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METHODLOGICAL CONSIDERATIONS

This study has been a process involving many steps and methodological considerations. These are described in detail below and include the following: selection of CBR programmes for the study, study of research and previous evaluations, choice of methodology for data collection, selection of interviewees, use of inquiry groups to expand knowledge, design of the interviews and analysing the data. Finally, the limitations of the study are discussed.

Selection of CBR programmes for the study

A global list of existing CBR programmes, studies and evaluations was prepared by Uppsala University to form the basis for selection of suitable programmes to be included in this study8. Criteria for selection of suitable programmes comprised:

  • diverse geographical regions should be represented
  • various approaches should be represented (e.g. NGO driven and government driven)
  • several CBR sectors should be represented (e.g. education focus, rehabilitation focus, income generation focus, etc.)
  • distinct disability groups should be represented
  • both children and adults should be represented
  • programmes should have a gender perspective
  • programmes should include the participation of DPOs, parents and individual persons with disabilities
  • programmes should be well known to SHIA and WHO and easily accessed

The three countries identified and selected for this study were Ghana, Guyana and Nepal. These countries were selected because they fulfil the criteria for selection; in particular they represent differing approaches to CBR.

  1. Ghana's CBR programme is a national one, initiated by the government and driven by the Department of Social Welfare. UN agencies as well as Nordic DPOs have supported the project from its inception. Support to, and establishment of national and local DPOs have in recent years been an important part of the CBR programme. In Ghana the Association of the Blind has implemented its own CBR project parallel to the government initiative.
  2. In Guyana the CBR concept was introduced by an NGO especially established for this purpose. Children with disabilities and their parents were the main target group for the programme.
  3. In Nepal CBR is initiated and driven as a project by one of the national DPOs with support from SHIA and from the Nepalese Ministry of Women, Children and Social Welfare. Sign language training has been an important part of this CBR programme, partly because of a previous programme supported by SHIA and the Swedish Association of the Deaf. There are several other CBR programmes in addition to this one - all are implemented by different NGOs. One NGO has even established a National CBR Training Centre in Nepal.

Study of research and previous evaluations

In order to find an effective method for collecting evidence, measuring quality of life and assessing the usefulness of various CBR programme initiatives a number of desk studies were carried out:

  1. Study of information gained through previous evaluations9 10 11 concerning the impact of CBR as perceived by persons with disabilities themselves.
  2. Study of annual reports and monitoring reports from the three CBR programmes in Ghana, Guyana and Nepal.
  3. Study of data obtained by WHO in collaboration with the UN Special Rapporteur on Disability in 1999 by means of a questionnaire sent to all governments of Members States of the WHO and to 600 NGOs working in the disability field in the Member States of the WHO. The information focuses on issues related to four of the 22 Standard Rules on the Equalization of Opportunities for Persons with Disabilities: Rule 2 on Medical Care, Rule 3 on Rehabilitation, Rule 4 on Support Services and Rule 19 on Personnel Training.
  4. Study of the experience of using Participatory Research Approach (PRA) methods in qualitative studies (see below).
  5. Study of "quality of life" research and literature to establish possible categories for systematization of evidence (as indicated on page 11).
  6. Study of possible framework to systematize CBR programme initiatives, e.g. Standard Rules and CBR evaluation guidelines.

Choice of methodology for data collection

In order to determine how persons with disabilities and their families perceive the impact of CBR in changes to their own lives and living conditions it was necessary to find a method that involved active participation in the study by the individuals concerned. The PRA model was chosen as the best option because:

  • Participatory research brings together researchers and participants in a dialogue that expands the knowledge and awareness of both12. It is a learning process for all involved, and not just a process whereby some people accumulate information about others. Local people and professional researchers are equals in the research process - they are both researchers and learners13.
  • In participatory research, all who participate are both co-researchers and co-subjects. Cooperative inquiry is therefore also a form of education, personal development, and social action14. Participatory research is a three-pronged activity, which integrates a research process (social investigation) into educational work through an action designed to deal with specific problems15.
  • The goal of the research is political or social change derived from the information gathered. Knowledge gained in the process can be translated immediately into action for social change. Local people control the process of problem definition, information gathering and decisions about the action that might ensue from the information.

In accordance with PRA methodology this study was carried out as follows:

Studies were made in Ghana and Guyana in 2000, and Nepal in 2001. Representatives of SHIA and WHO introduced the project called "Impact assessment of CBR" to mini stries, agencies, INGOs and DPOs in each country. After this introduction assessments were carried out in three communities within each country. The communities were selected by the respective CBR programme management to represent various geographical and demographic conditions.

In each community persons with disabilities (and in some cases also their parents) who had been involved in the CBR programme were invited to participate in the study. These persons first met as a group (inquiry group) with the researcher to discuss, to understand jointly and to agree about the aims and design of the study. Following this, the SHIA/WHO researcher met each individual for in-depth interviews. Before leaving the community the researcher met the group again to summarize and discuss the findings, to make additional comments and reflections and to learn from each other. As a result some of the groups also decided to take action to address some of the problems identified.

