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The negative impact of musculoskeletal diseases on the physical function and quality of life of people living in developing countries is considerable. This disabling effect is even more marked in low-socioeconomic communities within developing countries. In Mexico, there is a need to create community-based rehabilitation programs for people living with musculoskeletal diseases in low-socioeconomic areas. These programs should be directed to prevent and decrease disability, accommodating the specific local culture of communities.
The objective of this paper is to describe a research protocol designed to develop, implement, and evaluate culturally sensitive community-based rehabilitation programs aiming to decrease disability of people living with musculoskeletal diseases in two low-income Mexican communities.
A community-based participatory research approach is proposed, including multi and transdisciplinary efforts among the community, medical anthropology, and the health sciences. The project is structured in 4 main stages: (1) situation analysis, (2) program development, (3) program implementation, and (4) program evaluation. Each stage includes the use of quantitative and qualitative methods (mixed method program).
So far, we obtained resources from a Mexican federal agency and completed stage one of the project at Chankom, Yucatán. We are currently receiving funding from an international agency to complete stage two at this same location. We expect that the project at Chankom will be concluded by December of 2017. On the other hand, we just started the execution of stage one at Nuevo León with funding from a Mexican federal agency. We expect to conclude the project at this site by September of 2018.
Using a community-based participatory research approach and a mixed method program could result in the creation of culturally sensitive community-based rehabilitation programs that promote community development and decrease the disabling effects of musculoskeletal diseases within two low-income Mexican communities.
Musculoskeletal diseases are highly prevalent in communities of many developed and developing countries, resulting in important health problems for individuals and society [
The negative impact of musculoskeletal diseases on the physical function and quality of life of people is more marked within developing countries [
In the Mexican northern state of Nuevo León, the prevalence of osteoarthritis is 17% [
Specifically, the health professionals of the University Health Center of Nuevo León (UHC-Nuevo León) have a particular interest in addressing the health problems posed by musculoskeletal diseases in their community. The UHC-Nuevo León is a primary health care program run by the Autonomous University of Nuevo León that provides health services to a large community of low socioeconomic level. On the other hand, the Latin American Group for the Study of Rheumatic Conditions in Indigenous People (Grupo Latinoamericano para el Estudio de Enfermedades Reumaticas en Poblaciones de Origen, GLADERPO) is interested in creating interventions for decreasing the disabling effects of musculoskeletal diseases in a municipality called Chankom, which is an underserved Mayan community located in the state of Yucatan. Consequently, these two groups are looking to design rehabilitation interventions aimed to address the musculoskeletal-related disability within their communities of interest.
Rehabilitation is defined as an “enabling” process aimed at reversing the “disabling” effects of a pathological condition [
Particularly, rehabilitation interventions have proven effective to decrease pain and improve physical function with people suffering from rheumatologic diseases [
The concept of community-based rehabilitation (CBR) has evolved over 30 years of community work, mostly in developing countries. CBR started as an approach of biomedical service and gradually progressed to a “human-rights” approach supporting community development [
Nevertheless, there have been some limitations in the application of the CBR approach worldwide, which include a lack of cultural sensitivity [
The concept of cultural sensitivity obtains significant relevance when dealing with very different communities, as in the case of the community-UHC-Nuevo León and Chankom. The 5 community health centers that form the community-UHC-Nuevo León provide care to 52 urban neighborhoods (approximately 140,000 persons). The entire population of this community speaks Spanish and belongs to a low to middle-low socioeconomic level. On the other hand, the community of Chankom Municipality has 4340 inhabitants spread across 11 small rural settlements or commissariats. The majority of Chankom’s population speaks Mayan and lives in very high levels of poverty. Given the sociocultural differences between these two communities, it is essential to adopt the concept of cultural sensitivity, and not to take a “one size fits all” approach for the development of the CBR programs.
