People Caring for Injury Survivors May Benefit From User-Friendly Information and Support Groups

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Over 65 million American adults act as caregivers to a person with a medical condition, according to the National Alliance for Caregiving. Caregivers are often spouses, parents, children, or friends of a person with a health condition or disability, and they may provide a great deal of unpaid assistance with activities of daily living, housing, transportation, or medical needs. People with burn injuries, spinal cord injuries (SCI), and traumatic brain injuries (TBI) may experience long-term disabilities and may require caregiving assistance. Because these injuries often occur suddenly, caregivers may be thrust into the caregiving role without much knowledge about these injuries or how to provide the best possible care. They may benefit from clear, reliable information about the medical and rehabilitation needs of individuals with these injuries. In a recent NIDILRR-funded study, researchers asked caregivers of people with burn injuries, SCI, and TBI to describe how they obtained injury-related information, what kinds of information they looked for, what challenges they faced in getting good information, and what they would want to see in an ideal informational resource for caregivers.

Researchers at the Model System Knowledge Translation Center interviewed 32 adults who were primary caregivers for a person with a burn injury, SCI, or TBI. The participants had been caregivers for an average of seven years, and most provided care for an adult. Interviews were conducted over the phone. During the interviews, the researchers asked the caregivers what sources they typically used to gather information related to burn injury, SCI, or TBI; what kinds of information they were looking for; what challenges they experienced when trying to gather useful information; and what suggestions they had for designing a caregiver informational resource.

When the researchers looked at the interview responses, they found that:

  • Most caregivers said that they preferred to receive medical information about burn injury, SCI, or TBI from doctors and other health professionals. However, many reported looking for information on the Internet, through search engines such as Google, or on medical websites. They often reported looking at multiple articles to compare them and try to determine what information was most accurate.
  • Support groups and support organizations also offered important sources of information. Some caregivers said that they looked for people who had similar experiences, such as other caregivers or injury survivors, to ask questions and obtain support.
  • Caregivers sought information directly related to supporting the person they were caring for. Among the topics were treatment, rehabilitation, medication, and long-term care needs.
  • When asked about challenges related to getting information, several caregivers said that simply finding the information, understanding it, or figuring out which information was credible, was a challenge. Others cited medical or insurance bureaucracy, or medical staff who lacked knowledge about the specific injury.

When asked how they would design an ideal informational resource, caregivers suggested a website that would offer a clearinghouse of resources on all aspects of caregiving in one place. The caregivers suggested that such a website should include resources for networking with other caregivers and injury survivors; educational articles about how to provide care; and medical information about the specific injuries. In addition to the Web-based resources, the caregivers also recommended in-person resources, including a support group for caregivers while their loved one is still in the hospital recovering from the injury, and professional training on the medical aspects of caregiving. Connecting virtually by chat was also recommended so caregivers could interact with someone knowledgeable about the topic.

The authors noted that the caregivers in this study used similar information-gathering strategies as caregivers in previous studies whose loved ones have other conditions and disabilities, such as aging or dementia. While most respondents may have preferred getting information from a health professional, the authors noted that many turned to the Internet instead, possibly because it was easier to access than talking to a doctor. Individuals providing care for a person with a burn injury, SCI, or TBI may have trouble locating health information that is trustworthy, relevant, and easy to understand. These caregivers may benefit from a comprehensive online resource that combines credible medical information with access to health professionals as well as other caregivers sharing similar experiences. Health professionals may also want to develop training programs to help new caregivers learn to evaluate the quality of health information they receive.

To Learn More

The Model Systems Knowledge Translation Center offers a large selection of educational materials on SCI, TBI, and burn injury for both survivors and caregivers. Articles, factsheets, videos, and hot topic modules are developed with leading researchers from the Model System Centers.

The Family Caregiver Alliance is a support organization and central resource for caregivers across the US.

To Learn More About This Study

Coffey, N.T., et al. (2017) 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. Journal of Medical Internet Research, 19(5). This article is available from the NARIC collection under Accession Number J76320.

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