MWI_2003_LCPAL_v01_M
Survey on Living Conditions Among People with Activity Limitations 2003-2004
Name | Country code |
---|---|
Malawi | MWI |
Other Household Survey [hh/oth]
The initiative to carry out the studies in in southern Africa was developed in a joint project between Southern Africa Federation of the Disabled (SAFOD), the Norwegian Federation of Organisations of Disabled People (FFO), and SINTEF Health Research. The first seven representative studies are part of a regional initiative to establish baseline data on living conditions among people with disabilities in Southern Africa.
The Namibian survey was carried out in 2001–2002, Zimbabwe in 2002–2003, Malawi in 2003–2004, Zambia in 2005–2006, Mocambique in 2007–2008, Swaziland and Lesotho in 2009–2010. Botswana started in 2011 and will be finalized in 2014. A new study was initiated in Angola in 2013.
SINTEF has also carried out two similar studies with different funding sources. In 2005–2006 a regional study (Eastern and Western Cape) was carried out in South Africa. In 2013–2014 SINTEF has carried out a second study in Zimbabwe, funded by UNICEF and in collaboration with Ministry of Child Health and Welfare.
Major stakeholders in the countries are the following:
Namibia: National Federation of Disabled People in Namibia (NFDPN), University of Namibia, Multidisciplinary Research and Consultancy Centre (MRCC), and Ministry of Lands, Resettlement and Rehabilitation.
Zimbabwe
2003: National Council of Disabled Persons of Zimbabwe (NCDPZ), University of Zimbabwe, Departments of Psychiatry and Rehabilitation, and Ministries of Health and Child Welfare and Social Welfare.
2013–14: United Nations Childrden's Fund (UNICEF), Ministry of Child and Health Welfare.
Malawi: Federation of Disability Organisations in Malawi (FEDOMA), University of Malawi, Centre for Social Research (CSR), and Ministry responsible for People with Disabilities in the Office of the President.
Zambia: Zambia Federation of the Disabled (ZAFOD), University of Zambia, Institute of Economic and Social Research (INESOR) and Central Statistic Office (CSO).
South Africa: University of Cape Town.
Mozambique: Fórum das Associações Moçambicanas dos Deficientes (FAMOD), The National Statistics Institute (INE) and Universidade Eduardo Mondlane (UEM).
Lesotho: Lesotho National Federation of Organizations of the Disabled (LNFOD), Central Bureau of Statistics.
Swaziland: The Federation of Organizations of the Disabled in Swaziland (FODSWA) , Central Statistical Office.
Botswana: The Botswana Federation of the Disabled (BOFOD), SAFOD, University of Botswana, Statistics Botswana, Office of the President.
Nepal: The National Federation of the Disabled in Nepal (NFDN), Ministry of Health (MOH), Ministry of Women, Children and Social Welfare (MOWCSW), National Planning Commission (NPC), Ministry of Education (MOE), Valley Research Group(VARG) and Central Bureau of Statistics (CBS).
Disability and society: The last 20–30 years have seen an important change in our understanding of disability. From a previous individual perspective on causes and interventions, a social and civil rights approach has taken over. Much of the focus is now on the human and physical environment and how this might reduce or enhance an individual’s level of activity and social participation.
National policy development aimed at improving living conditions in general and among people with disabilities in particular is dependent on the availability of quality data. In many countries these have been lacking, and both the United Nations and National authorities have emphasised the need for this information in order to further develop disability policies.
Information about people with disabilities and their living conditions has the potential for contributing to an improvement of the situation faced by this group in many low-income countries, as has been demonstrated in high-income countries. The Studies on Living Conditions Among People with Activity Limitations in Developing Countries have been applied to inform policy development, for capacity building, awareness creation, and in specific advocacy processes to influence service delivery.
The studies have demonstrated that level of living conditions among disabled people is systematically lower than among non-disabled people. This implies that people with disabilities are denied the equal opportunities to participate and contribute to their society. It is in this context that people with disabilities are denied their human rights.