Another important limitation of the CBR approach is the lack of formal research and scientific evaluation of its goals and processes [
CBPR is based on the following principles: (1) acknowledgment of the community as a unit of identity, (2) development of community strengths and resources, (3) promotion and facilitation of equitable and participatory partnerships with community members in all phases of research, (4) promotion of colearning and capacity building for all partnership members, (5) achievement of balance between knowledge generation and intervention for the mutual benefit of all partners, (6) focus on relevant problems for the community, (7) use of iterative and cyclical processes in all research, (8) involvement of all partners in the local and global dissemination of results, and (9) establishment of long-term commitment with partnership sustainability [
The use of CBPR strategies has resulted in increments of community capacity and positive effects on community health [
It has been stated that what really defines a social participation approach are the intentions and meanings given to the actions conducted by the people involved in it, and it is extremely important to be transparent about the intentions of using such a research strategy [
The main objective of this protocol, which we named Community Based Rehabilitation for Low Income Communities Living With Rheumatic Diseases (CONCORD), is to develop, implement, and evaluate csCBR programs to decrease disability of people living with musculoskeletal diseases in the community-UHC-Nuevo León and the Municipality of Chankom. The hypothesis of this project is, “The execution of a CBPR strategy that permits a fusion of global and local knowledge will result in the creation of csCBR programs that will promote community development, thereby increasing social integration of disabled people with musculoskeletal diseases living in the communities of interest”.
The theoretical approach of this research project aligns with a social constructivist worldview, assuming that a successful CBR program can be developed through the construction of “new knowledge”. This new knowledge results from the “fusion of horizons” [
The CBPR strategy in this project will include a multi and transdisciplinary effort that involves a dialogic relationship between medical anthropology and some health sciences such as rheumatology, epidemiology, rehabilitation, nursing, and primary health care. Following the 2010 World Health Organization (WHO) guidelines for the development of CBR programs [
The “Community-Based Rehabilitation for Low Income Communities Living With Rheumatic Diseases (CONCORD)” protocol.
This stage will be undertaken over a 6-month period with the objectives of: (1) generating knowledge about the physical function problems produced by musculoskeletal diseases in the target communities; and (2) understanding the specific contexts in which these problems occur within each community. To achieve these objectives we will conduct an epidemiologic study in parallel with an ethnographic study.
This will be a “pure quantitative” study [
This will be an observational, cross-sectional, survey-based study. Due to the different population sizes, in Chankom we will conduct a census of all adults (≥18 years old) living in the community; whereas in the community-UHC-Nuevo León we will obtain a multistage probabilistic sample of 1516 adults (considering a precision of 3%, a 95% confidence level, an estimated osteoarthritis prevalence of 20%, observed in Nuevo León State, and the sample size adjustment recommended for multistage sampling procedures) [
The survey procedure will be structured following the Community Oriented Program for the Control of Rheumatic Diseases (COPCORD) methodology [
Physical activity will be assessed using the well validated Mexican-Spanish version of the Rapid Assessment of Physical Activity questionnaire [
Trained personnel will administer the survey to both communities in person. In the case of Chankom, a cross-cultural adaptation of the instrument to the Mayan language was conducted [
The specialist will conduct a thorough medical assessment of all confirmed cases. This assessment will include radiographic evaluation, medical history, and physical examination with the objectives of evaluating the impact of disease on physical function and the presence of factors for functional decline and disease progression.
Physical function will be evaluated according to Glass’s tenses of “human functioning” [
A member of the research team will perform periodic screenings to ensure the quality of the database. We will estimate descriptive statistics (central and dispersion estimates). In the case of the community-UHC-Nuevo León, we will also estimate 95% confidence intervals correcting for the three-stage sampling. We will use linear and logistic regression models to evaluate the factors associated with disease presentation and with impact on health and physical function utilizing specialized statistical software (STATA version 12).
This “pure qualitative” study [
We will conduct a study from the perspective of ethnography [
The fieldwork will include purposeful sampling of key persons, activities, social and familiar events, and documents. Key persons will include: (1) community members who have musculoskeletal diseases involving different body regions; (2) community leaders involved in community development activities; (3) representatives of health professionals involved in the care of people with musculoskeletal diseases in these communities; (4) representatives of health providers not officially recognized by a professional association (eg, bonesetters, masseurs, etc); (5) representatives of the local government; and (6) representatives of social development institutions (state and nongovernmental). These persons will be interviewed through informal and formal (in-depth interviews and focus groups) techniques.
