.
Figure 2: Comparison of work, school and health seeking among people with and without disabilities in Guatemala
Water, Sanitation and Hygiene
Overall access to sanitation and water supplies was high (>85%) for both households with and without people with disabilities. However, people with disabilities experienced greater difficulties in accessing sanitation facilities and practicing hygienic behaviours than their peers without disabilities.
Overall, people with disabilities faced greater difficulty taking part in different activities related to self-care, domestic activities, work and social life participation restrictions. They were also more likely to report that specific aspects of the environment (e.g. availability and accessibility of transport, the natural environment, format of information) were a barrier to participation in the activities that mattered to them.
Quality of life
As Figure 3 shows, self-rated quality of life was lower among people with disabilities in each of the domains measured.
Figure 3: Self-rated quality of life scores among adults with and without disabilities in Guatemala. (Lower scores denote mean lower quality of life)
All the differences between people with and without disabilities reported in this article were statistically significant. You will learn more about what this means in week 3.
The data highlight that disability is common in Guatemala and that there is a need for the strengthening and development of services, programmes and policies so that they are fully inclusive of people with disabilities. According to the Chief Executive of the National Disability Council of Guatemala:
“Knowing how many people with disabilities we are, makes this historically excluded sector visible on the country agenda, and focuses the State on meeting the requirements of this population. We can use these results for advocacy to promote concrete actions and the creation of programs that guarantee the rights of the population with disability living in exclusion and vulnerability.”
Questions to consider:
What do you think the advantages and disadvantages of developing a bespoke mobile tool might have been?
What reasons might explain the large differences in prevalence in different regions?
Based on the findings from this study can you think of ideas for further research? Try and think of some research questions and the methods you could use. For example: Understanding the barriers children with disabilities in rural areas face in accessing school. This could be explored through a qualitative study, conducting in-depth interviews with children with disabilities, parents and teachers.
Is there something else you want to know about the lived experiences of people with disabilities in this setting?
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