Reading the family: a constructivist grounded theory on approaching families of potential organ donors
Item statusRestricted Access
Embargo end date31/07/2022
Aviles Reinoso, Lissette
BACKGROUND: The organ donation process entails a series of complex interventions to help people through transplantation, and approaching families is considered one of the most relevant of these processes. Approaching families consists of the process in which trained healthcare professionals speak to the family of a potential organ donor about organ donation. In Chile, organ donation is only possible after brainstem death, and the family’s authorisation is required to proceed. Previous research has been conducted either from the perspectives of families or of nurses. However, there is a dearth of empirical examination on how both groups experience this process in Chile. AIM: This constructivist grounded theory investigated the process of approaching families of potential organ donors from the experiences of healthcare professionals and families in Chile to develop a theory that can guide practice and policymaking. METHODOLOGY: A constructivist grounded theory study was conducted to theorise the process of approaching families of potential organ donors in Chile. The data consisted of seven months of observations over two time periods across two large public hospitals in Chile. Field notes from 297 hours of observations, documents (n=80), interviews (n=27) and focus groups (n=14) with 71 participants (51 healthcare professionals and 20 bereaved families) were included. Interviews and focus groups were audio-recorded and verbatim transcribed to be managed and analysed thoughtfully using NVivo 12. Data collection and analysis followed the principles and practices of Charmaz’s constructivist approach to develop a middle range theory (Charmaz, 2014). FINDINGS: The core process of Reading the family was developed unveiling how nurse organ donor coordinators approach families. The middle-range theory Reading the family describes the skilled, but often hidden process of nurse organ donor coordinator’s ability to access and work with each family’s emotions to start the negotiation process of organ donation authorisation. Reading the family is contextual to coordinators, who lead the organ donation process, and their ability to understand others’ emotions. Reading the family is a relational and complex process consisting of two main categories: edgework emotion management and ambiguous loss, which explain how the experiences of nurse organ donor coordinators and bereaved families are intertwined. Lois’s (2001, 2003) concepts of ‘edgework emotion management’ was used to theoretically elucidate the experiences of nurse organ donor coordinators in managing the boundaries between order and chaos in controlling fear, focusing attention and negotiating organ donation. Edgework emotion management illuminates how nurse organ donor coordinators being present to recognise their own emotions and those of the families, managing these emotions on the edge as they approach families, and extending the emotional edge to make sense of their experiences. Reading the family acknowledges that families of potential organ donors experience an ambiguous dying transition at the time of negotiating organ donation. Expanding Boss’s (1999, 2004) concept of ‘ambiguous loss’, I propose a third type of ambiguous loss. Donating families spoke of their donor family members as both psychologically and physically present after death through the organs donated. Families maintained a psychological bond of relationality and connection with the deceased post organ donation, signifying their family member as living on, meaning and narrative that is co-constructed by coordinators and families. IMPLICATIONS: Reading the family is as a middle-range theory that can guide nursing practice within the organ donation process from the perspective of sociology of emotions. It suggested that a better understanding of nurse organ donor coordinators’ role in supporting the bereavement process of all families, donating and non-donating families, is needed within health institutions. The findings also suggest rethinking the current approach and policymaking that focuses on indicators as measurement of success rather than the process, and strategies are proposed to better support clinicians, families and policymakers in critical care, organ donation and transplantation field.