COLLECTING DATA IN A DEVELOPING COUNTRY

Susan J. Mulholland*, John T. Lysack**, Tanya L. Packer* *School of Rehabilitation Therapy & **Department of Mechanical Engineering Queen's University, Kingston, Ontario, Canada

ABSTRACT

The recent introduction of SIG 17 to RESNA reflects a growing interest in the field of international appropriate technology. When designing assistive technology for persons with disabilities (PWD) in a developing country, the Western designer is faced with many challenges. Strategies commonly used in the West must be modified or abandoned in search of approaches acceptable to the local culture. This paper will look at strategies, methods and considerations in collecting data to determine users' needs and design parameters in a developing country. In this paper "researcher" refers to the person(s) responsible for gathering the data.

BACKGROUND

A search of the literature resulted in no structured or consistent guide appropriate for collecting data related to design parameters in developing countries. However, the fields of cross-cultural research, rehabilitation engineering, and occupational therapy provide a relevant and valuable foundation. Cross-cultural data collection or research can be defined as a goal-oriented interaction between people from two or more cultures (1,2). Cultural differences present challenges not otherwise encountered in the data collection process. Researchers must be aware of, and account for differences in beliefs and values, styles of verbal and non-verbal interaction, and the sense and use of time and language. The application of Western methods of information gathering to non-Western contexts may also present difficulties as many people of the developing world (elites or villagers) do not understand or appreciate the concepts of evaluation, measurement, or anonymity. Using multiple data collection strategies as well as multiple data sources may resolve some of the problems associated with cross-cultural data collection, and improve the quality of the information collected. Involving host country residents in the research process is suggested as a means of coping with cultural and language differences, and may provide guidance in selecting appropriate research methods. If the project is to be sustainable and hence successful, host country partners must have a vested interest in it. (1,2,3,4,5). Traditionally, the development of assistive technology relied heavily on the knowledge and experience of rehabilitation professionals. The literature now reflects growing support for involving consumers in the design process to maximize the "success" of the design and minimize device abandonment (6,7,8). The PWD is a key player within the design team and all participants must endeavor to recognize the importance of this role. Orpwood (7) recommends introducing a simple model to the potential user at an early stage to elicit feedback and advice on the design. He feels that only this approach will yield an appropriate user-technology interface. A similar strategy has been suggested when designing products for use in a foreign context, to ensure they fit both the functional and cultural needs of the individual or population (9,10,). The consumer based approach is also in keeping with the philosophy of community based rehabilitation and client-centred occupational therapy research and practices (11,12).

STATEMENT OF PROBLEM & APPROACH

A recent project proposed to design an appropriate mobility device for women with disabilities living in rural and low income communities in India. The researcher was responsible for collecting data on the users' needs and design parameters. Due to the complex nature of assistive technology, the overall approach to data collection needed to be: 1. holistic, 2. reliant on the skills and expertise of various people, 3. adaptable to diverse situations. A literature search did not provide information relevant to the task until other disciplines were consulted. The project in India gave the researcher valuable on-site experience and insights, and the opportunity for first hand trial of strategies and methods proposed in the literature. The following data collection strategies, methods, and considerations are a combination of academic findings and in-the-field experiences in India.

