The Role of Mutual Support Groups for the Control of Diabetes in a Mexican City: Achievements and Limitations from the Patients’ Perspective ()
1. Introduction
Prevention and control of Diabetes Mellitus type II (DM-II) is a major challenge for health care systems world- wide. According to the World Health Organization (WHO), over 347 million people suffered DM-II in 2011, and by 2030, this could be doubled if no effective actions are undertaken [1] . Mortality in 2011 remained high with 1.7% of the world’s population dying from diabetic complications [2] . The reported prevalence of DM-II in Mexico among individuals aged >20 years is 7.5%, being the 12th leading cause of morbidity [3] and the leading cause of overall mortality since 2006 [4] . Hospital-related cost estimation to treat DM-II complications will account for ~2.6% of the gross domestic product in the coming years [5] . As part of the strategy to prevent and control DM-II and high blood pressure (HTN), in 1995, the Mexican health care system introduced the Mutual Support Groups (MSG) program [6] [7] . Studies show how MSGs increases knowledge about the disease, treat- ment adherence, and metabolic control among diabetic individuals [8] . MSG provides to the patient, the ability to effective self-management behaviors, such as taking prescribed medications, following diet and exercise regimens, self-monitoring, and coping emotionally with the rigors of living with diabetes [9] . Through MSG, patients are able to share experiences with others undergoing the same medical or behavioral tasks as an effective means of gaining mastery of tasks and improving disease outcomes. Moreover, the more likely support is usually with whom individuals identify and share, common experiences similar life experiences and age; leading to understanding, empathy, and mutual help [10] [11] . Authors have also shown that MSGs can support members controlling stressful psycho-social factors that can affect glucose levels in the short and long term [12] . Other studies have relied on qualitative methods to explore experiences and perceptions of diabetic individuals concerning the disease itself, as well as treatment modalities and lifestyle changes [13] [14] . While studies have shown that MSGs can have a positive effect on DM-II control. The operation of MSGs in primary health care settings has not been assessed from the “inside”, namely, from the perspective of the group members. However, although the MSG program has been carried out, in the last decade it has been an alarming increase in the inci- dence and complications of DM-II, suggesting a low impact of MSG in the strategy to support the effective management of the disease. The aim of this work was to assess whether knowledge or benefits of an effective con- trol of DM-II and its complications, were enhanced by Mutual Support Groups (MSG); and to identify strengths and limitations of MSGs in six different Health Care Centers (HCC) of San Luis Potosi, Mexico. In the current work, we studied practical issues that affect programs or policies in real settings, using the experiences and per- ceptions of the patients, with the objective of providing guide adjustments to improve MGSs.
2. Methods
2.1. Design and Participants
A Qualitative Evaluation (QE) [15] was carried out, using an ethnographic approach design [16] , which was begun in September 2011 and finished on May 2012. This study was performed at six HCCs administered by the largest health jurisdiction of the Ministry of Health in San Luis Potosí State in central Mexico. Two of the cen- ters were urban, two were rural and two served individuals living in both rural and urban areas.
Records for each HCC were reviewed to obtain data about the characteristics and context in which MSGs op- erate. Population coverage ranged from 2867 to 43,300 people, and the number of adults diagnosed with chronic conditions ranged from 269 to 1092 across the HCCs. The number of patients with a chronic disease attending MSG meetings averaged 28 (range 20 - 35), so that only 3% of the diabetic patients registered joined the ga- therings, which occurred daily, weekly, monthly, bimonthly and sporadically depending on the center (Table 1).
A purposive sample [17] of 28 persons with DM-II was selected (4 - 6 per center) to explore their perspective
Table 1. Health care centers’ characteristics in qualitative assessment, San Luis Potosi, Mexico.
1Includes diabetes mellitus and hypertension.
concerning the operation of MSGs. Inclusion criteria comprised having DM-II diagnosis and attending MSG regardless of the frequency. The health workers perspectives were investigated and will be presented in another publishing.
