EXPERIENCES WITH FAMILY SUPPORTED REHABILITATION OF PEOPLE WITH SPINAL CORD INJURY

INTRODUCTION

Green Pastures Hospital in Pokhara, Nepal has been functioning as a tertiary referral centre for clinical rehabilitation of people affected by leprosy for over 20 years. During this time a comprehensive rehabilitation team has been employed and trained. Patients visiting the hospital have access to medical and surgical care, physiotherapy, occupational therapy, psychosocial counselling, a prosthetic/orthotic workshop, and social workers. The staff of the hospital has experience in the management of long stay patients, and in the training of patients to adapt their lifestyle to accommodate a change in their physical condition. People with peripheral nerve damage due to leprosy are routinely trained in home-based management of their condition. However, due to the stigmatising nature of the disease, patients rarely present for treatment accompanied by family members, which would be more common in the general hospitals of the country.

For the past two years, the rehabilitation facilities of the hospital have been made available to a wider target group, including people with spinal cord injuries or neuro-disability due to stroke. Following an adaptation of the "Patna Medical College" model (1,2) and in contrast to our experience with leprosy related disability, patients are only admitted for rehabilitation if a family member is willing to stay with the patient. Both the patient and the family member participate in the care to the fullest possible extent, from the day of admission, facilitating the return of the patient to the community setting.

SPINAL CORD INJURIES

National statistics about the rate of disability in the population vary between 2-20%. The official figure is 12% with the majority of these cases reported to be due to trauma (3). There are facilities for care of patients with spinal cord injury at some major hospitals in the capital of the country, but none in the periphery. In Pokhara, the regional referral hospital serving the whole of the Western Development Region of the country (population ~4.5 million), admits approximately 100 people with spinal cord injury each year, the majority of which receive no rehabilitation assistance. From the inception of the Green Pastures Spinal Cord Injury Unit, patients with thoraco-lumbar spinal cord injuries have been referred from the general hospital according to a set protocol to assess the likelihood of benefiting from rehabilitation efforts. Direct referrals from the local hospital tend to arrive within days of the injury, after the initial stabilisation is complete. As the reputation of the rehabilitation unit has grown, other patients have been admitted from more distant hospitals, or as self-referrals from home. The status of the patients on admission is therefore varied, especially with respect to skin condition.

Patients stay for an average of 3.8 months, with a range of 3 days to 9 months, including a period of vocational training, depending on the clinical needs. During this time there is a 6 -12 week programme of family training, followed by a stay in the 'self care' unit - a facility where the family can work and live together under observation but with minimal assistance from hospital staff.

CLINICAL CARE

In absence of sophisticated diagnostic equipment, all patients with spinal cord injury admitted to the hospital are assumed to have fracture instability. The injury is managed conservatively (4) by closed reduction, appropriate posturing and immobilisation with a locally made thoraco-lumbar extension orthosis (TLSO) for 8 weeks before controlled mobilisation over a 4-week period (5). The nursing staff works with the family to ensure regular turning of the patient, and for skin, bladder and bowel care. Facilities are available for plastic surgery (debridement, skin flap or graft) for intractable pressure sores. Physiotherapy to prevent or alleviate contractures is provided, firstly by the physiotherapy department, and as soon as possible by the family members. The use of a TLSO enables mobilisation from about the 8th week. Where possible, this period starts with standing exercises using lower limb orthoses. Patients are taught to ambulate using orthoses and crutches in either independent or 'swing through' gait. If necessary wheelchair training is given, but this is not the method of choice due to the rugged terrain of most of the patients' homes.

FAMILY SUPPORT

The nursing department is responsible for mobilising the family, and teaching the family and the patient together the essentials of care. The teaching is semi-structured, with a 1-2 week introductory period of observation and orientation to the spinal cord injuries unit. Because the family themselves need support in adjusting to the change in their relative and accepting the prognosis, the family are included in psychosocial counselling sessions starting during this time.

The second phase of transfer of care from the hospital staff is a period of knowledge acquisition, where the family is involved in the care, but not responsible for it. They are given information about the nature of spinal cord injuries, and helped to achieve an understanding of the nature and implications of paralysis and loss of sensation. Possible complications of spinal cord injury, pressure sores, bowel and bladder problems and spasticity are demonstrated, and the basic theories of skin care, bowel and bladder care, and exercise are taught.

In the third phase, the nursing staff concentrates on transfer of skills to the family. The family members are mobilised to provide all of the care necessary for the patient, under the supervision of the nursing staff. They are responsible for all aspects of daily care - feeding, hygiene, bowel and bladder training, position changes, transfers and exercise. In addition, they receive information about possible complications, including infections and pressures sores, and learn to deal with these, although they may not yet be a problem. At least 2 weeks before the planned discharge date, the patient and the family move into the 'self-care unit' in preparation for fully independent living. Minimal care is given by hospital staff; while the family and the patient together are responsible for all aspects of daily living including food preparation. At this time, a team of hospital staff visits the home setting, along with one member of the family, to evaluate the need for any assistive devices or further training.