We will perform participant and nonparticipant observations of individual’s activities (eg, occupation) and social, familial, cultural, and provincial events. These observations will be chosen according to their relevance to the musculoskeletal disability problematic within each community. Finally, we will obtain written documents that are relevant to understand the problem of musculoskeletal disability within each community (eg, local disability laws, social welfare rules, clinical practice guidelines, advertisements, etc).
All activities in Chankom will be conducted using Mayan translators who are fluent in Spanish and Mayan languages and are recognized by the community as members of their own. Access to each community will be negotiated with community leaders and local authorities. Data will be recorded by the use of field notes and audiotape recorders. We will aim to achieve thematic and/or theoretical saturation [
Data will be analyzed and interpreted by the research team. The team will work on concept generation, typology development, and execution of comparative strategies. Constant reflection about team members’ emotions and prejudices that emerge while conducting the fieldwork will be executed. Data analysis and interpretation will be done through a continuous cycle of analysis-interpretation-reflection. The analysis-interpretation phase will feed into the data acquisition phase; hence they will occur simultaneously. An iterative analytic-interpretative process will be use in which theoretical ideas will be used to make sense of data and the data will be used to change theoretical ideas [
Completing this ethnography will help us understand the disability problematic caused by musculoskeletal disorders in the communities of interest. This study will allow the identification of barriers and facilitators for the optimal function of the population who suffers from musculoskeletal diseases in Chankom and the community-UHC-Nuevo León. Understanding the local culture and the native perspective on the causes, management, impact, and prognosis of musculoskeletal diseases will help us define better the problematic related to musculoskeletal diseases within the communities. In addition, knowing the communities’ local, regional, and national social structures along with their functional dynamics will orient us on how to proceed during the following stages of the project.
This stage will take 12 months to complete and has the following objectives: (1) to organize the communities and form a partnership among these and members of academia under the principles of equity and mutual respect; (2) to define the priority problems related to the disabling effects of musculoskeletal diseases, and to identify possible solutions to these problems; and (3) to define the components of the csCBR program along with the necessary actions to implement them, assuring the necessary resources to execute them. This stage will follow a “qualitative dominant” methods perspective [
We will present the information gathered during the initial stage of this project to the community through the organization of community meetings at different strategic locations. During these meetings we will form 2 types of committees labeled as “first-level” or “second-level” committees. In Chankom, we will hold 11 meetings, one at each commissariat, and in the community-UHC-Nuevo León we will conduct 5 meetings, one at each of the health care units that form this center. These information meetings have the goal of creating awareness about the disabling effects of the musculoskeletal conditions explored within these communities. By the end of each meeting we will ask the community to choose 4 persons to constitute a first-level committee. A person from each of these first-level committees will participate in the second-level committee. There will be only one second-level committee, which includes representatives of all the strategic locations within our target communities (11 in Chankom and 5 in the community-UHC-Nuevo León).
The second-level committee of each community will be legally constituted as a “civil association”. This will be important for allocating and requesting financial resources, because in Mexico most government and nongovernment institutions can only serve organizations of this kind. The second-level committee will directly interact and work with representatives of the academic institutions involved in this project. During the first meeting of all committees, the members will define their roles as well as the rules for collaboration in relation to the processes of communication, decision making, and conflict resolution. We will use a nominal group technique, which is a group decision-making method, based on procedures for ideas’ exposition, discussion, and ranking that allows everyone’s opinion to be taken into account, reaching the best possible solution that is constituted by a mixture of all group members’ ideas [
The second-level committee and the academics will be in charge of all methodological and administrative decisions for the project, as they will take on the role of the principal investigator. All decisions taken within this partnership between communities and academia, from now on referred to as “the partnership”, will be the result of an ongoing analytic-interpretive-consensus process. In addition, the information and decisions generated within the partnership will be disseminated to the community via the first-level committees. In the same token, the community will be able to communicate with the second-level committee and academics through the first-level committees.
