Interpreting responsiveness in persons with severe traumatic brain injury: Beliefs in families and quantitative evaluations

Author(s): DiPasquale, M., Blitz, C. L., Whyte, J.

Journal/Book: J Head Trauma Rehabil. 1997; 12: 7201 Mckinney Circle, Frederick, MD 21701. Aspen Publ Inc. 52-69.

Abstract: Objective: To describe beliefs in families of minimally conscious or vegetative patients about the functional abilities of their family member (the patient) and to better understand the relationship between family beliefs and the patient's objectively measured functional status, Design: Qualitative pilot study using audiotaped, semistructured interviews with family members at the beginning of the patient's admission to a brain injury rehabilitation unit (T1) and prior to discharge (T2). Setting: An inpatient brain injury rehabilitation unit at a community-based rehabilitation hospital. Participants: Five families of patients believed to be vegetative or minimally conscious admitted for evaluation between July 1993 and June 1996. Methods: The content of interviews was analyzed with qualitative techniques. Beliefs and evidence cited by the family were recorded and compared with medical injury data and results from single-subject evaluation of sensory and cognitive capacities. Relevant social and demographic data and observations of clinical team discussions about the patients were also used in the analysis of each case. Results: Most observed behaviors, movements, or other cues were given meaning by family members, regardless of the results of objective assessment. Recurrent themes at T1 were: 1) relief that the patient was alive, 2) hope for a full recovery, 3) confusion about the nature and impact of the brain injury, 4) belief that the patient was more functional than he or she appeared to be, and 5) failures to respond were due to functions other than basic limitations of consciousness. Recurrent themes at T2 were: 1) anxiety about the future and impact on the caregiver, 2) continued hope for full recovery, 3) fear about the plateauing of the patient's performance, and 4) coexistence of hope and worry. Conclusions: Beliefs of family members about the functional capacities of persons who are vegetative or minimally conscious are ever present in the evaluation process of these patients. It is important that beliefs be identified and respectfully addressed through education and counseling and that the interpretation of behaviors observed by family members be incorporated into the objective assessment of the patient.

Note: Article Phipps EJ, Albert Einstein Med Ctr, No Div, Dept Med, 5501 Old York Rd, Philadelphia,PA 19141 USA

Zurück | Weiter