Copyright B 2015 Wolters Kluwer Health, Inc. All rights reserved.
Suzanne S. Dickerson, DNS, RN Eman Abbu Sabbah, MS, RN Sandra Gothard, MS, RN Patricia Zeigler, NP, RN Hongbin Chen, MD, PhD Lynn M. Steinbrenner, MD Grace E. Dean, PhD, RN
Experiences of Patients With Advanced Lung Cancer Being Resigned to Sleep-Wake Disturbances While Maintaining Hope for Optimal Treatment Outcomes
K E Y
W O R D S
Background: Sleep-wake disturbances are prevalent in patients with lung cancer
Hermeneutics
yet are infrequently studied over time. This article reports on the qualitative results of
Hope
a mixed-methods study of newly diagnosed patients’ narratives over 6 months.
Lung cancer
Objective: The objective of this study was to gain an understanding of the treatment
Sleep disturbance
and illness trajectory related to sleep-wake disturbances as well as the beliefs and practices of patients while seeking optimal treatment outcomes. Methods: Longitudinal interview narratives of 26 patients’ experiences with advanced lung cancer diagnosis (at baseline, preYsecond and third treatment, and 6 months) were obtained from participants recruited from Veterans Administration Hospital Center and a Comprehensive Cancer Center in Northeast United States. Analysis of illness narratives used interpretive phenomenology based on Heideggarian hermeneutic traditions. Results: At diagnosis, participants described poor sleep such as trouble falling asleep and frequent awakenings. Over time, as the treatment worsened their sleep symptoms, these participants still maintained hope for more time with treatment. This focus enabled them to tolerate the sleep-wake disturbances and treatment adverse effects. As the treatment effectiveness declined, their focus changed to spiritual meanings for the future and to keep living life with a purpose.
Author Affiliations: School of Nursing, University at Buffalo, the State University of New York (Drs Dickerson and Dean and Mss Abbu Sabbah and Gothard); VA Western New York Health System (Dr Steinbrenner and Ms Zeigler); and Department of Medicine at Roswell Park Cancer Institute and School of Medicine, Buffalo, New York, and Biomedical Sciences at the University at Buffalo, the State University of New York (Dr Chen). This study was funded by ONS Foundation and the National Lung Cancer Partnership Lung Cancer Research Grant. This work in part was conducted at, and supported by, VA Western New York Healthcare System, Buffalo, New York.
The contents of this article do not represent the views of the Department of Veterans Affairs or the US government. The authors have no conflicts of interest to disclose. Correspondence: Suzanne S. Dickerson, DNS, RN, School of Nursing, University at Buffalo, the State University of New York, 301E Wende Hall, 3435 Main St, Buffalo, NY 14214 ([email protected]). Accepted for publication August 19, 2014. DOI: 10.1097/NCC.0000000000000206
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Conclusions: By explicating lung cancer patients’ experiences with sleep-wake disturbances, nurses will gain insight into potential interventions to improve sleep and support effective outcomes as well as open a dialogue about hope. Implications for Practice: Findings offer insight for oncology nurses to provide opportunities for dialogue about treatment options and techniques to improve sleep, which will facilitate patients living their lives.