The first task for the partnership and the first-level committees will be to define the priority problems within their communities. The groups will use the knowledge generated during stage one of this project and the elements described by the WHO CBR matrix [
The global evidence assessment will largely be the responsibility of the academic partners. This will be accomplished by combining the methodology for “overview of reviews” proposed by the Cochrane Collaboration [
Priority problems and the plan to attend them will be defined and written as an evidence brief (ie, a document that summarizes how the available evidence pertains to a pressing problem, select options for addressing the problem, and key implementation considerations). This evidence brief will be structured following the ideas developed by the McMaster Health Forum [
The components of the csCBR program will be defined using the principles of the Communicative Action Theory, which assumes that communication aimed at reaching agreement is the base from which to coordinate the activities of social change [
Key decision makers are defined as those knowledge users who are able to influence the decision-making processes of their respective areas. The partnership will identify key decision makers using the information gathered during the previous stage and substages of the project. We anticipate that identified key decision makers will represent at least one of the following areas: (1) traditional medicine, (2) professional health care, (3) government and nongovernment social welfare, and (4) health policy. During this part of the project we will intend to form an alliance with these key decision makers in order to create commitments that will ensure human and material resources for the execution of the csCBR program, independently from resources of this research project. We will recognize these key decision makers as “powerful allies”, based on the privileged position of power they held within their respective areas. Potential powerful allies will be invited to participate in the stakeholder dialogue through letters and person-to-person invitations.
The dialogue will be conducted over the course of several sessions in which participants will gather in a neutral, public location to talk about the information described in the evidence brief. A neutral facilitator, who will ensure a respectful and equitable communication among participants, will moderate the stakeholder dialogue. This facilitator will be responsible for all participants having the same chance to express their views during the dialogue. The final products from the stakeholder dialogue will include a dialogue summary (ie, a distillation of the key themes and insights that emerged during the dialogue) and the formation of a complex csCBR program composed by different components or actions along with a clear description of their respective expected outcomes. It is anticipated that these actions will include individual, community, and societal targets.
The components of the csCBR program will be defined through a nonforced consensus achieved through a process agreed on by all participants at the beginning of the dialogue. Once the dialogue is completed, the csCBR program will be written, and the resulting document will be shared with all participants in order to assure its fidelity in relation to what was agreed during the dialogue. Agreements with powerful allies will be confirmed and clinched by signing letters of commitment. This strategy aims to favor the long-term sustainability of the csCBR program within each targeted community.
This stage will be completed over 6 months following a “quantitative dominant” approach [
We will choose 1 strategic site at each community (ie, 1 commissariat in Chankom and 1 health center of the UHC-Nuevo León) to implement the csCBR program designed during stage two of this protocol. An anthropologist will assess the operational aspects of the csCBR program using nonparticipant observations, informal interviews, in-depth interviews, and focus groups. This qualitative information will be used to design two questionnaires to evaluate the presence of facilitators and barriers for the implementation of each of the components of the csCBR program in the community. There will be one questionnaire designed for users of the program and another one for personnel involved in the program’s execution. Trained interviewers will apply the questionnaires to all participants of the pilot test through home visits, visits at jobsites, or telephone calls.
Qualitative data will be analyzed and interpreted by the anthropologist and some members of the partnership using content and thematic analysis techniques. This analysis then will be presented to all partners to decide the content of the questionnaires. We will use descriptive statistics to rank the frequency of facilitators and barriers observed during the pilot test. The partnership will use this information to make decisions about relevant changes to the original csCBR program and to elucidate implementation strategies aiming to improve its successful implementation in the community. Once changes have been made, we will proceed to implement the updated csCBR program in both communities.
This stage will last for 18 months following a “pure mixed methods” approach [
Quantitative methods will consist of a longitudinal, prospective, and comparative pre/post intervention observational design. Qualitative data will be gathered through ethnographic fieldwork to understand the dynamics and mechanisms of action of each of the csCBR program components. The ethnographic work will also inform quantitative findings about the impact of the program on functioning and QoL.
The quantitative sampling strategies will vary between our two target communities. In Chankom, we will include all the people enrolled in the CBR program together with a sample of people with equivalent ethnic, cultural, and socioeconomic characteristics, who live outside Chankom and have not been exposed to the program (control population). In the community-UHC-Nuevo León, we will assemble a random probabilistic sample of people with musculoskeletal diseases who are involved in the CBR program, and an equal sample of people with osteoarthritis living in a community with similar socioeconomic and cultural characteristics as the community-UHC-Nuevo León, but that has not been in contact with the program (control population). Quantitative results of stage one will provide us with the information needed to calculate appropriate sample sizes. The ethnographic work will require purposeful sampling of people who participated in activities that were implemented in the CBR program for at least 3 months, in both target communities. This will assure that sufficient experience with the program’s processes and activities has been accumulated.
