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

The Journal of Spinal Cord Medicine, 2019 · DOI: 10.1080/10790268.2018.1517471 · Published: July 1, 2019

Spinal Cord Injury Participation Research Methodology & Design

Simple Explanation

This study explores how individuals with spinal cord injury (SCI) define, assess, and adapt their quality of life (QOL). It uses a model called 'response shift' (RS), where people change their internal standards or values about QOL after a change in health. The study identified four themes showing different perceptions of QOL after SCI. These themes ranged from actively maintaining QOL to redefining it based on awareness and comparisons, or a lack of adapting to the changes. The response shift model helps understand differences in QOL in ways that standard measurements alone cannot. By understanding these shifts, healthcare providers can better support individuals with SCI in maintaining or improving their quality of life.

Study Duration

Not specified

Participants

40 participants with SCI

Evidence Level

Not specified

Key Findings

1
Four response shift themes were identified: behavior-driven, awareness-driven, social comparison, and resignation and despair.
2
Average QOL ratings differed based on the response shift themes, with behavior-driven themes reporting the highest QOL and resignation and despair themes reporting the lowest.
3
PROMIS Anxiety and Depression scores also differed significantly as a function of RS themes with those demonstrating Resignation and Despair having the highest levels of both anxiety and depression.

Research Summary

This study examined how individuals with spinal cord injury (SCI) experience, define, and maintain quality of life (QOL) by using the response shift (RS) model. The RS model helps contextualize the QOL construct beyond what is seen in standardized measures. Four themes were identified, illustrating different cognitive, emotional, and behavioral responses to SCI: behavior-driven, awareness-driven, social comparison, and resignation and despair. These themes were linked to varying levels of self-reported QOL and mental health. The findings suggest that understanding an individual's response shift category can assist clinicians in tailoring interventions to address psychosocial issues impacting QOL, providing personalized data for decision-making beyond standardized assessments.

Practical Implications

Tailored Interventions

Clinicians can use the response shift framework to explore individual patient perspectives systematically, which can lead to more tailored interventions based on patient readiness.

Psychosocial Support

Recognizing common characteristics within each of the four response shift themes can improve exploration and treatment of broader psychosocial issues affecting QOL.

Personalized Data for Decision-Making

Identifying patients’ response shift category may guide clinicians’ approaches, providing richer, more-personalized data for decision-making than standardized assessments alone.

Study Limitations

1
Possibility of bias in the selection of representative quotes.
2
Using RS as both guiding coding scheme and interpretative frame may have produced self-evident findings.
3
Small sample size for statistical analyses.

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