A culturally informed lower-extremity complication prevention program for people living with diabetes in south India

Abstract

Background:

Diabetes and its complications are increasing in frequency worldwide. Lower-extremity complications carry a high risk for morbidity and mortality, yet are largely preventable through education and self-monitoring. In India, rural areas lack access to education, care, and treatment. Despite existing evidence-based programs to reduce diabetes-related lower-extremity complications in areas with limited resources, uptake and sustainability may be hampered by the lack of translation to the local cultural context.

Aims:

To address this gap, this study used the Culturally Informed Healthy Aging nursing process to develop a lower extremity complication prevention program in a rural village. The paper describes the results of a community health needs assessment conducted annually from 2009 to 2014, and subsequent pilot test of an intervention incorporating these results.

Methods:

The Culturally Informed Healthy Aging process is a naturalistic, inductive method used to identify and address health needs. Components include community partnership, community assessment, program planning, selection of health priorities, workgroup formation and translation of evidence, and program outcome evaluation. The programming is assessed using process evaluation, which allows for continuous monitoring and program modification.

Results:

Community assessment revealed a number of values, beliefs, and practices related to foot care and assessment in rural south India. These were incorporated into culturally informed programming and evidence-based protocols were adapted for use in the local context. Programming resulted in increased community capacity for lower extremity complication prevention, accessible population screening, and culturally informed foot care education.

Discussion:

Strengths, limitations and implications for care in rural India and other areas are discussed.

Keywords

communities English culture/ethnicity healthy aging chronic disease/non-communicable disease capacity building (including competencies)health promotion

Introduction

In India, diabetes is on the rise in all settings, leading to increased morbidity across the lifespan (1), increased risk for complications such as neuropathy, and ultimately risk for foot ulceration, infection, and surgical amputation. Lower-extremity complications have a substantial impact on socioeconomic and personal welfare. These complications are largely preventable, although many people in India lack health education and self-care knowledge. Culturally tailored health interventions that engage in partnerships with local communities are important to address these population health needs. Documented cultural inquiry leads to identification of cultural capital, health beliefs, values, and practices that are important for the development of successful interventions. The aim of this study was to use the Culturally Informed Healthy Aging (CIHA) nursing process to develop a lower-extremity complication prevention program in rural south India.

Background

The prevalence of diabetes is increasing in all settings in India. Past studies have shown rates of type 2 diabetes at 15.5% in urban Chennai (2), 5.9% in a peri-urban area outside Madras (3), and 6.4% in rural Tamil Nadu (4). A recent survey in Tamil Nadu revealed increasing rates of diabetes, 21.9% in urban settings and 13.4% in peri-urban villages (1). Researchers have also examined diabetes-related lower-extremity complications’ effects on morbidity and mortality in the Indian population. Two studies documented neuropathy prevalence at 27.5% (5) and 26.1% (6). In a study of 1319 people with diabetes in India, foot infection rates were 7.6% and amputation rates were 3% (7). Mortality associated with major amputation in 194 patients in Chennai was 16% after a 2.5-year follow-up (8).

The impact of lower-extremity complications is significant. Many people walk between locations to meet basic needs. Individuals with chronic wounds and amputation are more likely to be disabled and unable to work. Lower-extremity complications also come with significant costs. One study found that people with diabetes-related foot complications in India spent a significantly larger proportion of their income on healthcare (20–33%) than those without foot complications (9%) (9).

Many people in India lack knowledge to prevent complications. In one study, 67% of participants had low scores on foot-care questionnaires, with lower scores correlating with female gender, low educational level, older age, and diabetes complications (10). In a peri-urban population, only 36% of those surveyed practiced foot self-care, only 8% wore appropriate footwear, 97% did not wear shoes in the home, and 10% did not wear shoes outside the home (7). In a survey of 500 people with diabetes living in rural areas, 99.8 % did not inspect their feet regularly, 26% did not wash their feet daily, and 76.4% did not know that people with diabetes should take special care of their feet (11).

