FACTORES DE LA ZONA DE PODER

Rosemary’s story follows to introduce this chapter by setting the scene for the presentation of what the patients’ stories said about their well-being. She revealed that she experienced a range of emotions, frequently changing, sometimes conflicting and some experienced simultaneously as her cancer progressed. Her storytelling was typical of that of most other patients. She expressed her emotions, mainly as feelings, and they were taken to be the key indicators of her well-being. 1 _{She experienced a diversity of emotions as she}

moved through the stages of diagnosis, treatment, recurrence, and preparation for her death. Initially she recorded feelings of fear, apprehension, sadness, confusion, disillusionment and comprehension, which she likened to a “roller coaster” ride. During her treatment phase she mentioned helplessness, depression, regret, loss of control. In the latter stages she described her feelings of acceptance, thanksgiving, confidence and joy; but there still remained an element of denial when she said “Now I knew I didn't have long to live, though I certainly haven't wanted an estimate of just how long that may be” 2 _The

1 _{This research makes no distinction between the use of the words “emotions” and “feelings”.}

The research interest is in considering the actual terms used by the cancer patients

themselves. In practice they made no distinction between emotion and feeling. In every case the trigger was an oncological reality (emotion) accompanied by internalization (feeling). This chapter concentrates on the consequential impact on well-being that the patient had chosen to express through a description of emotions.

2 _{Rosemary Grimm, "Rosemary Grimm's Experience with Ovarian Cancer," Steve Dunn’s} Cancer Guide Stories (1994). http://cancerguide.org/rgrimm_story.html. [Accessed December 12, 2012]. Postscript: Rosemary Grimm died Sept 25, 1999 at her home, surrounded by family as she desired.

fluctuations in her feelings signalled how she perceived her well-being during her life with ovarian cancer and her self-talk can be understood as prayer.

Ovarian cancer seldom produces any symptoms at all until the latest stages. So it was with me. I felt fine. Just before a routine physical exam in June 1994 at the age of fifty, I noticed a lump in my lower abdomen... The C word was not uttered, but that mention of chemotherapy alerted me. I was hoping for the best at my appointment with the gynecologist. What I was told was not the best; it was almost the worst … By the time I saw the medical oncologist in his office (he had visited me in the hospital), I had all my questions written down. I brought one of my sons with me. This was one of the smartest things I did. It was impossible for me to hear and understand what I was told. Kevin would help me put it all together later…

Has cancer changed my life? I am arrogant enough to want to say no. The truth is it has. I changed occupations. I am now a substitute teacher rather than a lawyer. I guess many people rethink their careers when faced with a life threatening illness. I rode an emotional roller coaster for some time. I was depressed for periods of time. I think that's only natural. I found out that some friends can't cope with cancer and disappear, but others are worth their weight in gold…. It wasn't until July, 1998 that I truly felt like my old self, a real person, not a cancer patient. It was as though a switch had been thrown and my emotions now coincided with my intellect…

This all happened amazingly quickly. Maybe you can imagine the double blow this was to me: I thought I was cured; I had been practicing saying, "I had cancer," rather than, "I have cancer." Now I knew I didn't have long to live, though I certainly haven't wanted an estimate of just how long that may be….

I considered it a blessing to have such a clear sign of immanent liver failure. Now I would concentrate on living the rest of my life as well as possible. I chose referral to hospice home care.

I am very pleased with my hospice team (a doctor, nurse, social worker, and a chaplain and therapist should I need them.) They are not just emphasizing preparation for death. They are helping me live well. …

I don't think I've ever been afraid of death; perhaps because I am at peace with my family and friends--no unfinished business there... Lastly, I want to thank all who have written to me to ask questions, show concern, tell me their stories or offer prayers. It has meant a lot to me. Some have said they found my story inspirational. I meant it to be informative; I mean this update to be informative, whether or not you agree with my decisions.3

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Rosemary’s narrative was introspective as she worked through the impact of her ovarian cancer diagnosis on her life and as she made the consequential changes; “I considered it a blessing to have such a clear sign of immanent liver failure”. However, in addition to revealing her feelings, her self-talk provided the reader with insight into the new meaning for her life. “Now I could concentrate on living the rest of my life as well as possible… This all happened amazingly quickly. Maybe you can imagine the double blow this was to me”. She thought she was cured but then learned that she had not long to live. She was working out her own future through telling her story and simultaneously intending to provide advice to others. “Some have said they found my story inspirational… I mean this update to be informative, whether or not you agree with my decisions.”

