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Living through pelvic radiotherapy:A mixed method study of self-care activities and distressful symptoms
European Journal of Oncology Nursing 19 (2015) 301e309
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Living through pelvic radiotherapy:A mixed method study of self-care activities and distressful symptoms Sofie Jakobsson a, *, Tor Ekman b, Karin Ahlberg a a b
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Sweden Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden
a b s t r a c t Keywords: Nursing: illness and disease Experiences Symptom management Mixed-method Radiotherapy
Purpose: To explore patients' experience of their illness when undergoing pelvic radiotherapy by describing the presence and severity of distressful symptoms and to explore initiated self-care activities in response to illness and symptoms. Methods: A mixed-method study was performed which included a core qualitative dataset and a supplementary quantitative dataset. Twenty-nine women undergoing five weeks of radiotherapy were prospectively interviewed during five weeks of treatment in order to capture experiences, distressful symptoms and quality of life during treatment. Grounded theory formed collection and analysis of the qualitative dataset and statistics were used to analyze the quantitative dataset. Results: A maintained self-identity was concluded as being central during the trajectory of treatment. Initiated self-care activities served to alleviate physical, emotional, and social suffering; helping the respondents keep their integrity and sense of self. Previous life experiences influenced the process of being able to maintain self-identity. The gastrointestinal symptoms and pain caused most distress. Conclusions: In order to be able to maintain self-identity patients endure treatment by focusing on symptoms, on getting cured and on their self-image. Several distressful symptoms implied social limitations and a sense that the body would not take the strain. The result of this study can help health care professionals to gain a better understanding of the struggle to endure pelvic radiotherapy. Further, health care professionals should be more proactive in alleviating their patients' distressful symptoms. The results imply that previous life experiences should precede initiated interventions because these life experiences affect the patients' self-care activities. © 2014 Elsevier Ltd. All rights reserved.
Introduction Patients undergoing pelvic radiotherapy report an increased incidence and intensity of fatigue during treatment (Ahlberg et al., 2005a; Poirier, 2006; Purcell et al., 2010) and state that their fatigue affects their physical and social well-being (Ahlberg et al., 2005b; Magnusson et al., 1999). Patients also report frequent gastrointestinal symptoms including diarrhea, nausea, and pain, as highlighted in several studies (Ahlberg et al., 2005a; Christman et al., 2001; Guren et al., 2003; Khalid et al., 2006). Alleviating symptoms is an intentional activity, initiated by the person who is experiencing a symptom or by the health care professional (Dodd et al., 2001; Fu et al., 2004). Orem et al. (2001)
* Corresponding author. Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden. Tel.: þ46 317866059; fax: þ46 317866050. E-mail address: sofi[email protected] (S. Jakobsson). http://dx.doi.org/10.1016/j.ejon.2014.10.014 1462-3889/© 2014 Elsevier Ltd. All rights reserved.
describes self-care as the activities that a person initiates and performs to sustain health, well-being, and life. In a study by Magnusson et al. (1999), patients reported reading, listening to music, taking a nap, and planning ahead as strategies to alleviate fatigue. Similar activities were reported by Fitch et al. (2008) and by Williams et al. (2010). Abayomi et al. (2005) showed that, in order to alleviate gastrointestinal symptoms, women initiated several food restrictions during and after pelvic radiotherapy, including eating less and decreasing their intake of fibers, vegetables, and fruit. The study reported in this paper is part of a research program concerning the alleviation of fatigue and other distressful symptoms in patients who undergo treatment for pelvic radiotherapy. The program includes a new intervention to alleviate distressful symptoms, based on a link between fatigue and intestinal injury (Jakobsson et al., 2010). Before introducing a new intervention for alleviating symptoms during pelvic radiotherapy we wanted to explore patients' experience of their illness when undergoing pelvic radiotherapy; we aimed to describe the presence and severity of
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distressful symptoms and to explore initiated self-care activities in response to illness and symptoms. Methods
five weeks of radiotherapy. For a study to be performed with a mixed-method approach there should be an integration of data at one or more stages of the research process. Having simultaneously collected all data and separately analyzed the different datasets, we made an overall interpretation of the findings (Fig. 1).
Design Setting We performed a study with a mixed-method approach comprising both qualitative and quantitative data. With reference to Morse's (2003) definition of mixed-method designs, this study has a QUAL þ quan design, which indicates that the qualitative data is the core component (QUAL) and the quantitative data (quan) serves as a supplemental dataset to inform the core component. The design involves collecting the two different components simultaneously, with the core component directing data collection, analysis and interpretation of the data (Morse et al., 2006). The reason for collecting different datasets in our study was to expand and better understand the experience of undergoing pelvic radiotherapy; the different datasets represent two different perspectives on the same problem (Morse et al., 2006). The QUAL þ quan design with simultaneously collected data included both open and structured interviews, which involved the first author (SJ) meeting with and interviewing each respondent three to four times during their
The present study was conducted in an outpatient radiotherapy unit at a university hospital in Sweden, a unit caring for approximately 2800 patients each year. This study adheres to the Declaration of Helsinki and was approved by the ethical board of the University of Gothenburg (diary no. 009-08). Recruitment The first five patients were informed about the study at the hospital before start of radiotherapy. However, as the researcher perceived this hospital visit to be an inappropriate occasion because the patient is already fully occupied, the procedure was changed and information was sent out to subsequent potential participants by mail. The patients were then contacted by telephone a few days later by the first author (SJ) to enquire about their
Theoretical drive Inductive QUAL
Enhancing understanding Deductive quan
Core Component Grounded Theory
Simultaneous Supplemental Component Questionnaires
Open interviews n=15
Structured interviews n=29
Experience of illness Self-care activities
Symptom experiences Health-related quality of life
Grounded theory
Statistical analysis
Findings
Results
Overall interpretation
Fig. 1. Methods within the QUAL þ quan design.
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interest in participation. The researcher responsible for recruitment and data collection was not involved in the care of the respondents. All the patients who decided to participate signed an informed consent form before data collection. Participants A total of 65 patients with uterine or anal cancer were eligible for inclusion over one year. The inclusion criteria were 1) scheduled to receive curative radiotherapy in 2 Gray (Gy) fractions of up to 46 or 66 Gy, 2) an ability to speak and understand Swedish and 3) an ability to understand the aim of the study. Fifteen of the 65 patients did not fulfill the inclusion criteria, 17 declined to participate in the study and three women were not seen to inform them of the study. Thirty women agreed to participate. One patient with uterine cancer dropped out of the study after baseline, leaving 29 patients in the study (Table 1). Qualitative dataset Data collection of the qualitative dataset Fifteen of the 29 participants (Table 1) were interviewed in an open interview to more thoroughly explore their experiences and the self-care activities they had initiated. The aim was to collect retrospective stories of living through treatment which resulted in 11 interviews being conducted at the end of treatment and four being conducted one to four weeks after treatment according to respondents' preferences. Two open questions guided the interviews: “What was it like for you going through this period of treatment?” and “What were your thoughts and feelings when you started treatment?” The focus for the interviews was the respondent's story, and follow-up questions related to how the interviewee coped with undergoing radiotherapy. The interviews were performed using Grounded Theory (GT)- methodology
Table 1 Respondents characteristics. Characteristics
Diagnosis (n) Uterine cancer Anal cancer Surgery (uterine cancer) (n) Pre- treatment Chemotherapy (n) Pre- treatment Radiotherapy (n) 46 Gy 66 Gy Ethnicity (n) Swedish European Education (n) Elementary High School University Social status (n) Married Single Live-apart Occupation during treatment (n) Part-time work Sick-leave Retired Md years of age (range)
Structured interviews
Open interviews
n ¼ 29
n ¼ 15
19 10
8 7
19
8
10
6
19 10
8 7
27 2
13 2
8 11 10
3 8 4
17 10 2
9 5 1
3 12 14 64 (49e85)
3 6 6 63 (49e85)
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(Glaser and Strauss, 1967). GT has its roots in symbolic interaction and contains both induction and deduction. It aims to generate theories reflecting processes and actions from the context in which the theories will later be applied (Charmaz, 2006; Glaser and Strauss, 1967), which made GT a suitable approach for this study. GT has developed into different branches, of which the constructivist version is one (Charmaz, 2006). Initially, strategic sampling was used to capture a wide range of experiences. The concurrent data collection and analysis opened up for theoretical sampling between respondents with different intensity of symptoms in order to identify conditions affecting the categories that emerged (Charmaz, 2006). Interviews were carried out until saturation of the categories was established. The interviews, conducted by the first author (SJ), lasted from 20 to 60 min and all but one was recorded.
Analysis of the qualitative dataset The data analysis process was performed concurrently with continued data collection. All data was read as a whole and thereafter analyzed step by step. Substantial statements were classified into tangible codes that remained close to the original statements. These codes formed a basis for more abstract interpretation and coding into different categories (Charmaz, 2006). The characteristics of each category were sought through theoretical coding, with the final steps including a relational aspect between the categories that together formed a core category.
