Introduction

Demographics of spinal injuries in India differ from those of developed countries, with regard to gender, type, and mode of injury. Road traffic accidents and falls from the height are the major causes of spinal cord injury (SCI) in India [1]. Due to a lack of SCI centers in India [1], a person with acute SCI is taken to any of the hospitals available in the vicinity and there is often a delay in comprehensive management. Patients are often discharged once their vertebral lesion is managed and advised to continue exercises at home rather than being referred to a definitive spinal or rehabilitation center [2]. The possible reasons for their early hospital discharge include nonavailability of beds, financial constraints, lack of rehabilitation facilities, and lack of awareness about the importance of rehabilitation [2]. Subsequently, individuals with SCI are predisposed to complexities such as pressure sores, contractures, and deformities as well as psychosocial issues that will negatively influence their overall rehabilitation outcome [2].

Physiotherapy is one of the key components of SCI rehabilitation which involves interventions related to domains of body structure and function, activity limitation, and participation [3, 4]. Physiotherapy should begin in the early acute stage and exercises should continue on lifelong basis. To provide optimal care for persons with SCI, physiotherapists need technical knowledge regarding the patients’ condition and treatment in addition to an understanding of the consumers’ expectations [5]. Thus, it is important to understand the lived experiences of people with paraplegia/SCI [6].

In a previous study, online focus group interviews of people with paraplegia were conducted to understand their expectations and experiences. Interviews were conducted in either Hindi or English until data saturation. Recorded interviews were transcribed into text and data were analyzed by using ATLASti software for qualitative data analysis. The analysis involved coding the document and grouping the codes into code groups. Various code groups that emerged were related to a lack of knowledge in the general public regarding SCI, inadequate care at the accident site, lack of education regarding SCI provided to the patients and families in the hospital, inadequate rehabilitation/physiotherapy facilities in the hospital, lack of guidance or referral for physiotherapy after discharge, and lack of facilities for exercises/relaxation for people with paraplegia in education and employment centers [7].

Despite the great need for services, there are no freely available protocols or standards for physiotherapy care for persons with paraplegia in India. Thus, this study aimed to obtain perceptions of physiotherapy experts regarding expectations/experiences of people with paraplegia and to formulate recommendations for standards of physiotherapy care for people with paraplegia in India.

Method

This qualitative study was approved by the ethical committee through the Central Drugs Standard Control Organization and registered in the Clinical trial registry of India. We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during this research. A modified Delphi methodology was used to bring consensus. Multiple viewpoints were obtained and refined through various rounds of data collection from the respondents [8].

Twenty-three physiotherapy experts with a minimum of 5 years’ experience in SCI/Neurological Rehabilitation were sent an invitation to participate. Fifteen individuals responded (response rate = 65.2%), and fourteen agreed to participate in the study (response rate = 60.86%). The demographic details of the participants are shown in Table 1. Four rounds of consensus building using English were then conducted using Google forms.

Table 1 Demographics of physiotherapy experts (n = 14).
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In round 1, quotations based on the previously described emerged code groups from online focus group interviews of people with paraplegia [5] were sent to the participants, as shown in Table 2. Once the interview was over, the interview was transcribed into a word document in the English language [3]. Once the comments of physiotherapy experts were received in round 1, data were analyzed using ATLASti software for qualitative data analysis. Nineteen codes were retrieved that were grouped into four code groups. These four code groups were related to awareness, knowledge, and education regarding paraplegia, functional goals, mobility skills, and physiotherapy in various contexts and paraplegia.

Table 2 Patients’ quotations retrieved from online focus group interviews sent in round 1 for physiotherapy expert’s opinion.
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In round 2, code groups related to awareness, knowledge, and education regarding paraplegia, and functional goals were posted for the participants’ review. Subsequently in round 3, code groups related to mobility skills and physiotherapy in various contexts were posted to the experts for their opinion and agreement/disagreement. Forty-five codes were retrieved from round 2 and grouped into five code groups. Twenty-one codes were retrieved from round 3 and grouped into two code groups. Codes with code groups of rounds 1, 2, and 3 are as shown in Tables 3, 4, and 5. In round 4, a compiled report of 15 recommendations based on rounds 2 and 3 was sent to all the participants for their agreement/disagreement. Recommendations were accepted if 90–100% of the experts agreed to it. Thirteen experts agreed to all the 15 recommendations, and one expert suggested some additions. In all the rounds, 4–5 reminders were sent to get all the responses. The flow chart for the methodology is shown in Fig. 1.

