Occupational Therapy: Going Beyond Boundaries Kulkarni C Occupational Therapy: Going Beyond Boundaries: A Case Series Chaitrali Kulkarni

Abstract

India, once called the land of villages, has developed not only in its urban but also rural sector. An Indian village community is a political, economic, and a cultural system. While geography is only one of many factors that contribute to health inequities, access to health-care services has been cited as disproportionately poorer for rural residents. With various organizations working hard toward improving the quality of life in these areas; community education, empowerment, good local governance, and preventive occupational therapy are found to be important steps in rural rehabilitation. Therapists have to have understanding of rural life, people, their beliefs, culture, and how this affects health. The Madia-Gond tribal, who have inhabited for decades, are an extremely remarkable race, affected by chronic poverty, adverse incorporation, a decline in employment opportunities, and the neglect of rural development. This article reports experiences of an occupational therapist working in the tribal areas for the tribal people, who were utterly ignorant, and ages and centuries behind time.

Key Words: Occupational Therapy, Quality of Life, Rural Rehabilitation, Tribal

INTRODUCTION

A dream came true when I got a call from Dr. Anagha Amte about acceptance of my application to serve at their non-governmental organization (NGO).

The journey commenced with lots of plans and expectations, but in no time the ground reality struck. This paper describes my experience of working in an NGO for tribal people in the neglected area of , .

Community-based rehabilitation (CBR) is an approach that has been used primarily in developing countries to facilitate the provision of rehabilitation services to rural and remote areas, where the number of people with disabilities is numerous but where the resources are few.1 CBR is implemented through the combined efforts of people with disabilities, their families and communities, local governance, rehab workers, occupational therapy, and social services. Occupational therapy service becomes more potent with the existence of CBR structure.

Assistant Professor, School of The field of rehabilitation is very underdeveloped in . As a general rule for developing Occupational Therapy, D.Y. countries, the World Health Organization estimates that only 1-2% of patients who need Patil University, D.Y. Patil rehabilitation actually have access to it.2 College, Navi Mumbai, While geography is only one of many factors that contribute to health inequities, access to Maharashtra, India healthcare services has been cited as disproportionately poorer for rural residents.3 With various Place of Study organizations working hard toward improving the quality of life in these areas; community Lok Biradari Hospital, education, empowerment, good local governance, and preventive occupational therapy are found , Bhamragad, to be important steps in rural rehabilitation.4 Gadchiroli, Maharashtra, India

Period of Study BACKGROUND OF (LBP) February, 2015 - July, 2015 It all started as an adventurous family trip. When ’s two sons returned home after Correspondence answering their final M.B.B.S. papers for a vacation, he took them on a trip to Bhamragad. Chaitrali Kulkarni, B-6, They were extremely moved to see the condition of the tribals. Baba felt a strong urge himself nd 2 Floor, Gharonda CHS, to start reformative activities and vowed to start a new project here. Baba’s younger son Shastri nagar, Dombivali West, Thane - 421 202, Dr. Prakash promised to join him. Thus, Dr. Prakash Amte and his wife Dr. Mumbai, Maharashtra, India. began a new chapter in the history of selfless and courageous social service. Prakash’s sister Tel.: +02512484443, Renuka and four educated inspired young men from different parts of Maharashtra joined Mobile: +91-9769131626, him.5 Email: [email protected] LBP is a social project of the Maharogi Sewa Samiti, Warora involving a hospital, a school, and an animal orphanage. It was started on December 23, 1973 by the social worker Baba Amte for Paper was presented in OTICON’2016: The 53rd integrated development of Madia-Gond. It is in Hemalkasa, Bhamragad taluka in Gadchiroli Annual National Conference district of Maharashtra, India. of AIOTA at Chennai in January, 2016 in Non- The Madia-Gond is a primitive tribe inhabiting the Dandakaranya forests in the Central Eastern Competitive Category. part of of Maharashtra. A phenomenal race, the tribes have been in existence

3 | Indian J. Occup. Ther. | Volume 49 | Issue 1 | Jan - Mar 2017 | Page 3-7 Occupational Therapy: Going Beyond Boundaries Kulkarni C for centuries. However, this gentle race was completely cutoff Accessibility from civilization, knowing no clothing, education, or health Accessibility is one of the major concerns that limit patient care until LBP was established.6 compliance. Inadequate transportation, poor condition of roads, and frequent floods during monsoons are some of the The tribes are skilled craftsmen and hunters. Their language, factors that reduce the patient’s willingness to seek quality Madia, is one of the many Indian tribal languages with no script medical and other therapies. In addition, commute to the and limited set of words. They do not follow any of India’s hospital from their remotely located homes is time consuming major religions but continue worshipping their local deities and cumbersome. Hence, a trip to the hospital is an entire day’s and forces of nature. Being very closely associated with nature, affair. Subsequently, this leads to loss of work hours and lower these tribes eat “anything that moves” ranging from squirrels to pay which demotivate them furthermore (Figure 1). snakes and crocodiles. They even brew their own liquor. Their existence is completely dependent on the forests they live in. Madia society is based on cooperation and mutual coexistence, with females enjoying a social status equal to that of males.6