In Malawi, specific objectives were:
Sample survey data [ssd]
The scope of the Survey on Living Conditions Among People with Activity Limitations includes:
DISABLED AND NON-DISABLED INDIVIDUALS : Activity limitations, Burden of disease, Education and literacy, Employment/economic activity, Income and expenses, Mortality
INDIVIDUAL CASE AND CONTROL: Activity limitations, Environmental barriers, Marital status, Health, Causes of disability, Violence and discrimination, Service gaps, Education (15 years and older)
Employment and income, Medication, Assistive devices, Thoughts and feelings about being a person with disability, Social support, Involvement in family and social life, Health and well-being, Knowledge and understanding of some common diseases.
National
The target population for sampling was all private households in Malawi excluding institutionalised and homeless people.
Name |
---|
The Foundation for Scientific and Industrial Research - SINTEF Unimed |
Southern Africa Federation of Disabled People (SAFOD) |
Norwegian Federation of Organisations of Disabled People (FFO) |
Name | Affiliation |
---|---|
Federation of Disability Organisations in Malawi | |
Centre for Social Research | University of Malawi |
Ministries of Health and Population | Government of Malawi |
Name |
---|
Norwegian Agency for Development Cooperation |
Atlas Alliance |
A two-stage cluster sampling procedure was applied using the National sampling frame in each country, in close collaboration with the National statistical offices who also did sample size calculations to ensure representativity at regional/provincial level. A required number of geographical units (often called Enumeration Areas, EAs) are thus sampled, with all households in these areas included in the first stage of the sampling. Then follows screening where all households in the selected areas are interviewed (normally the head of the household) using the WG 6 screening instrument.
Sampling in Malawi:
The sample size was worked out noting that in a survey of living conditions of people with disabilities, the data user would want to know the estimates of proportions of respondents sharing respective views on issues relating to disability. The characteristics requiring respondents' views in this study are many and each characteristic would have its own proportion of respondents responding in a particular manner. In this regard, the proportion would vary from characteristic to characteristic. Determination of sample number of respondents that would give a national estimate of the proportion at a given level of precision depends on the variance of the proportion and the sample design adopted. A characteristic with a proportion having a large variance would require a larger sample to arrive at an estimate of the proportion at national level at a given acceptable level of precision than that with a smaller variance. In order to avoid having varying sample sizes for given characteristics of people with disabilities under the study, the largest possible sample number of people with disabilities based on the largest possible variance that a proportion can have at a given level of precision under given sample design was calculated. The variance of a proportion being highest when the proportion equals 50%, the required sample number of disabled persons was calculated based on the assumption that the estimated proportion would take that value with a margin of error equal to plus or minus 3.5 percent at the 95 percent level of confidence. Since the sample, as will be illustrated later, was to be drawn in stages, the design effect was assumed to be equal to 2. The design effect is the effect on the variance of adopting a sampling procedure other than Simple Random Sampling (Bradley and South, 1981).The national sample size derived was made up of 1570 respondents.
The sampling frame that was utilized in this survey was obtained from the National Statistical Office (NSO). This frame was developed by NSO through the operations of the most recent population Census in Malawi conducted in 1998. Through a mapping exercise prior to the census, a total of 9206 Enumeration Areas were demarcated covering the whole country. The boundaries of these areas followed physical features such as rivers/streams, roads/paths, galleys, etc. and these enumeration areas were demarcated in such a way that during the census an enumerator would enumerate all the persons in a given enumeration area within maximum of 21 days. Each enumeration area is estimated to have approximately 300 households or an estimated 1,000 individuals. During the operations of the census, the number of persons as well as the number of households found to exist in each one of the enumeration areas was recorded. However, no list of names and location of the households within the respective enumeration areas were made. This was due to the problems which are inherent in Malawi as well as most developing countries in giving information leading to the location of a household especially in the rural areas. Malawi has a total of 28 Districts divided into Traditional Authorities (TAs). In rural areas, the Traditional Authority is the lowest units for which maps showing boundaries of the enumeration areas are available while in the cities areas called Wards are the lowest unit for which enumeration area maps are available.
Iit was calculated that a sample of 1570 persons with disabilities would be adequate to provide estimates of acceptable precision at the national level and the terms of reference dictated that there should be complete enumeration of all the people with disabilities in the sampled enumeration areas. The lowest level for which the available frame had information, as discussed above, was the enumeration area and the information comprised of only totals of persons and households. In addition, there was no information on the prevalence of persons with disabilities at the enumeration area level.