For the quantitative part, we will take baseline measurements, prior to the implementation of the program, and follow-up measurements every 6 months (4 measurements in total until 18 months) in both the target and control populations. Subjects of the control populations will be identified using the COPCORD screening methodology described in stage one of the project. We will measure: (1) 3 different tenses of physical function [
As already mentioned, we anticipate that the csCBR program will include interventions at different levels, from the personal to the institutional level. In consequence, outcomes will be defined and measured according to the theoretical understanding of each level.
Hypothetical functioning will be measured through the WHO Disability Assessment Schedule 2 (WHODAS 2.0). The WHODAS 2.0 is a generic health-related disability assessment with excellent psychometric properties and was created through an extensive multicultural effort [
The ethnographic fieldwork will be conducted by a medical anthropologist and will include participant and nonparticipant observations, in-depth interviews, and focus groups. These qualitative methodologies will be conducted to understand the mechanisms of action of the different components of the program, along with their respective positive and negative aspects. In addition, the fieldwork data will help us in identifying relevant effects of the csCBR program, which can be measured quantitatively.
We will include descriptive and inferential statistic techniques to analyze the quantitative data. Inferential techniques will include multilevel modeling to explore effect modifiers on the outcomes of interest at different levels (eg, municipality, commissariat, or household levels), including between-group comparisons among target and control populations. We will use the statistical software STATA version 12. Ethnographic data will be analyzed following an analytic-interpretative-reflexive strategy from a medical anthropology perspective. These analyses will be further enriched by discussions with the partnership. All analytic and methodological decisions will be carefully registered in an audit trail. The results of this stage four will support decision-making processes within the partnership, allowing planning and conducting of a new situational analysis, thus completing the cyclical nature of the project (see
The complexity of this project poses challenges for obtaining funding. Funding agencies in the developing world lack awareness of the need for this type of project and knowledge about the use of mixed methodologies. As such, we used different strategies for communicating the methods of the project to different audiences. In addition, we have applied for funding at diverse agencies, asking separate support for conducting the different parts of the project.
So far, we obtained resources from a GLADERPO study, founded by a Mexican federal agency, and completed stage one of the project at Chankom. We are currently receiving funding from an international agency to complete stage two at this same location. We expect that the project at Chankom will be concluded by December of 2017. On the other hand, we just started the execution of stage one at the community-UHC-Nuevo León with funding from a Mexican federal agency. We expect to conclude the project at this site by September of 2018.
This project represents an alternative approach for developing csCBR programs for low-income communities. This alternative considers both the research and the practice involved for the creation and execution of this type of program, and follows a participatory research approach. The main theoretical assumptions that give foundation to this project are: (1) a partnership between the community and academia is ideal, because they have different, noncompetitive, but yet complementary agendas (communities are more interested in their social development and well-being, while academia is more interested in producing and disseminating knowledge); (2) it is possible to construct new knowledge from the fusion of horizons between the community and academia; (3) reaching agreement through communicative practices will result in actions that promote social change; and (4) it is possible to build, understand, and evaluate complex multilevel interventions through the application of quantitative and qualitative methods.
The primary motivation behind this project is a need for interventions directed to reducing musculoskeletal-related disability identified by health professionals and academics. This need was informed by diverse experiences of professionals and researchers interacting with disabled people in low-income communities. Therefore, this project is the result of a genuine real life concern about the lack of social justice present in the lives of people living with musculoskeletal diseases in low socioeconomic geographic locations.
Historically, the development of CBR programs within developed and developing countries have presented some issues. These issues include the “one size fits all” strategy that is used to build such programs without considering the gap between what is needed and what is available within a community [
Our approach to csCBR program development acknowledges such problems and tries to address them through the application of a mixed method program that is “cognizant, appreciative, and inclusive of local sociopolitical realities, resources, and needs” [
Projects of this nature will always be at risk of generating power imbalances between the members of the partnership and between the partnership and the powerful allies. This is why we are incorporating a real transdisciplinary collaboration, which involves the community and representatives from the health and social sciences. The work performed by the social scientist(s) within each stage of the project will help to disclose power imbalances, induce reflection about them, and remediate power differentials over time. This will also help to give a sense of ownership of the CBR program to all participants within the partnership and to make the collaboration with powerful allies more efficient.