2.2. Data Collection
Semi-structured interviews following a guide (Table 2) were conducted including: 1) Conceptualization of MSG; 2) Reasons for attending MSGs; 3) Benefits of participating in MSGs; 4) MSG activities; and 5) Evaluation of MSGs. Only one interview was conducted per participant. Interviews were carried out consecutively and parallel to the analysis until data saturation was reached. Interviews lasted approximately 60 minutes, were audio-record- ed, and then transcribed following standard guidelines. The individual interview was chosen because it allows participants to express their views more freely. The interviews were performed in a separate room of the health centers so it was possible for respondents to express themselves freely.
2.3. Data Analysis
Conventional content analysis [18] was used to analyze and interpret the data. Both authors of this article parti- cipated in this process. The procedures involved comprised the following: 1) Systematic verbatim transcription of interviews; 2) Detailed reading of transcripts, and initial coding to identify relevant topics; 3) Pooling of codes to build a unified comprehensive coding scheme; 4) Additional coding based on the resulting scheme aimed at recognizing commonality and variability in the narratives to identify collective shared concepts and ba- sic ideas (done by the first author only); 5) Discussion of results between the researchers; and 6) Presentation of final results to various informants in order to verify the findings [19] . The Atlas Ti 5.2 software was used to car- ry out the analysis.
All informants involved provided verbal informed consent. Ethical principles concerning autonomy, self-deter- mination and data confidentiality were followed. The Ethics Committee at the Mexican Ministry of Health ap- proved the project.
3. Results
The MSGs program comprises monitoring and management of DM-II and HTN among adults diagnosed with these conditions. Physicians, nurses and health promoters from public primary Health Care Centers (HCC) are responsible for operating the MSGs. HCCs within public institutions organize MSGs based on the operational criteria outlined by the Ministry of Health and the Mexican Official Norm for the prevention, treatment and management of DM-II.
The MSGs strategy is strengthened by the “Oportunidades” program, which in general delivers conditional financial support to poor families, but in this specific context to adults suffering from DM-II, HTN or another
Table 2. Interview guide used in the qualitative assessment of Mutual Support Groups (MSGs).
chronic disease, (arthritis, tuberculosis) provided that they participate in MSGs.
Within the respondents, the majority of persons (n = 20) were aged 50 years or more, 21 were female house- wives, and 23 lived in vulnerable conditions reflected by an income of ~30 USD per week. The proportion of local and out-of-town patients was similar. 11 respondents inhabited rural areas (Table 3). Among the patients interviewed, some attended MSG meetings regularly and others sporadically, with the latter attending HCCs lo- cated in rural areas, and it was mostly these rural patients who had negative views about the MSGs.
3.1. Conceptualization of MSG
Most of the patients interviewed considered the MSG as a meeting where they attend “talks”. They associated these meetings with the Oportunidades program run by the Ministry of Health.
A few respondents considered the MSG as a support network to empower patients to perform self-care activi- ties, and to help them dealing with the disease.
… I have been to several health centers and yes, people with hypertension and diabetes go to these groups; they do exercises and crafts, but here they only have these meetings to give us talks … (Female patient from a rural HCC)
... It’s a group where we all help each other, so you don’t feel you’re alone; it helps you feel more relaxed if you talk with other people about your things. If someone has a problem, then you start to discuss different solu- tions to the problems you have with a disease like this. Besides, you know that it will get worse ... (Female pa- tient from a rural/urban HCC)
3.2. Reasons for Attending MSGs
Some patients perceived an “obligation” to attend group meetings as a condition to continue receiving the finan- cial benefits of the Oportunidades program. Two women attending rural HCCs mentioned about that.
… when they come to distribute the Oportunidades [program] aid, they have a meeting first, they give talks, and then they schedule us to come back the next week, which is when they will tell us when they are going to give us the Oportunidades money. That’s what I mean when I say that they force us to go. I have been told that my responsibility is to go so they can give me a check-up, and also to go to the talks, so that’s why I go … (Female patient from a rural HCC)
Other patients reported that they were interested in learning about their illness and to learn about how to take care of themselves. Some reported attending MSGs to improve their physical and mental well-being and also because they considered that sharing and communicating with other members could be valuable.
