A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
A traumatic brain injury (TBI) is brain damage from an external force, such as a fall or a car accident. After a TBI, people may develop a variety of disabilities, such as impairments in their memory or thinking ability, physical mobility, or ability to manage emotions. People with TBI may experience changes in their employment status or important relationships after injury. Hispanic people with TBI, especially recent immigrants to the United States, may face additional challenges. Past research has found that Hispanic Americans are less likely than non-Hispanic white Americans to return to work after TBI, and they have also reported lower levels of community integration after injury. Spanish-speaking immigrants may have difficulty accessing high-quality rehabilitation services if they do not have health insurance or if they do not speak English. In addition, discrimination and fears of deportation can also limit opportunities for these individuals to receive supports after TBI. In a NIDILRR-funded study, researchers asked Spanish-speaking immigrants with recent TBI to describe their quality of life (QOL) and self-concept after injury. They wanted to find out what factors helped or hindered QOL for these individuals. They also wanted to find out how the TBI impacted their sense of self.
Researchers at the Rehabilitation Research and Training Center on Community Integration of Persons with TBI interviewed 24 Spanish-speaking immigrants with TBI. The participants had experienced their TBI for 2 years or less. They had been living in the United States for an average of 10.5 years, and most had a household income below the poverty line. The interviews were conducted in Spanish. The researchers asked the participants to describe their quality of life after their injury and what factors they thought helped or hindered their QOL. The researchers also asked the participants to explain how they saw themselves after injury, and whether they saw themselves as essentially the same or as different compared to before injury.
Three-fourths of the participants described their TBI as having a meaningful impact on their QOL. The participants described several factors that helped improve their QOL after injury. These included:
- Faith and spirituality: Most of the participants were practicing Catholics who described their faith in God as giving them strength in overcoming challenges.
- Positive thinking: The participants said that having a positive outlook and hope for the future played an important role in improving their QOL after injury.
- Empathy and social support: The participants valued connection with family, friends, and community members, and both giving and receiving support. They often derived joy and purpose from helping others.
The participants also identified a variety of challenges they experienced after injury that decreased their QOL. These included:
- Physical, mental, and emotional changes after TBI: These included decreased mobility, memory changes, and trouble controlling feelings.
- Financial changes: While 20 of the 24 participants were working before their TBI, only 9 of them returned to work in the first 6 months after injury, while 1 enrolled in college. The other 10 participants remained unemployed and expressed concerns about the financial impacts of unemployment, especially if they had been sending money to support their families in their home country before injury.
- Trouble accessing healthcare: Most of the participants did not have health insurance and needed to pay for procedures out of pocket. Language barriers also made it difficult for the Spanish-speaking participants to get needed healthcare or rehabilitation services.
- Fears or uncertainties about the future: Due to physical, mental, emotional, and financial changes, the participants expressed uncertainty about their future well-being which reduced their QOL in the present.
- Loss of independence and social integration: Some of the participants described needing to depend upon others for care or losing the ability to participate in community activities after injury.
When the researchers asked the participants whether or not their sense of self had changed after TBI, most of the participants (15 of 24, or 63%) said that they felt like a different person after injury. Specifically, these participants described a loss of self after injury, which ranged from a small loss to a total loss of self or self-worth. This loss was perceived as related to physical and emotional changes as well as loss of valued social roles, such as going from provider to dependent. The other 9 participants, in contrast, reported that they still felt like the same person after injury as before.
The authors noted that although TBI can lead to major life changes for all individuals, Spanish-speaking immigrants with TBI may face additional challenges such as inadequate access to rehabilitation services, language barriers with providers, or concerns about deportation. Rehabilitation providers may wish to partner with community organizations serving Spanish-speaking immigrants to provide supports such as Spanish-language written materials, translators, and access to professionals who speak Spanish in order to optimize access for Spanish-speaking immigrants. In addition, rehabilitation providers may wish to prioritize values of faith, positive thinking, and social support when serving Hispanic people with TBI.
To Learn More
The Model Systems Knowledge Translation Center offers a wealth of information on TBI and its short- and long-term effects, including factsheets, videos, infocomics, and hot topic modules. Infocomics and factsheets are available in Spanish.
Brainline.org offers information, articles, personal stories, and expert question and answer articles on brain injury. Informational articles are available in English and Spanish.
To Learn More About this Study
Pappadis, MR, Sander, AM, Struchen, AM, and Kurtz, DM (2020). Soy diferente: a qualitative study on the perceptions of recovery following traumatic brain injury among Spanish-speaking U.S. immigrants. Disability and Rehabilitation. This article is available from the NARIC collection under Accession Number J85027.