Quantitative dataset Data collection of the quantitative dataset All 29 patients were interviewed prospectively in structured interviews. These interviews were performed at baseline, after three weeks and at the end of treatment to collect data concerning symptom experience (frequency, intensity, and distress), self-care activities, and functioning. In the structured interviews items and response alternatives from questionnaires were read to the respondents in the order they appeared in the scales. All respondents had a copy of the questionnaires in front of them. In a few cases where face-to-face interviews were not possible, this data collection was conducted over the telephone. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) (Aaronson et al., 1993) was used to assess global health status and aspects of health-related quality of life. In addition, the Multidimensional Fatigue Inventory-20 (MFI-20) Swedish version, (Hagelin et al., 2007; Smets et al., 1995) was used to investigate the experience of cancer-related fatigue. Patients also graded their severity of fatigue and the distress it caused on a scale of 0e10. They were also asked to describe other symptoms that caused them distress in an open-ended question. To more thoroughly understand the impact of distressful symptoms, the patients were asked to rank the three most distressful symptoms and to explain why these were the most distressful. Open-ended questions related specifically to self-care activities for fatigue and diarrhea, consumption of medicines in relation to diarrhea and nausea, as well as self-initiated alternatives concerning dietary supplements and vitamins. Three questions related to amount of time performing physical exercise and type of exercise performed. When collecting data for the quantitative dataset respondents often expressed their thoughts and gave details of their experiences of going through treatment. In line with the methodology of grounded theory, which concludes that all data should be considered as valuable (Charmaz, 2006, 2009), these reflections were noted and collated as field notes.
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Analysis of the quantitative dataset Changes over time in intensity and distress of symptoms, functional subscales and global health/and quality of life were analyzed with the non-parametric Friedman test followed by the Wilcoxon signed-rank test because of skewed distributions of the data. All tests were two-tailed and a significance level of p < 0.05 was applied. Answers to the open questions pertaining to distressful symptoms and self-care activities were sorted in categories according to what was expressed. All categories were analyzed descriptively quantifying the number of patients who had reported each category. Findings Living through pelvic radiotherapy with a maintained self-identity Being able to maintain self-identity when living through pelvic radiotherapy formed the core category of the findings from this study. The categories and the dimensions which were of importance for the process of maintaining self-identity are visualized in Fig. 2. The process was understood to be comprised of three categories: (a) Focusing on symptoms (b) Focusing on getting cured and (c) Focusing on self-image. The self-care activities described in the categories and dimensions served to alleviate physical, emotional, and social suffering; they are interpreted as helping the respondents keep their integrity and sense of self. The responses to maintain self-identity all co-varied during treatment. Previous life experiences influenced the process of being able to maintain selfidentity (Fig. 2). Previous life experiences influenced and guided the patients through this unfamiliar period, prompting them to relate and act on experiences from the whole spectrum of life. Some saw themselves as having been strong since childhood and/or able to see things from different perspectives. In some cases, respondents pointed to education as a resource to draw on in determining how to act, for example, in choosing to be mentally strong. Moreover, both positive and negative experiences of ill health in themselves, in significant others, or in friends provided a basis for relating to different situations. Personal experiences could determine whether or not to talk about the illness or which expectations to have of this course of treatment. This strategy of using previous life experiences, of both reflective and direct character, also assisted the respondents in knowing how to handle a crisis and
Table 2 Global Health status and quality of life, functioning and symptoms during pelvic radiotherapy. Subscales
Baseline Md (25e75%)
3rd week Md (25e75%)
5th week Md (25e75%)
Global health status Physical functioning Cognitive functioning Role functioning Social functioning Emotional functioning Financial difficulties Diarrhea Fatigue Pain Nausea/Vomiting Loss of appetite Insomnia
67 93 83 50 67 83 0 0 11 0 0 0 0
58 87 100 50 67 92 0 66 33 25 17 33 0
50*(33e67) 80*(67e90) 83 (67e100) 33 (25e67) 50*(33e75) 92 (71e100) 0 (0e0) 66**(33e67) 44**(28e78) 33**(17e83) 17**(0e33) 33**(0e67) 33 (0e67)
(48e83) (70e100) (67e100) (33e100) (50e100) (75e92) (0e17) (0e0) (0e50) (0e17) (0e4) (0e0) (0e67)
European Organization for research and Treatment of cancer Quality of Life Questionnaire. Scores from 0 to 100: high scores represent high global health/quality of life, high level of functioning and high level of symptomatology. Friedman test *p < 0.05, **p < 0.001, n ¼ 25 on all subscales but diarrhea, pain, nausea/vomiting and global health status were n ¼ 26.
which self-care activities to initiate in relation to experienced symptoms. “Yes, but maybe it's the case that in other situations when stuff has happened, I might have reacted like this.” “But first of all it was worse when I thought about my brother because he didn't make it … it was five months, you know.” Thus, affected physical functioning, role and social functioning were all evident, as well as decreased global health status and quality of life (Table 2). Between baseline and five weeks of treatment, 15 respondents reported great change (greater than 20 points difference) in their quality of life as assessed by EORTC QLQ-C30, and four reported moderate change (1020 points difference) (Osoba et al., 1998). Three had unaltered quality of life and five reported an increase in quality of life, all of whom reported low (<50) quality of life at the beginning of treatment. Some respondents stated that enduring this treatment would probably change them in some way: it would make them more empathic to others, and they would reflect more on the content of life and their relationships with people. The experience of living
Focusing … on symptoms
- By making sense of - By taking actions
(33e75) (63e93) (83e100) (25e92) (33e83) (75e100) (0e17) (33e67) (22e67) (12e54) (0e33) (0e33) (0e50)
… on getting cured
- By putting life on hold - By doing one´s best
… on self-image
- By shaping others perceptions - By getting support
Through … previous life experiences
Fig. 2. The process of living through pelvic radiotherapy with a maintained self-identity.
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through treatment would now be a part of them and could shape them later on in life; however, it was too early to predict the possible changes. Having gone through treatment gave them strength, self-respect and pride. Focusing on symptoms The radiotherapy treatment contributed to several physical symptoms, and the consequent impact on the body was evident. To be able to make sense of these physical symptom experiences, the respondents constantly reflected over the origin and timing of their symptoms in relation to ongoing treatment and previous life experiences. “It (the tiredness) depended on other factors, of course e I had problems with diabetes too, and because I had those problems I was a little afraid that my body wouldn't be able to perform the way that was expected of me.” “No, I don't have an explanation, I don't know. It seems so illogical. I should have been at my healthiest that day.” “Saturday and Sunday nothing, Monday nothing, but yesterday there was. Then I got such a shivering fit. But I don't know whether it's because I was tired or if it's the radiation.” “But if it's the case now that I might get temporary lactose intolerance, I've drunk sparkling mineral water of course, and to get vitamin C it's cabbage, which isn't that good for the stomach e so you have to learn how to handle it all.” Physical symptoms were important for whether the respondents felt ill or not. Being ill in a specific, limited part of the body, having no distressful symptoms, not being in pain, being able to care for themselves, and feeling alert in body and mind were interpreted as making the struggle of maintaining self-identity easier. Respondents often expressed that their mind felt well but their bodies, or parts of their bodies, were ill. Being told that distressful symptoms would be short-lived made symptoms easier to endure. Current and previous experiences influenced the way respondents cared for their bodies. They took action, learned, reflected and took action again. Bodily care could preoccupy the respondents throughout the day, and distressful symptoms many times affected and directed daily activities. Dietary modifications to alleviate gastrointestinal symptoms consisted of eating smaller meals, eating less frequently, and not eating vegetables. Depending on personal preferences, opinions varied greatly as to what foods to avoid, for example coffee, milk, or bread. “All I do is look after myself all day long.” “I've learnt that I have to eat small, small portions and kind of proceed with caution.” The respondents stated that increased night sleep, extended daytime rest and preventive inactivity were their immediate responses to alleviate their sense of fatigue. The respondents also
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Table 4 Severity and distress from fatigue during pelvic radiotherapy. Time-points
Severity Md (25e75%)
Distress Md (25e75%)
Baseline 3rd week 5th week
0 (0e4) 6 (3e8) 7 (4e8)*
0 (0e5) 5 (2e7) 6 (4e8)*
Scale of 0e10. Friedman test (n ¼ 25) *p < 0.001.
reported decreased physical activity because of an increased sense of fatigue and the urgency to defecate without or with little forewarning. At the start of treatment, a few respondents performed physical activity repeatedly during the week while others were fortified through daily walks. At the end of treatment, no-one performed strenuous physical activity and only a few took daily walks, although many emphasized that going outdoors to the garden or out in the countryside was important for their existential recovery. The use of anti-diarrhea medications varied according to the respondents own preferences, with a daily intake of 0e6 tablets at the end of treatment (medium dose: two tablets/day). The fear of constipation limited the use of such medication. The use of medications to eliminate nausea was also a matter of personal preference. Five respondents took vitamins at the start of treatment but this number decreased to two by the end of treatment. At the end of treatment, five took daily liquid nutritional supplements and four took supplements with lactobacillus. At baseline, eight of the 29 patients were most distressed by worrying about their illness and the upcoming treatment. Twelve experienced other distressing symptoms and nine were not distressed at all by any symptom at baseline. After three weeks of treatment, 60% of the patients ranked gastrointestinal symptoms as the most distressing symptom, including diarrhea, nausea, appetite loss, and abdominal pain. As seen in Table 2, these symptoms increased during the first three weeks. After five weeks of treatment, gastrointestinal symptoms were still ranked as the most distressing symptoms, together with pain from the skin reaction and anal pain. The majority of respondents with anal cancer ranked pain as the most distressing symptom at the end of their treatment period. The pain made it hard to sit and to walk, and going to the toilet was associated with pain and anxiety. Fatigue was reported by most respondents as the second most distressing symptom after three and five weeks of treatment. There was a significant increase in fatigue in four out of five subscales of the MFI-20 (Table 3), as well as a significant increase in intensity and distress from fatigue as measured on a 0e10 scale (Table 4). Pain increased significantly during the whole treatment period (Table 2). The experience of pain differed between the two groups: patients with uterine cancer experienced pain in the abdomen, and patients with anal cancer experienced anal pain because of the adjacent skin reaction. Patients also described fecal urgency and incontinence, anal burning and itching, and increased urinary urgency. As shown in Table 5, being socially limited and the marked effect on the body were the most common reasons for experiencing symptoms as distressful.
