Perspectives on gaps in communication with breast cancer patients in New Zealand

Abstract

The world of breast cancer is pink, female-centric and aimed at an older, post-menopausal demographic. Whilst it is fitting that health campaigns be aimed at the majority of patients registering with the disease, these characteristics are not appropriate for everyone diagnosed with breast cancer. Ministry of Health statistics show that each year in New Zealand, around 25 men and 300 women under the age of 45 are diagnosed with breast cancer. This number is growing, with the number of breast cancer diagnoses increasing by approximately 18% in New Zealand over the last decade. Yet men, young women and other atypical patients are largely unrepresented in current communication resources, tools and national health promotion campaigns.

This thesis explores perspectives of health professionals, develops resources and makes recommendations to improve communication with patients during their breast cancer journey. In order to address a gap in current breast cancer communication, the focus was on the ‘atypical’ patient experience. For the purposes of this research, ‘atypical’ includes pre-menopausal women, Māori and Pacifika, men, people who have not had families and ‘high-risk’ or ‘vulnerable’ members of society. Through in-depth exploration of health professionals’ perspectives about communication with atypical patients in New Zealand during their breast cancer treatment, this research documents some of the current barriers to effective communication and knowledge exchange.

Semi-structured interviews were conducted face-to-face with eleven health professionals and support service providers. The interviews were transcribed and inductive qualitative thematic content analysis was conducted. Age, Gender, Culture, High-Risk and Survivorship were categories discussed by participants in relation to improving communication for a wider spectrum of breast cancer patients. The most common factor discussed by interviewees was Age. Younger women are likely to face specific emotional and psychosocial problems, which may require additional management and multi-disciplinary support. Participants also frequently mentioned Gender. Men can be uncomfortable presenting with symptoms of a change in their breast or chest area to a doctor, causing a delay in diagnosis. Any delays in the diagnostic process can have negative results on the general prognosis of the disease so early detection is important in order to improve breast cancer survival rates. Another area which needs improvement in communication involves specific cultural needs. There are lower percentages of Māori and Pacifika women attending breast screening as compared to other groups, which results in a reduced rate of early detections, worse outcomes and higher mortality rates for these patients. ‘High-risk’ or vulnerable patients include sex workers, people with drug addictions and/or mental health issues. These patients are generally unrepresented in current campaigns. They are less likely to seek medical care for symptoms, have poorer experiences in relation to knowledge exchange with health professionals and are less likely to attend for regular treatment and medication in follow up medical care.

Issues surrounding Survivorship were also commonly mentioned in research interviews, in that not enough is being done at the tail end of treatment to assist breast cancer survivors in processing their experience. This hinders reintegration back into society. With approximately 87% of patients in New Zealand now surviving breast cancer, participants pointed out that not enough is being done to prepare patients for the end of the treatment pathway. Interviewees described many survivors of breast cancer undergoing a ‘crash’ physically, mentally, socially and financially, in the three to twelve months after treatment. This crash has been shown to have negative psychosocial outcomes affecting not only the patient, but also their caregivers, families and thus society as a whole.

Recommendations from this study include: development of age appropriate literature and tools for young adults with cancer, development of specific strategies for reaching high-risk patients, ensuring gender inclusivity in campaigns and online information, even for a ‘female-centric’ disease like breast cancer and improvement of cultural awareness and methods to avoid cultural and linguistic barriers.

Medical professionals and support service personnel should be provided with resources to enable improved communication. Three short videos were produced to increase awareness about some of the issues faced by atypical patients. To mitigate negative survivorship issues, patients should be supported in exerting greater control of their experience. Benefits of a gym programme, EXPINKTTM’ are explored in a documentary, “I’m Still Here”. Conducted as a paper within the School of Education at the University of Otago, the ‘EXPINKTTM’ programme provides supervised and personalised exercise training for current and post-treatment breast cancer patients.