Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.

Awareness, attitudes, and beliefs about music-induced hearing loss: Towards the development of a health communication strategy to promote safe listening.

OBJECTIVE: Worldwide, 1.1 billion young people are at risk of developing hearing loss due to unsafe listening. The World Health Organization plans a global health campaign to promote behavior change. In an effort to develop effective evidence-based interventions, this study identifies modifiable factors that influence listening habits. METHODS: Online survey among 1019 individuals aged 18-35. The questionnaire was based on theories of behavior change. RESULTS: Individuals not contemplating change showed a lack of knowledge, tended not to feel particularly at risk, and did not see the benefits of preventive measures. Conversely, those considering a change perceived more barriers (e.g., lack of information on how to act,). Self-efficacy was shown to play an ambivalent role. CONCLUSION: Four factors that can be influenced by a health communication intervention were identified: risk perception, perceived safe listening level due to a lack of symptoms, knowledge, and perceived benefits and barriers, in particular perceived loss of pleasure. PRACTICE IMPLICATIONS: The first aspects can be influenced through health communication interventions. Influencing the perceived loss of pleasure additionally requires an analysis of competing pressures. To support and not exceedingly burden the individual, we further suggest to address environmental aspects (e.g., policies).

What Online User Innovation Communities Can Teach Us about Capturing the Experiences of Patients Living with Chronic Health Conditions. A Scoping Review.

BACKGROUND: In order to adapt to societal changes, healthcare systems need to switch from a disease orientation to a patient-centered approach. Virtual patient networks are a promising tool to favor this switch and much can be learned from the open and user innovation literature where the involvement of online user communities in the innovation process is well-documented. OBJECTIVES: The objectives of this study were 1) to describe the use of online communities as a tool to capture and harness innovative ideas of end users or consumers; and 2) to point to the potential value and challenges of these virtual platforms to function as a tool to inform and promote patient-centered care in the context of chronic health conditions. METHODS: A scoping review was conducted. A total of seven databases were searched for scientific articles published in English between 1995 and 2014. The search strategy was refined through an iterative process. RESULTS: A total of 144 studies were included in the review. Studies were coded inductively according to their research focus to identify groupings of papers. The first set of studies focused on the interplay of factors related to user roles, motivations, and behaviors that shape the innovation process within online communities. Studies of the second set examined the role of firms in online user innovation initiatives, identifying different organizational strategies and challenges. The third set of studies focused on the idea selection process and measures of success with respect to online user innovation initiatives. Finally, the findings from the review are presented in the light of the particularities and challenges discussed in current healthcare research. CONCLUSION: The present paper highlights the potential of virtual patient communities to inform and promote patient-centered care, describes the key challenges involved in this process, and makes recommendations on how to address them.