Information needs of the traumatic brain injury patient's family members regarding the consequences of the injury and associated perception of physical, cognitive, emotional and quality of life changes

Abstract

We studied physical, cognitive, emotional and quality-of-life changes noted by relatives in a sample of 65 severely traumatic brain injured (TBI) patients several years after injury. The purpose of the present study was to evaluate the families perception of these changes and their need for information concerning the consequences of TBI. Our results indicated that the perceived changes in behavioural and affective symptoms and in the patient's quality of life were most closely associated with the need expressed by family members for information concerning, TBI. We also found that family relationships were especially affected by problems in the behavioral and affective domain, and the decrease in patient quality of life, as reported by relatives. These findings underline the importance of providing the relatives of TBI patients with information about the consequences of the injury with particular emphasis on behavioural and emotional disturbances, in order that they might cope better with these problems.

Perceived social support and locus of control after a traumatic brain injury (TBI)

“…The physical and functional symptoms diminish during the first two post-trauma years, but the social and psychological difficulties tend to persist over time [2,3]. Current research has repeatedly demonstrated the importance of the cognitive, behavioural and emotional sequelae of TBI [4][5][6][7][8][9]. However, in the Sykes-Horn et al [10] study, only 5% of TBI patients have taken part in formal rehabilitation.…”

Family needs in the chronic phase after severe brain injury in Denmark

“…As measurement the FNQ was designed to survey information about which needs were perceived as important and whether or not these were met [26]. As far as the authors know, most of the previous studies were done in the US and only two studies have been done in Europe, one conducted in Spain [27] and one in the UK [19]. No study has been performed in Denmark or any other of the Nordic countries.…”

Families of patients with polytrauma: Understanding the evidence and charting a new research agenda

“…Aitken et al suggest an exit interview and a 6-week postdischarge follow-up call to capture information needs as they arise [26]. Because caregiver distress and worsening family functioning are often associated with behavioral and affective symptoms of TBI, information should possibly be provided regularly for several years postinjury [31].…”

“…Content areas in qualitative studies include clear, timely, and accurate information on diagnosis; treatment plans; prognosis and course of recovery; best-and worstcase scenarios; reasons for and results of diagnostic studies; specific hospital equipment use; medications; rationale for treatments; and possible patient behavior changes [26][27][28]. Caregivers also want to understand the purpose of rehabilitation [29], how rehabilitation facilitates recovery [30], and the effect that caring for a patient with TBI has on family relationships [31]. Information on community support, financial assistance, and self-care is needed as well [29,[32][33].…”