In 1973, when LBP was established here at Hemalkasa, modern medicine and health care was unknown. When ill, tribals took the patient to local witchcraft, which of course often proved fatal. The very first challenge in front of Dr. Prakash et al. was to show the tribals that illness and diseases had to be dealt differently.7

After immense struggle of 40 years, Lok Biradari Hospital is widely accepted today from the initially suspicious tribals and serves around 45,000 patients a year from 1000 villages in a 250 km radius, including people from and Andhra Pradesh. Figure 1: Bridge Submerged Under Water Breaking Access to Ten Villages

The hospital has both outpatient department (OPD) and Personal Factors inpatient department (IPD) services. After the initial medical Peoples’ Attitude and surgical treatment, patients are referred for therapeutic Even in the 21st century, the tribe of Madia believes in witchcraft intervention if required. The hospital also provides its patients to alleviate their illnesses. In spite of Dr. Amte’s in numerous and their relatives with two meals. It provides 24 h care to efforts to reform this belief, medical treatment at the hospital patients who may land up at any time of the day.8 continues to be their last resort. A classic example to the above Occupational Therapy Perspective scenario is 50-year-old patient, who suffered from leg cellulitis. He resorted to “mantrik” measures initially by performing It is essential for a therapist to have thorough understanding various superstitious rituals. Only when these measures failed, of rural life, people, their beliefs, culture, and how this affects he sought medical treatment. However, due to lack of timely health. In the rural setting, majority are living closer to the clinical measures, his condition worsened, and a below knee poverty line. This larger perspective of health requires therapist amputation surgery became essential. to reach outside their prior norms and concepts of practice, or what their professional training had prepared them for. In Patient noncompliance is another major limitation that affects particular, it requires them to adapt their service provision the quality of treatment. It is challenging to convince the (treatment protocols, clinical practice guidelines, other patient to adhere to the home exercise program prescribed by evidence-based approaches, or health service delivery models) the therapist that would help to mitigate the pain and improve to a larger definition of health.9 their health.

Factors Affecting Rural Practice Furthermore, the tribals did not prefer to be admitted to the ward; this reduced the efficiency of clinical care. Contextual Factors Limited Resources Culture Lok Biradari Hospital caters to patients living within a 250 km Work is very important for them. The livelihood of the tribals radius, including the village of Bhamragad. Since there are not is mainly dependent on farming and gathering different products many general physicians available at the primary health-care from forests. Since this is their only source of income, they prefer centers (PHCs), the hospital is the only option for medical needs. to choose work over their treatment time at the hospital. The Furthermore, there is a scarcity of medical and rehab stores that weekly market (where they sell their goods) is the only conducive provide assistive devices such as braces and walker. Lack of a factor to attend their follow-up sessions at hospital which is near fully functioning rehab unit at this hospital and lack of necessary the market. The last week of May is their prime work season, and adaptive devices/equipment add to the woes of the patients. hence a steep decline in their hospital visits was observed.

4 | Indian J. Occup. Ther. | Volume 49 | Issue 1 | Jan - Mar 2017 | Page 3-7 Occupational Therapy: Going Beyond Boundaries Kulkarni C Poverty/Economy and reduced work performance due to knee pain and limited As established by the previous statements, their seasonal nature ROM. of work has led to poverty being prevalent in their community. They lack basic resources such as health care, education, safe Clinical findings: Limited knee flexion bilaterally and bow knees. working conditions, and transportation, which are essential to lead a good quality life. Frequent occurrence of natural disasters Intervention: Strengthening along with functional activities such as floods and draughts and internal communal conflicts training to improve his occupational roles. add to their predicament. Owing to the above reasons, they Follow-up and outcomes: As a result of regular follow up, cannot afford superspecialists/therapists for specific medical/ good compliance (as he was staying in the same campus) and rehab needs. Following up regularly at hospital also costs them motivation to perform, there was a significant improvement in as transportation is not free. his work performance (Figure 2). Going Beyond Boundaries LBP is an important milestone in the life of the Madia. It helped them to survive in their natural habitat more safely without much interference and disturbance in their culture.

One of the important aspects of rural practice is being generalists.9 Working in Hemalkasa was an experience where the main thing was to create awareness, gain tribals’ trust, and give equity oriented care to all types of patients.

