Men with advanced prostate cancer described “living with bodily problems” in terms of cyclical movements between being well and being ill
Q What are the meanings of living with bodily problems as narrated by men with advanced metastatic prostate cancer?
18 men with hormone refractory prostate cancer and skeletal metastases were recruited from 3 healthcare units, a surgical/urological department and a department for advanced palliative home care at a community hospital, and an oncology department at a university hospital. Most men (78%) were >65 years of age; median time from prostate cancer diagnosis was 42 months.
Men participated in conversational interviews that lasted 35–97 minutes and began with the question “Could you tell me about an ordinary day in your present situation?” All men mentioned bodily problems during the interviews, and the interviewer probed to further explore the experiences and meanings of living with these problems. Interviews were tape recorded and transcribed verbatim. Data were analysed using a phenomenological-hermeneutic approach, moving back and forth among naïve understanding, structural analysis, and comprehensive understanding.
4 interwoven themes were constructed to represent the meanings of “living with bodily problems:” being well and being ill (states of being) and losing wellness and striving to reclaim wellness (movement between the 2 states of being). (1) Being well: I am well, apart from the fact that I have cancer, which is fatal, but that’s a different story. The meanings of “being well” were 2-fold: firstly, being able to understand and control bodily problems, and secondly, to live as normal a life as possible. Men who had pain could experience themselves as “well” as long as there was no new, changed, or increased pain. Being in control of bodily problems encompassed knowing what to do when bodily problems arose. Being well could also refer to the experience of living a normal life; that is, by continuing to do what one is used to doing, one can put illness aside. (2) Losing wellness: on my way home from the supermarket, I had to stop and rest, and I told myself, “You’re actually ill, you’re not well.” “Losing wellness” described situations in which bodily problems were beyond control or problems stopped one from doing what had been done in the past. Emergence of new bodily problems or changes in problems created feelings of uncertainty and a loss of understanding of bodily problems; men then experienced a loss of control of their bodies and feelings of wellness. (3) Being ill: your body decides that now you can’t do it any more. The state of “being ill” was represented by feelings that bodily problems were beyond control and/or were hindering living a usual life. Men were reluctant to describe themselves as ill. However, when they spoke of bodily problems, they focused on pain and fatigue (with dimensions of tiredness and weakness or lack of stamina). Men spoke about pain in the past, present, and future tense. When it became impossible to understand pain as “ordinary” pain, it became a sign of cancer and the experience of being ill and symbolised the threat of “dying in agony.” Fatigue was usually described in the present tense and as a hindrance—that is, not being able to live a normal life and do what one usually does. It was described as being less dramatic and threatening than pain, representing the “natural course” of death. (4) Striving to reclaim wellness: as soon as I’m free from pain I get like a new life. Men described 4 ways of striving to reclaim wellness: gaining a sense of control over bodily problems; comparing oneself with others who are worse off; seeking contact with the healthcare system, which provided opportunities to get help in understanding and controlling bodily problems; and reclaiming wellness as a deliberate strategy.
In men with advanced metastatic prostate cancer, “living with bodily problems” was represented as cyclical movements between experiencing wellness and illness. Bodily problems could provoke a loss of wellness, in the context of knowing that the disease was serious and possibly fatal. Wellness was an implicit or explicit goal that could be achieved despite being gravely ill.
- A Fuchsia Howard, RN, MSN, PhD Student
Lindqvist et al provide an indepth description of the meaning of living with bodily problems as experienced by men with advanced prostate cancer, a topic that has not been addressed in the healthcare literature. Study methods were strong and well grounded in phenomenological-hermeneutic philosophy. The researchers described the nuanced differences between the meanings participants gave to pain and to fatigue, symptoms that are of primary concern to patients with advanced prostate cancer. The ability to differentiate between pain and fatigue and an understanding of the effects on patients’ lives are important skills for nurses. The authors suggest that nurses, by focusing only on symptoms and disease, could inhibit patients who are trying to reclaim wellness. Alternatively, nurses could enhance patient wellness by incorporating patients’ own narratives and personal meanings, while simultaneously managing bodily symptoms. The meanings of wellness and illness were not restricted to the body but also incorporated 2 other dimensions: understanding and control of bodily problems and the ability to live a normal life. An important further step, therefore, would be for nurses to understand how other factors, such as anxiety and depression and family interactions, are influenced by, and influence, transitions between wellness and illness. The findings also suggest that cognitive coping strategies were used by participants to reclaim wellness, and, as such, psychological interventions may help patients.
Lindqvist et al drew attention to the setting, northern Sweden, as a way of explaining how this cultural context may have influenced the finding that participants did not show signs of emotional suffering but, instead, presented themselves as “enduring.” People tend to tell culturally preferred stories,1 and in this context, the culturally preferred story may have been one of “enduring.” These enduring stories may have been attempts to preserve hope in the face of advanced cancer and do not eliminate the possibility that suffering existed.
For correspondence: MrO Lindqvist, Department of Radiation Sciences, Oncology, Umeå University, Umeå, Sweden.
Sources of funding: Lion’s Cancer Research Foundation and Swedish Cancer Society.