“Burns can also lead to many chronic complications, including reduced quality of life and increased disability,” wrote Ali Weinstein, PhD, and colleagues in Burn Care & Research. “The impact of burn injuries is not confined to the impact on the individual, as family who become caregivers are also impacted.” Indeed, prior research indicates that spouses and close relatives of burn survivors experience related anxiety, depression, and post-traumatic stress disorder symptoms.
With expectations to provide both acute and longterm care, the caregivers of patients with burns “need access to health information to assist in decision-making and ensure that proper care is being utilized for the burn injuries,” added Dr. Weinstein and team. “The health information needs may be different for caregivers and burn survivors, but this has not previously been investigated. With the increased access to health information via mass media and the Internet, it is important to understand current information needs and how burn survivors and caregivers find health information resources.”
Interviewing Patients With Burn Injuries & Their Caregivers
To identify how patients with burns and their caregivers prefer to access and use health information, identify barriers to obtaining such information, and determine what information is needed by both these populations, Dr. Weinstein and colleagues identified and conducted semi-structured interviews with patients with burn injuries and caregivers of individuals with burn injuries. Participants with burn injuries had an average age of 44.3, 75% were female, 75% were Caucasian, 75% had some college or were college graduates, 67% were employed, and 58% were unmarried or divorced. All patients had health insurance and 67% were in good, very good, or excellent health, with burn injuries that occurred an average of 16.25 years prior. Caregivers had an average age of 49.4, 91% were female, 73% were Caucasian, 73% were married, 64% were employed, 82% had some college or were college graduates, and 91% were in good, very good, or excellent health; among them, 55% were parents, 18% were spouses, 18% were children, and 9% were siblings. Caregivers had an average of 8.7 years caring for a patient with a burn injury.
Interviews were divided into two portions, with the first portion focusing on how participants find information, how easily reliable or reputable information is located, and how they use information focused on addressing burn outcomes (Table). The second portion focused on “the interest in and history of participating as a member of research teams,” explained Dr. Weinstein and colleagues.
Burn Survivor & Caregiver Needs
“Three specific needs were identified: (1) more direction from health professionals in finding health information relevant to burn injuries; (2) more Internet-based access points that connect individuals to appropriate support networks; and (3) more support for long-term consequences of burn injuries, specifically with psychological, social, and other chronic physical issues,” Dr. Weinstein and team wrote.
Participants were divided on whether healthrelated information was easy to find, with those indicating that it was easy having good access to healthcare professionals, Internet access and positive experiences using it, support group participation, or some combination of these. Those who said such information was hard to find identified a lack of available research on long-term effects, individual experiences with burns, and injury progression.
And while both burn survivors and caregivers relied on healthcare professionals for specific information on recovery progression and treatment, as well as validation of information obtained elsewhere, they most commonly searched the Internet for obtaining information. However, they “noted that finding specific information on the [Internet] requires in-depth searching and critical appraisal (Figure),” wrote Dr. Weinstein and colleagues.
Including Patients With Burns & Their Caregivers on Research Teams
“Participants identified various needs in finding relevant health information, thereby highlighting gaps in current literature and the dissemination of current literature,” concluded Dr. Weinstein and team. “One potential way to address these deficiencies is to consider user-centered design principles in developing research, by more directly involving individuals with burn injuries and caregivers as part of the research team.”