Table 3 Fatigue at baseline, after 3 and 5 weeks of treatment assessed by The Multidimensional Fatigue Inventory-20.
Baseline 3rd week 5th week
General fatigue Md (25e75%)
Physical fatigue Md (25e75%)
Reduced activity Md (25e75%)
Reduced motivation Md (25e75%)
Mental fatigue Md (25e75%)
8 (5e15) 12.5 (9e17) 15*(12e19)
8.5 (5e14) 12.5 (6e18) 13*(12e18)
9 (5e16) 15 (12e19) 16*(13e20)
6 (4e11) 9 (4e14) 12*(7.5e14)
8 (6e11) 9.5 (6e11) 10 (6e13)
Response scores from 4 to 20; higher scores represent greater fatigue. Wilcoxon signed rank test, * p-value <0.001 between baseline and 5th Week of treatment (n ¼ 28).
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Because of the symptoms experienced, the respondents were forced to restrict their social life and into a situation of always having to be near a toilet and engaging in fewer social activities at home and with other outside the home. Distressful symptoms made their bodies weak so they were afraid that they would not take the strain. Many experienced that their bodies did not respond to what their minds set out to do.
significant others: protecting them from facts about their illness or doing less around the house, in accordance with their loved ones' wishes.
Focusing on getting cured Choosing to undergo treatment was based on an active decision to fight for survival after the diagnosis, with radiotherapy serving as a means for them to survive. Opting out of radiotherapy was not an option for any of the respondents. The two eldest (aged 82 and 85) expressed a wish to more thoroughly discuss the treatment in relation to their age, but they never intended to abstain from treatment. All the respondents expressed a wish to start treatment immediately as they lacked any own alternative strategy to fight cancer. Many found themselves in a situation where they were powerless to help themselves against cancer.
Respondents indicated that the hope of being cured from cancer made the duration of treatment easier to bear. Hopeful expressions from health care professionals such as “this is a treatment to be on the safe side”, “this is a good cancer” or assurances that they would see their grandchildren grow up were deemed helpful during treatment.
“Because the doctors have said you'll get a tough treatment, you'll get tough cytotoxic treatment … yes please, you say. And then you'll get a lot of very strong radiation … yes please.”
At the start of treatment respondents saw themselves as healthier than ill, which implied a hope of being cured. However, their perception of illness grew as treatment progressed, as distressful symptoms increased and as quality of life decreased.
It was impossible to know what to expect experientially from the course of treatment, or to predict the outcome. Some of the respondents were anxious before treatment and when prescheduled changes were made. Others did not worry; instead focusing on the fact that something was being done. Nevertheless, undergoing treatment was the respondents' highest priority and other things in life were put on hold. “I can't think about anything else, I don't have any other activities.” “Focusing on getting well. And only focusing on that.” “When it was whole weeks I only thought as far as Friday. When I'd got there, I'd done it and thought in terms of a quarter, a third, half.” Respondents expressed a need to live one day or one week at a time. To map out the time more clearly, some respondents set out yardsticks for themselves during their treatment. Even though respondents wanted the treatment period to pass as quickly as possible, they stated that days without radiotherapy were important. On such days the body was given a chance to recover, which provided hope of recovery after treatment. In this totally novel and unimaginable situation the respondents were determined not only to cooperate with other peoples' demands but also to do their best. “Generally you just have to pull yourself together occasionally so that you're not just sitting there.” Many stated that they put demands on themselves not to lean back and rely on others, and felt a personal responsibility to actively contribute to the successful completion of the treatment. Doing one's best implied trying to be positive and grateful. Respondents stated that it was important to try to have positive thoughts every day, and some related this to being positive by nature, while others had to be more active in preventing negative thoughts from gaining upper hand. Gratitude was expressed in relation to treatment being available and in relation to any assistance and care provided. The respondents also did their best to act in the best interest of their
“In the midst of this hell I've been given the gift of being a bit more easy going; we can laugh about it and even about tummy trouble, we laugh at those accidents and everything like that … it has gone really well.”
“When you get confirmation like that and it comes from such an experienced doctor who's had so many of these, you're convinced that it's now on track to really being ok.”
Focusing on self-image Respondents' activities for shaping other people's perceptions of them and receiving strength from support formed this category. To endure this period in life, respondents emphasized the need for support from others such as significant others, other individuals undergoing cancer treatment and health care professionals. Significant others gave strength by being confirmative to the respondents' feelings and needs; their support also including calling, sending cards, and helping with day-to-day activities such as household chores. “I've had a lot of support around me, friends and family.” “I've kind have got it all e a network who support and help me, and that's really positive. It surprises me actually, how many of them there are.” Such support gave the respondents the opportunity to focus on themselves. Respondents expressed the view that other individuals undergoing cancer treatment had a greater understanding of the situation than significant others and that these fellow patients were supportive by sharing and confirming experiences, making time pass together, laughing and talking. Supportive health care professionals were also said to be important, such caregivers being characterized as happy, empathetic and confirmative, and spending time chatting or making friendly gestures, such as giving a pat on the shoulder.
Table 5 Reported implications due to distressful symptoms. Implicationsa
3rd week (n)
5th week (n)
Social limitations Impact on the body Unalleviated pain Feeling of powerlessness Altered self-image Concerns about the future
17 9 6 3 4 1
18 11 6 5 2 2
a
More than one response is possible.
