Strengths, gaps, and future directions on the landscape of ethics-related research for spinal cord injury

Spinal Cord, 2023 · DOI: https://doi.org/10.1038/s41393-023-00897-z · Published: April 18, 2023

Simple Explanation

This review analyzes academic studies focusing on the ethical aspects of spinal cord injury (SCI). It looks at research published between 2012 and 2021 to understand the perspectives and priorities of individuals with SCI. The study examines publication patterns, research methods, demographic reporting, and ethical discussions within the selected papers. It identifies gaps in reporting participant demographics, particularly race, ethnicity, geographic background, and income. The review highlights key themes such as relationality, access to resources, identity and life purpose, intersectionality, knowledge, divergent values, independence, and justice, all influencing the experience of living with SCI.

Study Duration

2012-2021

Participants

70 papers

Evidence Level

Review article

Key Findings

1
There is inconsistent reporting of participant demographics, specifically regarding race, ethnicity, household income, and area of residence.
2
Relationality, referring to the role of family, peers, and healthcare providers, is a frequently discussed ethics-related theme.
3
Divergent values and priorities between individuals with SCI and healthcare professionals are a prevalent ethics theme, often involving a perceived lack of empathy from physicians.

Research Summary

This review analyzed 70 papers published between 2012 and 2021 concerning the perspectives and experiences of individuals with SCI, noting that most studies originated from Western countries. A weakness identified in the reviewed publications was the reporting of participant demographic variables, including the conflation of sex and gender and the limited reporting of income, residence, employment, education, and race/ethnicity. The review identified diverse ethics-related concepts, emphasizing the importance of social support and relationships, while also highlighting divergent values between patients and healthcare providers and the need for person-centered care.

Practical Implications

Improved Demographic Reporting

Encourage researchers to provide detailed and accurate demographic data (race, income, location) in SCI studies to enable intersectional analysis.

Person-Centered Care

Promote person-centered care approaches to bridge divergent values between patients and healthcare providers, improving health outcomes.

Further Ethical Analysis

Warrant further ethical analysis of the theoretical and pragmatic distinctions between independence and autonomy tailored to the SCI context.

Study Limitations

1
Searched only two databases.
2
Excluded abstracts and papers not available in English full-text.
3
The term ethics is broad and multifaceted, and the papers included in this study do not necessarily represent the entire scope of relevant literature.

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