Preparedness for the Death of an Elderly Family Member

Pre-loss grief (PLG) has been defined as the presence of grief symptoms while a family member with a life limiting illness is still alive (Nielsen, Neergaard, Jensen, Bro & Guldin, 2016; Blinded for review). Despite the potential impact that PLG may have on family members of a person with a life limiting illness, relatively little is known about the etiology and protective factors that influence the presentation of PLG. While this is an emerging area of research, those studies that have examined PLG have consistently found “preparedness” to strongly predict PLG (Nielsen et al., 2016). As the work in this area is still emerging, a consensus has not yet been reached on the constituent factors that are associated with preparedness and thus how best to assess for preparedness. To our knowledge, no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The current study aims to assess preparedness using a qualitative design that would aid in defining the processes associated with preparedness. The gained understanding of preparedness can be utilized to guide efforts towards improving the assessment and intervention for family members, thereby improving the well-being and quality of care in this at-risk population.

Background: Pre-loss grief (PLG) has been shown to be a significant risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. In order to reduce pre-loss grief, it is important to know how to address it. “Preparedness” has been found to be a strong indicator of PLG; however, there is not a clear consensus on what preparedness means and there is no reliable way of measuring preparedness. Before we are able to study the relationship between preparedness and PLG, we must first understand how family members define preparedness. Objectives: The goal of this study was to develop an initial theoretical framework of preparedness for the loss. Methods: Interviews were conducted with 16 family members of Stage 4 Cancer and 24 family members of Advanced Dementia Patients. Results: The overall theme related to preparedness for the loss was 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). In order to establish certainty before the person passes away, factors included religiosity and spirituality, good relationship quality with the person with the life-limiting illness, having access to support, good communication with the person with the life-limiting illness, and acceptance of the approaching death. Certainty for the future included knowing what to expect due to past experiences of loss, having plans for life without the person, and social support. Conclusion: This study provides an initial framework of preparedness for family members of individuals with a life-limiting illness.