Patient and Caregiver Perspectives on Managing Multiple Health Conditions

OBJECTIVES: To explore patient and caregiver experiences, preferences, and attitudes toward the provision and receipt of caregiving assistance with medical tasks. DESIGN: Qualitative study consisting of in-depth interviews with 20 patient-caregiver dyads. SETTING: Community and academic-affiliated primary care clinics. PARTICIPANTS: Individuals aged 65 or older with 2 or more health conditions and their family caregivers (n=20 patient-caregiver dyads). MEASUREMENTS: Open-ended questions were asked about the tasks that the patient and caregiver performed to manage the patient's health conditions; questions were designed to elicit participant reactions and attitudes toward the help they provided or received. Transcripts were analyzed using the constant comparative method. RESULTS: Participant preferences and attitudes toward the receipt and provision of disease management tasks were highly personal. Participant responses clustered into 2 caregiving typologies: supportive caregiving relationships and conflicted caregiving relationships. Supportive relationships were characterized by patient-caregiver agreement about caregiver level of involvement, agreement about one another's competency to perform disease-related tasks, mutual understanding, collaborative decision-making and disease management, and use of family and formal caregiving. Conflicted relationships were characterized by disagreement about caregiver level of involvement, disagreement about one another's competency to perform disease management tasks, underappreciation of one another's experiences, disagreement over decision-making and disease management, and use of formal caregiving. CONCLUSIONS: The views that patient-caregiver dyads expressed in this study illustrate the varied preferences and attitudes toward caregiving assistance with multiple health conditions. These findings support a dyadic approach to evaluating and addressing patient and caregiver needs and attitudes toward provision of assistance.