Programs to address foot complications in resource-limited settings have primarily focused on increased awareness, self-care education, and provider training (12 –14). Although these programs have the potential to impact outcomes, one standardized intervention is typically applied to communities with very different resources and culture. Large-scale awareness campaigns lack penetration to rural areas with fewer resources and would need adjustment to fit the local context (15). Furthermore, Indians also engage in a number of self-care prevention practices not addressed by such programming. This includes non-allopathic treatments (16). For example, people with foot ulcerations may go first to lay providers whereas others try home remedies (8). Many use homeopathy or Ayurvedic treatments (16). Ayurveda is a centuries-old health practice in India that emphasizes activity, diet, and holism—treating the whole person, physically, mentally, spiritually, and emotionally. Natural remedies are mainstays of Ayurveda. For example, because of its proven anti-inflammatory effects, turmeric (curcumin) has long been used to treat wounds, including diabetic wounds (17,18).

Thus, despite the existence of evidence-based programs and practices to reduce diabetes-related lower-extremity complications, uptake and sustainability may be hampered by the lack of translation to local cultural context. To address this gap, this study used the CIHA nursing process to develop a lower-extremity complication prevention program in a rural village. Institutional review boards approved this study at both participating universities and the partner organization.

Methods

The CIHA process was used to identify and address health needs. The CIHA process (Figure 1) is a naturalistic inductive method used by nurses, in collaboration with local communities, to develop locally appropriate community health programming that is equitable and just (19,20). Nursing principles inform building trusting partnerships through provision of holistic evidence-based care to individuals, groups, families, and/or communities (21). Culturally informed partnerships facilitate recruitment and community engagement for programming and research (22). A community advisory board (CAB) of local stakeholders is formed, and membership changes as program development proceeds and needs change.

A component of the CIHA method is the community assessment, a two-step systematic process for collecting and organizing information about the community (Figure 1). The first step is an inductive Cultural Inquiry, which identifies available cultural capital (people, institutions, and resources). The second step is a health assessment of the environment and the population, and identification of existing health systems. This assessment includes formal local healthcare institutions, indigenous and alternative health systems, values, beliefs, and practices (19).

Based on these results, health priorities are identified and a working group is formed to focus on the chosen area for programming, measurable outcomes, and relevant evidence-based practices. The working group uses local information, resources and experts to translate the evidence-based practices into local culturally informed programming. The program is then implemented, with ongoing monitoring and process evaluation. Process evaluation allows for continuous monitoring and program modification when needed.

Culturally informed community nursing practice process

CAB and community/public health nursing partnership

In 2009, a partnership formed between the second author and Indian colleagues from the Swami Vivekananda Youth Movement (SVYM), a nongovernmental organization (NGO) in Karnataka state that provides health and education services to approximately 100,000 rural people, including displaced tribal populations. The purposes of the partnership were to use the CIHA process to identify meaningful health outcomes for the population, implement a response, and to provide a community-based learning experience for US-based health sciences students. During annual 4-week site visits from 2009 to 2014, the faculty leader and students collaborated with the program CAB in conducting the CIHA community assessment, and assisting with program implementation and evaluation. Follow-up monthly meetings were conducted via web conferencing and email.

Community assessment

The CIHA community assessment in the rural village of Hosakura (a pseudonym) began in 2009 and was updated annually. We focus here on the community assessment findings pertaining to diabetes.

Cultural inquiry key findings

a. Physical environment of the community. Hosakura is in south India, 72 miles from the nearest city. With a tropical climate, seasonal variation ranges from hot and dry summers to a monsoon season. Agriculture (e.g. rice, sorghum, ragi, sugarcane, tobacco) is the primary economy. Housing includes pucca (cement and mortar construction) and kachha (traditional hut construction of dirt, cow dung, thatch, and stones). Transportation is mainly by bicycle and foot, with some motorcycles and animal-drawn carts.

b. Population of the community. Hosakura has a total population of 650 people (339 male and 311 female). The village (haddi) is split into different castes with a northern, more affluent half and a southern half of lower socioeconomic and caste status.

c. Social organization of the community. In Hosakura, there are a few small shops that sell dental and hygienic items, fresh fruit, school supplies, tobacco products, and convenience foods. The nearest town for supplies is approximately 4 miles away. Local government includes the Gram Panchayat, elected officials who are responsible for the needs of the community. The Swamiji is an influential local religious leader. There is one public school serving grades 1–10.

