Healthcare Injustice Experiences or Negative Pain Coping Strategies in Patients with Sickle Cell Disease: Which Comes First?

Purpose/Theoretical Rationale: Healthcare injustice is a psychological stressor that has been associated with adverse psychological (stress) and physiological (pain) consequences in patients with sickle cell disease (SCD).¹ Research evidence suggests that patients with SCD endorse different approaches to cope with sickle cell pain.^{2, 3} Little is known about the pain coping strategies of patients with SCD who report experiencing healthcare injustice in their pain control. The purpose of this comparative study was to determine the pain coping strategies of patients with SCD who reported experiencing healthcare injustice compared to those who did not report such experience. We hypothesized that patients with SCD who perceived healthcare injustice from doctors or nurses would use more negative pain coping strategies than those who reported healthcare justice from doctors or nurses.

Methods: In a cross-sectional descriptive comparative study, patients (N=52, mean age 34 ±11 years [20-70], 92% African American, 79% female, 92% with a high school diploma or higher) completed the valid and reliable PAINReportIt^®,^{4, 5} a computerized version of the McGill Pain Questionnaire,⁶ which includes questions to measure patients’ demographics. Patients also completed the Healthcare Justice Questionnaire (HJQ)¹  twice, once for doctors and the second time for nurses; and the Coping Strategies Questionnaire-Revised (CSQ-R) for sickle cell disease.³ We created healthcare justice and healthcare injustice groups using a median score of 3.5 as a cut-off. Patients who scored below 3.5 formed the healthcare injustice group while patients who scored above 3.5 made up the healthcare justice group. The CSQ-R has three major categories containing thirteen subscales (ranges 0-6): cognitive strategies (8 subscales), behavioral strategies (2 subscales), and physiological strategies (3 subscales); and one effectiveness ratings category with two subscales (ranges 0-6): control over pain (1-item subscale) and ability to decrease pain (1-item subscale). Patients’ responses indicated how often they used the coping strategy to control pain. We analyzed the data using independent t-tests.

Results: We found the mean (SD) of the HJQ-doctors total score (ranges 1-5) to be 3.68 (.79) and of the HJQ-nurses total score (ranges 1-5) to be 3.52 (.86). The mean (SD) of the eight CSQ-R cognitive strategies subscales were: diverting attention, 2.9 (1.7); reinterpreting pain sensations, 1.4 (1.5); calming self-statements, 3.9 (1.6); ignoring pain sensations, 2.2 (1.5); praying and hoping, 4.3 (0.9); catastrophizing, 2.9 (1.5); fear self-statements, 3.2 (1.5); and anger self-statements, 3.0 (1.2). The mean (SD) of the two CSQ-R behavioral strategies subscales were: increasing behavioral activity, 2.9 (1.4) and isolation, 3.2 (1.7). We found the mean (SD) of the three physiological strategies subscales to be: taking fluids, 4.3 (1.5); resting, 4.5 (1.0), and heat/cold massage, 3.8 (1.2). For the effectiveness ratings subscales, the means (SD) were: control over pain, 3.8 (1.2) and ability to decrease pain, 3.5 (1.1).

Our comparative analysis results showed that there were statistically significant differences between patients who reported perception of healthcare justice from doctors and those who reported experiencing healthcare injustice from doctors on pain coping strategies. Patients who reported healthcare justice from doctors were more likely to use a cognitive strategy: praying and hoping (p=.046); and 2) trended toward using a physiological strategy: heat/cold massage (p=.069) than patients who reported healthcare injustice from doctors. Patients who report healthcare injustice from doctors were more likely to use: 1) cognitive strategies: catastrophizing (p=.016); and they trended toward using fear self-statements (p=.073) and anger self-statements (p=.053); and 2) behavioral strategy: isolation (p=.028) than patients who reported healthcare justice from doctors. For the effectiveness ratings, control over pain and ability to decrease pain, the healthcare justice and injustice groups did not differ significantly.

The results of our comparative analysis for the HJQ-nurses showed similar patterns as the HJQ-doctors. There were statistically significant differences between patients who reported experiences of healthcare justice from nurses and those who reported experiencing healthcare injustice from nurses on pain coping strategies. Patients who reported healthcare justice from nurses were more likely to use: 1) cognitive strategies: diverting attention (p=.014), calming self-statements (p=.005), praying and hoping (p=.001), and trended toward using ignoring pain sensations (p=.095); and 2) behavioral strategies: increasing behavioral activity (p=.028) than patients who reported healthcare injustice from nurses. Patients who reported healthcare injustice from nurses were more likely to use: 1) behavioral strategy: isolation (p=.028); and 2) a trend toward using cognitive strategies: catastrophizing (p=.093) and fear self-statements (p=.059) than patients who reported healthcare justice from nurses. We also found that for the effectiveness ratings, patients who reported healthcare justice from nurses were more likely to report that they had control over pain (p=.038) and showed a trend toward having ability to decrease their pain (p=.093) than patients who reported experiencing injustice from nurses.

Conclusions: The findings support our hypotheses. Patients reporting healthcare justice from doctors or nurses used positive cognitive or behavioral pain coping strategies compared to patient who reported healthcare injustice from doctors or nurses who used negative cognitive and behavioral pain coping strategies. Findings provide preliminary evidence of the pain coping strategies of patients with SCD who perceive either justice or injustice from healthcare providers in their attempt to manage their pain. If replicated in future studies, findings will provide evidence to better understand the relationship between healthcare injustice and pain coping strategies in patients with SCD, and likely inform future intervention studies on the topic. It’s not clear whether patients with SCD who report experiencing healthcare injustice gravitate towards using negative pain coping strategies because of their personality type or that they use negative pain coping strategies because they appraise situations negatively due to constant exposure to healthcare injustice. Future studies that examine the relationship between personality type and pain coping strategies in patients with SCD who report experiencing healthcare justice or injustice will provide evidence to address this gap in knowledge.