L
ung cancer is the second most common cancer in the United States and in 2012 contributed to a yearly worldwide mortality rate of 1.4 million.1 Despite improved treatment approaches, according to the American Cancer Society, the US 5-year survival rate for nonYsmall cell lung cancer (NSCLC) reached only 17%.2 A diagnosis of NSCLC has been described as devastating yet not surprising to patients who tend to blame their smoking habits.3,4 Patients with lung cancer dealt with disease- and treatment-related symptoms and threats of disease progression,5Y7 all of which affected their sleep and precipitated sleep-wake disturbances.8 Sleep-wake disturbances related to multidimensional etiologies were reported in 30% to 75% of recently diagnosed/treated cancer patients.8,9 Previous researchers reported high rates of sleep problems in patients with lung cancer, including use of hypnotics (40%), restless leg syndrome (47%), insomnia (52%),10,11 sleep fragmentation,12 excessive daytime sleepiness,13 lethargy,14 difficulty falling asleep, and poor nighttime sleep quality.15,16 Although sleepwake disturbances have been reported as a distressing concern among lung cancer patients,7,16 sleep-wake disturbances are not routinely assessed by healthcare providers17 and are usually undertreated. Other studies showed that the patients themselves underreported their sleep difficulties, which reinforced the failure to notice these problems.3,18,19 Despite the underreporting by patients and clinicians, sleepwake disturbances negatively interfere with lung cancer patients’ cognitive, psychological, and physical function, as well as affect their quality of life.13,17,20 If good sleep is a basic physiologic activity necessary for health and functioning, then poor sleep may contribute to the challenge of a cancer diagnosis21Y23 and critical treatment decision making.24 Therefore, it is important to gain an understanding of the lung cancer patients’ trajectory related to sleepwake disturbances and explicate the patients’ beliefs and practices in managing sleep problems, in order to gain insight into potential approaches to improve sleep. The primary purpose of this article was to report the interpretations of the qualitative components of a mixedmethods longitudinal study of sleep-wake disturbances of patients with NSCLC receiving treatment (at diagnosis, preYsecond treatment, preYthird treatment, and 6 months’ time frame). The aims of the study include (a) exploring sleep-wake disturbances before, during, and after treatment, (b) understanding the patterns of change over time that affected patients’ daily lives, and (c) describing the beliefs and practical knowledge used in managing their sleep difficulties.
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Methodological Approach
This qualitative study used Heideggarian hermeneutics or interpretive phenomenology to guide development of the research
Being Resigned to Sleep-Wake Disturbances
questions that evoked the narrative stories of daily experiences and guided analysis. Hermeneutics is a methodology that interprets the meaning of being human situated in the everyday shared practices, experiences, and concerns as expressed in the participant’s stories. The stories, through language, reflected the self-interpretation of the situated practices that explicated the participants’ experiences (Heidegger1927Y1962). Through analysis of narrative stories, the researchers gained insight into the participants’ challenges of managing treatment effects, poor sleep, and disease. Through reflective interpretation of the patient narratives, common practices and meanings emerged that uncovered understanding of the lived experience.26 The interpretive team was the same team that analyzed the previously published baseline report.3 The first author interviewed the participants at various locations: the treatment centers, participants’ homes, and at times by telephone. Most of the participants were asked open-ended questions about their experiences at diagnosis, their treatment, and their sleep patterns, and participants offered suggestions for other patients who experience cancer treatment. The transcripts of the audio-taped narratives provided the data for analysis using the interpretive phenomenological approach.25,26 The research team met regularly to discuss their individual analysis of each transcript, identifying common themes and shared practices supported by the verbatim excerpts from the text. The team analyzed all transcripts to reach consensus on the common themes and practices that were present across all texts. Any conflicting interpretations were clarified by rereading the text and discussion to reach consensus. A constitutive pattern was identified by the team that linked the related themes together in a statement that reflected the overall pattern of the experience to explicate the experience as lived by the participants. The interpretations were always open to new interpretations by further analysis; however, the circular and reflective process ensured justifiable results were found to interpret the experience.26
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Sample/Setting
Twenty-six individuals newly diagnosed with NSCLC from VA Health System and a Comprehensive Cancer Center agreed to participate in the study when recruited by a nurse practitioner and physician, who routinely care for lung cancer patients and partnered with the researchers on this study. The recruitment occurred at the time of initial diagnosis when patients who met the criteria were asked if they were interested in participating in the study. The healthcare providers forwarded the contact information of interested patients to the research team, who then explained the study and obtained consent. These 2 settings provided Cancer NursingTM, Vol. 38, No. 5, 2015
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socioeconomic and ethnic diversity in the sample. Inclusion criteria included patients older than 18 years, diagnosed with NSCLC, choosing treatment and able to care for themselves (Karnofsky Performance Scale score 970). After institutional review board approval, consent was obtained by the research team prior to the interviews.