Main patient population was of orthopedic disabilities such as backache, arthritis, and fractures, with a lesser percentage of neurological disabilities such as paralysis. Total patients treated were 50, of which 6 important cases are reported in case Figure 2: Patient 2 While at Work series to highlight people’s attitude and rural rehabilitation. Case 3 Introduction: Pain is one of the few concerns; tribals have CASE REPORTS about their health. Moreover, they prefer injections rather than taking tablets regularly. Case 1 Introduction: At Hemalkasa, snake bite is very common. Non- Patient information: Patient 3. poisonous sneak bite, generally, results into wound/cellulitis if not taken proper medical care, which often leads to amputation A 60-year-old male walked in OPD with stick in one hand, mild of limb due to sepsis. circumductory gait, drooling, complaining of pain in left wrist, and demanding for painkiller injection. As per the process, he Patient information: Patient 1. was referred to me as a case of joint pain.

A 50-year-old male, a patient of left leg cellulitis which occurred Clinical findings: Left hemiparesis, facial palsy, circumductory due to snake bite 5 months ago. As no timely clinical treatment gait, subluxated left shoulder, and hypertonia in upper and was taken, a below knee amputation surgery had to be performed. lower limb.

Clinical findings: Left hip knee flexion 90° contracture. Assessment: Brunnstrom stage for arm and hand 3 and for leg 4. Intervention: Occupational therapy program included a range of motion exercises (ROM), strengthening and stretching Intervention: Pain management, weight-bearing exercises for exercise, gait training, and balance training. left upper limb and lower limb, facial exercises, gait training, and splint for subluxated shoulder. Follow-up and outcomes: He was further referred to Anandvan Hospital for prosthetic management. Follow-up and outcomes: As patient was staying far away from hospital, regular follow-ups were not practicable. Case 2 Discussion: Owing to the absence of any splint or thermoplastic Introduction: Tribal people lack awareness about exercises. material, figure of eight bracing was made up from gauze piece, Concept of doing exercises to be healthy is very new to them. cotton, and roller bandage. Patient information: Patient 2. Patient’s perspective: In spite of suffering with stroke since 5 months, patient and his relatives were unaware of it. With A 75-year-old male, working in cow shed, known case of knee reluctance, he agreed to stay in hospital for learning treatment osteoarthritis with difficulty in performing daily activities program. Patient was still in denial of paresis (Figure 3).

5 | Indian J. Occup. Ther. | Volume 49 | Issue 1 | Jan - Mar 2017 | Page 3-7 Occupational Therapy: Going Beyond Boundaries Kulkarni C Case 5 Introduction: Child delivery at home is very common in this tribal area, owing to various reasons such as unawareness, lack of transportation, and ignorant attitude toward mother’s health.

Patient information: Patient 5.

A 2-month-old girl diagnosed with congenital anomaly of radius ulna in right upper limb.

Clinical findings: Patient was delivered at home. She presented with very short radius bone and absence of ulna. Wrist totally flexed on ulnar side.

Intervention: Parent education, stretching exercises, and Figure 3: Patient 3 with Figure of Eight Brace splinting (made of Plaster of Paris and cotton).

Follow-up and outcomes: Patient was advised to follow up Case 4 once every week (Wednesday-bazaar day) to change the splint. Introduction: Due to lack of proper dietary supplements, Madia But they did not follow up. people have vitamins and mineral deficiency. Thus, trivial Discussion: Due to lack of splinting material, available material traumas also result in fractures. was used to make splint.

Patient information: Patient 4. Patient’s Perspective: Parents did not understand the importance of therapy after explaining the intervention. A 60-year-old female, came with complaints of pain in left groin region and thigh, with no history of fall or accident. Case 6 Clinical findings: On evaluation, pain in left hip on passive Introduction: For these tribal people, work and money are more movements of left lower limb. important than their health. Everyone from family has to work on daily basis to meet their daily needs. Assessment: X-ray was not clear, we suspected impacted femur neck fracture (no orthopedic available). Patient information: Patient 6.

Intervention: Icing for pain followed by traction with A 7-year-old boy with fracture of right femur shaft. Closed available material. Passive exercises for left lower limb fracture reduction was done at LBP hospital and plaster cast within pain-free motion. Strengthening exercises for both was given for 8 weeks. upper limbs and right lower limb. Gait training with left leg non-weightbearing. Clinical findings: After cast removal, patient presented with hip-knee flexion contracture with decreased ROM and muscle Follow-up and outcomes: She was referred Anandwan Hospital power of right lower limb. for further management. Intervention: Intervention included basic ROM, strengthening Patient’s perspective: She was transferred to Anandwan exercises, and stretching for right lower limb. Hospital 10 days later as it was their prime work season in the month of May and patient’s family did not want to miss their Follow-up and outcomes: He was admitted in IPD for 2 days only earning opportunity (Figure 4). after cast removal for learning of exercise protocol. They could not follow up regularly due to unemployment of parents. Therapy was started after 15 days as his parents got employed on daily wages basis in LBP and then followed up regularly.

