Experiences of patients with a disability in receiving primary health care: Using experience-based design for quality improvement.

OBJECTIVE: To use patient-guided tours to gain insight into the experiences of patients with disabilities receiving primary care, with the goal of suggesting improvements. DESIGN: A qualitative experience-based design study, using patient-guided tours. SETTING: Multidisciplinary academic urban primary care practice. PARTICIPANTS: Patients with disabilities identified by their health care providers. METHODS: Patients walked through the clinic as they would on a "typical visit" describing their feelings and experiences. The investigator used a semistructured interview guide to prompt the patient. The tour was audiorecorded and transcribed. Thematic content analysis was used. MAIN FINDINGS: Participants included 18 patients with various disabilities (physical disability, sensory disability, chronic illness, mental illness, learning disability, developmental disability). Strong positive relationships, particularly with the team and administrative staff, profoundly affected perceived access and experience of care. Multidirectional, clear, and respectful communication independently improved patients' experiences dramatically. Participants said that many access, coordination, and physical barriers were eased by team relationships and communication. Physical space and building issues were troublesome for those with physical and mental disabilities alike. Each participant's disability itself played a role in their experience but was not described as prominently as their relationship, communication, and spatial challenges. Participants described the patient-guided tour method as valuable to elicit experiences and feelings. CONCLUSION: Some health care teams are unaware of how relationships and communication affect every aspect of health care for people with disabilities. Highlighting these findings with providers and organizations might prompt a more patient-centred model of care. Our experience-based design consisting of patient-guided tours was effective in assessing how those with disabilities experienced care.

The prevalence and clinical correlates of adverse childhood experiences in a cross-sectional study of primary care patients with cardiometabolic disease or risk factors.

BACKGROUND: Adverse childhood experiences (ACEs) are associated with risk of poor adult health, including cardiometabolic diseases. Little is known about the correlates of ACEs for adults who have already developed cardiometabolic diseases, or who are at elevated risk. METHODS: Adult primary care patients with cardiometabolic disease (hypertension, diabetes, stroke, angina, myocardial infarction, coronary artery bypass graft, angioplasty) or with a risk factor (obesity, smoking, high cholesterol, family history) were surveyed regarding ACEs, psychological distress, attachment insecurity, quality of life, behavior change goals, stages of change, and attitudes toward potential prevention strategies. RESULTS: Of 387 eligible patients, 74% completed the ACEs survey. Exposure to ACEs was reported by 174 participants (61%). Controlling for age, gender, relationship status and income, number of ACEs was associated with psychological distress (F = 3.7, p = .01), quality of life (F = 8.9, p = .001), attachment anxiety (F = 3.4, p = .02), drinking alcohol most days (F = 4.0, p = .008) and smoking (F = 2.7, p = .04). Greater ACE exposure was associated with less likelihood of selecting diet or physical activity as a behavior change goal (linear-by-linear association p = .009). Stage of change was not associated with ACEs. ACEs exposure was not related to preferred resources for behavior change. CONCLUSIONS: ACEs are common among patients at cardiometabolic risk and are related to quality of life, psychological factors that influence cardiometabolic outcomes and behavior change goals. ACEs should be taken into account when managing cardiometabolic risk in family medicine.