Comprehensive and person-centred approach in research: what is missing?

Area of Science:

• Rehabilitation Medicine
• Health Services Research
• Disability Studies

Background:

• The International Classification of Functioning, Disability and Health (ICF) framework emphasizes a person-centred approach in healthcare.
• Despite its importance, a comprehensive, person-centred approach has not been fully integrated into spinal cord injury (SCI) research.
• Valuing the perspectives of individuals with SCI is essential for research that aims to benefit them directly or indirectly.

Purpose of the Study:

• To discuss limiting factors in implementing person-centred research for spinal cord injury (SCI).
• To highlight successful initiatives towards the global adoption of this research approach.
• To propose actionable steps for implementing a person-centred model in SCI research.

Main Methods:

• This paper is a perspective piece, analyzing existing literature and practices.
• It draws on the principles of the International Classification of Functioning, Disability and Health (ICF).
• It synthesizes examples of past and current efforts in person-centred research for SCI.

Main Results:

• Several factors hinder the full implementation of person-centred research in SCI.
• Successful examples demonstrate the feasibility and benefits of incorporating patient perspectives.
• There is a need for structured strategies to overcome identified barriers.

Conclusions:

• A fully person-centred approach in SCI research requires addressing identified limitations.
• Successful implementation necessitates valuing the lived experiences of individuals with SCI as research drivers.
• Further steps are needed to embed this model effectively in SCI research globally.