Abstract
Purpose
This study explores gains in function, measured by the Mayo-Portland Adaptability Inventory-4 (MPAI-4) and qualitative interviews, of individuals who participated in a Post Hospital Interdisciplinary Brain Injury Rehabilitation – Residential (PHIDBIR-R) program as part of their recovery from brain injury.
Methods
The study uses a mixed methods design to identify correlates and explore pathways to functional recovery. Change scores from the MPAI-4 were derived to identify participants with greatest functional improvement. Qualitative interviews were employed to understand PHIDBIR-R program constructs associated with functional improvement. MPAI-4 data were derived from a bank of 135 PHIDBIR-R programs in 22 states. Participants were adults who sustained a brain injury and participated in a PHIDBIR-R program. 57 participants were identified as highest scorers; 10 completed semi-structured interviews.
Results
Data were analyzed using constant comparison procedures and rigorous credibility techniques. Thirteen themes within four categories (support, therapies, continuum of care, environment of care) emerged, reflecting participants’ understanding of constructs contributing to positive outcomes.
Conclusions
The results provided a cogent framework for program development, stakeholder program selection, and advocate and legislator considerations.
INTRODUCTION
Traumatic brain injury (TBI) is an alteration in brain function or other evidence of brain pathology caused by an external force. These injuries manifest as mild, moderate, or severe impairments to one or more areas, such as cognition, communication, memory, concentration, reasoning, physical functions, and psychosocial behavior [1].
The consequences of brain injuries are numerous with the potential to create life-long challenges for survivors and their families. Stories involving TBI permeate the news: the high-school athlete concussed in a football game, the soldier wounded in an explosive blast, and the teenager injured in a car accident. In these scenarios, futures transition from navigating routine activities to struggling to function.
A formidable fact surrounding these circumstances is that brain injury does not discriminate – it can happen to any person, at any time. Each year in the United States, 1.7 million TBIs occur either as an isolated injury or in conjunction with other injuries or illnesses. In the U.S., TBI is a contributing factor to nearly a third (30.5%) of all injury-related deaths [2] and figures indicate that 5.3 million people live with a TBI-related disability [3]. Annually, TBIs cost Americans $76.5 billion in medical care, rehabilitation, and loss of work [4,5].
Other etiologies of brain injury further elevate these numbers. The annual incidence of stroke is 795,000 [6]. Further, the annual estimate of brain tumors is 64,530, along with 27,000 aneurysms, and 20,000 viral encephalitis cases [6–8]. No national data are available for anoxic brain injury and other subtypes [1]. When all types of brain injury are aggregated, the annual occurrence in the U.S. approaches 8.5 million.
In addition, brain injuries reach beyond the individual who has sustained the TBI, affecting the lives of loved ones. Grief-stricken families witness trauma, entering a reality in which survival is the daily hope. Improvements in medical care have improved life expectancy, yielding a steady increase in the number of older adults living with a brain injury [9,10].
Once evident that an individual will survive the brain injury, goals focus on regaining lost function or rehabilitation. Just as each individual is unique, so is each recovery. Families commonly observe physical disabilities, impaired learning, and personality changes post injury. Nearly 20 years ago, the National Institutes of Health held a conference wherein an expert panel recommended that patients with TBI receive an individualized rehabilitation program based on the patient’s unique strengths and capacities, and adapted to needs over time. The group further advised that persons with moderate to severe brain injuries have individually tailored treatment programs that draw on the coordinated skills of various specialists [11].
Past research of rehabilitation following brain injury has often focused on the evaluation of a specific treatment modality or of a program’s efficacy as quantified by outcomes measurements. Many studies have sought to determine if rehabilitation has been successful, perhaps to the detriment of learning how rehabilitation has been efficacious. Studying how rehabilitation works over time is important in learning more about the individual and family experience while advancing an understanding of measured functional improvements.
Current research explores the therapies and interventions that facilitate long-term recovery of function. Individuals follow diverse recovery paths because there are a wide variety of options for rehabilitation [12]. This study focuses on Post-Hospital Inter-Disciplinary Brain Injury Rehabilitation – Residential (PHIDBIR-R) programs, which are 24-hour, 7-days a week rehabilitative care programs delivered in non-hospital, home-like, community-based environments. PHIDBIR-R programs strive to implement effective therapeutic interventions, supports, and services that maximize functional gains; these programs are judged on their ability to produce improvements in function [13].
While research efforts have focused on demonstrating positive outcomes, the identification of attributes that contribute to how improvement happens is largely untouched [13–18]. Although several PHIDBIR-R programs report positive outcomes [19,20], the empirical evidence is limited and studies habitually focus on quantitative analysis. Including a qualitative component may provide insight into the PHIDBIR-R, eludicating how these experiences advance an understanding of functional improvements. […]
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TBI Rehabilitation 