Men typically work all day in the fields with cow-drawn carts and rest in the evening or visit neighbors. Most children attend school every day except Sunday. Women awaken early and perform household activities such as walking to obtain water and firewood. They care for children and elders, and prepare meals, including bringing lunch to their husbands in the field. Girls help with household tasks.

Health assessment key findings

a. Environmental health. Most villagers obtain water from a public tap, walking on uneven roads to obtain water and other necessities. Most do not have indoor toilets and use the outdoors.

b. Population health. In 2010–2011, the SVYM conducted a community survey on barriers to self-care and the prevalence of diabetes, which included Hosakura (n = 1923). This survey found that 16.5% of the rural population was at high risk of diabetes as measured by age, family history, and waist circumference. Of those at high risk, 78.2% followed up with HbA1C testing, resulting in 34 new diabetes diagnoses. Many of the villagers had an HbA1C level above 8% (64 mmol/mol), placing them at high risk of diabetes-related complications. Providers identified a “chasm” between the providers’ perspectives on the importance of self-care and community members’ lack of health-seeking behavior. Authors identified untreated chronic lower-extremity wounds in the community. For example, one community member with an infected ankle wound had presented to a primary health center (PHC) and received a topical corticosteroid. Another had not been treated for a large, open wound on his lateral right foot. No formal foot-care education or assessment programs for diabetes existed.

c. Healthcare organization. Access to care is a major issue due to few qualified providers, lack of transportation, incompatible schedules in a primarily agriculture-based economy, poverty, and lack of knowledge regarding the importance of routine care. Providers focus on treatment of foot problems rather than prevention. Hospitals in India may be government run, private, corporate, or part of an NGO. Rural villages and tribal areas are served primarily by sub-centers with no physician staff, or by PHCs with one general practitioner. These small PHCs may serve 20,000–30,000 people. Rural villagers do not receive the same level of care (including assessment and education) as those who live in towns or cities. Rural physicians may not be aware of current guidelines for the prevention of diabetes-related complications, whereas others face limited resources. For example, the cost and upkeep of glucometers prevents rural villagers from monitoring blood glucose at home. Transportation or work schedules interrupt visits. Insulin therapy is nearly impossible because of the lack of refrigeration and fear of injections. The PHC in Hosakura has one physician and several support staff (2-3) and each year serves over 8000 people from the surrounding area. An 80-bed hospital affiliated with SVYM is located 4 miles away. A single physician at this hospital cares for people with diabetes. Provider turnover is a significant problem due to lower pay and standard of living in rural areas.

We identified a number of practices specific to foot care and assessment. Ayurveda treatments are often used instead of—or complementary to—allopathic treatments for wounds. Touching someone’s feet is a sign of admiration and respect; it would be unusual for someone of higher status (e.g. a physician) to touch the feet of someone of lower status (e.g. a farmer or laborer). Thus, some patients refuse foot care or avoid sharing their concerns. Barriers to foot assessment by physicians include (a) patients having “dirty” feet from walking barefoot in the mud; (b) out-patient clinics are too busy for in-depth evaluation; (c) diabetes follow-up care is usually confined to evaluation of blood glucose; (d) it is uncommon for physicians to provide wound care; and (e) ulcers are regarded as an issue to be addressed by surgeons.

