Objective Although stigma may have negative psychosocial and behavioral outcomes for patients with lung cancer, its measurement has been limited. A conceptual model of lung cancer stigma and a patient-reported outcome (PRO) measure is needed to mitigate these sequelae. This study identified key stigma-related themes to provide a blueprint for item development through thematic analysis of semi-structured interviews and focus groups with lung cancer patients. Methods Participants were recruited from two outpatient oncology clinics and included: a) 42 lung cancer patients who participated in individual interviews and, b) 5 focus groups (inclusive of 23 new lung cancer patients). Never smokers, long-term quitters, recent quitters, and current smokers participated. Individual interviews facilitated theme development and a conceptual model of lung cancer stigma, whereas subsequent focus groups provided feedback on the conceptual model. Qualitative data analyses included iterative coding and validation with existing theory. Results Two main thematic elements emerged from interviews with lung cancer patients: perceived (felt) stigma and internalized (self) stigma. Discussions of perceived stigma were pervasive, while internalized stigma was more commonly endorsed among current and recently quit smokers. Participants also discussed maladaptive (e.g., decreased disclosure) and adaptive (e.g., increased advocacy) stigma-related consequences. Conclusions Results indicate widespread acknowledgment of perceived stigma among lung cancer patients, but varying degrees of internalized stigma and associated consequences. Next steps for PRO measure development are item consolidation, item development, expert input, and cognitive interviews before field testing and psychometric analysis. Future work should address stigma-related consequences and interventions for reducing lung cancer stigma.
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
BackgroundBack pain, the most common type of pain reported by older adults, is often undertreated for reasons that are poorly understood, especially in minority populations. The objective of this study was to understand older adults’ beliefs and perspectives regarding care-seeking for restricting back pain (back pain that restricts activity).MethodsWe used data from a diverse sample of 93 older adults (median age 83) who reported restricting back pain during the past 3 months. A semi-structured discussion guide was used in 23 individual interviews and 16 focus groups to prompt participants to share experiences, beliefs, and attitudes about managing restricting back pain. Transcripts were analyzed in an iterative process to develop thematic categories.ResultsThree themes for why older adults may not seek care for restricting back pain were identified: (1) beliefs about the age-related inevitability of restricting back pain, (2) negative attitudes toward medication and/or surgery, and (3) perceived importance of restricting back pain relative to other comorbidities. No new themes emerged in the more diverse focus groups.ConclusionsIllness perceptions (including pain-related beliefs), and interactions with providers may influence older adults’ willingness to seek care for restricting back pain. These results highlight opportunities to improve the care for older adults with restricting back pain.
Our exploratory analysis reveals that providers engaging hesitant parents and addressing their concerns can lead to same-day HPV vaccination. Data reveal that even parents making assertive statements are amenable to influence by providers. Our findings reveal an important missed opportunity when providers simply acquiesce to parental hesitation.
Objective Self-persuasion is an effective behavior change strategy, but has not been translated for low-income, less educated, uninsured populations attending safety-net clinics or to promote human papillomavirus (HPV) vaccination. We developed a tablet-based application (in English and Spanish) to elicit parental self-persuasion for adolescent HPV vaccination and evaluated its feasibility in a safety-net population. Methods Parents (N=45) of age-eligible adolescents used the self-persuasion application. Then, during cognitive interviews, staff gathered quantitative and qualitative feedback on the self-persuasion tasks including parental decision stage. Results The self-persuasion tasks were rated as easy to complete and helpful. We identified six question prompts rated as uniformly helpful, not difficult to answer, and generated non-redundant responses from participants. Among the 33 parents with unvaccinated adolescents, 27 (81.8%) reported deciding to get their adolescent vaccinated after completing the self-persuasion tasks. Conclusions The self-persuasion application was feasible and resulted in a change in parents’ decision stage. Future studies can now test the efficacy of the tablet-based application on HPV vaccination. Practice Implications The self-persuasion application facilitates verbalization of reasons for HPV vaccination in low literacy, safety-net settings. This self-administered application has the potential to be more easily incorporated into clinical practice than other patient education approaches.
Background Colorectal cancer (CRC) screening is effective but underused. Guidelines for which tests are recommended and at what intervals depend on specific risks. We developed a tablet-based Cancer Risk Intake System (CRIS) that asks questions about risk prior to appointments and generates tailored printouts for patients and physicians summarizing and matching risk factors with guideline-based recommendations. Methods Randomized controlled trial among patients who: (1) used CRIS and they and their physicians received tailored printouts; (2) used CRIS to answer questions but received standard information about cancer screening while their physicians received a standard electronic chart prompt indicating they were age-eligible but not currently adherent for CRC screening; or (3) comprised a no-contact group that neither used CRIS nor received any information while their physicians received the standard prompt. Participation in testing was assessed via electronic medical record at 12 months. Results Participation in any CRC testing was three times higher for those who used the CRIS and received any printed materials, compared to no-contact controls (47% v. 16%; p < 0.0001). Among CRIS users ages 50 and older, participation in any testing was higher in the tailored group (53% v. 44%, p=0.023). Conclusion Use of CRIS and receipt of any information facilitated participation in testing. There was more testing participation in the CRIS-tailored than nontailored group. Impact Asking patients questions about their specific risk factors and giving them and their providers’ information just prior to an appointment may increase participation in CRC testing. Tailoring the information has some added benefit.
These data inform which outcomes should be measured in studies evaluating treatments for older adults with restricting back pain.
Background According to Self-Determination Theory, the extent to which the motivation underlying behavior is self-determined or controlled influences its sustainability. This is particularly relevant for behaviors that must be repeated, such as completion of the human papillomavirus (HPV) vaccine series. To date, no measures of motivation for HPV vaccination have been developed. Methods As part of a larger study, parents (N=223) whose adolescents receive care at safety-net clinics completed a telephone questionnaire about HPV and the vaccine. We modified the Treatment Self-Regulation Questionnaire to assess parents’ motivation for HPV vaccination in both Spanish and English. We used confirmatory factor analysis to test a three-factor measurement model. Results The three-factor model fit the data well (RMSEA=.04, CFI=.98, TLI=.96), and the scales’ reliabilities were adequate (autonomous: α=.87; introjected: α=.72; external: α=.72). The factor loading strength for one item was stronger for Spanish- than English-speaking participants (p<.05); all others were equivalent. The intercorrelations among the scales ranged from −.17 to .32, suggesting discriminant factors. The scales displayed the expected pattern of correlations with other psychosocial determinants of behavior. Vaccination intentions showed a strong correlation with autonomous motivation (r= .52), but no correlation with external motivation (r=.02), suggesting autonomous motivation may be particularly important in vaccine decision-making. Conclusion Findings support the use of three subscales to measure motivation in HPV vaccination and suggest possible cultural differences in motivation.
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