Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation

Abstract

BackgroundIn order to meet the challenges of caring for an injured person, caregivers need access to health information. However, caregivers often feel that they lack adequate information. Previous studies of caregivers have primarily focused on either their time and emotional burdens or their health outcomes, but the information needs of caregivers have not been thoroughly investigated.ObjectiveThe purpose of this investigation was to identify the preferred sources of health information for caregivers supporting individuals with injuries and to explore how access to this information could be improved.MethodsA total of 32 caregivers participated in semistructured interviews, which were used in order to develop a more in-depth understanding of these caregivers’ information needs. Digital audio recordings of the interviews were used for analysis purposes. These audio recordings were analyzed using a thematic analysis or qualitative content analysis. All of participant’s interviews were then coded using the qualitative analysis program, Nvivo 10 for Mac (QSR International).ResultsThe caregivers endorsed similar behaviors and preferences when seeking and accessing health information. Medical professionals were the preferred source of information, while ease of access made the Internet the most common avenue to obtain information. The challenges faced by participants were frequently a result of limited support. In describing an ideal health system, participants expressed interest in a comprehensive care website offering support network resources, instructive services about the injury and caregiving, and injury-specific materials.ConclusionsAccording to the participants, an ideal health information system would include a comprehensive care website that offered supportive network resources, instructive services about the injury and caregiving, and materials specific to the type of patient injury.

Health status, difficulties, and desired health information and services for veterans with traumatic brain injuries and their caregivers: A qualitative investigation

“…However, a unique insight from our interviews is the emphasis on the chronic nature of TBI due to the wide variation of times since injury. Our findings of health-related changes, difficulties, and greatest support, among caregivers are similar to previous qualitative research of caregivers of patients with TBI [ 35 ].…”

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

“…In the reviewed literature, informal caregivers find ICT-based supporting solutions to be time-consuming [ 33 , 39 , 43 , 44 ]. This time consumption may overload the caregiving daily routines instead of supporting them and thus increases the burden [ 36 ].…”

“…Furthermore, informal caregivers are a group of people for whom time is typically strained, hence they prefer simple and easy-to-operate technologies [ 39 ]. When caregivers spend longer times providing direct caregiving tasks, they do not have the time or energy to search for information and seek support via the internet [ 33 , 39 , 43 , 44 ].…”

“…Coffey et al [ 33 ] mentioned that informal caregivers have very little extra time to participate in online activities such as calls and webinars and they avoid spending too much time using complicated technologies. This is in line with the findings of another reviewed study by Nunez et al [ 44 ] where informal caregivers found the supporting solution in the study to be time-consuming given the solution could not be integrated with their existing medical records, which was perceived as a complication by them.…”

“…Some informal caregivers don’t feel confident about the information provided via ICT solutions [ 41 , 55 ]. Informal caregivers reported their concerns about the quality of the content presented via ICT solution [ 33 , 34 , 51 ]. The content is almost superficial, and finding credible concrete information for informal caregivers still proved to be a challenging task [ 33 , 34 ].…”