Brain Injury, February 2010; 24(2): 81–88 Emotional distress and quality of life in relatives of patients with severe brain injury: The first month after injury ANNE NORUP 1 , LARS SIERT 1 , & ERIK LYKKE MORTENSEN 2 1 Department of Neurorehabilitation, Traumatic Brain Injury Unit, Copenhagen University Hospital, Glostrup, Denmark and 2 Institute of Public Health and Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark (Received 12 May 2009; revised 4 November 2009; accepted 14 November 2009) Abstract Primary objective: To investigate emotional distress and quality of life in a sample of Danish relatives of patients with severe brain injury at admission to intensive rehabilitation in the sub-acute phase. Research design: Clinical convenience sample. Methods and procedures: Participants included 31 primary relatives of patients with severe brain injury. The participants were recruited at admission to Traumatic Brain Injury Unit, Copenhagen University Hospital, Glostrup. All relatives completed the depression and anxiety scales from SCL-90-R (Symptom Checklist) and the Role Emotional, Social Function, Mental Health and Vitality scale of the SF-36  36 days after injury. Data concerning severity of injury, the patients’ level of consciousness and function was also collected. Main outcome and results: The participants had significantly lower scores on all quality of life scales (p50.01) and significantly more symptoms of anxiety (p50.01) and depression (p50.01) than normal reference populations. Correlations were found between the patients’ condition and the level of anxiety and depression in relatives. Conclusions: The majority of relatives had severely impaired quality of life and symptoms of anxiety and depression at the time of admission. Future research should focus on developing and evaluating interventions in the acute phase. Keywords: Relatives, severe brain injury, anxiety, depression, quality of life, emotional distress Introduction Severe brain injuries of traumatic (TBI) or non-traumatic (NTBI) aetiology are among the major causes of death and long-term morbidity among younger age groups in the Western world [1, 2]. In 2002, 1693 incidences of contusions, diffuse shearing lesions and traumatic intracranial haemor- rhage were registered in Denmark [3] and 1048 cases of non-traumatic brain injury caused by subarachnoid haemorrhage, resuscitation after car- diac arrest, electrical shock, near drowning or suffocation were reported [4]. During recent dec- ades, attention has focused on the rehabilitation of this group of patients and today a large number of patients with severe brain injuries achieve a better level of function than previously [5]. There has been an ongoing development of guidelines for intensive centralized rehabilitation of these patients [6, 7] since the first research in the area and the need for intensive rehabilitation has been documented several times [5]. During the past 30 years, several studies have documented emotional strain and distress in family members persisting years after injury [8–11]. Studies have also shown that the relatives and their emotional condition and ability to cope with the situation are important factors in successful Correspondence: Anne Norup, Department of Neurorehabilitation, Traumatic Brain Injury Unit, Copenhagen University Hospital, Glostrup, Kettega ˚rd Alle ´ 30, 2650 Hvidovre, Denmark. Tel: þ45 3632 2405. Fax: þ45 3632 3312. E-mail: anne.norup@hvh.regionh.dk ISSN 0269–9052 print/ISSN 1362–301X online ß 2010 Informa Healthcare Ltd. DOI: 10.3109/02699050903508200 Brain Inj Downloaded from informahealthcare.com by Panum Biblioteket For personal use only.