Background Themes From Baseline Study
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The interpretations of the initial interviews were previously published in a paper focused on the initial diagnosis of lung cancer.3 There were 4 baseline themes and 1 constitutive pattern, which included: (1) ‘‘diagnosis as devastating, yet not surprising,’’ because the participants associated the diagnosis with their smoking habits. The participants chose chemotherapy and described (2) ‘‘treatment as hope for more time.’’ During the treatment, the participants’ main focus was in (3) ‘‘keeping life as normal,’’ and they focused on continuing their lives and were not overly concerned with their sleep difficulties. When asked to reflect on their sleep, participants described (4) ‘‘sleep habits as long lived.’’ They described insomnia-like patterns, frequent awakenings at night, and racing minds. Their sleep hygiene habits were poor with frequent caffeine intake, napping, and watching TV. Overall constitutive pattern was ‘‘sleep is not a priority when living my life,’’ which reflected the precedence of continuing to live their lives. These initial narratives were included in this analysis as the baseline postdiagnosis-pretreatment narrative, with the subsequent narratives, preYsecond treatment and preYthird treatment, followed by the final interview at 6 months.
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Findings
Four themes and 1 constitutive pattern emerged from the analysis that described patients as being resigned to sleep disturbances, maintaining hope for optimal treatment outcomes, and focusing on living their lives. All of the 26 participants had an advanced stage cancer diagnosis and were receiving treatment, 62% were male, and 15% black with varying education levels. Demographics are summarized in Table 1. Twenty-six participants completed the initial interview, 21 the second, 17 the third, and 8 (30%) the final 6-month interview. Of the 18 participants (70%) who did not complete the final interview, 6 (23%) died, 5 (19%) were known to have entered hospice, and the remainder did not respond to our attempts to contact them. Data collection attrition patterns demonstrated the challenges of longitudinal studies with advanced lung cancer patients.
Theme 1: Beginning the Lung Cancer Journey by Embracing Hope in Treatment The participants’ initial narratives predominantly described their preexisting history of sleep troubles including trouble falling asleep,
waking frequently at night, and poor sleep habits (as reported at baseline).3 As treatment progressed, participants reported the need to take more frequent naps because of ‘‘being so tired’’ because of nighttime awakenings, more frequent nocturia, and trouble with falling back to sleep. While they would talk about their sleep and napping patterns, they often would switch the conversations to their beliefs and attitudes toward living with their cancer diagnosis. After consulting with their providers at diagnosis, all participants chose treatment. They expressed the belief that the treatment would ‘‘not cure but give more time’’ despite the diagnosis, thus enacting hope. Unexpectedly, none of the participants initially discussed their mortality when faced with a lung cancer diagnosis. Instead, they were very confident in the skills of the clinicians and were willing to put their trust in their hands: ‘‘I don’t worry. I put it in the hands of my doctor; it’s their job and training.’’ They used language connoting fighting the disease that engendered a positive mindset, maintaining hope as a driving force to overcome or control the disease. One participant said, ‘‘Cancer is like a chronic illness; I can deal with that.’’ Another participant reflected on his treatment choice: I feel that what I am doing [treatment] is going to be of ultimate benefit to me. I have no assurance of that, but I just have a feeling that if I fight it, it would be better than to just let it happen. Another participant supported his choice for treatment and his need to ‘‘fight back, if you have a chance of beating it, take it; don’t lay down and die; don’t let it take over you; you have to fight back.’’ One man gave his marketing-like motto, ‘‘Got cancer? Take treatment!’’ In summary, as the participants were diagnosed and began treatment, sleep was not a priority for them. Instead, they prioritized their focus on treatment, which engendered an attitude of hope for more time and sleep issues became secondary.
