“Everyone was like flies around a jam pot”: A phenomenological study exploring the experiences of people affected by advanced disease in relation to the involvement of multiple health care services

People living with advanced disease face challenges to their being-in-the world; these are attributable to both the nature and progression of their illness and the level and variability of their care needs. Recent policy initiatives and
literature promote community care for patients with advanced disease, and there are a plethora of different health services that may be involved in care provision for people in the last year of their lives. The current research takes a phenomenological approach, informed primarily by the work of van Manen, to explore the lived experiences of patients and their spousal-carers in relation to the multiple services that are involved in their care.

In-depth, semi-structured interviews with twelve patients with advanced disease, and eight spousal-carers were conducted. These interviews employed the Pictor technique to support people in reflecting on, and communicating, their experiences of care situations. Pictor is an innovative technique that is used with lay-participants for the first time in this research. The technique encourages people to reflect on relationships and personal
experiences, and then to communicate these through the creation and discussion of a visual chart. The digitally recorded data were transcribed verbatim and analysed using interpretive phenomenological methods, supported by Template Analysis, which allowed the hierarchical coding of themes.

The research findings indicate that advanced disease affects people in many different ways; participants’ perceived meaning of illness is instrumental in how they view and engage with health care services. The lived experience of
this phenomenon is discussed as an ‘unhomelike-being-in-the-world’, and ‘striving for poise’. The varied experiences of participants are illuminated and further explored with a focus on key relationships with health care providers.
Here, it is argued that consideration of ‘authentic relationships’ is a valuable resource in supporting people affected by advanced disease.