Finding your way with mild TBI: Introduction

Finding your way with mild TBI

The difficulties with diagnosis and the uncertainty about how long recovery will take create numerous difficulties for people dealing with mild TBI, especially for those for whom symptoms don't subside within a few days or weeks.

The nature and degree of injury to the brain can vary significantly from one person to another. While most make a full recovery some do not.

Some people's symptoms subside within 48 hours. Other have symptoms persisting greater than a couple of weeks; and these require careful assessment and reassessment.

Some people's symptoms last months - post concussion syndrome.

The majority of people with post concussion syndrome recover completely in 3 to 6 months.

Some people do not fully recover and have life-time impairments.

Learning from others

People with mild TBI whose symptoms didn't clear up within a few months and specialists clinicians who work with these people and hear about what has happened for them before they get a specialist's assessment can tall us a lot about the best way to work with mild TBI.

This section Finding your way with mild TBI is based on the following peoples experiences in combination with Health guidelines:

Eighteen Experiences

Brain Injury Australia identified 18 people with lived experience of concussion and mTBI and interviewed them about their experiences. There experiences and what they said provide the structure for this section. Their experiences and what they said are included in the TABS "Peoples Voices" and "Eighteen Experiences".

University students

Five university students in the US were interviewed in depth about their experiences at university. They experienced significant life changes including cognitive changes, physical changes, social-emotional changes, changes their academic experience etc.

Their experiences are included in the TAB "Peoples Voices".

Clinicians' voices

Rehabilitation professionals who had direct experience working specifically with people diagnosed with mTBI were asked about their experience of working with these people. Five themes emerged:

  • Prevalence of Mis-diagnosis and Misinformation
  • Unpredictability of Prognosis
  • Complexity of Symptoms
  • Impaired Self-Awareness.
  • Invisible Nature of Injury.

Their reflections are included in the TAB "Clinicians' Voices".

Health Guidelines

Health guidelines have been used to identify good practice.

 

 

 

 

Peoples experiences

Brain Injury Australia has identified 18 people with lived experience of concussion and mTBI and interviewed them about their experiences.

One participant reported their own lived experience as the parent of a young child with mTBI (4 years old). 11 participants were female, and 7 were male. Adult participants ranged in age from 21-61 years. While most participants were from metropolitan areas, six were from rural and regional areas and highlighted the particular and significant challenges for those living outside the major cities. Table 2-1 provides an overview of participant demographic details.

Participants described that they had sustained their injuries through a range of ways, including falls, car and bicycle accidents, sporting accidents and items falling on their heads. Five participants reported that they had sustained more than one injury. All participants reported that they were experiencing at least one ongoing symptom related to their injury. Commonly, these symptoms spanned several domains, and included cognitive, behavioural, physical and psychosocial changes. 

Interview data reflected the challenges experienced by participants in accessing timely, specialist and evidence-based information about their injury and appropriate support. Participants’ experiences reflected a clear distinction between those who had been able to successfully navigate the relevant service sectors (medical, health, disability) in order to access the support they required and those who had not been able to do so. This distinction was also evident in participants’ description of the long-term impacts of the injury in many areas of their life.

 

 

 

 

University Students

This study explored university life experienced by students with mild traumatic brain injury (MTBI). 

Previous research about such students has focused on topics including study strategy use, access of support services, and insights from caregivers or instructors.  However, little attention has been paid to the perceptions of students themselves.

Wwe asked five university students with MTBI to discuss their university experiences, factors mediating those experiences, and perceived similarities and differences between themselves and other college students with and without disabilities.  Each interview lasted approximately one hour and used a semi-structured interview protocol. 

Results suggested that the students experienced cognitive, physical, and social-emotional changes that altered their academic experiences, necessitated academic accommodations, and required self-advocacy skills.  In addition, family and teacher support, self-determination, and academic accommodations positively affected students’ college experiences, whereas factors such as injury invisibility, coursework difficulty, and teacher misconceptions or lack of support had negative effects. 

The findings highlight the need for additional education and support for university students with MTBI and the educators who serve them.

Invisible Injuries: The Experiences of College Students with Histories of Mild Traumatic Brain Injury
Carrie Childers Karen Hux2

Marshall University; 2 University of Nebraska-Lincoln

 

Clinicians' voices**

This study was designed to gather information from rehabilitation professionals who had direct experience working specifically with patients diagnosed with mTBI.

Mild traumatic brain injury (mTBI), also known as concussion, is an emerging public health issue in the United States (and Australia*).

The estimated annual 1.2 million individuals (in the US*) who sustain this injury face a range of cognitive, psychological, and physical consequences for which rehabilitation protocols are being developed and implemented.

On the frontlines of this developing area of rehabilitation work are professionals in a range of therapeutic settings whose practice wisdom has yet to be shared in the professional literature. This qualitative study aimed to fill this gap by exploring the experiences and insights of rehabilitation professionals serving mTBI patients in outpatient, civilian settings. An analysis of the qualitative data revealed five themes common in mTBI work, providing an in-depth look at this often challenging field of rehabilitation.

This study was designed to gather information from rehabilitation professionals who had direct experience working specifically with patients diagnosed with mTBI.

We conducted in-depth, semistructured interviews; either in person or via telephone, which lasted between 45 and 90 minutes each. Following a systematic process of informed and voluntary consent, we asked participants to describe their work with mTBI patients, beginning with the inquiry: “I’d like to hear about your experiences working with people with mild traumatic brain injuries.” To facilitate the data analysis process, all interviews were digitally recorded using either a handheld digital recorder or a secure, web-based conferencing program. Recordings were transcribed by a professional organization using encryption software.

Fifteen licensed professionals employed in civilian (nonmilitary), outpatient brain injury rehabilitation positions, including physical, vestibular, cognitive, occupational, speech, and neuropsychology, were interviewed.

Participants included 4 men and 11 women who worked in rehabilitation settings in the Mid-Atlantic region of the United States, with an average of 14 years in the field, ranging from 2 to 23 years of experience. Many worked in settings that require them to see a range of patients, although none spent less than one quarter of their time with individuals diagnosed with mTBI.

The final analysis resulted in five major themes:

  • Prevalence of Mis-diagnosis and Misinformation
  • Unpredictability of Prognosis
  • Complexity of Symptoms
  • Impaired Self-Awareness.
  • Invisible Nature of Injury.

** Edited from Abstract.

Research Article
Working with Mild Traumatic Brain Injury: Voices from the Field

Page Walker Buck,1 Rebecca G. Laster,2 Jocelyn Spencer Sagrati,3 and Rachel Shapiro Kirzner4

Guidelines

Health guidelines including:

Adult Trauma Clinical Practice Guidelines, Initial Management of Closed Head Injury in Adults, NSW Health