The lived experience of nurses who care for family members during acute exacerbation of chronic illness: A phenomenological approach

In the previous two decades, the incidence of chronic illness has grown extensively across all demographics in all countries of the globe. The increase in chronic illness places significant burdens on stressed and diminishing health resources. In this environment it is not unusual for family members to assume the role of carer and this is particularly true for family members who are nurses. Although the experience of caring for a family member with chronic illness has been investigated extensively, there is a paucity of information around the experience of nurses who care for family members with chronic illness. This phenomenological study, which is embedded in Heideggerian philosophy, was aimed at exploring the ways of ‘Being’ a nurse who was also a primary carer for a family member, during acute exacerbation of a chronic illness. The study used purposive recruitment through a snowballing strategy. Fifteen registered nurses who were primary carers for a family member with a chronic illness chose to participate in the study. Participants were from regional and metropolitan areas of two eastern Australian states. Face to face or telephone interviews were conducted between January 2013 and June 2014. Interviews followed an unstructured conversational format and were digitally recorded and professionally transcribed. Thematic analysis of data used a three step iterative approach of reading and writing as described by van Manen (1994). Analysis revealed that there were three overarching themes identified by participants as significant impactors on their lived experience of caring for a family member during acute exacerbation of a chronic illness. Participants consistently identified that there were; personal, professional and practical consequences of Being a nurse family carer (NFC). Participants recognised that there were personal benefits and costs as a consequence of their role. The findings indicated that acute exacerbation of a chronic illness had wide impact upon the functioning of the family unit and so the diagnosis had implications for all family members. Healthcare knowledge and expertise enabled the NFC to integrate professional and personal aspects of caring but also brought worries and concerns to the NFC that might not be felt by non-healthcare professionals. The findings around this theme have been described as; a shared experience, a caring experience and a fraught experience. The second overarching theme explicated the professional insights from being a NFC. Analysis of the transcriptions revealed that participants assumed different roles to enable them to optimize the outcomes for their ill family member. The findings around this second theme have been described as: NFC as mediator, NFC as navigator and NFC as protector. The third theme examined the practical strategies that NFCs implemented to integrate chronic illness and promote the best possible outcomes for their family member. The findings around this theme have been described as Adapting to a new life-world and have been organize into three subthemes; Renegotiating expectations, Circles of support and Finding balance in a new life-world. These findings expand and extend the body of knowledge around nurses who are family carers and provide insight into healthcare delivery from a person who has the perspectives of informed health care professional, carer and consumer. The outcomes of this research hold significant insights and are worthy of inclusion in orientation and education programs that inform healthcare professionals about the vital role of family carers for the chronically ill and specifically the role of nurse family carers. These findings have implications for healthcare providers, policy makers and individual professionals.