Some local practices place individuals at high risk of foot injury. For example, many people do not wear shoes when working in muddy fields due to a belief that the area around the oxen and plow is sacred. It is common practice to go barefoot, especially in homes and temples. Home self-care remedies include using a washing stone to smooth calluses and ash to clean the feet. Many people use readily available chloramphenicol 1% eye ointment as a wound antiseptic.

Program planning

a. Health issues prioritized. In 2010, partners identified diabetes as an area for potential programming and established the CIHA Diabetes Healthy Aging Program, including educational programming on diet, exercise, medication management, oral care, and foot care. This paper focuses on the lower-extremity complication prevention aspects of this program.

b. Translation workgroup and selection of evidence-based methods. Lower Extremity Amputation Prevention (LEAP) principles and American Diabetes Association guidelines were used as the evidence base for foot-care programming (14,23), and were tailored to Hosakura based on the results of the community assessment. Key outcome measures for this project were (a) improved community capacity for prevention and management of lower-extremity complications, (b) lower extremity complication prevention program sustainability, and (c) culturally accessible population screening and education for lower-extremity complications.

Working closely with SVYM and community partners, the authors trained community health workers (CHWs) on foot care and assessment based on level 1 LEAP principles (14). Classroom training included didactic materials, demonstration, and return demonstration using local supplies and examples from a local context. CHWs were observed directly in the community during foot assessment and self-care education to ensure competency. Before education sessions, CHWs reported that they were unaware of diabetes complications or that people with diabetes should take special care of their feet. The team developed a foot-care kit of essential tools, readily available from local stores. The local Swamiji religious leader endorsed the program by allowing a CHW to demonstrate foot care on his feet at a community education session attended by approximately 60 community members and leaders. Additionally, he participated in a public service informational video, endorsing the training.

Pilot testing and process evaluation

In 2012, during the annual faculty student site visit, the lower-extremity complication prevention program was pilot tested in Hosakura. This pilot test was affected by decreases to CHW funding, meaning that program implementation had to be modified for workforce limitations. To address this, one CHW, known and respected in Hosakura, was selected to receive one-on-one training in the community, and subsequently led training with other CHWs and community members in a train-the-trainer format. During the pilot-testing period, the CHW and Indian/US team members saw 30 people in Hosakura with pre- or active diabetes.

To increase access, interventions incorporated beliefs, values, and practices surrounding feet and foot care whenever possible. Ongoing updates to the community assessment allowed for these beliefs to be incorporated when they were identified. For example, although people living with diabetes were hesitant to show their feet to physicians, they eagerly participated in foot assessments when supported by their religious leader and delivered by a respected CHW. Pilot testing also identified the need to integrate inspection of the lateral malleolus, as the practice of sitting cross-legged on hard ground led to an increased risk of wounds on the ankle. Common harmful behaviors—such as using razor blades on the toenails, walking barefoot, and leaving wounds uncovered—were also identified and addressed. Additionally, Ayurvedic and allopathic physicians incorporated turmeric application as a wound management strategy. Understanding the daily life of villagers promoted increased program accessibility and uptake of health promotion activities through provision of in-home outreach by a CHW. Based on results of pilot testing, the workgroup updated the CIHA assessment and refined foot-care education protocols.

During pilot testing, the team recorded a video of the CHW conducting foot self-care procedures in the local language(s), with local supplies, within a variety of local contexts in Hosakura and at the PHCs. This video was intended for community education using tablet technology. To assess community comfort with the technology, an Apple iPad was taken to various rural communities and demonstrated. Villagers expressed interest in the iPad, and were able to use it with minimal training.

After pilot testing and program modification, the CHW continued to visit the original 30 people at least monthly, and recruited others who were interested in learning about diabetes and foot care. From June 2012 to May 2013, the CHW visited 151 new people with pre- or active diabetes and made 611 follow-up visits. The CHW’s monthly community visits (Table 1) included home visits, follow-up visits, and phone calls. There were 120 encounters for foot-care counseling and 103 encounters for foot-care demonstration. The CHW also provided referrals to the local hospital out-patient department (OPD) for those who needed more extensive diabetes assessment and counseling. Over 1 year, 239 people were referred to the OPD for further assessment and treatment. Beginning in the second month of the program, community members requested that the CHW provide foot-care training for three local PHCs (16 visits for three PHCs).