… for me it’s important to attend the group sessions because you learn a lot about your disease, about the drugs we take, and about how we should care for ourselves so we don’t get further problems; you also learn [about] what you should and shouldn’t eat, and the symptoms we could get when we take our insulin and what to do in each case … (Male patient from an urban HCC)
3.3. Barriers to Participate in MSGs
Some patients faced barriers to attend MSG meetings, such as the distance from their home to the HCC, which
Table 3. Participants characteristics.
makes transportation difficult, a situation that becomes particularly relevant for those with physical limitations often resulting from diabetic complications. Patients who had experienced this problem expressed the following:
… to tell the truth, I don’t go to the group because the health center is too far, and I can’t take the bus alone; I don’t have anyone who can come with me, and I can’t afford to pay a taxi, so I end up not going, though I would like to … (Female patient from an urban HCC)
Another barrier reported was the time of day when the sessions are held, which may overlap with working hours or home duties. This prevents some people attending regularly, as one participant puts it:
… I would like to go, but I can’t because of my work. I have to take time off to go to an appointment, and this is hard because then I don’t get paid … the meetings are always in the mornings, but in the afternoon, when I would be able to go, it’s not when the group meets. They should have different meeting times so that you could choose when you attend. (Male patient from a rural/urban HCC)
3.4. Benefits of Participating in MSGs
Some urban patients reported that MSGs give them both physical and emotional benefits. They mentioned that they had lost weight, and were able to control their blood sugar and arterial pressure. Patients reported that the sessions have helped them improve their mood and cope with their disease better. Two females who regularly attend urban meetings expressed the following:
… a group like this helps us as patients. If you’re diabetic or hypertensive you have a lot of physical problems, you’re deteriorating. Participating in discussions, doing the exercises, and meeting with the others encourages you to keep on going and to become better … (Female patient from an urban HCC)
3.5. MSG Achievements
Most patients attending urban and rural/urban HCCs considered the talks on various topics related to their dis- ease useful. They reported that the blood sugar and arterial pressure monitoring was helpful. Two patients at- tending urban MSG meetings comented:
… the talks they organize in the groups help us because we are not used to the words the doctors often use; in the talks they tell us what these words mean, and this helps a lot. (Female patient from an urban HCC)
Only the urban HCCs have physical activity sessions at their MSGs. The patients considered the activity ses- sions a great success. They mentioned that they keep them active and help to control their blood sugar:
… in the group we do exercise with the others, it motivates you more; when it’s just you, you don’t do any (exercise). Every day, the group gets together to do exercise, and if you go regularly you feel much better, it’s really good that they keep us active … (Female patient from an urban HCC)
Another relevant success is the participation of psychologists in the MSGs; patients have both individual and group sessions with them. They support patients by addressing emotional issues associated with the disease, as reported by one of the participants:
It’s really good that we have a psychologist because sometimes you need to talk about what you are feeling. At times, I get depressed and talking with him has helped me. I would say that the psychologist should be there more time to help us … (Female patient from an urban HCC)
3.6. Limitations of MSGs
The main limitations expressed by the participants relate to the talks conducted. Some talks seem to have little value. Also, the lack of continuity of the group sessions and activities could be confusing, discouraging patients from attending. As some participants expressed it:
... we go, but we get tired of going because they tell us to come back every week, and it can be a long wait be- fore the talk begins, and sometimes there wasn’t even anything … (Female patient from a rural/urban HCC)
Sometimes I think the talks are not very helpful because, actually, you don’t understand a lot and we forget what they tell us … (Male patient from a rural HCC)
Some patients also mentioned that MSGs are not as well organized because the groups have no coordinator responsible for the continuity of the activities. They thought that the staff at the HCCs was too busy, which pre- vented them from taking care of the MSGs; yet, organizers do not encourage greater patient participation. One woman referred to this topic as follows:
… What I’ve noticed is that nurses and doctors have a lot of work; sometimes they are overloaded with all the patients they see, children, women, men, seniors; so even if they wanted to, how would they have time to take care of the group too? But they don’t ask us for help either; some of us could help with organizing the group if they would ask us … (Female patient from an urban HCC). More Support segments of interviews to see Figure 1.
Figure 1. Support segments of interviews with informants.
