Abstract:

An acquired brain injury (ABI) is a complex medical condition defined as a damage to the brain, which occurs after birth and is not related to a congenital or a degenerative disease. Causes of ABI can be broadly categorized into traumatic, including all injuries resulting from an external mechanical force, such as rapid acceleration, impact, etc, and non-traumatic, including cerebrovascular accidents (stroke), either hemorrhagic or ischemic, tumor, vascular malformations, and cerebral infections. Traumatic brain injury has a global incidence rate of 106 per 100,000 cases, which leads to an estimated 10 million people affected annually. Stroke statistics range from 76 to 119 per 100,000 population, which leads to 15 million people suffering a stroke each year. Consequences of ABI may include a heterogenic combination of motor, cognitive, behavioral, and/or emotional deficits that can also vary in severity, which can affect daily functioning and independence.

Given the sudden nature of ABI, patients and over all caregivers are forced to face the new situation with a general lack of information about the medical condition. Information about the diagnosis, prognosis, and treatment is usually provided in short interviews by the medical staff, which may result insufficient to resolve all the existing doubts and be difficult to understand by people unfamiliar to the pathology.

Although ICTs can provide a worldwide instantaneous resource of information, search of lacking information in external sources of unknown reliability may lead to misleading information that can lead to false expectations about the medical progress.

We hypothesize, however, that ICTs can be successfully used to provide trustworthy information about ABI, and that this information can ameliorate the burden of care in terms of anxiety and self-efficacy.

The objective of this study was threefold. First, to determine the information needs of caregivers of people with ABI as well as their use of ICTs when looking for ABI-related information. Second, to develop an educational mobile application about ABI specially designed for caregivers and relatives. Finally, to determine the efficacy of the app to reduce anxiety and increase self-efficacy in caregivers of people with ABI.

A final sample of 116 caregivers completed a survey about their information needs and use of ICTs for ABI-related searches. A total of 84.21% of them visited the internet to retrieve information about ABI. More than half of them (58%) searched for webpages with information about specific topics of the pathology and almost all of them (98.2%) used their smartphone for that purpose. Near two thirds of the participants (68.8%) would like to receive recommendations about different aspects of ABI. In addition, 10 caregivers freely used the developed application with customized information to each particular case during 12 weeks, within a formative, informative, and psychological program for relatives and caregivers. These participants were assessed before and after using the app with the Generalised Anxiety Disorder Assessment and the Revised Scale for Caregiving Self-Efficacy. The use of the app remarkable decreased the anxiety and increased their self-perception of efficacy of care.

This study highlights the increasing inclusion of ICTs in healthcare. These tools, when combined with reliable psychoeducational content, might help to improve anxiety and self-efficacy of caregivers.

Keywords:

Acquired brain injury, traumatic brain injury, stroke, caregivers, psycho-pedagogy, smartphone.