The experience of ambiguous loss in families of brain injured ICU patients

Background: Advances in medical technology have led to increased survival rates for critically ill patients, resulting in the survival of patients with serious traumatic brain injury. These patients may suffer some permanent brain damage leading to an ambiguous loss in families. Ambiguous loss has two dimensions: (1) a loss that relates to the physical absence but psychological presence of the family member and (2) a loss that refers to the psychological absence but physical presence of the family member. Aim: The overall study aimed at exploring families' experiences with critical illness in intensive care and nurses' perception of families. This article presents findings of one specific aspect, namely, families who experienced an ambiguous loss following the patient's brain injury which resulted in permanent brain damage. Design and method Constructivist grounded theory that used focus groups as the method of choice. Reported data originate from nine family interviews (12 adults, 12 children/young people). Data analysis: Interviews were recorded, transcribed verbatim and imported into NVivo for data management and analysis. The principle approach in grounded theory, the constant comparative method, was followed. Results: The findings suggest that ‘the emergence of ambiguous loss' reflects the families' experiences with the second type of ambiguous loss, namely a loss that relates to a family member who was physically present but psychologically absent. ‘Mapping the future’ is a further dimension of this theme which underlines the impact of an ambiguous loss on everyday family life. Conclusion: Families where the patient had suffered permanent brain damage experience an ambiguous loss. In this situation a caring scenario emerged which had a fundamental impact on the family's future. The dimension of ‘mapping the future’ draws out these implications for different family members. Relevance to clinical practice: Nurses need to be aware of the implications an ambiguous loss can have on families.