With respect to the printed material (brochures) containing information about the disease and self-care, older patients stated that they could not read them easily; they considered them unsuitable for this reason. Figure 1, shows another support segment of interviews with informants.
4. Discussion
This study aimed at examining the operational achievements and limitations of MSGs from the perspective of diabetic patients at six HCCs located in the city of San Luis Potosi. The results showed that MSGs improve the patients’ physical, emotional and social well-being, reinforce healthy habits, provide a support network, and help maintain the patients’ metabolic control. Operational difficulties that affected the MSG attendance of par- ticipants included irregular programing of activities, work overload that restricted HCC staff from offering reli- able leadership, problems implementing a more inclusive and participatory strategy, and lack of clarity regard- ing the aims and value of the MSGs.
It is worth noting that perceived MSG benefits and successes were mostly reported by patients who attended urban HCCs. Conversely, limitations were more often mentioned by those from rural/urban settings. MSG activ- ities seemed to be better organized in urban centers while personnel shortage to fully develop the MSG strategy appeared to be a recurrent concern in the rural centers, a finding matching the smaller number of health care workers available at rural HCCs. The fact that staff has to deliver primary health care services (32 programs) to patients, and not only those activities related to the control of chronic diseases, needs to be acknowledged to better contextualize the importance of personnel shortage.
The MSG benefits perceived by participants of this study were similar to those documented previously [20] [21] . There were positive remarks in terms of treatment adherence, metabolic control, and coping with the dis- ease as other authors have reported [22] , which translated into an improved quality of life.
The limited patient participation in MSGs together with the negative opinions concerning the operation of groups needs to be highlighted. For instance, the design and implementation of the self-help strategy seemed to be decided from a health professional standpoint paying little attention to the patients’ perspective; this concern was particularly evident in HCCs serving rural populations.
The barriers to attend MSGs expressed by some respondents illustrate the gap between the planned strategy and the patients’ actions. This resulted from overlooking the specific needs of patients with accessibility limita- tions, as previously reported among patients suffering from chronic conditions [23] [24] .
It was also observed that the assistance provided by the Oportunidades program conditional on MSG atten- dance had only been partially effective in ensuring patient participation, as only a very small proportion of those receiving support attended group meetings. It is therefore essential to identify attendance determinants to guar- antee a minimum participation. In addition to the adverse conditions in which many patients live and the diffi- culties confronted to attend group meetings in spite of recognizing their benefits, patients also reported institu- tional barriers, such as irregular activity schedules, lack of personal attention, and inadequate leadership of the groups. All these factors need to be seriously considered when redesigning and carrying out MSGs in the future to be able to improve patients’ attendance.
Some studies have used self-directed approaches to develop health care programs that promote support groups, which integrate the patients’ own experiences, meanings and concerns. This approach has proven successful en- couraging patients to incorporate lifestyle changes, and even motivating participants to continue attending meet- ings after completing the program and despite transportation barriers [22] .
5. Conclusions
The way in which the MSG strategy has been implemented across the HCCs studied revealed various benefits and successes, but also operational limitations that explain why MSGs have not achieved the proven effective- ness for developing patients’ adherence to comprehensive DM-II treatment. This study shows the need to im- plement a participatory model as other authors have suggested [25] [26] , which takes into consideration the pa- tients’ access possibilities, as well as their needs and expectations. It has been seen that involving patients di- rectly in the organization and implementation of activities translates into a greater sense of ownership and re- sponsibility, which eventually results in greater MSG sustainability and autonomy without generating excessive costs for the health care system. This approach also has the potential to reduce the demand for services releasing staff time to be allocated to other relevant primary health care activities.
The results of this study do not reflect the situation of MSGs elsewhere in the state or other parts of Mexico; they mirror the specific characteristics of the MSG implementation at six HCCs located in San Luis Potosi. However, findings allowed for the identification of strengths and weaknesses associated with the operation of MSGs.
Given the scarcity of qualitative evaluations of health programs in Latin America, some of the results of this study may offer guidance for expanding the analysis of the conditions and quality under which primary care programs operate, so that the perspective of the stakeholders can be considered.