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“The main thing is that it's really important that all the staff are really nice to you when you're not feeling this well.” Nevertheless, the health care professionals were perceived as being busy and not always confirmative of the respondents' experiences, thus creating a barrier to the communication of the respondents' daily distress. Respondents felt safe when they were surrounded by experts on cancer and cancer treatment. The respondents in our study disliked the fact that they had now become individuals with cancer, and did not want to be treated differently to how they were before their diagnosis. “She has cancer … they think I'm going to die. But I don't feel that way.” They did not want to be seen as a different person and some indicated that they did not want to be pitied. They demonstrated this by being very conscious of their own actions and manners in different social situations, in which they tried to act like their former selves as much as possible. “So I'm loud and I swear like I usually do and that. So that they see I'm not that very different.” The respondents did not always admit to significant others that they had thoughts of death and cancer because these thoughts were considered to be too frightening and morbid and might have adversely affected how others saw them. Many felt uncomfortable using the word ‘cancer’. “It's probably because otherwise, if I use those emotionally charged words, it's easy for the person who's listening to stop listening e they can't cope with listening and absorbing it.” Respondents varied as to whether or not they would tell significant others about their cancer diagnosis and treatment. Some wanted to disclose it immediately to show that there was an open climate and to prevent others from making their own interpretations of the situation; some postponed disclosure to gather more information before they told children, relatives and workmates. Respondents with a partner who found it difficult to relate to the fact that their loved one was ill felt a sense of being abandoned and experienced a lack of support. Discussion The findings of this study highlight what can enable a person to undergo pelvic radiotherapy. The core of maintaining self-identity, with its existential character, related to the experience of being struck by an acute illness, cancer, and not only to the fact of undergoing treatment. Focusing on symptoms, on getting cured and on self-image made the treatment endurable and provided strategies to maintain self-identity. The importance of preserving oneself has been described earlier but primarily in relation to chronic illness (Charmaz, 1983; Morse and O'Brien, 1995). In the model Responding to Threats to Integrity of Self, Morse (1997) describes different stages from vigilance to enduring to suffering that are assumed to happen sequentially when someone experiences illness by traumatic injury. This model later developed into a model of responses of suffering by the process of interaction between enduring and emotional suffering (Morse, 2001). In the light of these models, the respondents are interpreted to be enduring treatment by enduring to live and striving to regain a sense of self. However, the emotional suffering described by Morse (2001) and
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by our respondents in relation to the message of a cancer diagnosis, is not visible during treatment. There can be several explanations for this. The activities for enduring may have the upper hand; alternatively emotional suffering may be stifled, or the respondents may release their emotional suffering within the confines of their homes, as has been suggested by Morse (2001). The timing of the open interviews, providing retrospective stories, could also have influenced the fact that the respondents viewed the treatment period from a different perspective. The respondents were active in maintaining their self-identity throughout treatment by continuously reflecting on and interpreting their experiences. The results show the importance of confirming and highlighting patients' previous and current experiences as a basis for ongoing care to assist patients in their efforts to live through treatment with maintained self-identity. It was evident that they related to and were influenced by their previous life experiences when interpreting the situation and initiating self-care activities. Lally (2010) stated that past life-altering experiences negatively influence the situation for women prior to their commencing cancer treatment. In our study, previous life experiences mostly had a positive influence in guiding the respondents as to how to handle living through treatment. Focusing on symptoms was a part of maintaining self-identity. During treatment, patients were highly distressed by their symptoms. The gastrointestinal symptoms of diarrhea, abdominal pain, and nausea caused the highest distress for the respondents and these symptoms have been reported in previous studies (Ahlberg et al., 2005a; Guren et al., 2003; Khalid et al., 2006; Nout et al., 2009). In keeping with the findings of Furst and Ahsberg (2001), our study showed a high increase in general fatigue, physical fatigue and reduced activity throughout the course of treatment, thus demonstrating its strong physical impact. The symptoms caused most distress, mainly because of the social limitations and physical impact. The described limitations in social and role functioning were influenced by the impact of distressful symptoms, a disrupted public self (Charmaz, 1983), and focusing on getting cured. In maintaining self-identity, respondents had to take a step back from life going on around them. Impacts on role, social and physical functioning were apparent in the EORTC QLQ-C30 functional scales, as well as decreased quality of life, in agreement with previous studies (Ahlberg et al., 2005b). The social impact on patients' lives has been shown to last a long time after treatment (Abayomi et al., 2009; Abayomi et al., 2005; Nout et al., 2009; Welzel et al., 2011). Emotional functioning showed a non-significant increase during treatment which was interpreted as reflecting a maintained selfidentity by undergoing treatment. The importance of appearing normal in the social interaction with others when undergoing cancer treatment has been described from earlier narratives (Ekman et al., 2004). Interventions aimed at alleviating the physical distress of experienced symptoms could alleviate some of the physical distress of living through pelvic radiotherapy. According to the National Comprehensive Cancer Network (Berger et al., 2012), pain, sleep disturbance, anemia, nutritional status, activity level, co-morbidity and emotional distress should be evaluated before introducing specific interventions against fatigue. In relation to the findings of this study showing that gastrointestinal symptoms cause most distress and that there is a correlation between diarrhea and fatigue (Ahlberg et al., 2005a; Jakobsson et al., 2010), interventions to alleviate gastrointestinal symptoms should also be prioritized in alleviating fatigue. Physical activity has been shown to have an alleviating effect on fatigue during and after cancer treatment (Duijts et al., 2011; Cramp and Byron-Daniel, 2012). The findings of this study, in line with others (Magnusson et al., 1999; Williams et al., 2010), highlight patients' efforts to alleviate fatigue by
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sleeping more and reducing physical activity. In the group of patients with anal cancer, it is important to acknowledge the excessive skin reaction, which rules out physical activity. Methodological issues In agreement with Charmaz (2006) it is believed that the data from the interviews were shaped by the respondent and interviewer together. Trustworthiness was enhanced in the present study through strategies for credibility (Charmaz, 2006; Lincoln and Guba, 1985), transferability, and dependability (Lincoln and Guba, 1985). The findings grounded in the data benefited from the longitudinal design and multiple encounters between the respondent and the interviewer, the face-to-face interviews contributing to rich data and altogether enhancing credibility. The multiple encounters served as a basis for creating a relationship that encouraged the respondents to feel safe and willing to share their experiences, feelings, and thoughts. Many of the respondents stated that it was positive to meet someone who would listen to their stories and ask about their well-being and their perceived problems. The longitudinal design comprised of both open and structured interviews, and the retrospective stories covering the treatment period gave rich data on the experience, which, together with perceived data saturation, determined the sample size for the open interviews. Dependability was enhanced by the fact that the context was new to the interviewer and an effort was made to maintain concurrent data collection and data analysis. This study was performed as a mixed method study with a longitudinal design, whereby interviews and questionnaires complemented each other. The interviews gave insight on the limitations and opportunities presented by living through treatment and the self-care activities that respondents initiated. The questionnaires included aspects of symptom distress and limitations in health-related quality of life. By choosing a mixed method approach we gained a richer overall picture of the experience. The narrow inclusion criteria of including patients going through pelvic radiotherapy served as a base for a better understanding of the symptom experience for these patients. However, the findings have been understood in the wider context of undergoing treatment with a curative intention, but they cannot be directly applied to the understanding of undergoing palliative treatment. There were no men among the respondents which is a limitation of this study. Patients who declined to join the study were significantly older than those who joined, median age being 71 (range 61e90). Reasons for declining were “not enough energy to cope with both radiotherapy and this study” (n ¼ 13), “lack of interest” (n ¼ 2), “feel too old (n ¼ 1) and feel too sad” (n ¼ 1). Conclusions To endure pelvic radiotherapy, patients described how they focused on symptoms, on getting cured, and on their self-image thus providing strategies to maintain self-identity. Several distressful symptoms involved social limitations and gave a sense that the body would not take the strain. Clinical implications The result of this study can help health care professionals for this patient population to gain a better understanding of the struggle to endure pelvic radiotherapy. Furthermore, it shows that they should be more proactive in alleviating their patients' distressful symptoms, including gastrointestinal symptoms, fatigue, and pain. This would prevent the trial and error situation involving patients' own efforts to alleviate experienced symptoms.