The study conducted by SINTEF Health Research and the University of Zimbabwe using the ICF definition of disability (Eide, Nhiwatiwa, Muderezi & Loeb, 2004) estimated the proportion of those disabled to be 1.9%; while the one conducted in Namibia (Eide, van Rooy & Loeb, 2003) estimated proportion of disabled in that country to be 1.6%. Lessons learnt from Namibia and Zimbabwe indicate, therefore, that utilizing the ICF definition, the prevalence of disabled persons in Malawi may be closer to the 2.9% estimate of 1983 (NSO, 1987). In the absence of information on the prevalence of disabled persons in Malawi at enumeration area level, it was assumed that the prevalence of disabled persons in each enumeration area would be 3%. Hence, in order to be able to sample and budget for the study, it was assumed that an enumeration area would contain on average 3% of its total number of households having at least a member with a disability. Based on this assumption and considering an average of approximately 300 households per enumeration area, it was calculated that the household with at least one disabled person would on average equal to 10 in an enumeration area. Considering the coverage of 1570 disabled persons, and that an enumeration area would contain on average 10 households with at least one disabled member, a sample of 157 enumeration areas were planned to be covered in the study within which all persons identified to have a disability were to be interviewed.
Each one of the districts (Likoma Island was excluded for logistical reasons) as well as each of the three cities in Malawi formed a stratum. The total sample of 157 enumeration areas was allocated to the respective strata in proportion to the population of the stratum and the distribution thereof.
The selection of the allocated number of enumeration areas within each stratum was done with probability proportional to size prior to the commencement of the data collection exercise. The size measure was the human population of the enumeration areas as found in the 1998 population census.
Apart from enumerating all households having at least a person with a disability in a selected enumeration area (Cases) a similar number of households (designated as minimum 10 per enumeration area) without any disabled persons (Controls) should also be interviewed. The selection of the enumeration areas was done in the office. In the absence of households sampling frame within enumeration areas, the selection of Controls could only be possible after enumeration teams were deployed and sent to the field where they would conduct a household listing exercise. However, it was decided that a systematic sample of households equal to the Cases listed (assumed to be 10 on average) should be selected adopting Systematic Sampling procedures.
Questionnaires
The questionnaires applied in the studies were originally based on two previously applied instruments: A study on living conditions in the general population in Namibia (NPC 2000) and a national disability survey carried out in South Africa (Schneider et. al., 1999). Over the years, and in particular in the first couple of studies in Namibia and Zimbabwe, a lengthy process involving all stakeholders was carried out to align the content of the questionnaires with the context and priorities of particularly the disability movement. A disability-screening instrument was included, in the early phases drawing on the discourse preceding ICF, in later phases using the WG 6 screening instruments directly. The "ICF matrix" on activity limitations, participation restrictions and environmental barriers was also included
Four separate questionnaires are applied:
i) Household study on living conditions - a set of core indicators of living conditions for all permanent members of the household (including control households)
ii) Screening for disability; WG 6
iii) Detailed Questionnaire for people with disabilities including the Activity and Participation Matrix drawn from ICF
iv) Detailed questionnaire to individuals without disability (controls)
The questionnaires are all developed in English language and translated into local language(es)
The generic household questionnaire covered the following topics:
The detailed Disability Questionnaire covered the following topics:
The Control questionnaire for individuals without disabilities is a reduced version of the questionnaire applied to individuals with disability.
Malawi: Data collection questionnaires that had previously been used in Namibia (on general living conditions – NPC, 2000) and in South Africa (on disability – Schneider et. al., 1999) were combined and adapted for use in Malawi. In addition, a disability-screening instrument was included as well as a matrix on activity limitations and participation restrictions developed specifically for this study and drawing on the concepts of the ICF. The design applied in this study in Malawi is similar to the design applied in the previous studies in Namibia (Eide, van Rooy & Loeb, 2003), and Zimbabwe (Eide, Nhiwatiwa, Muderezi & Loeb, 2004) save some minor differences in formulations of certain questions.
Start | End | Cycle |
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2003-09 | 2003-10 | Data Collection |
Two CSR Principal Investigators assisted by representatives of FEDOMA were identified and their role was to oversee and manage all aspects of data collection process to ensure that all logistics necessary for the successful data collection exercise in the field were being adhered to and solve problems which the field teams could not handle on their own.