Rosemary’s story was chosen to introduce this chapter which presents the results of investigations into the things that cancer patients said contributed to their well-being.4 _{This study indicated the existence of other valid strong}

existential indicators of well-being within the cancer patient story dataset. The full set of indicators were feelings, patient self-talk, worst part, meaning for life,

4 _{Chapter 1 contains the Krishna Mohan definition of well-being which includes Western and}

Eastern elements. Positive well-being requires some control over needs, stresses and frustrations (Western) and also an ability to achieve balance between satisfaction and denial (Eastern). Well-being can be visualised as located along a linear scale ranging from positive to negative. The lowest well-being is the total absence of control or balance and is located close to maximum negative end of the well-being scale. Mohan requires a subjective element to well- being which is taken in this research to be the existence of spirituality which renders both well- being and prayer meaningful and provides evidence of faith; Rosemary’s story, just told clearly contained all of the Mohan elements and arose from faith.

advice to others, best part, and advice from others. These seven indicators of well-being were clustered by similarity to the words used by all storytellers in the node for well-being.5 _{They were found to be very highly correlated providing}

confidence in using them as indicators of well-being.

Figure 4.1 following, shows graphically, the results of this CAQDAS made under the parent node well-being for each of the child (dependent) nodes identified above.6 _{The substance of this chart forms the context for the detailed}

results presented in this chapter and in the next. The concentration of this chapter is on the relation of feelings to well-being as found in the patients’ stories. The next chapter presents the results of the remaining well-being expressions found in the cancer stories.

5 _{Clustering describes the process in which the content of the parent node (well-being here)}

was compared for word similarity with the content of the related child nodes (here feelings, self-talk etc.). Six of the child nodes had very strong positive Pearson coefficients (Pr) relative to well-being in the range 1.000 to 0.7454. Only advice from others had a Pr outside this range.

6 _{In this study’s computer assisted qualitative data analysis process (CAQDAS) using NVivo} ®_,

nodes were visualised as containers into which conforming text was placed. A generic container, that enclosed other related smaller containers, was called a parent node here and the sub-containers were called child nodes. The analysis involved determining the similarity of the words in the containers (nodes) being compared. In the analysis, similar word contents were understood to indicate a similarity existing between the nodes being compared. The strength of the relationship was quantified by statistically analysing the clustering of similar words between the nodes.

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Figure 4.1: The expressions of well-being.

The expressions of well-being made by cancer patients broken down by gender, plotted against the total number of references to child nodes of the well-being parent node found in the collection of cancer stories. (The female value appears first in each pair of bars and is coloured red). The 1491 references exhibited a Pr of 0.95 based on word similarity.

One thousand nine hundred and forty six references to well-being were found in the compendium of cancer stories examined in this study. Taken collectively these exhibited a high positive Pearson correlation of 0.95 based on word similarity. The feelings sub-group was observed to be the most popular of the total of nine; it received the largest number of references. Almost equal, second were the references found in the child nodes meaning for life and

advice to others. A paradox seemed to exist here in that the stories contained

350 references to giving advice to help others (female references =146, male

0 50 100 150 200 250 300 F ee ling s Me anin g f o r Li fe Ad vi ce t o O th er s Be st P ar t W o rst P ar t P atien t S elf- ta lk Ad vi ce f ro m O th e rs Co n ce p t o f W el l- b eing P O P UL A RIT Y (F requ ency o f W ell -b eing cod ing cou n t)

Well-being Expressions by Cancer

Patients

n=1946 (Pearson correlation 0.95)

=204) and yet only 12 references were made to taking advice from others (female references =3, male =9), as is seen in figure 4.1. If such a substantial pool of good advice existed, why was so little taken up? This led to a deeper investigation into well-being and into prayer that revealed a unique finding about the quality of listening and its link with healing prayer. Full discussion requires the results of the investigation into healing prayer that follows in the next chapter. The discussion in chapter 7 brings these elements of listening and healing together. Rosemary wrote her story both as a means of managing her cancer, but also intending to give advice to others; yet she herself preferred professional advice over that of her peers. In this she typified the greater popularity of the advice to others over advice from others seen in figure 4.1 above. The results also indicated some gender based differences that were seen within each of feelings, advice to others and self-talk found in the results.

This chapter addresses well-being by presenting the results obtained from CAQDAS performed on the patients’ stories taken as indicators or sources of well-being. Similarly chapter 5 contains the results obtained by analysis of the dataset under the term prayer as it was contained there. Chapter 6 contains the discussion, reflection and conclusions derived from these results to reveal the impact of the prayer of cancer patients on their well-being, which was the big question addressed by this research. This sequence of presenting results prior

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to presenting the discussion and conclusion was used to ensure valid grounding in the dataset of stories as required by the GT methodology.7

This introduction to well-being can be summarised by saying that the words in which the cancer patients expressed their feelings were found to be very individual as they described their personal experience of cancer. However they seemed to have much in common. The GT methodology required a complete grounding in the individual narratives that rendered a complex hermeneutic process very productive. Productive, because eighteen mutually well correlated indicators of well-being were identified. These formed the parameters for the CAQDAS of well-being whose results are presented in the following paragraphs.