From the descriptions of the respondents' situation we conclude the importance of assessing patients' previous life experiences, which should precede initiated interventions because these life experiences affect the patients' self-care activities. Health care professionals should also be aware of and address the process patients may go through in focusing on self-image and getting cured. Conflict of interest The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. References Aaronson, N.K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N.J., et al., 1993. The European Organization for Research and Treatment of Cancer QLQC30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute 85 (5), 365e376. Abayomi, J., Kirwan, J., Hackett, A., 2009. The prevalence of chronic radiation enteritis following radiotherapy for cervical or endometrial cancer and its impact on quality of life. European Journal of Oncology Nursing 13 (4), 262e267. Abayomi, J., Kirwan, J., Hackett, A., Bagnall, G., 2005. A study to investigate women's experiences of radiation enteritis following radiotherapy for cervical cancer. Journal of Human Nutrition and Dietetics 18 (5), 353e363. Ahlberg, K., Ekman, T., Gaston-Johansson, F., 2005a. The experience of fatigue, other symptoms and global quality of life during radiotherapy for uterine cancer. International Journal of Nursing Studies 42 (4), 377e386. Ahlberg, K., Ekman, T., Gaston-Johansson, F., 2005b. Fatigue, psychological distress, coping resources, and functional status during radiotherapy for uterine cancer. Oncology Nursing Forum 32 (3), 633e640. Berger, A.M., Pickar Abernethy, A., Atkinson, A., Barsevick, A., Breitbart, W., Cella, D., et al., 2012. The NCCN Clinical Practice Guidelines in Oncology Cancer-related Fatigue Version 1. Charmaz, K., 1983. Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness 5 (2), 168e195. Charmaz, K., 2006. Constructing Grounded Theory : a Practical Guide Through Qualitative Analysis. SAGE, London. Charmaz, K., 2009. Shifting the grounds: constructivist grounded theory methods. In: Morse, J. (Ed.), Developing Grounded Theory the Second Generation. Left Coast Press, Walnut Creek, Calif, pp. 127e192. Christman, N.J., Oakley, M.G., Cronin, S.N., 2001. Developing and using preparatory information for women undergoing radiation therapy for cervical or uterine cancer. Oncology Nursing Forum 28 (1), 93e98. Cramp, F., Byron-Daniel, J., 2012. Exercise for the management of cancer-related fatigue in adults. art no: CD006145 Cochrane Database of Systematic Reviews. http://dx.doi.org/10.1002/14651858.CD006145.pub3. Dodd, M., Janson, S., Facione, N., Faucett, J., Froelicher, E.S., Humphreys, J., et al., 2001. Advancing the science of symptom management. Journal of Advanced Nursing 33 (5), 668e676. Duijts, S.F., Faber, M.M., Oldenburg, H.S., Van Beurden, M., Aaronson, N.K., 2011. Effectiveness of behavioral techniques and physical exercise on psychosocial functioning and health-related quality of life in breast cancer patients and survivorsea meta-analysis. Psycho-oncology 20 (2), 115e126. Ekman, I., Bergbom, I., Ekman, T., Berthold, H., Mahsneh, S.M., 2004. Maintaining normality and support are central issues when receiving chemotherapy for ovarian cancer. Cancer Nursing 27 (3), 177e182. Fitch, M.I., Mings, D., Lee, A., 2008. Exploring patient experiences and self-initiated strategies for living with cancer-related fatigue. Canadian Oncology Nursing Journal 18 (3), 124e140. Fu, M.R., LeMone, P., McDaniel, R.W., 2004. An integrated approach to an analysis of symptom management in patients with cancer. Oncology Nursing Forum 31 (1), 65e70. Furst, C.J., Ahsberg, E., 2001. Dimensions of fatigue during radiotherapy. An application of the Multidimensional Fatigue Inventory. Supportive Care in Cancer 9 (5), 355e360. Glaser, B.G., Strauss, A.L., 1967. The Discovery of Grounded Theory : Strategies for Qualitative Research. Aldine de Gruyter, New York. Guren, M.G., Dueland, S., Skovlund, E., Fossa, S.D., Poulsen, J.P., Tveit, K.M., 2003. Quality of life during radiotherapy for rectal cancer. European Journal of Cancer 39 (5), 587e594. €m, Y., Runesdotter, S., Furst, C.J., 2007. The psychometric Hagelin, C.L., Wengstro properties of the Swedish Multidimensional Fatigue Inventory MFI-20 in four different populations. Acta Oncologica 46 (1), 97e104. Jakobsson, S., Ahlberg, K., Taft, C., Ekman, T., 2010. Exploring a link between fatigue and intestinal injury during pelvic radiotherapy. The Oncologist 15 (9), 1009e1015. Khalid, U., McGough, C., Hackett, C., Blake, P., Harrington, K.J., Khoo, V.S., et al., 2006. A modified inflammatory bowel disease questionnaire and the Vaizey Incontinence questionnaire are more sensitive measures of acute gastrointestinal
S. Jakobsson et al. / European Journal of Oncology Nursing 19 (2015) 301e309 toxicity during pelvic radiotherapy than RTOG grading. International Journal of Radiation Oncology, Biology, Physics 64 (5), 1432e1441. Lally, R.M., 2010. Acclimating to breast cancer: a process of maintaining selfintegrity in the pretreatment period. Cancer Nursing 33 (4), 268e279. Lincoln, Y.S., Guba, E.G., 1985. Naturalistic Inquiry. Sage, Beverly Hills, Calif. €ller, A., Ekman, T., Wallgren, A., 1999. A qualitative study to Magnusson, K., Mo explore the experience of fatigue in cancer patients. European Journal of Cancer Care 8 (4), 224e232. Morse, J., Niehaus, L., Wolfe, R., Wilkins, S., 2006. The role of the theoretical drive in maintaining validity in mixed-method research. Qualitative Research in Psychology 3, 279e291. Morse, J., 1997. Responding to threats to integrity of self. Advances in Nursing Science 19 (4), 21e36. Morse, J., 2001. Toward a praxis theory of suffering. Advances in Nursing Science 24 (1), 47e59. Morse, J., 2003. Principles of mixed methods and multimethod research design. In: Tashakkori, A., Teddlie, C. (Eds.), Handbook of Mixed Methods in Social & Behavioral Research. SAGE Publications, Thousand Oaks, Calif., pp. 186e208. Morse, J., O'Brien, B., 1995. Preserving self: from victim, to patient, to disabled person. Journal of Advanced Nursing 21 (5), 886e896. Nout, R.A., Putter, H., Jurgenliemk-Schulz, I.M., Jobsen, J.J., Lutgens, L.C., van der Steen-Banasik, E.M., et al., 2009. Quality of life after pelvic radiotherapy or
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Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Living through pelvic radiotherapy:A mixed method study of self-care activities and distressful symptoms Sofie Jakobsson a, *, Tor Ekman b, Karin Ahlberg a a b
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Sweden Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden
a b s t r a c t Keywords: Nursing: illness and disease Experiences Symptom management Mixed-method Radiotherapy
Purpose: To explore patients' experience of their illness when undergoing pelvic radiotherapy by describing the presence and severity of distressful symptoms and to explore initiated self-care activities in response to illness and symptoms. Methods: A mixed-method study was performed which included a core qualitative dataset and a supplementary quantitative dataset. Twenty-nine women undergoing five weeks of radiotherapy were prospectively interviewed during five weeks of treatment in order to capture experiences, distressful symptoms and quality of life during treatment. Grounded theory formed collection and analysis of the qualitative dataset and statistics were used to analyze the quantitative dataset. Results: A maintained self-identity was concluded as being central during the trajectory of treatment. Initiated self-care activities served to alleviate physical, emotional, and social suffering; helping the respondents keep their integrity and sense of self. Previous life experiences influenced the process of being able to maintain self-identity. The gastrointestinal symptoms and pain caused most distress. Conclusions: In order to be able to maintain self-identity patients endure treatment by focusing on symptoms, on getting cured and on their self-image. Several distressful symptoms implied social limitations and a sense that the body would not take the strain. The result of this study can help health care professionals to gain a better understanding of the struggle to endure pelvic radiotherapy. Further, health care professionals should be more proactive in alleviating their patients' distressful symptoms. The results imply that previous life experiences should precede initiated interventions because these life experiences affect the patients' self-care activities. © 2014 Elsevier Ltd. All rights reserved.
Introduction Patients undergoing pelvic radiotherapy report an increased incidence and intensity of fatigue during treatment (Ahlberg et al., 2005a; Poirier, 2006; Purcell et al., 2010) and state that their fatigue affects their physical and social well-being (Ahlberg et al., 2005b; Magnusson et al., 1999). Patients also report frequent gastrointestinal symptoms including diarrhea, nausea, and pain, as highlighted in several studies (Ahlberg et al., 2005a; Christman et al., 2001; Guren et al., 2003; Khalid et al., 2006). Alleviating symptoms is an intentional activity, initiated by the person who is experiencing a symptom or by the health care professional (Dodd et al., 2001; Fu et al., 2004). Orem et al. (2001)
* Corresponding author. Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden. Tel.: þ46 317866059; fax: þ46 317866050. E-mail address: sofi[email protected] (S. Jakobsson). http://dx.doi.org/10.1016/j.ejon.2014.10.014 1462-3889/© 2014 Elsevier Ltd. All rights reserved.
describes self-care as the activities that a person initiates and performs to sustain health, well-being, and life. In a study by Magnusson et al. (1999), patients reported reading, listening to music, taking a nap, and planning ahead as strategies to alleviate fatigue. Similar activities were reported by Fitch et al. (2008) and by Williams et al. (2010). Abayomi et al. (2005) showed that, in order to alleviate gastrointestinal symptoms, women initiated several food restrictions during and after pelvic radiotherapy, including eating less and decreasing their intake of fibers, vegetables, and fruit. The study reported in this paper is part of a research program concerning the alleviation of fatigue and other distressful symptoms in patients who undergo treatment for pelvic radiotherapy. The program includes a new intervention to alleviate distressful symptoms, based on a link between fatigue and intestinal injury (Jakobsson et al., 2010). Before introducing a new intervention for alleviating symptoms during pelvic radiotherapy we wanted to explore patients' experience of their illness when undergoing pelvic radiotherapy; we aimed to describe the presence and severity of
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distressful symptoms and to explore initiated self-care activities in response to illness and symptoms. Methods
five weeks of radiotherapy. For a study to be performed with a mixed-method approach there should be an integration of data at one or more stages of the research process. Having simultaneously collected all data and separately analyzed the different datasets, we made an overall interpretation of the findings (Fig. 1).
Design Setting We performed a study with a mixed-method approach comprising both qualitative and quantitative data. With reference to Morse's (2003) definition of mixed-method designs, this study has a QUAL þ quan design, which indicates that the qualitative data is the core component (QUAL) and the quantitative data (quan) serves as a supplemental dataset to inform the core component. The design involves collecting the two different components simultaneously, with the core component directing data collection, analysis and interpretation of the data (Morse et al., 2006). The reason for collecting different datasets in our study was to expand and better understand the experience of undergoing pelvic radiotherapy; the different datasets represent two different perspectives on the same problem (Morse et al., 2006). The QUAL þ quan design with simultaneously collected data included both open and structured interviews, which involved the first author (SJ) meeting with and interviewing each respondent three to four times during their
The present study was conducted in an outpatient radiotherapy unit at a university hospital in Sweden, a unit caring for approximately 2800 patients each year. This study adheres to the Declaration of Helsinki and was approved by the ethical board of the University of Gothenburg (diary no. 009-08). Recruitment The first five patients were informed about the study at the hospital before start of radiotherapy. However, as the researcher perceived this hospital visit to be an inappropriate occasion because the patient is already fully occupied, the procedure was changed and information was sent out to subsequent potential participants by mail. The patients were then contacted by telephone a few days later by the first author (SJ) to enquire about their
Theoretical drive Inductive QUAL
Enhancing understanding Deductive quan
Core Component Grounded Theory
Simultaneous Supplemental Component Questionnaires
Open interviews n=15
Structured interviews n=29
Experience of illness Self-care activities
Symptom experiences Health-related quality of life
Grounded theory
Statistical analysis
Findings
Results
Overall interpretation
Fig. 1. Methods within the QUAL þ quan design.