Selection of interviewees

In-depth interviews were held with 33 individuals: 12 were parents, 7 were men with disabilities and 14 were women with disabilities. All of them had been involved in the CBR programme for at least three years. These 33 persons represented the following disability groups: 16 persons with physical impairment, 8 with hearing impairment or deafness, 6 with intellectual disability persons and 3 with visual impairment16. When parents were interviewed the children were present and, in a few cases, they also volunteered to comment. However, it was mainly the viewpoint of the parents that was being sought. In order to obtain a picture of the viewpoint of children themselves, complementary studies would be needed.

The selection of interviewees was made by the local CBR programme staff. It can be assumed that the selected persons were those believed to have a positive view of the CBR programme. As the study attempts to find how quality of life had changed and what types of initiatives were most helpful to bring about that change, it was essential to take a starting point in the successful exa mples. Thus, the positive bias in the selection was not a problem.

How representative are the views of these 33 persons? From previous evaluations of the three CBR programmes it can be concluded that the number of persons benefiting from CBR programmes remains low. The number of communities reached is limited, even in government-supported programmes such as those in Ghana. Even in communities reached by the CBR programmes many persons with disabilities are not found or targeted. The Nepal evaluation gave evidence that less than 40% of the disabled population had been reached in some communities. The reason for this limited contact is not yet fully understood, but persons with severe and multiple disabilities are often seen as "too difficult". Another reason may be lack of commitment or discrimination due to cast or socio-economic status.

Thus, the 33 interviewees are not representative of the disabled population of the countries studied. However, as their stories of successes and disappointments are very congruent, they can give us an enhanced understanding of the impact of CBR on quality of life for persons with different kinds of disabilities, as well as some ideas about which CBR programme initiatives have worked best.

Use of inquiry groups to expand knowledge

In addition to the individual interviews, inquiry groups were created in all three communities in each country - nine groups in total. The groups consisted of the persons individually interviewed, other persons with disabilities in the community, family members and local representatives of DPOs. Two group interview sessions were held with these inquiry groups, one session after the arrival of the SHIA/WHO researcher in the community and another before departure. Three group interviews with national DPOs in Ghana have also been made.

The outline of the study and the open interview guide were discussed at the first interview session. The participants contributed information about the local CBR programme, their own experiences, cultural and social knowledge of values. The recurrent session served to create a cooperative relationship, and the participants brought up additional subjects and questions. Through group interviews an additional 80 persons with disabilities and parents were reached and had their views recorded.

Design of the interviews

The interviews were taped and transcribed. An open interview guide was used, containing questions within the following areas:

  • How has your own life changed as a result of CBR?
  • What are the most important changes brought about by CBR in the community?
  • Has CBR improved your access to health services, rehabilitation, assistive devices and equipment?
  • Has CBR helped to improve your education? How?
  • Has CBR contributed to your self-reliance/independence and income generation?? How?
  • Have your communication skills and personal participation in family and community increased as a result of CBR?
  • Have you been able to influence government policy-making and planning?
  • How has CBR affected the role of DPOs?
  • What is your view of the future?

The interviews were carried out as conversations lasting between one and two hours and the group interviews often more than two hours. The data analysed totalled approximately 150 hours of recorded interviews. An independent interpreter was engaged to translate the communication between the researcher and the interviewees. When interviewing deaf persons a sign language interpreter was engaged, except in two cases where the mother and husband served as interpreters because the sign language used was peculiar to these individuals.

All individual interviews have taken place in the home of the interviewed person and the researcher has taken part in some of each person's daily activity at home, at school or elsewhere.

Analysing the data

All statements made by individuals and groups have been transcribed and organized into categories according to

  • the quality of life domain to which they referred
  • the particular type of CBR initiative to which they referred

The statements have been used as evidence in this study and form the basis for the conclusions drawn on the impact of CBR programmes as perceived by persons with disabilities and their families. When statements from communities in all three countries give the same evidence a conclusion has been drawn regarding the effects on the particular quality of life domains and regarding the impact of different CBR programme initiatives. In the few cases when statements have given evidence of differing opinions this has been reflected in the conclusion.

To validate the conclusions in this study, comparisons have been made with findings on the perceptions of disabled persons reported in earlier evaluations. This has further strengthened the conclusions in this study, as the earlier findings were very similar.

Limitations of the study

As this study is of an explorative nature and aims at assessing perceptions of persons with disabilities concerning the impact of CBR programmes, it was decided to use a qualitative enquiry method. Given the nature of qualitative enquiry, we caution against broad generalizations of these findings. However, as the answers given by the interviewees show a great congruence despite the differences in background and organization of the CBR programmes and despite differences in the political and cultural contexts, general conclusions may still be drawn.

The limitations of the study include:

  • The difficulty for a foreign person to establish a trustful relationship with the interviewees in the communities visited. This might lead to dishonest answers. However, at the same time, many of the interviews show signs of being open and critical. Some even used the researcher to send critical messages to the CBR programme leadership.
  • The difficulty not to influence interviewees with your own feelings, ideas and suggestions in a PRA study.
  • The difficulty to verify the translations to and from local languages.
  • To date no confirmatory study has been undertaken to verify the conclusions. Originally it was planned to hold feedback discussions in the inquiry groups and to conduct a complementary quantitative study involving a larger number of persons with disabilities and CBR programmes. However, due to serious health problems of the researcher this part of the study had to be excluded.