Health information behavior in families: supportive or irritating?

ABSTRACT We report preliminary results of a mixed methods study of relationships between family-based information behavior and social support in chronic illness. Twenty-four participants (12 people with HIV/AIDS (PHAs) and 12 people with diabetes) completed surveys, visualized their family-based social support networks, and participated in in-depth, qualitative interviews. Findings revealed that our sample of people with diabetes had significantly larger family support networks than did PHAs. These differences seem linked to greater interpersonal constraints in talking about HIV/AIDS in families. Yet, the two groups did not differ in terms of perceived social support (PSS), frequency of collaborative information behavior (CIB), or use of information obtained collaboratively. However, a surprising relationship between CIB and PSS emerged among diabetics but not PHAs: the greater the frequency of CIB with family members, the less supportive they were perceived to be. This seems rooted in the prevalence of attempted influence and interference by diabetics' family members. Nevertheless, among both PHAs and diabetics, a significant overlap existed between receipt of informational and emotional support. Indeed, information sharing and emotional support could be the same in interactions such as questions of concern, goal attainment, and caring forwards. This study is among the first to document differences in social support and CIB among people with different diseases, pointing to the merit of information services and systems differentiated by disease. The overlap between informational and emotional support suggests the value of organizing, presenting, or rating health information according to emotional valence. Demonstrating that CIB may have negative effects challenges information scientists to reconsider whether receipt of information is always positive. Health information behavior in families therefore appears more complex than has been previously shown