The feasibility, acceptability, and effectiveness of the multimodal, community-based LoveYourBrain Retreat program for people with traumatic brain injury and caregivers

Abstract

Purpose

To evaluate the feasibility, acceptability, and effectiveness of the LoveYourBrain Retreat program using a pre-post, retrospective, concurrent triangulation mixed methods study.

Materials and methods

A 5-day, multimodal, residential Retreat intervention was designed to improve quality of life among traumatic brain injury (TBI) survivors and caregivers through mindfulness, movement, nutrition, art, and community-building. Eligibility included being a TBI survivor (>2 years post-injury) or caregiver, 18+ years old, independently mobile, able to communicate verbally, and a first-time participant. Self-reported quantitative and qualitative data were collected via electronic surveys pre- and post-retreat, analyzed separately, then combined. Paired t-tests assessed mean differences in scores on Quality of Life After Brain Injury Overall scale (QOLIBRI-OS) and NIH TBI/Neuro-QOL Resilience, Cognition, Positive Affect/Wellbeing, and Emotional/Behavioral Dysregulation scales. We assessed feasibility using sample characteristics and program frequency and retention, and acceptability using quality ratings. Content analysis explored perceived benefits and improvements.

Results

68 People—53 with TBI and 15 caregivers—participated in one of three LoveYourBrain Retreats. Significant improvements were found in QOLIBRI-OS (6.91, 95%CI 1.88–11.94), Resilience (2.14, 95%CI 0.50–3.78), Cognition (2.81, 95%CI 0.79–4.83), and Emotional/Behavioral Dysregulation (2.84, 95%CI 0.14–5.54) among TBI survivors (n = 41). Mean satisfaction was 9.6/10 (SD = 0.64). Content analysis revealed community connection, reframing TBI experience, self-regulation, and self-care themes.

Conclusions

The LoveYourBrain Retreat is feasible, acceptable, and may be effective complementary rehabilitation to improve QOL among TBI survivors.

Implications for Rehabilitation

• Ongoing, holistic rehabilitation services are critical to quality of life for people with chronic traumatic brain injury (TBI).

• Residential retreats are a type of holistic, multimodal, community-based rehabilitation.

• LoveYourBrain Retreats improved quality of life, resilience, cognition, and emotional dysregulation among people with TBI.

• The integration of community connection, reframing TBI experience, self-regulation, and self-care may support adjustment to TBI.

Keywords:

• Traumatic brain injury
• caregiver
• resilience
• retreat
• community-based rehabilitation
• quality of life

Acknowledgements

We would like to acknowledge Alyssa Talbot for her support with data preparation. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Author contributions

Kyla Z Donnelly: conceptualization; data curation; investigation; methodology; project administration; software; supervision; writing – original draft; writing – review & editing. Jenna Nelson: software; formal analysis, writing – original draft; project administration. Shilo Zeller: formal analysis; writing – original draft. Amber Davey: project administration; writing – original draft. Drew Davis: writing – original draft.

Disclosure statement

No potential conflict of interest was reported by the author(s). All authors have reviewed the ICMJE uniform disclosure form and declare: KZD is employed by the LoveYourBrain Foundation, a non-profit, for whom she led the design of the curriculum for the LoveYourBrain Retreat program. KZD is married to the Executive Director of the LoveYourBrain Foundation. JN, SZ, AD, and DD have no relationships or activities that could appear to have influenced the submitted work.

Notes

1 30 people participated in this Retreat, however, 15 people were second-time participants so were excluded from this study.