Uncovering the Experiences of Adolescents After Suffering Concussions
by Romita Choudhury on behalf of PaCER Interns Ash Kolstad, Gina Samuels, Mark Tadeja
as published in the PERG Fall/Winter newsletter 2017
Concussions are a growing health epidemic among youth. Current concussion research has produced a great deal of knowledge about adolescent experiences of treatment and recovery; however, these studies have focused largely on clinical information and analysis provided by healthcare providers, caregivers, sociologists, and psychologists. In order to understand the broader and longer-term impact of concussion on young people, it is important to understand the experiences as represented by the patients themselves—in their voice and language. How, for example, do they see the challenges of returning to school, work, sports, and social life in general? What concerns them most? What do they struggle with in their everyday life? What resources do they draw upon? Where do they see themselves in the journey to recovery?
The PaCER interns—Ash, Mark, and Gina--undertook a study to explore the experiences of adolescents (ages 14 to 20) who have undergone treatment for concussion or what is called mild traumatic brain injury (mTBI). The internship was sponsored by the Integrated Concussion Research Program led by Dr. Keith Owen Yeates, Department of Psychology, at the University of Calgary.
The team faced several challenges. Being undergraduate students with a full course load, Ash and Mark often struggled with the demands of schoolwork and an intensive patient engagement research program. Gina was preparing for her Medical Licensing Certification. In addition, reaching and finding participants was immensely difficult. Depending on coaches and parents and meeting the requirements for informed consent made the process of recruitment somewhat formal and distanced. The interns worked hard, trying to recruit patients through their friends, family, clinics, and sports clubs. Having had severe to mild concussions themselves, they were able to create a space in which the participants could speak of their experiences in a way they had not been able to speak before. In fact, we were sometimes overwhelmed by the depth and candour with which the young people described their experiences.
The group listened to patient narratives and were guided in analyzing with care and carefulness what recovery actually meant to patients. In the process, not only were they able to highlight what patients have been able to achieve, but also where some of the gaps lie between the medical pathway and the patients’ journey, what is visible and recognized and what remains unspoken and undervalued in the treatment process.
Some of the findings from this study were presented by the group at the SPOR Summer Institute in Edmonton on June 27, 2017.
We hope to be able to develop this work further in order to broaden its impact and improve care for the many young people who are living with the physical, intellectual, and emotional effects of concussion and are trying hard to lead fuller and more complete lives.
For more information, contact Romita.firstname.lastname@example.org
In order to understand the broader and longer-term impact of concussion on young people, it is important to understand the experiences as represented by the patients themselves
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