Another substantial issue, registered during the development of CBR programs, is the lack of proper research and evaluation of the effects that these programs have on the disablement process within communities [
Our approach to the problem of evaluating CBR programs is to incorporate mixed methods research, in which both qualitative and quantitative methods are executed either in sequence or in parallel [
We opted for an ethnographic approach, due to our need for understanding the knowledge, values, and emotions towards musculoskeletal disability of people living in low-income communities within their natural settings. On the other hand, we are taking a quantitative prospective and observational approach, which will allow the use of powerful statistic tools such as multilevel analysis [
There are important differences between the community-UHC-Nuevo León and the community of Chankom. These differences have methodological and organizational implications. Nuevo León’s community is 100% urban, while the Mayan community of Chankom is completely rural. This situation influences the type and consequences of existing disabling situations within these communities. The community-UHC-Nuevo León is immersed in one of the most violent Mexican States, while Chankom is situated in the least violent state of Mexico, Yucatan. This could have many repercussions on the feasibility of conducting real ethnographic work in Nuevo León because of the need for the researcher to live there for a period of time. A solution could be to locate and involve local social scientists in that area. In addition, there are important differences between communities in relation to size and spoken language. Chankom is a small indigenous community with little more than 4000 individuals who mostly speak Mayan; meanwhile, community-UHC-Nuevo León has more than 140,000 Spanish-speaking individuals. This will require constant translation efforts and the use of a significant amount of human resources. Differences between our target communities will allow us to compare between sites, advancing our understanding of the methodology required to conduct this type of project.
Another important difference between the sites involved in this project relates to the status of their local health structures and community organization development. The community-UHC-Nuevo León has a strong local primary health care system embedded in a well organized community. Whereas, there is no local health care system in Chankom and the community is poorly organized to confront their health problems. Consequently, in the community-UHC-Nuevo León we will include and share power with the community through collaboration with local health providers and community leaders since the first stage (situational analysis) of the project, which is the traditional CBPR approach. However, in Chankom we are taking a modified CBPR approach in the sense that the situational analysis will be conducted as a project driven by people from outside the community. This strategy aims to use the initial research efforts and results to motivate community organization, which will facilitate the establishment of an authentic partnership for the conduction of the next stages of the project. Chankom’s situation exemplifies the difficulties encountered by trying to apply an approach developed in more organized communities to a community where organization for solving health issues is nonexistent, as are the majority of poor rural communities in Mexico.
In conclusion, this project is intended to move forward the methodology for the development of csCBR programs in low-income communities. These programs will contribute to community development of these Mexican socially marginalized areas and will cover the need to receive adequate health care for people living with musculoskeletal diseases at these locations.
6-minute walk test
community-based rehabilitation
community-based participatory research
community served by the University Health Center of Nuevo León, Monterrey, México
Community Oriented Program for the Control of Rheumatic Diseases
culturally sensitive community based rehabilitation
functional dexterity test
Grupo Latinoamericano para el Estudio de Enfermedades Reumaticas en Poblaciones de Origen Grupo (Latin American Group for the Study of Rheumatic Conditions in Indigenous People)
Health Assessment Questionnaire Disability Index
quality of life
randomized controlled trial
University Health Center of Nuevo León, Monterrey, México
World Health Organization
WHO Disability Assessment Schedule 2
We thank Mr Diego Yeh Cen, community leader of Chankom for his invaluable input for the development of this protocol. ALS receives funding from CONACYT (Consejo Nacional de Ciencia y Tecnología de México. Becas para estudios en el extranjero) and from the CIHR-Vanier Scholarship in Canada for his PhD studies. Publication’s costs were covered by the School of Rehabilitation Science at McMaster University.
ALS took the lead role to conceptualize, design, draft, and approved the final version of this protocol. JR, IPB, JL, SW, MW, JRA, JAN, DOR, RMV, and RBT contributed ideas for conceptualization and design of the protocol.
None declared.