OUTCOME ASSESSMENT

All patients admitted to the Spinal Cord Injuries Unit are assessed using a modified Barthel Index (6) on admission and discharge. This scale assesses the independence of the patient on a five level, 100 point, scale (total dependence = 0, total independence=100), based on ability in 11 key functions.

Of the 14 patients admitted for rehabilitation in the first year of the unit's operation, 8 have had a further assessment in the home setting, to enable both quantitative and qualitative evaluation of the outcome. Visits were made 10-21 months post discharge. Three of the remaining patients are known to have died, and a further 3 could no longer be traced.

All except one patient was admitted in a state of total or severe dependence. Each of these patients improved his/her Barthel score during the admission, by a minimum of 31 points (range 31- 57), bringing all except one into the range of moderate dependence. No patients attained slight or full independence. By the time of the home visit, just 2 of the patients had reduced their Barthel score; these changes were insufficient to reduce their independence level. For both patients the reduction was because of a change in independent mobility in the home setting. Both patients ambulate only with wheelchairs and there is limited access within and around the home.

One patient was admitted with only moderate dependence. His score improved by discharge, but the independence level did not change. By the time of home visit, his score had again reduced to the level seen on admission. As in the other cases where the score reduced, this appeared to be because of the reduced mobility in the home setting.

Qualitatively, six of the patients were active and apparently participating in family life. The remaining two were able to be mobile but appeared to choose not to be active. Three patients had started small businesses as an alternative to manual or farming work. Women were involved in childcare and food preparation. All patients appeared to be coping with their disability, and any pressure sores that had developed were being adequately managed without recourse to health post staff or Green Pastures Hospital. None of the patients had been readmitted to any facility.

CONCLUSION

Family supported rehabilitation is a new concept in Green Pastures Hospital. Our experiences over two years of rehabilitation for people with spinal cord injury suggest that a modified 'Patna Medical College' model has great potential for achieving functional independence for patients who would otherwise be unrehabilitated. The level of independence reached in the hospital setting is maintained after discharge to the care of the community. There appears to be little correlation between the level of injury or the number of complications (urinary tract infection, constipation, pressure sore, spasticity) and the level of independence attained, although both of these factors influence the length of stay in hospital.

The training of family members as patient helpers also transfers knowledge about spinal cord injury to the community and it is believed that this has a positive impact on the amount and quality of support that the patient receives.

Our first results of family supported rehabilitation are encouraging. Patients on returning to their home setting are active, participating members of their community. On the basis of the results from these first admissions, the rehabilitation unit was opened to incomplete cervical injuries that had previously been excluded, and two such patients have been successfully rehabilitated.

ACKNOWLEDGEMENTS

Prof. H N Sinha visited Green Pastures Hospital in October 1997 and started us on the quest for a suitable rehabilitation model for the Nepal setting. His encouragement was an invaluable catalyst. We are also grateful for the interest of Dr R B Tripathi, and his willingness to refer patients for rehabilitation.

The authors would like to thank the nursing staff, under the leadership of Sr Reeta Gurung, and the physio staff led by Shah Krishna Sunwar, for their dedication to the care of patients with spinal cord injury and their enthusiasm for the role of the family in the rehabilitation process. Ms. Diane Turner, Occupational Therapist, first suggested the use of the Barthel Index as an independent outcome measure for spinal cord injuries, enabling us to be objective about the performance of the SCI Unit. Shamser Magar maintains the hospital statistics and provided assistance in the compilation of this article.

REFERENCES:

1. Sinha HN. Total Care of Spinal Cord Injury - Patna Medical College Model - A Concept for Developing Countries. Paper presented at the Annual Conference of the Society of Surgeons, Pokhara, Nepal, 1997.
2. Sinha DK. Hospital Management of Spinal Cord Injury, 2nd Ed. Patna: Banerjee Prints, 1995.
3. Kathmandu Post, 1998 ; 6(70)
4. Ohry A, Brooks ME. Conservative vs Surgical Treatment of the Cervical and thoraco-lumbar Spine in Spinal Trauma in Spinal Cord Injury : A Comprehensive Approach. Proceedings of the International Workshop and Regional Conference on Spinal Cord Injury, Bhubaneshwar,1991.
5. Chetri HB, Ferm FB, Anderson AM. Economic Hyperextension Spinal Brace for Management of Thoraco-lumbar Fractures. In press.
6. Shah S, Vanclay F, Cooper B. Improving the Sensitivity of the Barthel Index for Stroke Rehabilitation. Clinical Epidemiology 1987; 42(8) : 703-709.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 11 @ No. 1 @ 2000

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