Representing and organizing information to describe the lived experience of health from a personal factors perspective in the light of the International Classification of Functioning, Disability and Health (ICF): a discussion paper

Abstract

Purpose: To discuss the representation and organization of information describing persons’ lived experience of health from a personal factors perspective in the light of the International Classification of Functioning, Disability and Health, using spinal cord injury as a case in point for disability.

Methods: The scientific literature was reviewed, discussion rounds conducted, and qualitative secondary analyses of data carried out using an iterative inductive–deductive approach.

Results: Conceptual considerations are explicated that distinguish the personal factors perspective from other components of the International Classification of Functioning, Disability and Health. A representation structure is developed that organizes health-related concepts describing the internal context of functioning. Concepts are organized as individual facts, subjective experiences, and recurrent patterns of experience and behavior specifying 7 areas and 211 concept groups.

Conclusions: The article calls for further scientific debate on the perspective of personal factors in the light of the International Classification of Functioning, Disability and Health. A structure that organizes concepts in relation to a personal factors perspective can enhance the comprehensiveness, transparency and standardization of health information, and contribute to the empowerment of persons with disabilities.

Implications for rehabilitation

• The present study collected data from scientific literature reviews, discussion rounds and qualitative secondary analyses in order to develop a representation and organization of information describing persons’ lived experience of health from a personal factors perspective in the light of the International Classification of Functioning, Disability and Health.

• The following representation structure for health-related information from a personal factors perspective was developed: (i) Individuals facts (i.e., socio-demographical factors, position in the immediate social and physical context, personal history and biography), (ii) subjective experience (i.e., feelings, thoughts and beliefs, motives), and (iii) recurrent patterns of experience (i.e., feelings, thoughts and beliefs) and behavior.

• With this study, we aim to stimulate further scientific discussion about the personal factors component in the International Classification of Functioning, Disability and Health, including its application and subsequent validation for potential implementation into clinical practice.

Keywords:

• Controlled vocabulary
• International Classification of Functioning Disability and Health
• psychological factors
• personal factors

Acknowledgements

The authors greatly appreciate the contribution of Prof. Dr. Gerold Stucki for his encouragement to pursue the project. We also thank all authors who have published their findings and views about ICF personal factors so far.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the Swiss Paraplegic Research (SPF), Nottwil, Switzerland.