Theme 2: Improvements in Disease Enabling Patients to Tolerate Sleep Disturbance and Treatment Adverse Effects Of the 21 participants who were in the study at time 2 (preYsecond treatment), sleep-related symptoms were more problematic, with participants describing more frequent nighttime awakenings and trouble going back to sleep, but they rationalized that sleep problems were an expected part of the treatment, or related to aging, and otherwise not relevant. As one said, ‘‘I am weary a lot, but aging is aging, there is no remedy for thatI you learn to adjust.’’ The participants’ narratives described increasing weariness and the need to adjust their activities to continue to live their lives. One said, ‘‘My energy is down, [I have] very little energy [and] take 2 naps a day.’’ Another shared that, ‘‘I am more tired than usual, nothing I can’t handle.’’ Another participant reflected on this problem of inability to sleep well and determined that it was not a relevant problem, ‘‘I suggest that you listen to your body and right now it’s telling me I’m all rightVso I’ll take that [his progress] anyway I can get it.’’ The participants’ insomnia-like symptoms were similar to the initial interview at diagnosis; however, the sleep-wake disturbances
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Table 1 & Demographic Variables of Participants (N = 26) Variable
Comprehensive Cancer Center n = 16 (62%)
VA Hospital System n = 10 (38%)
All Participants N = 26
Age (y), mean (SD), range
66.4 (8.9), 47Y80
64.1 (10.2), 49Y84
66 (9.3), 47Y84
Gender Male Female Education High school or below College/graduate Not known Race White Black Comorbidities (from chart review) Cardiovascular Chronic obstructive pulmonary disease Total no., mean (SD), range Treatment adverse effectsVfrom narratives Fatigue Nausea, appetite loss Pain Cough Sleep disturbance
n
n
n
6 10
10 0
16 10
10 4 2
8 2
18 6 2
12 3
9 1 N 15 14 8 (6), 3Y19
22 4
5 (3), 1Y13
were not the main focus of the narratives at times 2 and 3 but were more of an issue in the final narratives. As the treatment progressed, the participants described worsening sleep fragmentation, nighttime awakenings with difficulty returning to sleep, and fatiguelike symptoms. Participants related, ‘‘I wake up in the middle of the night, and it’s hard to go back to sleep’’ and ‘‘I have my days and nights mixed up [from long napping].’’ The participants were not having a consolidated sleep at night. Participants were also dealing with the adverse effects of chemotherapy, which included the need to keep hydrated, which contributed to nocturia. Sleep-related symptoms extracted from the patient descriptions of sleep problems in the narratives were summarized over time in Table 2. The prevailing attitude was to remain positive toward the future and to embrace hope in each small improvement, such as a reduction in tumor size. One said, ‘‘the chemo is working, so it is making me tolerate it [sleep problems] a little better because I know it is working.’’ Their narratives minimized the treatment adverse effects and sleep problems as they often responded that they were ‘‘doing fine.’’ Another participant related that ‘‘If the treatments don’t get worse than this, I’ll make it through.’’
