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Qualitative research facilitates an increased understanding of the experiences of people with
TBI, their caregivers, or professionals working with people with TBI from their own unique and personal perspectives. Such information can guide the development of informational materials and questionnaires for epidemiologic studies. Common qualitative research techniques include focus groups and individual
interviews. (See Patton MQ. Qualitative Evaluation and Research Methods (2nd Ed). Newbury Park, CA: Sage Publications, 1990.)
One meeting participant also had experience in conducting in-depth ethnographic, naturalistic studies with children with other health conditions (e.g., a study of children with asthma collected data by allowing them to carry video cameras). Participants recommended
exploring the applicability of these methods to studies of TBI. Research Topics Basic Basic research addresses physiologic responses to brain injury. Meeting participants noted that further studies are needed to:
- Reveal the underlying mechanisms of recovery
- Identify outcomes due to the injury itself vs. those that are secondary (e.g., neurogenic vs. situational depression).
Patterns of Recovery Because recovery after TBI can be lengthy and because the risk of developing secondary conditions changes over time, better information about patterns of recovery from TBI is needed to understand the long-term effects of
TBI. Meeting participants noted that further studies are needed to describe:
- The natural history of recovery from TBI. For example, when are secondary conditions most likely to develop?
- Recovery trajectories. That is, how quickly does recovery occur and in what order are skills regained?
- The later emergence of TBI-related problems especially in children. For example, are infants with TBI more likely to have later learning disabilities, such as trouble with reading or math, or behavior problems that are associated with the
TBI?
Treatment The NIH Consensus Conference on the Rehabilitation of Persons with Traumatic Brain Injury documented the need for improved research on treatment of
TBI, including treatment for children. Meeting participants noted the need for further studies about
- The effectiveness of various treatments and the importance of the intensity level of those treatments
- The effectiveness of educational and behavioral interventions
- The implementation of treatment guidelines – Specific issues include how widely the guidelines are being applied and what effects implementation has on TBI outcomes.
- Personal (or person-centered) outcomes – Personal outcomes are the expectations that people with disabilities have for their lives, including what they expect from the services and supports they receive. Many service providers have adopted personal outcomes as a measure of quality of their services. (The Council on Quality and Leadership in Supports for People with Disabilities, Towson, MD.
410-583-0060)
Costs Few studies have looked at the cost of
TBI, especially among children. Cost data can help focus greater attention on a public health problem such as
TBI. Meeting participants noted that further studies are needed to document:
- The costs of TBI in children, including reduced quality of life, compared with costs for other child health conditions (e.g., asthma, HIV)
- The economic impact of TBI on children, their families, and society.
Issues of Measurement and Data Analysis Among the greatest challenges to conducting high-quality research on outcomes of TBI in children are limitations in existing outcome measures and analytic approaches as well as the lack of standard terminology to describe the outcomes. Meeting participants offered the following recommendations to improve measurement, analysis, and terminology:
- Conduct studies to assess the validity of existing measures for use in follow-up studies (i.e., sensitivity to individual changes over time) and apply improved methods for testing item validity.
- Use new types of measures including cognitive measures for use by school psychologists and applicable to consumers; a global measure of cognitive function that assesses memory; a cognitive screening tool for surveillance; a
TBI-specific outcomes measure; a severity measure for comparing the burden of TBI with that of other conditions; and improved measures of the environment and its relationship to
disability.
- Develop a standard terminology to describe and document service needs and barriers.
- Develop new analytic approaches including application of growth curve analysis to detailed studies of the relationship between development and recovery from
TBI.
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