We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury

Abstract

Subjective changes are increasingly recognised as important in recovery and rehabilitation following traumatic brain injury. Accumulation of subjective changes over time has led many to examine the question of "continuity of self" post-injury. Vacillation between feeling the same and different is common and often at odds with the medical narrative preparing families for permanent change. This position of ambiguity was examined in a qualitative narrative study. The aim of this paper is to describe the narrative structures used by uninjured members of a family to understand change. These changes relate primarily, to their perspective of whether and how the injured person had changed, but also secondarily to whether and why they themselves felt they had changed in the first year post-injury. Nine uninjured family members from three families took part in three unstructured interviews during the first twelve months post-injury. In-depth narrative analysis showed family members used biographical attendance; biographical disruption; biographical continuity; and biographical reconstruction to understand change. Drawing on these findings it is argued that concentrating on a narrative of change is too limiting and that engaging in biographical narratives may help humanise care provided to injured individuals and their families. Implications for research and practice are discussed.

Family experiences up to seven years after a severe traumatic brain injury–family interviews

“…The loneliness among the injured persons related to not remembering what had happened and to others in the family not being able to share the experience. Loneliness in our study can be compared with what is reported in another study as feelings of isolation within the families [25]. Loneliness was also described as a dominant feeling and was either individual or shared and sometimes self-chosen.…”

“…This approach is also something we recommend for the whole family together. To help families to realign and reconstruct themselves post-injury might be a helpful strategy for rehabilitation [25]. A problem also described in our study was that STBI survivors demonstrated limitations in verbal expression and narration and thereby perhaps do not experience the positive result expected from these interventions [50].…”

“…We have only found one study following a family systems approach where formerly severely injured persons and their family members were interviewed together after treatment in an intensive care unit [24] However, there are studies of TBI families that take a holistic and a family-centered perspective even if family members are interviewed separately. The importance of narratives is highlighted [15,25], and it has been found that family-systems conversations and research (i.e., the family members are together) broadens the knowledge of how it is to be a family where one member is suffering from various illnesses. In a review it was shown that families evaluated and described the importance of being gathered in the same interview, thus learning from each other and creating a common family story [26].…”

A qualitative exploration of fatherhood after acquired brain injury (ABI)

“…In contrast to Morriss et al's (2013) study, only one of the fathers reported low self-confidence and self-efficacy in their perceived parenting ability. Another study noted when family narratives were misaligned, survivors feel isolated, experiencing a "moving out" from the family (Whiffin et al, 2017). Similarly, "conflicts and gulfs" in the narratives between family members have been noted to damage relationships (Couchman et al, 2014).…”

Understanding long‐term changes in patient identity 15–20 years after surgery for temporal lobe epilepsy

“…The majority of patients were identified as having a Foreclosed identity status (n = 26, 68%), with the next most prominent group being Moratorium (n = 7, 18%), followed by a small number of patients in Diffused (n = 3, 8%) or Achieved (n = 2, 5%; Figure 2). For the surgically naïve group, median (IQR) scores for the EIPQ commitment and exploration scales were 64.5 (14) and 54 (13), respectively. This group was more evenly spread between the Foreclosed (n = 22, 46%) and Diffused (n = 15, 31%) identity statuses, with fewer in Moratorium (n = 5, 10%).…”