6 (4), 1Y19 16 14 8 3 16
Hope was prominent in the narratives that voiced the message of keeping positive and rationalizing treatment effects as necessary but tolerable. As the participants progressed thorough the initial treatments, at time 3, they continued to carefully assess their prognosis in a positive light, as one related, ‘‘The past few days, I have been eating well and getting back to normalI I do the best I can and keep on going.’’ Another man described his progress, ‘‘I had a scanI and the tumors were sort of stopped.’’ Despite the sleep-wake disturbances, participants who continued in the study described an understanding of their physical limits, and thus clarifying and prioritizing choices in order to participate in meaningful activities to live their lives as normal as possible. One participant, who had a setback of a hospitalization from a pneumonia episode, reflected on the next plans and gratitude for living life, ‘‘Hopefully, I can get outside a little bit more, and I’ll be happy for a while, for this summer anyway. I am just glad to be home.’’ Participants gave suggestions to others regarding their sleep issues. Although much of the advice was not specific to common
Table 2 & Trajectory of Sleep Symptoms as Described in the Narratives Sleep-Related Symptoms From Narratives
Diagnosis (N = 26)
Time 2 (n = 21)
Time 3 (n = 15)
Final (n = 8)
Insomnia-like symptoms: trouble falling asleep and staying asleep Nighttime awakenings: fragmented sleep Racing mind Fatigue-like: ‘‘weary,’’ ‘‘so tired,’’ ‘‘no energy’’
16 11 5 1
8 16 4 13
3 8 2 10
6 6 2 7
Being Resigned to Sleep-Wake Disturbances
(62%) (42%) (19%) (4%)
(38%) (76%) (19%) (62%)
(20%) (53%) (13%) (66%)
(75%) (75%) (25%) (88%)
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sleep practices, they holistically reflected what was helpful for them to sleep. They suggested maintaining a positive attitude to prevent nighttime worrying from keeping them awake, keeping routine and pacing activities to manage tiredness, and obtaining support from family and friends and praying to God. Praying during the night was described as ‘‘comforting’’ to several participants and was mentioned more often in the later interviews. One participant recommended, ‘‘Do a little bit, rest, do some more, pace yourself.’’ Sleep-related advice involved taking naps when tired as advised by their clinicians, sleeping in a lounge chair to ease breathing, and getting some outdoor activity and light exposure. One participant related the positive effect of sunlight, ‘‘When the sun comes out, get outside, it helps me.’’ Participants also used pain medication to help them fall asleep, yet very few requested sleep medication from their clinicians because they ‘‘didn’t want to be dependent.’’ Another participant recommended a guided relaxation while attempting to sleep that he found helpful when coping with his chronic obstructive pulmonary disease; he said:
but I really do not need much sleep because I do not do anything.’’ Another said, ‘‘I sleep a lot but at the wrong times,’’ which reflected circadian rhythm changes. Many participants began to drop out of the study, either because of death, entering hospice, or not responding to our attempts to contact them. We were no longer able to talk with them and thus had a silencing of their continuing narrative. The remaining participants’ narratives reflected changes in that the hopeful language became hidden with the circumstance of a change in effectiveness of treatment. As 1 participant explained how they dealt with life after several months of treatment: I have got to believe that everything will be fine, you got to act like thatI. Don’t think I don’t have my crying moments, and my feeling-sorry moments, my wondering-why moments, but it is only a moment.
Practical advice for managing sleep problems is summarized in Table 3. In summary, sleep problems and treatment adverse effects continued to be issues, but the participants minimized them and instead focused on hope for good treatment outcomes. Participants maintained a positive mindset such that they deemphasized their poor sleep, ensuing fatigue and treatment adverse effects.
Thus, after the participants evaluated their situation, the hope for optimal treatment waned. Their focus shifted to living in the present, enduring their weariness, and cautiously reflecting on the future. The narratives began to acknowledge the experience of suffering and beginning to explore what the future held. One participant stated, ‘‘The doctor has gone through chemo and radiation; there’s not much else really he can recommend; I never will be healed.’’ This dialectic was intimately related to the potential for hopelessness as 1 woman described, ‘‘I have total fatigueI I don’t’ know how long he [MD] is going to have me on it [chemotherapy]; he says until you can’t take it anymore. Does that mean I am going to die of it?’’ In summary, as treatment effectiveness declined and the sleep disturbances continued, some participants became silent, whereas others changed their focus to cautiously consider their future.
Theme 3: Silencing and Changing Focus as Treatment Effectiveness Declines
Theme 4: Embracing Spirituality as Focus for Future Changes
Over time, the participants found it more difficult to maintain their normal lives as their sleep disturbances continued. As 1 participant reflected, ‘‘I really don’t sleep at all, kind of lay in bedI
The 8 remaining participants’ final narratives shifted to focus on living life with a purpose and embracing spirituality. For some, the tumors began to grow again, and they began another course
Think positive, don’t let yourself get hung upVtalk yourself out of it by thinking of something pleasantI relax, take it slow and easy. If you start huffing and puffing, you will make it worseI stop, take 2 short breaths, and you will begin to slow down.
