A life in limbo: an IPA study of informal carers’ making sense processes of acute leukaemia

Caring for a patient with acute leukaemia is a laborious task. To date, there are limited studies suggesting that carers’ quality of life can be affected by factors such as increased burden and disruptiveness. Yet, evidence remains scant on informal carers’ making sense of acute leukaemia. This study explored family caregivers’ making sense processes of a having a family member diagnosed with acute leukaemia. An exploratory design was employed using serial, in‐depth interviews, guided by Smith’s Interpretative Phenomenological Analysis (IPA) approach. Eight family caregivers were recruited during a 14‐month period from two clinical sites in Central Scotland. A set of two serial, in‐depth interviews were conducted two to four weeks apart with participants within the first year of diagnosis or post‐relapse. Data analysis resulted in seven subordinate themes, which were then organised in three superordinate themes. The carers of patients with acute leukaemia in this study made sense of acute leukaemia as a state of limbo. Once their loved one received the news of diagnosis, they entered in a limbo state, dominated by uncertainty. The second process included navigating this limbo. This involved steering through their social world and the hospital environment. Finally, the last process identified was the transcending of limbo, namely the process dominated by the various coping strategies they employed, their acting as facilitators and their efforts to reconcile the illness in their lives. Results from this study can inform specific interventions involving families of patients affected by leukaemia.