DISCUSSION

Who Partners: For an international technology project to be successful, the literature advocates a collaborative approach (3,4,5). The partnership should facilitate a sharing of information between countries, and the project must be beneficial to all. It also must use the skills and strengths of team members in a complimentary fashion to create a holistic approach. The PWD is a key partner, and other members may contribute skills from the fields of occupational therapy, ergonomics, engineering and/or product design. For the mobility device project, the team consisted of a Canadian occupational therapist and an engineer pursuing graduate studies, and in India, women with disabilities, an occupational therapist, a product designer, and design students. Host country partners are typically associated with government or non-Governmental Organizations working in the area of rehabilitation. They can provide insights into cultural and ethical issues, and the political and bureaucratic climate and systems. Partners may identify potential users, act as translators, and facilitate entry into a community by way of introducing the researcher to PWD. A true partnership approach will ensure that host country partners have a vested interest in the project and the skills to ensure its sustainability when Western partners move on. Translator: Sensitivity must be used in choosing a translator, for in many cultures their gender, ethnic background, and religion may impact on the success of the interview. For example, using a local translator of the same gender as the PWD will ensure the comfort level of the PWD and family, therefore promoting a free exchange of information. Prior to interviews the researcher must educate the translator such that s/he has a sound understanding of the project, is clear on her/his role, and knows exactly how the data will be gathered. Merryfield(2) warns researchers not to assume their English is the same as that of the host country or translator, as there are many "English languages." PWD: Many persons with disabilities in developing countries will not be listed with standard rehabilitation organizations or Non-Governmental Organizations. To identify potential users, one must be willing to rely on word of mouth and local assistance, such as asking local people if they know of any other PWD. This is sometimes called "snowball-" or "network sampling" (14). Researcher: Prior travel to the country in which the project will be taking place may help sensitize the researcher to the culture, enable her/him to assess the feasibility of the project, and provide opportunities to develop partnerships. An extended stay within the culture allows for general observations of culture, availability of materials, manufacturing options, aesthetics etc. An easy going attitude, flexibility, and determination will benefit the researcher, who must alsobe aware of any cultural and professional biases s/he brings to the project and strive to set them aside. For example, not all cultures value independence (13): it may more appropriate for a family member to assist with, or perform a task, than to rely on an assistive device. The researcher also must be aware of what effect her/his gender and status as a Westerner may have on the PWD and the community's response to questions (2,13). Participants' answers may be based on what they think the researcher wants to hear, not what they truly believe. This is commonly referred to as the Rosenthal effect. Where Lack of literature on PWD in developing countries, as well as the diversity of culture, geography,and assistive technology needs, forces the researcher to gather data "in-the-field". Getting to these locations may be very difficult, depending on one's expectations. Unpredictable events such as natural disasters or war may hinder or prevent the journey. Since maps are commonly not available, one must be prepared to ask for directions throughout the journey, sometimes from a number of people, to ensure a consensus on the correct direction. Home addresses are often vague, consisting of a family name, the village, and perhaps a statement describing the location of the home i.e. "across from school". Arriving in the village in search of a particular person, the most efficient strategy is to request a helpful community member to accompany you in the car to show the way. How There are many methods for collecting information. Due to the brief nature of this paper, only the 4 most relevant methods and considerations have been outlined. Interviews: Because of high rates of illiteracy in developing countries, especially amongst PWD, a data collection method requiring written responses is inappropriate. Interviews are often the most efficient and culturally appropriate method for gathering information. A qualitative interview style, such as the "general interview guide approach", allows for exploration when new or unfamiliar issues arise while providing some consistency for the efficient gathering of information (14). It is up to the individual researcher to determine which type of interview is most appropriate based on the type of information required and the interviewer's skills. It is both difficult and often culturally unacceptable to interview PWD in isolation. Arriving in a village or slum the researcher is commonly surrounded by interested family members, neighbours and community members. It can be difficult to obtain uncontaminated opinions in developing countries because the living style is often communal and crowded (15). Interviewing the PWD, family and other community members in a group session is in keeping with their cultural method of communicating and sharing information. The benefits of interviewing a group includes drawing on multiple opinions and experiences at once. Unfortunately, the presence of others may intimidate PWD's and influence their responses. Women with disabilities are often difficult to interview as men may not allow them to be questioned, or will act as their spokesperson. Observations: To determine the user's functional needs it is necessary to observe activities which the assistive device is intended to enhance or perform. Because many of the activities are alien to our culture, it is essential they be observed and recorded in situ. This also allows for task analysis, including a break down of physical movements, tools, and posture necessary for performance. Photographs provide an accurate depiction for future reference. Photographs: Still photographs provide "objective" visual data which accurately depicts a reality at a specific point in time (16). Photographs serve four potential purposes. First, they may be used to supplement and clarify data collected using other methods i.e. photographs of a woman cooking may confirm a written description of her working posture. Second, photographs may be used independent of any other data i.e. a photograph of a stove enables one to conceptualize the challenges faced by the PWD in performing cooking activities. Third, taking and leaving photographs of the PWD and family greatly enhances rapport, and is a much appreciated "reward" for participation in the project. Finally, the photograph provides a medium by which to concisely and accurately convey information to others, especially upon returning home. Videorecording can be a culturally invasive but very accurate data collection strategy, especially for recording movement. Host country partners may have insight into the appropriateness of using this technique. Other: People with disabilities in rural or low income communities often have never seen, heard, or thought of the technology you would like to provide them. Therefore, it is essential that questions relating to their needs, the assistive device, or future technical demands, be kept simple and direct. The introduction of a simple model may present difficulties, especially if all aspects of the device are not in working order i.e. it was built to show proportions. Photographs, sketches or verbal descriptions are often difficult to conceptualize. Whenever possible a full scale working model of the assistive technology should be shown to ensure the PWD clearly understands what is being discussed. If attempting to elicit feedback the PWD may require a long learning and/or trial period, due to inexperience and unfamiliarity with such equipment. For example, when the researcher was in India and presented a new mobility device to PWD's unfamiliar with wheelchairs, they were unable to learn to propel, steer or turn the device within the normal expected period of time. Collecting data on users' needs and design parameters is an essential component to ensure the development of appropriate technology in the area of assistive technology. This paper reflects the lack of research into strategies, methods and considerations for such data collection in developing countries. As we move into the 21st century further exploration in this area is necessary to insure the success of future international assistive technology projects.