S. Jakobsson et al. / European Journal of Oncology Nursing 19 (2015) 301e309
interest in participation. The researcher responsible for recruitment and data collection was not involved in the care of the respondents. All the patients who decided to participate signed an informed consent form before data collection. Participants A total of 65 patients with uterine or anal cancer were eligible for inclusion over one year. The inclusion criteria were 1) scheduled to receive curative radiotherapy in 2 Gray (Gy) fractions of up to 46 or 66 Gy, 2) an ability to speak and understand Swedish and 3) an ability to understand the aim of the study. Fifteen of the 65 patients did not fulfill the inclusion criteria, 17 declined to participate in the study and three women were not seen to inform them of the study. Thirty women agreed to participate. One patient with uterine cancer dropped out of the study after baseline, leaving 29 patients in the study (Table 1). Qualitative dataset Data collection of the qualitative dataset Fifteen of the 29 participants (Table 1) were interviewed in an open interview to more thoroughly explore their experiences and the self-care activities they had initiated. The aim was to collect retrospective stories of living through treatment which resulted in 11 interviews being conducted at the end of treatment and four being conducted one to four weeks after treatment according to respondents' preferences. Two open questions guided the interviews: “What was it like for you going through this period of treatment?” and “What were your thoughts and feelings when you started treatment?” The focus for the interviews was the respondent's story, and follow-up questions related to how the interviewee coped with undergoing radiotherapy. The interviews were performed using Grounded Theory (GT)- methodology
Table 1 Respondents characteristics. Characteristics
Diagnosis (n) Uterine cancer Anal cancer Surgery (uterine cancer) (n) Pre- treatment Chemotherapy (n) Pre- treatment Radiotherapy (n) 46 Gy 66 Gy Ethnicity (n) Swedish European Education (n) Elementary High School University Social status (n) Married Single Live-apart Occupation during treatment (n) Part-time work Sick-leave Retired Md years of age (range)
Structured interviews
Open interviews
n ¼ 29
n ¼ 15
19 10
8 7
19
8
10
6
19 10
8 7
27 2
13 2
8 11 10
3 8 4
17 10 2
9 5 1
3 12 14 64 (49e85)
3 6 6 63 (49e85)
303
(Glaser and Strauss, 1967). GT has its roots in symbolic interaction and contains both induction and deduction. It aims to generate theories reflecting processes and actions from the context in which the theories will later be applied (Charmaz, 2006; Glaser and Strauss, 1967), which made GT a suitable approach for this study. GT has developed into different branches, of which the constructivist version is one (Charmaz, 2006). Initially, strategic sampling was used to capture a wide range of experiences. The concurrent data collection and analysis opened up for theoretical sampling between respondents with different intensity of symptoms in order to identify conditions affecting the categories that emerged (Charmaz, 2006). Interviews were carried out until saturation of the categories was established. The interviews, conducted by the first author (SJ), lasted from 20 to 60 min and all but one was recorded.
Analysis of the qualitative dataset The data analysis process was performed concurrently with continued data collection. All data was read as a whole and thereafter analyzed step by step. Substantial statements were classified into tangible codes that remained close to the original statements. These codes formed a basis for more abstract interpretation and coding into different categories (Charmaz, 2006). The characteristics of each category were sought through theoretical coding, with the final steps including a relational aspect between the categories that together formed a core category.
Quantitative dataset Data collection of the quantitative dataset All 29 patients were interviewed prospectively in structured interviews. These interviews were performed at baseline, after three weeks and at the end of treatment to collect data concerning symptom experience (frequency, intensity, and distress), self-care activities, and functioning. In the structured interviews items and response alternatives from questionnaires were read to the respondents in the order they appeared in the scales. All respondents had a copy of the questionnaires in front of them. In a few cases where face-to-face interviews were not possible, this data collection was conducted over the telephone. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) (Aaronson et al., 1993) was used to assess global health status and aspects of health-related quality of life. In addition, the Multidimensional Fatigue Inventory-20 (MFI-20) Swedish version, (Hagelin et al., 2007; Smets et al., 1995) was used to investigate the experience of cancer-related fatigue. Patients also graded their severity of fatigue and the distress it caused on a scale of 0e10. They were also asked to describe other symptoms that caused them distress in an open-ended question. To more thoroughly understand the impact of distressful symptoms, the patients were asked to rank the three most distressful symptoms and to explain why these were the most distressful. Open-ended questions related specifically to self-care activities for fatigue and diarrhea, consumption of medicines in relation to diarrhea and nausea, as well as self-initiated alternatives concerning dietary supplements and vitamins. Three questions related to amount of time performing physical exercise and type of exercise performed. When collecting data for the quantitative dataset respondents often expressed their thoughts and gave details of their experiences of going through treatment. In line with the methodology of grounded theory, which concludes that all data should be considered as valuable (Charmaz, 2006, 2009), these reflections were noted and collated as field notes.
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Analysis of the quantitative dataset Changes over time in intensity and distress of symptoms, functional subscales and global health/and quality of life were analyzed with the non-parametric Friedman test followed by the Wilcoxon signed-rank test because of skewed distributions of the data. All tests were two-tailed and a significance level of p < 0.05 was applied. Answers to the open questions pertaining to distressful symptoms and self-care activities were sorted in categories according to what was expressed. All categories were analyzed descriptively quantifying the number of patients who had reported each category. Findings Living through pelvic radiotherapy with a maintained self-identity Being able to maintain self-identity when living through pelvic radiotherapy formed the core category of the findings from this study. The categories and the dimensions which were of importance for the process of maintaining self-identity are visualized in Fig. 2. The process was understood to be comprised of three categories: (a) Focusing on symptoms (b) Focusing on getting cured and (c) Focusing on self-image. The self-care activities described in the categories and dimensions served to alleviate physical, emotional, and social suffering; they are interpreted as helping the respondents keep their integrity and sense of self. The responses to maintain self-identity all co-varied during treatment. Previous life experiences influenced the process of being able to maintain selfidentity (Fig. 2). Previous life experiences influenced and guided the patients through this unfamiliar period, prompting them to relate and act on experiences from the whole spectrum of life. Some saw themselves as having been strong since childhood and/or able to see things from different perspectives. In some cases, respondents pointed to education as a resource to draw on in determining how to act, for example, in choosing to be mentally strong. Moreover, both positive and negative experiences of ill health in themselves, in significant others, or in friends provided a basis for relating to different situations. Personal experiences could determine whether or not to talk about the illness or which expectations to have of this course of treatment. This strategy of using previous life experiences, of both reflective and direct character, also assisted the respondents in knowing how to handle a crisis and
Table 2 Global Health status and quality of life, functioning and symptoms during pelvic radiotherapy. Subscales
Baseline Md (25e75%)
3rd week Md (25e75%)
5th week Md (25e75%)
Global health status Physical functioning Cognitive functioning Role functioning Social functioning Emotional functioning Financial difficulties Diarrhea Fatigue Pain Nausea/Vomiting Loss of appetite Insomnia
67 93 83 50 67 83 0 0 11 0 0 0 0
58 87 100 50 67 92 0 66 33 25 17 33 0
50*(33e67) 80*(67e90) 83 (67e100) 33 (25e67) 50*(33e75) 92 (71e100) 0 (0e0) 66**(33e67) 44**(28e78) 33**(17e83) 17**(0e33) 33**(0e67) 33 (0e67)
(48e83) (70e100) (67e100) (33e100) (50e100) (75e92) (0e17) (0e0) (0e50) (0e17) (0e4) (0e0) (0e67)
European Organization for research and Treatment of cancer Quality of Life Questionnaire. Scores from 0 to 100: high scores represent high global health/quality of life, high level of functioning and high level of symptomatology. Friedman test *p < 0.05, **p < 0.001, n ¼ 25 on all subscales but diarrhea, pain, nausea/vomiting and global health status were n ¼ 26.
which self-care activities to initiate in relation to experienced symptoms. “Yes, but maybe it's the case that in other situations when stuff has happened, I might have reacted like this.” “But first of all it was worse when I thought about my brother because he didn't make it … it was five months, you know.” Thus, affected physical functioning, role and social functioning were all evident, as well as decreased global health status and quality of life (Table 2). Between baseline and five weeks of treatment, 15 respondents reported great change (greater than 20 points difference) in their quality of life as assessed by EORTC QLQ-C30, and four reported moderate change (1020 points difference) (Osoba et al., 1998). Three had unaltered quality of life and five reported an increase in quality of life, all of whom reported low (<50) quality of life at the beginning of treatment. Some respondents stated that enduring this treatment would probably change them in some way: it would make them more empathic to others, and they would reflect more on the content of life and their relationships with people. The experience of living
Focusing … on symptoms
- By making sense of - By taking actions
(33e75) (63e93) (83e100) (25e92) (33e83) (75e100) (0e17) (33e67) (22e67) (12e54) (0e33) (0e33) (0e50)
… on getting cured
- By putting life on hold - By doing one´s best
… on self-image
- By shaping others perceptions - By getting support
Through … previous life experiences
Fig. 2. The process of living through pelvic radiotherapy with a maintained self-identity.
