ArticleIntestinal Failure (New York, N.Y.)
Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers.
Article in Intestinal Failure (New York, N.Y.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Health information-seeking is a central strategy used by patients and caregivers to cope with chronic illness. This study investigated the sources of disease-specific information utilized by adult patients with IF and caregivers of pediatric IF patients to identify existing information needs. Materials and methods: Using a community-driven research design, we developed a cross-sectional questionnaire to identify information sources and needs. The survey was disseminated via relevant patient support organizations, personal networks, and disease-specific social media support groups. Descriptive and univariate analyses were conducted to identify common information sources and needs and assess differences by respondent type. Results: A total of 283 respondents, consisting of adult patients with a history of IF (n = 167) and caregivers of pediatric patients with a history of IF (n = 116), completed the survey. Only half were receiving care via an intestinal rehabilitation program. The most frequently used sources of IF-specific information were specialist providers or teams (64%) and social media support groups (52%); a significantly larger share of patients than caregivers reported general practitioners as an information source (30% vs. 13%, p = 0.001). Top information needs pertained to 1) better understanding the current state of the field, 2) optimizing day-to-day life with IF and improving quality of life, and 3) supporting mental health and fostering a sense of connection. Conclusion: Within this sample of engaged and resource-seeking participants, we found respondents utilized multiple information sources and expressed a range of information needs. We offer several suggestions for addressing these needs.
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