Table 3 & Practical Advice for Managing Sleep Problems From the Narratives With Nursing Implications Nursing Implications Attitude
Routine
Sleep
Support
Fighting is better than just letting it happen. Think positive, trust in treatment. Keep busy and not sit around thinking. Go with the flow and deal with it. Make life as regular as possible, keep eating, keep hydrated, listen to your body, do what you can do. Drink as much as you can to keep your system flushed. Keep eating, to keep your cells up because chemo knocks you down. Keep notes so you know what to expect and prepare for bad days. Napping to refresh self. Pain medication to help sleep. Sleep in lounge chair. Guided relaxation. Being outside in the sun. Praying as comforting. Put it in God’s hands. Family and friends for support. Accept help from other people so you don’t feel alone.
Dialogue regarding treatment options Therapeutic communication Mindfulness meditation Routine sleep time Limit fluids in the evening
Avoid naps for more than 30 min Sleep hygiene education Assess for sleep disturbance Cognitive behavioral treatment insomnia Light therapy Facilitate access to supports
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of treatment, and those who finished treatment were still dealing with debilitating symptoms and sleep difficulties. Their narratives changed to reflect their determination to live life in the day-to-day activities, and they began to consider their mortality similar to Heidegger’s (1927/1962) concept of ‘‘being-toward-death.’’ As 1 woman related: I don’t worry, [I] just accept it. [I] had a good life, smoker for 20 years, no sense crying about it because we all got to leave here; we are not here forever, [I was] raised from the bible. Only God knows how long I’m going to live; I’d rather not hear that [a prognosis]. From the day you were born into this world, and you breathe, you start dying, and from that day because God is in control; you can accept it or not. One participant talked about her need for a belief in an afterlife when discussing her current life situation, ‘‘Faith is the only thing. Faith is comforting; there has got to be some place better than this.’’ Another explained her personal philosophy related to her declining physical status (natural part), which demonstrates change in the view of herself as embodied, to a belief in a separate spiritual life: We have a natural part of life, and we have a spiritual partI even when the natural part gives out, you still have the spirit lifeI. We got to keep the spirit life up and not let our spirit life die down with the natural part. There was a clear determination for the participants to live ‘‘in the now,’’ to maintain their daily lives, to be involved with family, and to help others, although at a reduced pace. Thus, their time or temporality focuses on what matters to the participants. One participant said, ‘‘as long as I have strength in my body, I am going to continue to do as much as I can. It is a day-by-day thing.’’ They accepted help from family and friends but also maintained a focus on getting their life sorted out by giving their belongings to loved ones, creating a will, and ‘‘just trying to take care of everybody.’’ In this way, they lived as Heidegger’s ‘‘being-toward-death’’ by becoming aware of their mortality and living authentically with meaning in relationship with others. Another participant shared her acceptance and approach to living with cancer as it related to her relationship with others: Deal with it as it comes day by day. Accept help from people, support family and friends, don’t feel so alone, take the good with the bad, just do what you can do, but that’s about it, to help someone in the future. In summary, as participants shifted focus to consider their spiritual life versus an embodied self, they prioritized living life day by day, temporally considering what matters to them in relationship to others. Participants continued to view sleep as not a priority when living their life.