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through treatment would now be a part of them and could shape them later on in life; however, it was too early to predict the possible changes. Having gone through treatment gave them strength, self-respect and pride. Focusing on symptoms The radiotherapy treatment contributed to several physical symptoms, and the consequent impact on the body was evident. To be able to make sense of these physical symptom experiences, the respondents constantly reflected over the origin and timing of their symptoms in relation to ongoing treatment and previous life experiences. “It (the tiredness) depended on other factors, of course e I had problems with diabetes too, and because I had those problems I was a little afraid that my body wouldn't be able to perform the way that was expected of me.” “No, I don't have an explanation, I don't know. It seems so illogical. I should have been at my healthiest that day.” “Saturday and Sunday nothing, Monday nothing, but yesterday there was. Then I got such a shivering fit. But I don't know whether it's because I was tired or if it's the radiation.” “But if it's the case now that I might get temporary lactose intolerance, I've drunk sparkling mineral water of course, and to get vitamin C it's cabbage, which isn't that good for the stomach e so you have to learn how to handle it all.” Physical symptoms were important for whether the respondents felt ill or not. Being ill in a specific, limited part of the body, having no distressful symptoms, not being in pain, being able to care for themselves, and feeling alert in body and mind were interpreted as making the struggle of maintaining self-identity easier. Respondents often expressed that their mind felt well but their bodies, or parts of their bodies, were ill. Being told that distressful symptoms would be short-lived made symptoms easier to endure. Current and previous experiences influenced the way respondents cared for their bodies. They took action, learned, reflected and took action again. Bodily care could preoccupy the respondents throughout the day, and distressful symptoms many times affected and directed daily activities. Dietary modifications to alleviate gastrointestinal symptoms consisted of eating smaller meals, eating less frequently, and not eating vegetables. Depending on personal preferences, opinions varied greatly as to what foods to avoid, for example coffee, milk, or bread. “All I do is look after myself all day long.” “I've learnt that I have to eat small, small portions and kind of proceed with caution.” The respondents stated that increased night sleep, extended daytime rest and preventive inactivity were their immediate responses to alleviate their sense of fatigue. The respondents also
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Table 4 Severity and distress from fatigue during pelvic radiotherapy. Time-points
Severity Md (25e75%)
Distress Md (25e75%)
Baseline 3rd week 5th week
0 (0e4) 6 (3e8) 7 (4e8)*
0 (0e5) 5 (2e7) 6 (4e8)*
Scale of 0e10. Friedman test (n ¼ 25) *p < 0.001.
reported decreased physical activity because of an increased sense of fatigue and the urgency to defecate without or with little forewarning. At the start of treatment, a few respondents performed physical activity repeatedly during the week while others were fortified through daily walks. At the end of treatment, no-one performed strenuous physical activity and only a few took daily walks, although many emphasized that going outdoors to the garden or out in the countryside was important for their existential recovery. The use of anti-diarrhea medications varied according to the respondents own preferences, with a daily intake of 0e6 tablets at the end of treatment (medium dose: two tablets/day). The fear of constipation limited the use of such medication. The use of medications to eliminate nausea was also a matter of personal preference. Five respondents took vitamins at the start of treatment but this number decreased to two by the end of treatment. At the end of treatment, five took daily liquid nutritional supplements and four took supplements with lactobacillus. At baseline, eight of the 29 patients were most distressed by worrying about their illness and the upcoming treatment. Twelve experienced other distressing symptoms and nine were not distressed at all by any symptom at baseline. After three weeks of treatment, 60% of the patients ranked gastrointestinal symptoms as the most distressing symptom, including diarrhea, nausea, appetite loss, and abdominal pain. As seen in Table 2, these symptoms increased during the first three weeks. After five weeks of treatment, gastrointestinal symptoms were still ranked as the most distressing symptoms, together with pain from the skin reaction and anal pain. The majority of respondents with anal cancer ranked pain as the most distressing symptom at the end of their treatment period. The pain made it hard to sit and to walk, and going to the toilet was associated with pain and anxiety. Fatigue was reported by most respondents as the second most distressing symptom after three and five weeks of treatment. There was a significant increase in fatigue in four out of five subscales of the MFI-20 (Table 3), as well as a significant increase in intensity and distress from fatigue as measured on a 0e10 scale (Table 4). Pain increased significantly during the whole treatment period (Table 2). The experience of pain differed between the two groups: patients with uterine cancer experienced pain in the abdomen, and patients with anal cancer experienced anal pain because of the adjacent skin reaction. Patients also described fecal urgency and incontinence, anal burning and itching, and increased urinary urgency. As shown in Table 5, being socially limited and the marked effect on the body were the most common reasons for experiencing symptoms as distressful.
Table 3 Fatigue at baseline, after 3 and 5 weeks of treatment assessed by The Multidimensional Fatigue Inventory-20.
Baseline 3rd week 5th week
General fatigue Md (25e75%)
Physical fatigue Md (25e75%)
Reduced activity Md (25e75%)
Reduced motivation Md (25e75%)
Mental fatigue Md (25e75%)
8 (5e15) 12.5 (9e17) 15*(12e19)
8.5 (5e14) 12.5 (6e18) 13*(12e18)
9 (5e16) 15 (12e19) 16*(13e20)
6 (4e11) 9 (4e14) 12*(7.5e14)
8 (6e11) 9.5 (6e11) 10 (6e13)
Response scores from 4 to 20; higher scores represent greater fatigue. Wilcoxon signed rank test, * p-value <0.001 between baseline and 5th Week of treatment (n ¼ 28).
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Because of the symptoms experienced, the respondents were forced to restrict their social life and into a situation of always having to be near a toilet and engaging in fewer social activities at home and with other outside the home. Distressful symptoms made their bodies weak so they were afraid that they would not take the strain. Many experienced that their bodies did not respond to what their minds set out to do.
significant others: protecting them from facts about their illness or doing less around the house, in accordance with their loved ones' wishes.
Focusing on getting cured Choosing to undergo treatment was based on an active decision to fight for survival after the diagnosis, with radiotherapy serving as a means for them to survive. Opting out of radiotherapy was not an option for any of the respondents. The two eldest (aged 82 and 85) expressed a wish to more thoroughly discuss the treatment in relation to their age, but they never intended to abstain from treatment. All the respondents expressed a wish to start treatment immediately as they lacked any own alternative strategy to fight cancer. Many found themselves in a situation where they were powerless to help themselves against cancer.
Respondents indicated that the hope of being cured from cancer made the duration of treatment easier to bear. Hopeful expressions from health care professionals such as “this is a treatment to be on the safe side”, “this is a good cancer” or assurances that they would see their grandchildren grow up were deemed helpful during treatment.
“Because the doctors have said you'll get a tough treatment, you'll get tough cytotoxic treatment … yes please, you say. And then you'll get a lot of very strong radiation … yes please.”
At the start of treatment respondents saw themselves as healthier than ill, which implied a hope of being cured. However, their perception of illness grew as treatment progressed, as distressful symptoms increased and as quality of life decreased.
It was impossible to know what to expect experientially from the course of treatment, or to predict the outcome. Some of the respondents were anxious before treatment and when prescheduled changes were made. Others did not worry; instead focusing on the fact that something was being done. Nevertheless, undergoing treatment was the respondents' highest priority and other things in life were put on hold. “I can't think about anything else, I don't have any other activities.” “Focusing on getting well. And only focusing on that.” “When it was whole weeks I only thought as far as Friday. When I'd got there, I'd done it and thought in terms of a quarter, a third, half.” Respondents expressed a need to live one day or one week at a time. To map out the time more clearly, some respondents set out yardsticks for themselves during their treatment. Even though respondents wanted the treatment period to pass as quickly as possible, they stated that days without radiotherapy were important. On such days the body was given a chance to recover, which provided hope of recovery after treatment. In this totally novel and unimaginable situation the respondents were determined not only to cooperate with other peoples' demands but also to do their best. “Generally you just have to pull yourself together occasionally so that you're not just sitting there.” Many stated that they put demands on themselves not to lean back and rely on others, and felt a personal responsibility to actively contribute to the successful completion of the treatment. Doing one's best implied trying to be positive and grateful. Respondents stated that it was important to try to have positive thoughts every day, and some related this to being positive by nature, while others had to be more active in preventing negative thoughts from gaining upper hand. Gratitude was expressed in relation to treatment being available and in relation to any assistance and care provided. The respondents also did their best to act in the best interest of their
“In the midst of this hell I've been given the gift of being a bit more easy going; we can laugh about it and even about tummy trouble, we laugh at those accidents and everything like that … it has gone really well.”
“When you get confirmation like that and it comes from such an experienced doctor who's had so many of these, you're convinced that it's now on track to really being ok.”
