An Examination of Preparedness for Family Members of Individuals with a Life Limiting Illness: A Possible Protective Factor for Pre-Loss Grief

Abstract

Pre-loss grief (PLG) has been defined as the presence of grief symptoms (e.g., longing/yearningfor the person) while a family member with a life limiting illness is still alive. “Preparedness” has been consistently found to strongly predict PLG yet a consensus has not yet been reached about how best to assess for preparedness. The purpose of this study was to develop a preliminary theoretical framework of preparedness through conducting prospective semistructured interviews with family members of Stage 4 Cancer (N=16) and Advanced Dementia (N=24) patients. A codebook was created, as blind coders were asked to identify themes based on the answers to the questions from five separate transcriptions. Next, two other coders, coded all forty transcriptions. Nodes were identified for each transcription and summed. Also, the number of times the node appeared throughout the forty transcriptions were summed. The main overarching theme related to preparedness for the loss was the issue of the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Present Certainty included, religiosity and spirituality, good relationship quality with the person who has the life limiting illness, having access to family, friends and community support, good communication with person with life limiting illness, and acceptance of the impending death. Future Certainty was reflected in statements pertaining to religious and spiritual, knowing what to expect due to past experience of loss, having plans for life without the person, making pragmatic preparedness for the event of the death, and having social support. This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness. After validation of this framework, a measure of preparedness should be developed and tested. This measure would provide the field with the ability to identify family members’ preparedness for the death of their loved one.