Recruitment and training
Recruitment of research assistants are carried out by the responsible body in each country (e.g. Technical Team). Specific requirements for research assistants are set in each country, including minimum formal education. Individuals with disability are particularly recruited for the data collection, but the number can vary according to the strength of the national DPO. The number of research assistants and supervisors will vary according to geographical composition of a country and the size of the population.
Screening and Data collection
Research Teams of approximately 5 - 7 persons with one vehicle and a driver travel together and collect data within pre-determined geographical as for instance a Province. Screening is either carried out as a separate activity or directly linked up to the data collection in one operation. In all the sampled areas, every household is visited and the head of the household responds to the screening question. The data from the listing/screening are entered into a data entry program. Disability prevalence is calculated from this file. Any persons who are presented with at least one "some problems" in one of the WG 6 items below qualifies as being disabled. This threshold is chosen to obtain maximum sensitivity of the screening instrument, and the responses to the 6 questions can later be applied to distinguish between impairment types and severity of disability.
Among households with at least one disabled member, a pre-decided number of households in each EA is randomly sampled. Additional EAs are drawn during the sampling process to be used whenever too few households with disabled member(s) are identified in an EA.
Malawi:
A pilot data collection exercise done to test the applicability of the sample design as well as the data collection tools was undertaken in chosen enumeration areas in Blantyre and Machinga districts. The results of the pilot especially for the household listing exercise that was intended, as explained earlier, to develop a household sampling frame, showed that the original estimate on the number of households with at least a disabled person (Cases) within an enumeration area was a significant underestimate. This meant an increase in workload in terms of field enumeration as a result of a significant increase in Cases and by implication, Controls.
The main data collection took place in September and October 2003 and involved both persons with and without disabilities working as Research Assistants and Supervisors. From its inception, this study has achieved a major milestone in Malawi in that persons with disabilities were actively involved throughout the entire research process. In addition this study will update the sorely needed data on disability that have remained static since the last national survey on disability was conducted in 1983.
In order to be able to accomplish the data collection exercise within the limits of the budget, an agreement was made with SINTEF Health Research to sample 10 households with at least one disabled person from the household sampling frame of Cases developed during the listing of respective enumeration areas. These households were selected utilizing a Systematic Sampling Procedure.
Research teams used maps to locate selected enumeration areas and identified its boundaries. Having identified the boundaries, the members of the team listed all the households that were found to exist at the time of the survey. The listing was done utilizing a household listing and screening form that was designed specifically for this study. Utilizing this screening form, all households listed in the enumeration area were classified as either cases or controls in two respective columns of the household listing and screening form. Realizing that one of the needs of the study was to derive an estimate of the prevalence of disability in Malawi, research assistants, as advised, recorded the number of disabled persons in each and every household screened to be a case during the household listing exercise.
Having developed a household sampling frame of cases and controls respectively in a given enumeration area, 10 cases and 10 controls were independently selected utilizing systematic sampling procedures. Questionnaires were then administered to these households.
CSR was also responsible for data entry and cleaning. All questionnaires were controlled and signed by a supervisor after the interview. Completed questionnaires were transported to the University of Malawi, Centre for Social Research in Zomba for data cleaning and entry. Data were entered into SPSS data files and upon completion of data entry and data control, the data files were relayed to Norway and furthered analysed using SPSS 11.0.
The reliability of the results presented is a crucial aspect of all studies – and it is thus important that results are not biased by factors that can influence their interpretation. We know for example that men and women have different traits and characteristics that may influence the way that they respond to certain questions. These types of factors are called confounders. In this study we have attempted to control for the effects of confounders (in particular gender and geographical region) throughout the analysis and presentation of results.
Name | Affiliation | URL | |
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Southern African Federation of the Disabled | info@safod.net | www.safod.net | |
Advisor Hanne Witsø | Norwegian Federation of Disabled People (FFO) | hanne.witso@ffo.no | www.ffo.no |
Professor Arne H. Eide, Dep. of Living Conditions and Health Services | SINTEF Health Research | arne.h.eide@sintef.no | www.sintef.no |