The lung cancer nurse specialist role in Australia: developing a conceptual model of practice using participatory group concept mapping

Patients with lung cancer and their carers report high levels of unmet needs. Lung cancer nurse specialists (LCNSs) find a lack of evidence to guide them in providing supportive care to patients and carers. This is further compounded by a scarcity of evidence describing how patients and carers experience care provided by LCNSs, and what aspects of that care patients and carers value. Therefore, this research aims to inform the practice and role development of LCNSs to improve the lung cancer health care experience for patients and carers.
A participatory group concept mapping (GCM) research methodology was used to allow the three key stakeholder groups (patients, carers and LCNSs) interacting with the LCNS role to have input. Their perspectives were sought to determine key LCNS activities that were valued and provided to patients and carers. This mixed methods approach provided rich data to explore the processes and values of the LCNS role from the varying viewpoints of the participants. A Conceptual Model of Practice for the LCNS Role was developed by synthesising these perspectives to inform future development and practice of the LCNS role.
Group concept mapping involved collecting brainstorming statements from participants in response to the prompt ‘If the LCNS role was the best it could be, the LCNS would…’. Participants then sorted and rated the statements based on their perception of the importance of the activity or value expressed by the statement. They also rated the statement as to whether it had occurred, or they had experienced what the statement was referring to. Participants were able to self-identify as a patient with lung cancer, a carer of someone with lung cancer, or an LCNS. Forty-six individual participants provided brainstorming statements, and 18 participants sorted and rated those statements.
Using GCM software, concept maps were produced. A six-cluster map was chosen as the best representation of the data. The concepts described by this map captured six themes that affect the LCNS role: person-centred care, individualised information provision, dependable accessibility, professionalism, specialist nurse, and coordinator. Deep exploration of each cluster supported the development of the Conceptual Model of Practice. The Conceptual Model of Practice for the LCNS Role reflects the ways in which these themes both interact as individual parts of the whole, and the way those themes were valued by participants.
Both patients and carers valued person-centred care theme the highest overall, and LCNSs valued professionalism highest, followed closely by person-centred care. Examples of the activities that patients and carers valued but did not always receive were: having follow-up care from the LCNS at designated times during their lifetime; for the LCNS to enquire about their mental health;for the LCNS to be able to meet all newly diagnosed patients; for the LCNS to be sensitive to cultural needs; and for carers to be recognised for the supportive role they play for patients.
Recommendations informing the practice and role development of the LCNS role are made based on the data from this study. The recommendations include factors that will both improve outcomes for patients and carers and also benefit the practice and delivery of the LCNS role. The recommendations include ways of working, such as a proactive case style for managing patients, guidance on ways of strengthening the legitimacy of the LCNS role, and ensuring that the required resources and training for LCNSs are available. Most importantly, the findings support ensuring patients’ and carers’ voices are heard throughout all future development of the LCNS role. The
Conceptual Model of Practice for the LCNS Role describes the current landscape of the LCNS role in Australia. It also provides a framework to ensure ongoing development of the role, of LCNS practice, and the implementation of new roles. This study adds to the current small pool of evidence available to the LCNS to guide and inform their practice.