Constitutive Pattern: Being Resigned to Sleep Disturbances, Maintaining Hope for Optimal Treatment Outcomes and Focusing on Living Their Lives Participants began lung cancer treatment with a history of sleep disturbances. The treatment engendered a hope for more time that
Being Resigned to Sleep-Wake Disturbances
allowed them to focus on improvements and have an attitude of being resigned to adverse effects and increasing sleep difficulties. They managed their sleep fragmentation and insomnia-like symptoms by using a positive mindset, taking daytime naps, and using pain medications to help initiate sleep. The fragmented sleep contributed to the need to pace activities because they had less energy and took more frequent naps that affected their nighttime sleep, often getting days and nights mixed up. Over time, as some participants did not continue in the study, they essentially withdrew and became silent. Of the participants who remained, the narratives changed focus to living in the moment as treatment effectiveness declined. Participants reflected on the spiritual part of life, while living day by day with purpose and determination to take care of their family. One participant summarized her beliefs and practices that go beyond the bodily experience: Human beings can only do so much and go so far. They got to believe the unbelievable, the un-seeable. Some believe only the things we see; how can we have hope, hope in salvation? We got to be able see things that our eyes can’t. We have to think beyond what our bodies feel. To keep going, when I am too tiredI then I put myself in the spiritualI where you feel it but it doesn’t hurt.
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Discussion
In our examination of participants’ experiences of living with lung cancer and being resigned to sleep-wake disturbances, the patient narratives focused on the hope of having more time to live their lives. This attitude enabled them to accept sleep-wake disturbances as part of the experience that continued to worsen over time. In the literature, hope was similarly found to maintain wellbeing, live a meaningful life,27 improve quality of life, and have the ability to cope with grief, loss, and uncertainty.27Y32 Hope is considered a source of strength and comfort, assisting patients facing a terminal illness in overcoming despair by choosing the life-extending treatment.27,33Y35 In the current study, a change in the nature of hope coincided with the declining effectiveness of treatment. The focus changed from having more time to living in the present and embracing spirituality. Dorcy36 also described hope as influenced by the complexity of human experience and contextual expectations, which also was apparent in the participants’ narratives. Other qualitative studies that explored the experience of hope focused on cancer patients at their advance stage as they approached death. Similarly, the current studies had descriptions of hope of returning to normal and continuing living life as before diagnosis with cancer.27,37Y41 Other similar strategies to maintain hope in the current study were praying to God, thinking positively, reducing emotional reactions,16,42,43 and avoiding thinking about cancer.40 When the future became uncertain, similarly, focus changed to the well-being of families, maintaining integrity, and living in the present.39,41 Changes in hope were related to good treatment outcomes and having supportive relationships.27,34,44 In this study of participants with advanced lung cancer, despite the value of the initial hope in treatment outcomes, they had an attitude of tolerance of the sleep-wake disturbances; thus, Cancer NursingTM, Vol. 38, No. 5, 2015
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the current problem of the patient not seeking help for sleep disturbances perpetuates. Participants in this study also described increasing tiredness, daytime napping, poor sleep at night, and getting their days and nights mixed up. Similarly, Grutsch et al45 described universal profound circadian rhythm disruption in 84 lung cancer patients, as measured by actigraphy, which compromised daily activities, diminished quality of life compared with noncancer individuals, which suggested behavioral (cognitive behavioral therapy), hormonal (ie, melatonin), and light-based strategy interventions to improve circadian rhythms. Currently, there are no intervention studies of lung cancer patients to reduce sleep disturbance and symptom distress, as well as to improve sleep and quality of life. One descriptive study by Montazeri et al46 in Scotland examined lung cancer patients at baseline and at 3 months and found slight improvement in sleep yet decreases in global quality of life that was associated with social functioning. Another longitudinal study by Ilonen et al47 reported that 2 years after surgery, 81% of NSCLC patients had decreased sleep and health-related quality of life overall. These studies reflect the decreasing quality of life that lung cancer patients experience that perhaps could potentially be improved by treating sleep-wake disturbances. The limitations of this study include the significant attrition rates due in part to advanced disease that silenced the narratives of participants who choose not to continue in the study. We do not know the experiences of those patients who entered hospice and stopped treatment. In addition, all participants initially chose treatment, and it is unknown what the experience would be of persons who do not choose treatment. Nonetheless, the findings highlight the commonality of sleep-wake disturbances in lung cancer patients and the need for interventions to improve sleep and quality of life.
