Description

---

Background: Studies on expectations of patients with paraplegia regarding physiotherapy care in India are scarce and there are no freely available standards of physiotherapy care for persons with traumatic paraplegia in India based on cultural characteristics and published research. Aim: The aim of present study was to understand patients' expectations, and formulate recommendations/standards of physiotherapy care for persons with complete traumatic paraplegia in India, by incorporating current best evidence, patients' expectations, and experts' opinion.
Materials and Methods: Multi-phase mixed method research design was used in this study. There were four phases. In Phase 1, current best evidence was explored. In Phase 2a, focus group interviews were conducted to understand patients' expectations. In phase 2b, physiotherapy experts' consensus was obtained on patients' expectations. In phase 2c, information was obtained from working physiotherapists on a questionnaire based on physiotherapy experts' recommendations. In phase 3, standards were formulated and in phase 4, standards were checked for its feasibility in two centres in India. Data was analysed by using ATLASti 8.0 software for qualitative data analysis and descriptive statistics.
Results and Discussion: Phase 1: There was scant and inconclusive literature on the practice guidelines or standards of care in India. Phase 2a: Twenty three points were emerged from "participant checking." In Phase 2b- Response rate was 60.86% and fifteen recommendations were obtained. In Phase 2c- Response rate was 18%. Majority of the working physiotherapists had negative response towards applicability of guidelines mentioned in books or journals for persons with paraplegia in India. The reasons mentioned were financial constraints, infrastructure limitations, non-availability of patients, lack of proper orthosis, patients' response, and acceptance, patients & relatives' cooperation and expectations. Phase 3- Responses regarding compiled draft of standards of physiotherapy care were received from two reviewers and changes were incorporated. Phase 4- Response rate of the invitation was 60%, response rate for pre KAP was 100%, response rate for post-KAP 1 was 83.33 % and response rate for post-KAP 2 was 58.33%.
Conclusions: There is lack of incorporating patients' needs/preferences and opinion of physiotherapy experts in available guidelines in India. Due to lack of awareness and education provided to persons with paraplegia, many times expectations are not realistic/ practical. Patient education and education of the health professionals are two of the most important aspects in SCI rehabilitation that must be taken into consideration in India. There was no impact of the draft of standards on participants' knowledge, attitude and practice in short term.