REFERENCES

1. Berry,J.W., Poortinga, Y.H., Segall, M.H. & Dasen, R.R. (1989). Cross-cultural psychology - research and applications. Cambridge: University Press.

2. Merryfield,M.M. (1985). The challenge of cross- cultural evaluation: Some views from the field. In M.Q. Patton (Ed.), New directions for program evaluation: Culture and evaluation (pp. 3-17). Washington: Jossey-Bass Inc..

3. Feurstein,M.,T. (1988). Partners in evaluation. HongKong: Macmillan Publishers.

4. Helander, E. (1992). Prejudice and dignity: An introduction to community-based rehabilitation. United Nations Development Programme.

5. Werner,D. (1988). Disabled village children. Hesperian Foundation.

6. Batavia, A.I. & Hammer, G.S. (1990). Toward the development of consumer-based criteria for the evaluation of assistive devices. Journal of Rehabilitation Research and Development, 27(4), 425-436.

7. Orpwood, R.D. (1990). Design methodology for aids for the disabled. Journal of Medical Engineering & Technology, 14(1), 2-10.

8. Scherer,M. (1993). Living in a state of stuck. Cambridge,MA: Brookline Books

9. Sethi,P.K. (1989). Technological choices in prosthetics and orthotics for developing countries. Prosthetics and Orthotics International, 13, 117-124.

10. Stone, J.H. (1993). The international transfer of appropriate assistive technology. Technology and Disability, 2(2), 15-18.

11. Fisher,F.R. (1991). Assistive devices in rehabiliation: a time for change. Canadian Journal of Rehabiliation. 5(2): 67-69.

12. Kielhofner,G. (1985). A model of human occupaiton. Baltimore: Williams & Wilkins.

13. Spencer,J.,Drefting,L. & Mattingly, C. (1993). Incorporation of ethnographic methods in occupational therapy assessment. American Journal of Occupational Therapy, 47(4); 303-309.

14. Patton,M.Q. (1990). Qualitative interviewing. Qualitative evaluation and research methods. Newbury Park, CA: Sage Publications.

15. Cuthbert,M. Evaluation in third world settings: A Caribbean perspective. In M.Q. Patton (Ed.), New directions for program evaluation: Culture and evaluation (pp. 3-17). Washington: Jossey-Bass Inc..

16. Ball,M.S. & Smith, G.H.W. (1992). Analyzing visual data. Newbury Park, CA: Sage Publications.

ACKNOWLEDGEMENTS

Funded by the International Centre for the Advancement of Community Based Rehabilitation (ICACBR) Canada, in collaboration with the National Institute of Design, India. Susan Mulholland School of Rehabilitation Therapy, Queen's University Kingston, Ontario, CANADA, K7L 3N6 Tel:(613)545-6110 Fax:(613)545-6776 e-mail: 4SJM2@qucdn.queensu.ca