Patients’ perceptions of family engagement in health information practices: influences on the self-management of asthma

Abstract

ABSTRACT Background Involving patients and family members in care is a growing area of research and practice as more family members express the desire to participate as constituents of the patient care team. In this study, we aim to understand patients’ perceptions of family participation in asthma self-management, particularly concerning health information seeking behavior. Methods Semistructured interviews with 35 patients with asthma were conducted at the Immunoallergology wards of both a central public hospital and a private hospital in Porto, Portugal. Data were collected through the McGill Illness Narrative Interview. Interviews were thematically analyzed as case-based and process tracing-oriented. Results Asthma in the family history appeared to be a major determinant of two profiles of patients with asthma: Group 1 (n = 23/35) patients with asthma who are ‘nonseekers’ of health information and for whom asthma ispart of their family histories and who easily adapt to illness in their daily lives, although they had difficulties controlling their asthma, given the disease severity; and Group 2 (n =12/35) patients with asthma who are ‘seekers’ and do not have family histories of asthma and whose experiences of illness brought limitations to their daily lives, raising questions of bafflement (Why me?) and control (What can be done?). Conclusions Asthma patients with family histories tend to be more accepting of their diagnosis but require basic information for daily management. Asthma patients without family histories tend to deny the condition and require more emotional support to cope with it. The family should be considered as integral to the processes of knowledge-sharing and decision-making, and how families experience the disease should be taken into account by health professionals when offering a treatment plan.