Expectations of persons with paraplegia regarding their care in India: a qualitative study

Spinal Cord Series and Cases, 2017 · DOI: 10.1038/scsandc.2017.42 · Published: July 13, 2017

Spinal Cord Injury Rehabilitation Research Methodology & Design

Simple Explanation

This study explores what people with paraplegia in India expect from their healthcare and rehabilitation. It uses interviews to understand their needs and concerns. The research found that many patients lack knowledge about their condition, leading to unrealistic expectations. This can cause disappointment with the care they receive. The study emphasizes the importance of educating both patients and healthcare professionals to improve spinal cord injury rehabilitation in India.

Study Duration

Not specified

Participants

20 adults with paraplegia (level T6 and below, complete injury, duration of at least 6 months post injury)

Evidence Level

Level IV, Qualitative study

Key Findings

1
Lack of knowledge about SCI leads to unrealistic expectations among patients with paraplegia in India.
2
Patients treated in specialized centers have better knowledge about their condition and are more comfortable, but may have higher expectations.
3
Many patients learn basic skills like bed mobility and transfers independently or from friends due to a lack of adequate training in local centers.

Research Summary

This qualitative study aimed to understand the expectations of persons with paraplegia in India regarding their care, using focus group interviews. The study identified 48 codes grouped under 14 code groups, including acceptance, accessibility, knowledge, and psychological make-up, revealing key themes in patient expectations. The conclusion emphasizes that because of a lack of awareness and education provided to persons with paraplegia, many times expectations are not realistic/practical.

Practical Implications

Increase SCI Awareness

Implement public awareness campaigns using various media to educate the public about SCI prevention and proper transportation of injured individuals.

Improve Patient Education

Provide clear information about recovery and prognosis to manage patient expectations and reduce unrealistic hopes.

Enhance Healthcare Professional Training

Ensure that healthcare professionals have adequate knowledge and resources to provide comprehensive SCI rehabilitation.

Study Limitations

1
The study may be biased due to the participants having internet access.
2
The study is limited to individuals with lesions at T6 and below, complete injury, and those living in the community.
3
The study relies on self-reported expectations, which may be influenced by recall bias or social desirability.

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