Table 1.

Monthly community health worker activities in the Hosakura area.

Month	New patients	Follow-up	Home visits	Phone call	Referral to OPD	Foot care counselling	Foot care demonstration	PHC visits
June 2012	30	N/A	0	0	0	0	0	0
July 2012	23	30	0	0	23	16	24	0
August 2012	15	27	24	0	15	13	6	1
September 2012	10	38	13	0	12	8	4	2
October 2012	11	59	7	0	10	10	8	2
November 2012	7	64	15	1	7	7	4	2
December 2012	3	50	13	1	20	3	3	1
January 2013	12	60	14	2	22	14	12	1
February 2013	8	71	16	3	30	10	8	2
March 2013	15	88	19	3	45	17	15	2
April 2013	12	70	14	3	30	15	12	2
May 2013	5	54	16	2	25	7	7	1
Total	151	611	151	15	239	120	103	16

OPD: out-patient department; PHC: primary health center.

Program outcomes

Community capacity for prevention and management of lower extremity complications was increased. When US partners returned in 2014, a new CHW continued to visit program participants in Hosakura, as the original CHW had married and left the NGO. Although home visits were sustainable, the CAB was no longer collecting data on individual visits because of limited resources. However, the CAB developed two yearly diabetes camps. Camps included foot-care education and formal foot assessment delivered by CHWs and local providers. Camps also included a full array of services such as vital signs and blood glucose measurement, exercise and nutrition education, and eye exams. Each camp hosted over 50 participants from the surrounding area and each participant was given their own foot-care kit for home self-care. The educational foot self-care videos continued to be used and accepted by community members. Indian partners continued to develop videos and create similar media for nutrition and exercise education. Local shoe stores reported increased sales of footwear for people with diabetes.

Resources demonstrated sustainability. Because the CAB was unable to continue data collection, it is difficult to determine the medium- and long-term impact of the CHW outreach program. However, many of the resources and activities created by the CIHA team were incorporated into a new community programming intervention. These resources, still being used today, include a diabetes care booklet, foot-care kits, educational videos, and foot-care education protocols. Evaluation of the long-term sustainability of lower extremity complication prevention programming is ongoing.

Population education and screening for lower extremity complications was culturally accessible. Program interventions incorporated beliefs, values, and practices identified through the community assessment. For example, involving the local Swamiji religious leader and obtaining his endorsement helped to address cultural barriers to touching of the feet. Having an in-depth understanding of daily life for villagers informed the decision to provide in-home outreach rather than clinic-based programming. Culturally informed diabetes resources that were congruent with local context were created by incorporating elements learned during community assessment and by partnering with community members. The ultimate success of the project was that it was taken over, expanded, and improved upon by engaged community members.

Discussion

This project is in accordance with the World Health Organization action plan for non-communicable diseases (NCDs) that seeks to decrease premature death from NCDs by 25% by 2025 (24). Diabetes is a leading cause of disability and death, resulting in 1.6 million deaths worldwide in 2012 (24). Although individualized, primary care is important to control diabetes and prevent complications, community interventions that increase knowledge, raise awareness, and focus on prevention are also essential. The CIHA method is effective for assessment, planning, and evaluation purposes related to community programming. Culturally informed community assessment helps to identify and address common barriers to care, whether physical, geographic, monetary, educational, or cultural. For example, in Hosakura many people do not access care due to geography and work schedules. Villagers work long days in the fields, which prevents travel for health-related needs. Culturally informed programming took these barriers into account and services were provided through community outreach. When home-centered care was supplemented by yearly diabetes camps, local providers ensured that all education, screening, and follow-up care was provided in just 1 day.

