REHABILITATION OF SPINAL CORD INJURIES IN COMMUNITY BASED REHABILITATION

The consequences of Spinal Cord Injuries (SCI) and the disabilities that follow, are of great concern not only to the medical world but also to the person affected, the family, the employer and the society. A strong healthy child or a young person suddenly finds himself totally paralysed and helpless for the rest of his life, completely dependent on others for all the bodily needs, yet retaining a keen and alert mind. The psychological and emotional impact is catastrophic. Fortunately, this no longer applies today, as a SCI victim is now able to live a full, active and a productive life. However, it requires thorough multi- disciplinary medical care at the acute stage, followed by comprehensive rehabilitation which includes physical, bowel, bladder and skin management, health education, counselling, vocational training and long term follow up. The management of this injury can be divided into different phases, each dependent upon the other. They are accident site care and transportation; acute care; comprehensive rehabilitation for independent living; late rehabilitation; long term care and follow up.

The goal of early rehabilitation is functional independence, restoration and compensation of lost neuromuscular function by physiotherapy. Training in activities of daily living by occupational therapy, ambulatory and mobility training either in wheelchair or by using orthotic aids are other areas of major concern. Other important issues are the control over micturition, defecation, prevention of further sensory loss, prevention of pressure sores and urinary tract infections. During this time the person develops psychological complications such as depression and suicidal tendencies, and requires psychological intervention. In the late rehabilitation phase, when patients become more active and stable, depending upon the level of injury and pre-morbid personality, various activities to occupy them during the day are introduced. These are therapeutic and recreational in nature. Some of these activities in the long run can become the source of vocational rehabilitation. Architectural barriers, social and family adjustment, and psychological adjustment to new situations are taken up during this transitional phase before the patient returns home. Meanwhile, social workers actively interact with the patient and the family to assess their needs for the reintegration process. However, like most severe disabilities, people with SCI cannot be left alone after rehabilitation is completed, and they need life long monitoring and care. Several life threatening complications emerge without warning if regular medical check-ups are not carried out.

REHABILITATION OF PERSONS WITH SPINAL CORD INJURY

In Orissa, awareness about rehabilitation measures are limited, and crowded institutions do not allow much scope for long term rehabilitation. A majority of persons with SCI are rural based, living below the poverty line, and unable to afford the cost of rehabilitation. Hence, the mortality rates in this group are high at 75% within 2 to 5 years of occurrence of the injury. In this context, the concept of community based rehabilitation (CBR) has gained momentum due to its wider coverage. It advocates de-institutionalisation of services by dissemination of knowledge among motivated community workers. The inclusion of SCI rehabilitation in CBR programmes needs deliberation over a few vital issues that are specific to this disability, and which often determines the success of the rehabilitation effort. Home modification, prolonged exercise programmes, vocational rehabilitation and social reintegration etc. can be done effectively in a community set-up. However, bladder rehabilitation, respiratory care, physiotherapy, stabilisation of spine, fitting and training with mobility aids, and sexual rehabilitation are areas which demand expertise. Any neglect or incorrect practice affects the qualitative outcome, and hence these areas must be handled in an institutional set-up only. Similarly, autonomic dysreflexia, non-healing large pressure sores, renal and bladder insufficiency due to infection, and stone formation cannot be handled at the community level. Therefore complete de-institutionalisation as often emphasised by CBR advocates may not be practical.

Our experience with the institutional as well as the CBR context makes us believe that rehabilitation of SCI requires a combination of both the approaches. We have come across four categories of patients according to the duration of injury and complications. They are acute cases; recent post acute cases not rehabilitated any where; old cases not rehabilitated any where; and old cases rehabilitated somewhere. The socio-economic backgrounds are higher income group, middle income group, low income group and below the poverty line. Acute cases, higher and middle income groups are not keen to be rehabilitated at the community level. They want special care in an institution. The old cases, those from the low income group or those below the poverty line showed interest in a CBR programme. In our care system, rehabilitation is divided into four phases, namely, acute phase, physical rehabilitation, vocational and social rehabilitation, and follow-up and monitoring. Patients are introduced into any of these phases according to their needs.

The acute phase is handled in the government medical collage as we do not have facilities in our centre. Because of shortage of personnel, the relatives are trained to help in the care of the patient to prevent pressure sores, bladder and joint contractures. A weekly training programme is carried out for hands on training of the patients' attendants on the care of skin, bladder, bowel and joints. Printed leaflets and illustrated manuals in the local language are given to supplement the training. Because of the shortage of beds in the hospital, we ensure that the attendants learn and practise the techniques of lifting, turning, bowel exercise, passive exercise, correct positioning and stabilisation of spine, before discharge, to prevent complications while in hospital, and to assist in early rehabilitation.

Patients are then brought to our 10 bed centre for a period of 15 days. At this stage, the rehabilitation programme and its specific targets are chalked out by different experts. The entire programme is then broken into several short term goals. Patients and relatives are given intensive training on how to achieve the goals. Thereafter patients are discharged with specific targets and time frames to achieve them. The aim is to plan out and establish the correct practice of rehabilitation techniques. The actual rehabilitation takes place in the community.

Each case is monitored frequently by social workers and when required a team of experts also visits the client. During these visits, the issues of home modification, vocational, social integration etc. are discussed. Due to ignorance, a majority of disabled persons do not avail the benefits of the state welfare schemes. Social workers facilitate this process, and also help to sensitise the government officials to help disabled persons. For long term follow-up, 4 to 5 persons from the community of the clients' village get trained to monitor the patient's progress and report to the centre. They also assist in executing the treatment plan.

This combination of institutional and CBR programmes has some advantages. It modifies the work of a professional from a service provider to a teacher and awareness builder. The cost of rehabilitation is reduced as many components find effective funding in the community and the government's poverty alleviation programmes. The quality of care however, is not compromised due to the strong institutional backup. Minor and complicated cases are dealt with at the primary health centre (PHC) level with the help of CBR workers and the patients' attendants, while the cases not performing well are immediately brought back to the SCI rehabilitation unit under the care of experts. In India, CBR and institutional rehabilitation can run parallel to each other in the care of persons with spinal cord injury.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 10 @ No. 1 @ 2000

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