Table 3 Code groups retrieved after the first round of consensus.
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Table 4 Codes and code groups after round 2 of consensus.
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Table 5 Codes and code groups after round 3 of consensus.
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Fig. 1: Flow chart of the methodology adopted to develop recommendations for standards of physiotherapy care for traumatic paraplegia in India.
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The final draft of the recommendations for physiotherapy care for persons with paraplegia was prepared after four rounds of consensus with experts. Step 1: Invitation to Experts. Step 2: Consensus Round 1. Step 3: Consensus Rounds 2 & 3. Step 4: Consensus Round 4. Step 5: Preparation for final draft. Arrow symbol used is showing the sequence of methodology.

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Results

The final draft of recommendations by participants for physiotherapy care for persons with paraplegia in India is as shown in Table 6.

Table 6 Recommendation for standards of physiotherapy care for persons with paraplegia in India.
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Discussion

Experiences/expectations of the people with paraplegia were analyzed by physiotherapy experts. Based upon the consumers’ inputs, the therapists recommended areas to address to improve the standards of physiotherapy care for people with paraplegia in India.

“To be able to stand and walk again” and “being functionally independent” were the most common expectations individuals with paraplegia reported, irrespective of their level of lesion and severity of the injury [3]. Most of the time, these expectations were not realistic/practical due to lack of knowledge and education regarding their recovery and prognosis [3]. We believe these expectations are based on cultural beliefs, education, awareness, socioeconomic status, and each patient’s understanding of his/her problem. Unmet expectations lead to dissatisfaction, disappointment, anger, and noncompliance/suboptimal compliance to the treatment and poor outcome [9]. In less developed countries like India, timely treatment and education of persons with SCI is often unavailable due to a lack of specialized centers, untrained personnel, lack of equipment, and lack of a multidisciplinary approach [10]. It is also challenging to counsel individuals with SCI regarding the nature of the injury and its prognosis due to cultural issues in developing countries. Initially, individuals with SCI are reluctant to accept their limitations and try to seek spiritual and faith healers [11]. Thus, it becomes very important to be explicit/clear in providing realistic information to the patient regarding his/her recovery, prognosis, and post discharge rehabilitation. Special emphasis on education to the patients and their caregivers must be given. Patients must be encouraged to interact with other individuals who have experience living with paraplegia as peer interaction may provide them with more insight.

Physiotherapy must be started in the initial phase of rehabilitation. The physiotherapy role revolves around the prevention of secondary complications, bed mobility, transfers, wheelchair mobility, and ambulation with the help of orthosis/aid. Many times, patients are not trained in these skills due to a lack of access to specialized centers or a lack of experienced professionals in the local hospitals. In such cases, persons with SCI may learn these skills by themselves or from a friend with SCI [12]. Physiotherapists working in local hospitals/centers may also have inadequate knowledge in caring of persons with SCIs. Lack of trained manpower is one of the major challenges in India [13] and could contribute to an inability to meet or redirect patients’ expectations. Some of the methods to mitigate this would be through organizing workshops or by way of e-learning courses.

In India, there are very few centers that are specialized in SCI rehabilitation. Patients receive care at these centers and learn basic skills during their inpatient stay. In contrast, patients may be treated in nonspecialized centers in rural areas and develop secondary complications [1, 2, 13]. Thus, it is recommended that all medical workers, even those at the Primary Health Centers, are educated about SCI and its care. If primary providers are unable to manage the patient, they should refer the patient to a specialized hospital. In addition, with newer technologies, such as telehealth, persons with SCIs in rural areas may also receive access to proper medical care and rehabilitation [14].

Conclusion

Education to the persons with SCI and caregivers regarding care post SCI is one of the important recommendations by physiotherapy experts. Subjective assessment of the patient, including their needs and preferences, is equally important as objective assessment. Physiotherapy students and practicing physiotherapists must enhance their knowledge to provide optimal physiotherapy care to people with paraplegia.