The winning poster
Joanne Bird tells us about the findings illustrated on the winning poster entry at EONS11: Supporting melanoma patients and their carers: a qualitative exploration of social interaction between patients, carers and healthcare professionals.
Background: Melanoma incidence continues to rise in Europe, the USA and Australia with mortality rates remaining relatively stable, meaning more patients undergoing surveillance. Treatments may include multiple surgeries, targeted BRAF/MEK inhibitors and immune therapies. Clinical Nurse Specialists (CNS) provide support for melanoma patients and their carers in the UK but there is currently little evidence to guide interactions with limited resources available.
Aims: The overall project explored the experience and support needs of melanoma patients and their carers from diagnosis over a three-year period. The poster presented part of the project where we explored the interactions patients and carers had with Healthcare professionals (HCPs) that made a difference to their experience.
Methods: The study employed a qualitative methodology using a constructivist grounded theory approach. Theoretical sampling was used to recruit melanoma patients from outpatient clinics within a large teaching hospital in the UK. Patients then nominated a carer and HCP to be invited to take part in the study. Seventeen patients, 11 carers and 11 HCPs (one general practitioner, one practice nurse, one surgeon and eight CNSs (in skin cancer, head & neck cancer and palliative care) took part. Patients and carers were interviewed in-depth, up to six times over two years and HCPs were interviewed on two occasions. Initial topics changed at subsequent time points as interviews took on an emergent design. Diagramming was also used during data collection and a metaphor of a rollercoaster was developed by participants as a way to identify key time points in their experience. Focus groups were conducted at the end of data collection to refine the theory.
Results: Patients, carers and HCPs agreed on important points in the pathway resulting in four key phases: Diagnosis and initial treatment, surveillance, metastatic disease and bereavement. During all phases HCPs were used as a resource for their expertise, information and skills in clinical examination. This gave HCPs the opportunity to influence patients’ routines at this stage to facilitate sun protection and help them to lead a ‘normal life’ with melanoma. Having information delivered in a way that patients and carers could understand was crucial to their experience. Many patients and carers did not initially understand everything they were told owing to the shock of the diagnosis or the use of medicalised terms.
The quality of initial contact with the healthcare system and the nature of the ‘relationships’ that they forged with HCPs during diagnosis often proved crucial. A ‘good’ experience during diagnosis and initial treatments would have a positive influence on their ongoing care. Patients formed ‘relationships’ with HCPs whom they deemed to be accessible, rather than by their roles within the healthcare system. While they may have a named skin cancer CNS, sometimes they would rely on others with whom they had a relationship, for example, someone from their primary care practice. Patients and carers who had established close relationships with HCPs found the transition difficult when transferred to new services as they had to establish new relationships. Where promised support was not delivered, patients and carers lost trust in the healthcare system.
Conclusions: HCPs recognised the key time points where support was most needed and were often able to prove this. They could influence patient routines following diagnosis and treatment as they are a key resource, particularly for information provision.
Developing a trusting relationship with an HCP enabled patients to feel supported but this could only be achieved if patients and carers recognised that HCPs were accessible to them.
Doing a PhD – How EONS helped
The overall project is being conducted for my PhD. In 2013, I had the opportunity to undertake a Clinical Academic Doctoral Research Fellowship funded by the National Institute for Health Research. This enabled me to develop my clinical role with melanoma patients while conducting my own research. Five years later the PhD is nearly finished and it has not been easy to keep the momentum of the project going for that long, even when it is a subject that I am passionate about. However, in 2016 I was given the opportunity to take part in the first EONS PhD workshop in Stirling. I met a group of fantastic cancer nurses from around Europe. It was fascinating to hear about the different projects and comforting to hear that we faced similar difficulties. As a group we have stayed in touch and some already have their doctorates. The support that I have found within the group has been invaluable in keeping me going. Hopefully we will extend the group and pass on some of the advice that we have shared to other cancer nurses doing PhDs.
Joanne Bird is Research Nurse & NIHR Doctoral Research Fellow in the Academic Unit of Clinical Oncology, University of Sheffield, UK.