Focusing on self-image Respondents' activities for shaping other people's perceptions of them and receiving strength from support formed this category. To endure this period in life, respondents emphasized the need for support from others such as significant others, other individuals undergoing cancer treatment and health care professionals. Significant others gave strength by being confirmative to the respondents' feelings and needs; their support also including calling, sending cards, and helping with day-to-day activities such as household chores. “I've had a lot of support around me, friends and family.” “I've kind have got it all e a network who support and help me, and that's really positive. It surprises me actually, how many of them there are.” Such support gave the respondents the opportunity to focus on themselves. Respondents expressed the view that other individuals undergoing cancer treatment had a greater understanding of the situation than significant others and that these fellow patients were supportive by sharing and confirming experiences, making time pass together, laughing and talking. Supportive health care professionals were also said to be important, such caregivers being characterized as happy, empathetic and confirmative, and spending time chatting or making friendly gestures, such as giving a pat on the shoulder.
Table 5 Reported implications due to distressful symptoms. Implicationsa
3rd week (n)
5th week (n)
Social limitations Impact on the body Unalleviated pain Feeling of powerlessness Altered self-image Concerns about the future
17 9 6 3 4 1
18 11 6 5 2 2
a
More than one response is possible.
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“The main thing is that it's really important that all the staff are really nice to you when you're not feeling this well.” Nevertheless, the health care professionals were perceived as being busy and not always confirmative of the respondents' experiences, thus creating a barrier to the communication of the respondents' daily distress. Respondents felt safe when they were surrounded by experts on cancer and cancer treatment. The respondents in our study disliked the fact that they had now become individuals with cancer, and did not want to be treated differently to how they were before their diagnosis. “She has cancer … they think I'm going to die. But I don't feel that way.” They did not want to be seen as a different person and some indicated that they did not want to be pitied. They demonstrated this by being very conscious of their own actions and manners in different social situations, in which they tried to act like their former selves as much as possible. “So I'm loud and I swear like I usually do and that. So that they see I'm not that very different.” The respondents did not always admit to significant others that they had thoughts of death and cancer because these thoughts were considered to be too frightening and morbid and might have adversely affected how others saw them. Many felt uncomfortable using the word ‘cancer’. “It's probably because otherwise, if I use those emotionally charged words, it's easy for the person who's listening to stop listening e they can't cope with listening and absorbing it.” Respondents varied as to whether or not they would tell significant others about their cancer diagnosis and treatment. Some wanted to disclose it immediately to show that there was an open climate and to prevent others from making their own interpretations of the situation; some postponed disclosure to gather more information before they told children, relatives and workmates. Respondents with a partner who found it difficult to relate to the fact that their loved one was ill felt a sense of being abandoned and experienced a lack of support. Discussion The findings of this study highlight what can enable a person to undergo pelvic radiotherapy. The core of maintaining self-identity, with its existential character, related to the experience of being struck by an acute illness, cancer, and not only to the fact of undergoing treatment. Focusing on symptoms, on getting cured and on self-image made the treatment endurable and provided strategies to maintain self-identity. The importance of preserving oneself has been described earlier but primarily in relation to chronic illness (Charmaz, 1983; Morse and O'Brien, 1995). In the model Responding to Threats to Integrity of Self, Morse (1997) describes different stages from vigilance to enduring to suffering that are assumed to happen sequentially when someone experiences illness by traumatic injury. This model later developed into a model of responses of suffering by the process of interaction between enduring and emotional suffering (Morse, 2001). In the light of these models, the respondents are interpreted to be enduring treatment by enduring to live and striving to regain a sense of self. However, the emotional suffering described by Morse (2001) and
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by our respondents in relation to the message of a cancer diagnosis, is not visible during treatment. There can be several explanations for this. The activities for enduring may have the upper hand; alternatively emotional suffering may be stifled, or the respondents may release their emotional suffering within the confines of their homes, as has been suggested by Morse (2001). The timing of the open interviews, providing retrospective stories, could also have influenced the fact that the respondents viewed the treatment period from a different perspective. The respondents were active in maintaining their self-identity throughout treatment by continuously reflecting on and interpreting their experiences. The results show the importance of confirming and highlighting patients' previous and current experiences as a basis for ongoing care to assist patients in their efforts to live through treatment with maintained self-identity. It was evident that they related to and were influenced by their previous life experiences when interpreting the situation and initiating self-care activities. Lally (2010) stated that past life-altering experiences negatively influence the situation for women prior to their commencing cancer treatment. In our study, previous life experiences mostly had a positive influence in guiding the respondents as to how to handle living through treatment. Focusing on symptoms was a part of maintaining self-identity. During treatment, patients were highly distressed by their symptoms. The gastrointestinal symptoms of diarrhea, abdominal pain, and nausea caused the highest distress for the respondents and these symptoms have been reported in previous studies (Ahlberg et al., 2005a; Guren et al., 2003; Khalid et al., 2006; Nout et al., 2009). In keeping with the findings of Furst and Ahsberg (2001), our study showed a high increase in general fatigue, physical fatigue and reduced activity throughout the course of treatment, thus demonstrating its strong physical impact. The symptoms caused most distress, mainly because of the social limitations and physical impact. The described limitations in social and role functioning were influenced by the impact of distressful symptoms, a disrupted public self (Charmaz, 1983), and focusing on getting cured. In maintaining self-identity, respondents had to take a step back from life going on around them. Impacts on role, social and physical functioning were apparent in the EORTC QLQ-C30 functional scales, as well as decreased quality of life, in agreement with previous studies (Ahlberg et al., 2005b). The social impact on patients' lives has been shown to last a long time after treatment (Abayomi et al., 2009; Abayomi et al., 2005; Nout et al., 2009; Welzel et al., 2011). Emotional functioning showed a non-significant increase during treatment which was interpreted as reflecting a maintained selfidentity by undergoing treatment. The importance of appearing normal in the social interaction with others when undergoing cancer treatment has been described from earlier narratives (Ekman et al., 2004). Interventions aimed at alleviating the physical distress of experienced symptoms could alleviate some of the physical distress of living through pelvic radiotherapy. According to the National Comprehensive Cancer Network (Berger et al., 2012), pain, sleep disturbance, anemia, nutritional status, activity level, co-morbidity and emotional distress should be evaluated before introducing specific interventions against fatigue. In relation to the findings of this study showing that gastrointestinal symptoms cause most distress and that there is a correlation between diarrhea and fatigue (Ahlberg et al., 2005a; Jakobsson et al., 2010), interventions to alleviate gastrointestinal symptoms should also be prioritized in alleviating fatigue. Physical activity has been shown to have an alleviating effect on fatigue during and after cancer treatment (Duijts et al., 2011; Cramp and Byron-Daniel, 2012). The findings of this study, in line with others (Magnusson et al., 1999; Williams et al., 2010), highlight patients' efforts to alleviate fatigue by
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sleeping more and reducing physical activity. In the group of patients with anal cancer, it is important to acknowledge the excessive skin reaction, which rules out physical activity. Methodological issues In agreement with Charmaz (2006) it is believed that the data from the interviews were shaped by the respondent and interviewer together. Trustworthiness was enhanced in the present study through strategies for credibility (Charmaz, 2006; Lincoln and Guba, 1985), transferability, and dependability (Lincoln and Guba, 1985). The findings grounded in the data benefited from the longitudinal design and multiple encounters between the respondent and the interviewer, the face-to-face interviews contributing to rich data and altogether enhancing credibility. The multiple encounters served as a basis for creating a relationship that encouraged the respondents to feel safe and willing to share their experiences, feelings, and thoughts. Many of the respondents stated that it was positive to meet someone who would listen to their stories and ask about their well-being and their perceived problems. The longitudinal design comprised of both open and structured interviews, and the retrospective stories covering the treatment period gave rich data on the experience, which, together with perceived data saturation, determined the sample size for the open interviews. Dependability was enhanced by the fact that the context was new to the interviewer and an effort was made to maintain concurrent data collection and data analysis. This study was performed as a mixed method study with a longitudinal design, whereby interviews and questionnaires complemented each other. The interviews gave insight on the limitations and opportunities presented by living through treatment and the self-care activities that respondents initiated. The questionnaires included aspects of symptom distress and limitations in health-related quality of life. By choosing a mixed method approach we gained a richer overall picture of the experience. The narrow inclusion criteria of including patients going through pelvic radiotherapy served as a base for a better understanding of the symptom experience for these patients. However, the findings have been understood in the wider context of undergoing treatment with a curative intention, but they cannot be directly applied to the understanding of undergoing palliative treatment. There were no men among the respondents which is a limitation of this study. Patients who declined to join the study were significantly older than those who joined, median age being 71 (range 61e90). Reasons for declining were “not enough energy to cope with both radiotherapy and this study” (n ¼ 13), “lack of interest” (n ¼ 2), “feel too old (n ¼ 1) and feel too sad” (n ¼ 1). Conclusions To endure pelvic radiotherapy, patients described how they focused on symptoms, on getting cured, and on their self-image thus providing strategies to maintain self-identity. Several distressful symptoms involved social limitations and gave a sense that the body would not take the strain. Clinical implications The result of this study can help health care professionals for this patient population to gain a better understanding of the struggle to endure pelvic radiotherapy. Furthermore, it shows that they should be more proactive in alleviating their patients' distressful symptoms, including gastrointestinal symptoms, fatigue, and pain. This would prevent the trial and error situation involving patients' own efforts to alleviate experienced symptoms.
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