Living with dying: the experiences of people with lung cancer and their families

Background: Lung cancer is a devastating
diagnosis. The high rate of complex problems
experienced by these people and very low five year
survival, underline the importance of providing
timely and efficient services. Yet recent research
confirms that patients’ symptoms and the wider
psychosocial issues experienced by them and their
families are difficult to manage. Further information
regarding this experience is required in order
to develop more responsive care.

Aims: The aim of this study is to explore the experience
of patients and carers living with lung cancer
in Northern Ireland.
Methods: A qualitative study was undertaken
using semi-structured interviews with a purposive
sample of 23 participants (12 patients and 11
carers). Interviews were conducted in patients’
homes and all interviews were taped and transcribed
verbatim. Due the vulnerability of this
population ethical procedures were carefully considered
and strictly adhered to. Transcripts were
analysed using a standard thematic approach.
Findings: Eight qualitative themes were derived
from this data:
• living with dying
• pervasive uncertainty
• emotional impact
• struggling for control
• facing loss
• financial hardship
• symptom burden
• information needs

Each theme will be presented using verbatim quotations
to substantiate meaning.

Conclusions: People with lung cancer and their
families are suddenly placed in a life-changing
situation, often lacking the experience or resources
to cope. They are confronted with the inescapable
reality of ‘living with dying’ on a daily basis. Nurses
and healthcare professionals delivering services
to these people need to understand the reality
and nuances of these issues, in order to deliver
improved care. For this population there is no time
to make mistakes or omissions in care and we each
have a role in improving this experience.