Health, wellness, and safety concerns of persons with moderate-to-severe traumatic brain injury and their family caregivers: a qualitative content analysis

Abstract

Background

Persons with moderate-to-severe traumatic brain injury (TBI) face issues with health, wellness, and safety that affect their ability to independently manage their care, even for individuals who are ≥75% independent in activities of daily living. These issues often lead to increased family involvement in managing the person’s condition after discharge home.

Purpose

We explored health, wellness, and safety concerns after discharge home from inpatient rehabilitation from the perspectives of persons with TBI who are ≥75% independent in activities of daily living and their family caregivers.

Materials and methods

We interviewed 27 persons with TBI and family caregivers and used conventional content analysis to analyse the data.

Results

Seven themes related to health, wellness, and safety encompassed participants’ experience. Health themes included: (1) attempting to manage medications and (2) navigating mental health difficulties. Wellness themes included: (1) working to stay physically active, (2) dealing with sleep and sleeplessness, and (3) adjusting to changing social relationships. Safety themes were: (1) addressing mobility challenges and (2) compensating for complications with cognitive functioning.

Conclusions

Findings can guide the development of tools, supports, and resources to promote health, wellness, and safety of persons with TBI as they recover after discharge home.

Implications for rehabilitation

• Findings on numerous concerns related to health, wellness, and safety suggest the need for implementation or development and testing of tools, supports, and resources to promote health, wellness, and safety of persons with traumatic brain injury as they recover after discharge home.

• Our findings can be used to educate healthcare providers and increase awareness of the nuanced challenges patients and families face after discharge home.

• Findings can also be used by providers to educate patients and families on realistic expectations for life after discharge.

Keywords:

• Family caregiver
• health
• person
• traumatic brain injury
• safety
• wellness

Acknowledgements

We would like to thank Shepherd Center providers and staff for assisting with recruitment.

Disclosure statement

The authors report no declaration of interest.

Additional information

Funding

This research was supported by the National Institute for Disability, Independent Living, and Rehabilitation Research, Rehabilitation Engineering Research Center (PI, F. DeRuyter) (Grant #90RE5023-01–00).