TOWARDS AN UNDERSTANDING OF PATIENTS’ AND PARTNERS’ EXPERIENCES OF BLADDER CANCER

Author: Susan Heyes

Heyes, Susan, 2017 TOWARDS AN UNDERSTANDING OF PATIENTS’ AND PARTNERS’ EXPERIENCES OF BLADDER CANCER, Flinders University, School of Medicine

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Abstract

Bladder cancer (BlCa) is a chronic disease that involves on-going treatment and surveillance. Due to the discomfort and side effects of treatment and surveillance, or radical cystectomy, clinical participants required on-going assistance and care. BlCa is commonly perceived as embarrassing, intrusive and difficult to deal with as it affects daily life within the family, socially, and for employment. Urinary, sexual and bowel dysfunction pose challenges for relationships, social activities and self-esteem. To date, most BlCa research has used quantitative methodologies to compare types of surgery, treatment regimens or to test new medication or diagnostic instruments. Most studies have focused primarily on muscle invasive bladder cancer, with little known about the lived experiences of participants with non-muscle invasive bladder cancer. Even less qualitative research exists, and few studies have included partners, or women with BlCa. This thesis has bridged that gap by using a pragmatic mixed methods research approach over two phases. In Phase 1, face-to-face interviews were conducted with clinical participants (N = 10) and their partners (N = 10). Participants were interviewed separately allowing for differing perspectives into the experience of living with BlCa. The use of Qualitative Description and thematic analysis exposed four themes of Physical Responses, Cognitive Reactions, Emotional Reactions, and Survival Techniques. These four themes were first operationalised by mapping them to the four levels of Roy’s Adaptation Model to enable quantitative testing and inform the development of a model of care. In Phase 2 a self-report questionnaire was developed based on the findings of Phase 1 with data collected from 119 clinical participants and 103 partners (N = 102 couples). The questionnaire booklet comprised demographic information and four validated scales (Bladder Cancer Index, Mini Mental Adjustment to Cancer scale, Psychological Adjustment to Illness Scale, and the Perceptions of Love and Sex Scale). Using multivariate analysis and structural equation modelling, this study identified various issues relating to the QoL of clinical participants and partners including some undesirable experiences within the healthcare system. Of note was that 30% of participants did not know they had BlCa because the word ‘cancer’ was not used and participants did not understand the medical jargon they heard. There was an absence of information and ongoing support, with a different urologist for every procedure. Surveillance cystoscopy appointment cards sent a month ahead triggered great anxiety among participants whereas others sensed they had fallen through the cracks when such information was not received. However, patients still complained of extended waiting times even when appointments were scheduled. Of significance is the mediating effects of families and social supports that negated the cognitive distress of clinical participants. Using the models tested, this appeared to be the strongest and most positive adaptive mechanism identified by highlighting the effects of partner support on clinical participants’ acceptance of, and adaptation to, their BlCa. These insights add to the original contribution to knowledge offered by this program of research, which culminated in the proposed six-step model of care. This research has provided a better appreciation of the quality of life of individuals with BlCa and an understanding of the needs of couples, including sensitive family and social needs, and the collaborations required with multidisciplinary teams to assist in the model of care that will allow clinical participants and partners to achieve better adaptation to BlCa.

Keywords: Bladder Cancer, Adaptation, Cognitive Distress, Healthcare System, Psychosocial Burden, Mixed Methods
Subject: Medicine thesis

Thesis type: Doctor of Philosophy
Completed: 2017
School: School of Medicine
Supervisor: Associate Professor Malcolm J Bond