Soy diferente: a qualitative study on the perceptions of recovery following traumatic brain injury among Spanish-speaking U.S. immigrants

Abstract

Purpose

To explore the impact of traumatic brain injury (TBI) on the quality of life (QoL) and self-concept of Spanish-speaking U.S. Hispanic immigrants with TBI.

Materials and methods

A prospective, qualitative study conducted in a county level I trauma center and community. Semi-structured interviews on QoL and self-concept following TBI were conducted with 24 Spanish-speaking U.S. Hispanic immigrants with TBI living in the community at least 6 months following injury.

Results

Perceived facilitators of QoL included faith, hopefulness in recovery, empathy for others, and support from others. Perceived barriers to QoL mentioned were symptoms/consequences of injury, employment/financial changes, loss of independence, fear/uncertainty, stigma/shame, lack of medical care, and decreased social integration. Participants described their self-concept after TBI as either a maintained self or loss of self. Those who viewed themselves differently reported physical and emotional changes, gender role conflict, loss of self-worth, and total loss due to the TBI.

Conclusions

Spanish-speaking U.S. Hispanic immigrants held a strong faith and positive outlook after TBI in spite of the significant barriers to recovery. A need exists for programs to support creatively the recovery of Spanish-speaking U.S. Hispanic immigrants with limited access to care and resources.

IMPLICATIONS FOR REHABILITATION

• Spanish-speaking U.S. Hispanic immigrants may experience significant barriers to care following traumatic brain injury (TBI), such as access to rehabilitation services and follow-up care.

• Rehabilitation professionals should consider the importance of faith and encourage positive thinking and social support when working with Spanish-speaking U.S. Hispanic immigrants on how to cope with TBI-related challenges.

• Access to Spanish-speaking rehabilitation professionals, translators and Spanish language educational materials could help reduce language-related barriers to recovery among Spanish-speaking U.S. immigrants with TBI.

• Rehabilitation facilities should develop partnerships with community-based organizations serving the uninsured or underinsured to address the access to rehabilitation and medical needs of Spanish-speaking U.S. immigrants with TBI.

Keywords:

• Emigrants and immigrants
• Hispanic Americans
• quality of life
• self concept
• social integration
• traumatic brain injuries

Acknowledgments

The authors acknowledge Sarah Toombs Smith, PhD, ELS for editing this manuscript. The authors also recognize and thank, Roxann Grover O’Day, MA, for the design of the thematic framework developed from this work.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Grant [#H133B03117] from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) for the Rehabilitation Research and Training Center on Community Integration of Persons with Traumatic Brain Injury. The contents of this publication were developed under grants from NIDLRR [grant numbers H133B031117, 90DPTB0016, 90DP0028, 90RT5007]; National Institute on Aging [NIA grant numbers K01AG065492; P30AG024832; P30AG059301], and the National Institute on Minority Health and Health Disparities [NIMHD contract number L60 MD009326]. The views, opinions, and/or findings contained in this article are those of the authors and should not be construed as an official institutional position or any other federal agency, policy, or decision unless so designated by other official documentation. The contents of this publication do not necessarily represent the policy of the NIDILRR, ACL, HHS, or the National Institutes of Health, and you should not assume endorsement by the Federal Government. NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).