Examining caregiver perceptions and distress related to patient pain.
e20555 Background: We conducted a randomized trial comparing a brief baseline pain educational intervention with the addition of either a hot line for pain related issues or weekly calls from health providers to assess pain and medication use. Results of this trial have been previously reported (J Pain Symptom Manage. 2003 Apr;25(4):344-56). Caregiver beliefs may impact patient compliance with pain treatment so caregivers also received pain education. As a secondary endpoint we investigated caregiver beliefs related to: 1) known barriers to compliance with pain medication (feasibility of pain control, addiction concerns, fears of overdose and toxicity), 2) perceptions regarding patient pain level, 3) distress related to patient pain, and 4) efficacy in helping control patient pain. Methods: 28 informal caregivers completed the Family Pain Questionnaire (part 1: 8 items related to beliefs, part 2: 6 items related to pain perceptions). All items were scored using a 10cm visual analogue scale. Questionnaires were completed at baseline, immediately and 1 month post-education. Results: Caregiver characteristics: 64% married, 54% ≤ high school education. The caregiver pain belief subscale mean score was 4.9 (SD 1.7) at baseline, 5.6 (SD 1.4) post-education and 5.9 (SD 0.9) at 1 month indicating improved beliefs over time (p=.001). Caregivers consistently rated pain higher than patients (baseline: M=6.7 (SD=2.6) vs. M=4.1 (SD=2.3), p<0.001, 1-Month: M=5.1 (SD=3.2) vs. M=3.4 (SD=2.7), p=0.003). They also reported more distress related to pain than patients . Distress among caregivers due to patient pain was high at baseline (median=8.4, IQR: 5.6-9.5), and remained high at 1 month (median=7.7, IQR: 4.7-9.3). While not statistically significant, caregiver perception of ability to relieve pain improved from baseline (median=4.6, IQR: 0.8-8.3) to 1 month (median=2.4, IQR: 1.2-4.5, p=0.115). Conclusions: Despite improvements in caregiver beliefs regarding barriers to good pain control, decrease in levels of patient pain, and improved self-efficacy in assisting with pain control, caregiver distress related to patient pain remained high. Future research should be focused on further characterizing the factors that contribute to caregiver distress.