Conceptualising psychological distress in families in palliative care: findings from a systematic review

Abstract

Background: Adult palliative care patients and their family members experience significant psychological distress and morbidity. Psychosocial interventions adopting a systemic approach may provide a cogent model to improve the psychosocial care of families in palliative care. To facilitate design of these interventions, the construct of psychological distress in families in palliative care should be empirically derived. Aim: To ascertain how psychological distress is conceptualised in families receiving palliative care. Design: A systematic review of the literature; this was followed by a thematic analysis and narrative synthesis. Data sources: Using pre-defined search terms, four electronic databases (MEDLINE, CINAHL, PsycINFO and Behavioural Sciences collections) were searched with no date restrictions imposed. Pre-determined inclusion and exclusion criteria were then applied. Results: A total of 32 papers were included in the review. Two findings emerged from data synthesis. First, distress is conceptualised as a multi-dimensional construct but little consensus exists as to how to capture and measure distress. Second, distress in the families within these studies can be conceptualised using a tiered approach, moving from individual non-interactive depictions of distress through gradations of interaction to convey a systemic account of distress within the family system. Thus, distress shifts from a unitary to a systemic construct. Conclusion: Currently, there is a paucity of research examining distress informed by family systems theories. This review proposes that distress in families in palliative care can be conceptualised and illustrated within a tiered model of distress. Further research is merited to advance current explanatory frameworks and theoretical models of distress.