DISCUSSION

While practicing rural rehabilitation, it is utterly important to use available resources. Thus, therapist has to be broad minded, creative, and quick thinker.10 Use of local products should be incorporated in the practice; this will also facilitate partnership with patient. Exercises prescribed should be basic, simple, and Figure 4: Patient 4 Skin Traction Applied with Available Material easy to understand.

6 | Indian J. Occup. Ther. | Volume 49 | Issue 1 | Jan - Mar 2017 | Page 3-7 Occupational Therapy: Going Beyond Boundaries Kulkarni C Going against context or task of patient can harm the therapeutic guidance, support, and encouragement. relationship with the patient. For example, squatting, bending • All my patients for their cooperation and active is essential part of Madias’ daily life; one cannot suggest them participation. not to do it. • My parents and friends.

Awareness and acceptance of better therapies in the Madia tribe along with rehabilitation is a long journey. It took 40 years for REFERENCES Dr. Amte and his team, to bring the change in the Madias for their betterment. Making them aware about rehabilitation is not 1. Twible RL, Henley EC. A Curriculum Model for a Community Development Approach to Community Based Rehabilitation. Disabil Handicap Soc going to happen overnight. The task is huge, the barriers are 1993;8:43-57. many, and the resources are less but we need persistence in 2. Current Rehabilitation Facilities in India. Department of Physical Medicine our effort. One has to have good determination, dedication, a and Rehabilitation, April; 1999. Available from: http://www.pmr-sjmch. positive approach, continuous hard work, good communication tripod.com/disabilityindia.htm. [Last cited on 2015 Nov 01]. skills, and good problem-solving abilities. 3. Walid A, Elie A, Omolade A, Allen-Young EG, Awases M, Balabanova D, et al. Increasing Access to Health Workers in Remote and Rural Areas In developing country like India, occupational therapy is Through Improved Retention: Global Policy Recommendations. World Health Organization; 2010. Available from: http://whqlibdoc.who.int/ majorly known only in large hospitals. It is pivotal that health- publications/2010/9789241564014_eng.pdf. [Last cited on 2015 Dec 15]. care standards should be more consistent on a global level. 4. Kenkre IR. Occupational Therapy in Rural India. Occup Ther Int 1994;1:29-35. Necessary measures should be taken for the inclusion of post 5. Inception of LBP. Lok Biradari Prakalp; 2008. Available from: http://www. of an occupational therapist at PHC. As India is the land of lokbiradariprakalp.org/beginnings-en.html. [Last updated on 2015 May 29; villages, to make strong roots for our profession, we need Last cited on 2015 Oct 25]. to work at the grass root level. We have to come out of our 6. The Madia-Gond Community. Lok Biradari Prakalp; 2008. Available from: comfort zone and go beyond boundaries of geography, poverty, http://www.lokbiradariprakalp.org/madiagond-en.html. [Last updated on illiteracy to help humanity, to increase independence, and to 2015 May 29; Last cited on 2015 Oct 25]. add quality and life to years. 7. Early Challenges. Lok Biradari Prakalp; 2008. Available from: http://www. lokbiradariprakalp.org/healthcare-en.html. [Last updated on 2015 May 29; Last cited on 2015 Oct 25]. ACKNOWLEDGMENTS 8. Health Services at LBP Hospital. Lok Biradari Prakalp; 2008. Available from: http://www.lokbiradariprakalp.org/healthcare-en.html. [Last updated on 2015 May 29; Last cited on 2015 Oct 25]. I would like to thank; 9. Roots RK, Brown H, Bainbridge L, Li LC. Rural Rehabilitation Practice: • Dr. Anagha Amte (Medical officer of Lok Biradari Perspectives of Occupational Therapists and Physical Therapists in British Hospital, Hemalkasa) and entire Amte family. Columbia, Canada. Rural Remote Health 2014;14:2506. • Lok Biradari Prakalp Team, hospital staff. 10. Wills K, Case-Smith J. Perceptions and Experiences of Occupational • Dr. Aishwarya, Dr. Manu, and Dr. Shubha, for their Therapists in Rural Schools. Am J Occup Ther 1996;50:370-9.

How to cite this article: Kulkarni C. Occupational therapy: Going beyond boundaries: A case series. Indian J Occup Ther 2017;49(1): 3-7.

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