There were several limitations to this study. First, funding for CHWs decreased in 2012, leading to program modifications. Retaining health workers in rural settings in India is a significant problem due to factors such as less pay and lower standard of living noted in the community assessment. Additionally, CHWs were primarily funded through grants, which are time limited. In many locations, CHWs are required to be women. This limits recruitment and retention, especially because women often leave positions when they marry, as was the case with our trained CHW. Funding limitations also affected our ability to collect data, as we did not have staff that could dedicate specific time to this. Although funding was a major limitation, uptake of the program was successful among villagers who engaged in foot self-care and among providers (e.g. physicians) who incorporated assessment of the feet in yearly diabetes camps. Another limitation was the difficulty in collecting data on health outcomes such as infections, amputations, and lab values including HbA1C, which would have provided rich evidence for the effectiveness of this study. Difficulty in obtaining data was due to a lack of funding, staff time constraints, and limitations in formal documentation of problems. Additionally, HbA1C was not consistently used to monitor glucose levels in this setting during this time period.

A major strength of the program was the long-term relationship between community members and the first and second authors who shared a goal of building community capacity for healthy aging through the diabetes program. This relationship allowed for the extension of trust to participating students. Conducting a cultural assessment demonstrates an essential interest in the people we serve, by taking the time to understand the lives they live and to work together through community engagement for appropriate (culturally informed) programming. The culturally informed lower-extremity complication prevention program was only possible because of the sustained work of Indian and US teams with a core vision and mission.

Implications

Most lower-extremity complication prevention programs focus on provider training in a train-the-trainer format. The LEAP program incorporates self-management principles of patient education, self-inspection, and self-care. Although provider education is extremely important, engaging people living with chronic disease in caring for their own conditions is imperative for tertiary prevention. This project demonstrates that the combination of provider (health worker) training and self-management support can increase education, screening rates, and referrals to appropriate treatment. Furthermore, this project demonstrated the LEAP program can be adapted for use in a culturally informed way.

This project revealed that CHWs are an important part of chronic disease care, especially in rural areas in India. With this project, CHWs increased the number of foot screenings, referrals to physicians, and educational sessions offered to community members. Community assessment also revealed problems with recruiting and retaining CHWs in rural India. Funding for CHWs is imperative to achieve positive health outcomes and should be considered for future health initiatives. More work needs to be done to determine what sort of incentives would retain CHWs in rural areas.

Cultural inquiry of Hosakura also revealed local beliefs, values, and practices surrounding feet and foot care, and the CIHA method promoted the use of available cultural capital, incorporated local context, and allowed for outcome measurement valued by local stakeholders. Although different communities have different health priorities, incorporating these cultural elements into community programming can overcome barriers, promote uptake, and increase sustainability. The CIHA process is structured but versatile, and this project demonstrates its use in practice. Further research would demonstrate its effectiveness in different settings.

Conclusion

India’s diabetes burden is substantial and increasing. Paired with limited access to care and lack of self-care education, especially in rural areas, this will undoubtedly lead to an increase in diabetes-related complications unless culturally informed, evidence-based, and affordable prevention strategies are implemented. The CIHA model goes beyond traditional participatory research to provide a method for capacity building through culturally informed assessment, community partnerships, cultural capital utilization, and culturally informed health planning. Nurses are in a unique position to partner with other healthcare professionals and community members to design evidence-based programs in a context that is congruent with the local culture, resources, and environment in order to build capacity for healthy aging.

Footnotes

Acknowledgements

SVYM partners and many community health workers that contributed to this project. Yvette Cuca who assisted with edits to this manuscript in final stages.

Conflict of interests

Authors have no competing interests to declare. All authors listed have made a substantial contribution to the conception, design, and/or analysis and interpretation of data. All authors listed have contributed to drafting or revising the article. All authors listed approve the version submitted to Global Health Promotion.

Funding

Amanda Peacock received an award from the University of Iowa’s John A Hartford Foundation Center of Geriatric Nursing Excellence in support of this project.

ORCID iD

Amanda Peacock

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