Contextualizing the lived experience of quality of life for persons with spinal cord injury: A mixed-methods application of the response shift model

Abstract

Objective: The objective of this study was to gain greater insight into individuals’ quality of life (QOL) definitions, appraisals, and adaptations following spinal cord injury (SCI).

Design: A mixed-methods design, applying the Schwartz and Sprangers response shift (RS) model. RS is a cognitive process wherein, in response to a change in health status, individuals change internal standards, values, or conceptualization of QOL

Setting: Community-dwelling participants who receive medical treatment at a major Midwestern medical system and nearby Veterans’ Affairs hospital.

Participants: A purposive sample of participants with SCI (N = 40) completed semi-structured interviews and accompanying quantitative measures.

Interventions: Not applicable.

Outcome Measures: Qualitative data were analyzed using content analysis to identify themes. Analysis of variance were performed to detect differences based on themes and QOL, well-being, and demographic and injury characteristics.

Results: Four RS themes were identified, capturing the range of participant perceptions of QOL. The themes ranged from complete RS, indicating active engagement in maintaining QOL, to awareness and comparisons redefining QOL, to a relative lack of RS. Average QOL ratings differed as a function of response shift themes. PROMIS Global Health, Anxiety, and Depression also differed as a function of RS themes.

Conclusion: The RS model contextualizes differences in QOL definitions, appraisals, and adaptations in a way standardized QOL measures alone do not.

Keywords:

• Spinal cord injury
• Quality of life
• Response shift
• Neurogenic bladder and bowel
• Patient experiences
• Qualitative research
• Mixed methods research

Acknowledgements

The authors wish to thank those who shared their stories and experiences with us. They honor us with their trust and candidness. We hope that by disseminating this work we honor them in return. Further, we wish to thank our tireless research assistants – Emily Zafiroff and Roxanne Madrid – who contributed invaluable help in coding, theme identification, and refining our theme definitions. Finally, we thank Colette Duggan, PhD for inspiring and facilitating the careful qualitative analyses herein.

Disclaimer statements

Conflict of interest The authors have no conflicts of interests to declare. The authors will not financially benefit from the publication of this work and have no patents or copyrights pending related to this work.

Additional information

Funding

This work was supported by the Department of the Army USAMRAA, U.S. Department of Defense (CDMRP) under grant number #SCI110228; the National Institute on Disability and Rehabilitation Research (NIDILRR) under grant number #90AR5020–0200; and the University of Michigan Advanced Rehabilitation Research Training Program (ARRT).