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Implication for Nursing
From the findings of this study, nurses can gain insight into the influence of hope for optimal treatment outcomes in patients tolerating adverse effects of increasingly poor sleep and the resultant fatigue. Nurses can provide opportunities to talk about options and choices for treatment and support to improve sleep, which may help them live their lives with fewer symptoms. Nurses conducting sleep assessments48 will identify the particular sleepwake disturbances in order to offer treatment suggestions to improve sleep, thus improving overall quality of life including clarifying patient practices for sleep problems focused on fatigue and taking naps, educating to promote good sleep hygiene, and promoting behavioral interventions to improve sleep. Interventions for patients with other cancers, primarily breast cancer, designed to promote sleep have been evaluated, yet the strength of evidence is limited by small sample sizes49 and small to moderate effect sizes.50 These interventions included insomnia-related approaches (stimulus control, sleep restriction, paradoxical intention, and cognitive therapy) and relaxation therapy, sleep hygiene, phototherapy, exercise, and yoga. Some suggestions from the current study to improve sleep included (1) avoiding prolonged naps during the day by limiting them to 30 minutes, thereby
consolidating sleep at night to provide more restorative sleep (stages 3 and 4), and (2) limiting fluid intake to daytime hours to reduce nocturia and subsequent troubles going back to sleep while recognizing the importance of keeping hydrated during chemotherapy. Further research on the relationships with poor sleep and other symptom clusters is warranted.
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Conclusion
The experiences of participants with advanced lung cancer being resigned to sleep-wake disturbances offer insights to nurses about the importance of providing tips for improving sleep during and after treatment to reduce symptoms and symptom distress. Preexisting sleep-wake disturbances and poor sleep habits provide challenges to encouraging good sleep in patients who tolerate the symptoms in the hope of gaining more time through treatment. Encouraging good sleep hygiene may improve sleep and quality of life and enhance their ability to live their lives.
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17. Chen M-L, Yu C-T, Yang C-H. Sleep disturbances and quality of life in lung cancer patients undergoing chemotherapy. Lung Cancer. 2008;62:391Y400. 18. Savard J, Morin CM. Insomnia in the context of cancer: a review of a neglected problem. J Clin Oncol. 2001;19:895Y908. 19. Silberfarb P, Hauri P, Oxman T, Schnurr P. Assessment of sleep in patients with lung cancer and breast cancer. J Clin Oncol. 1993;11:997Y1004. 20. Vena C, Parker KP, Allen R, Bliwise DL, Jain S, Kimble L. Sleep-wake disturbances and quality of life in patients with advanced lung cancer. Oncol Nurs Forum. 2006;33:761Y769. 21. Degner LF, Sloan JA. Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. J Pain Symptom Manage. 1995b;10:423Y431. 22. Lowe M, Molassiotis A. A longitudinal qualitative analysis of the factors that influence patient distress within the lung cancer population. Lung Cancer. 2011;74(2):344Y348. 23. Molassiotis A, Lowe M, Blackhall F, Lorigan P. A qualitative exploration of a respiratory distress symptom cluster in lung cancer. Lung Cancer. 2011; 71(1):94Y102. 24. Lovgren M, Hamberg K, Tishelman C. Clock time and embodied time experienced by patients with inoperable lung cancer. Cancer Nurs. 2010; 33:55Y63. 25. Diekelmann N, Allen D, Tanner C. A hermeneutic analysis of the NLN criteria for the appraisal of baccalaureate programs. In: The NLN Criteria for Appraisal of Baccalaureate Programs: A Critical Hermeneutic Analysis. New York: National League for Nursing; 1989:11Y34. 26. Diekelmann N, Ironside P. Hermeneutics. Encyclopedia of Nursing Research. New York, NY: Springer; 1998:243Y245. 27. Benzein E, Norberg A, Saveman B-I. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med. 2001; 15:117Y126. 28. Benzein E, Saveman Bi. One step towards the understanding of hope: a concept analysis. Int J Nurs Stud. 1998;35:322Y329. 29. Ebright PR, Lyon B. Understanding hope and factors that enhance hope in women with breast cancer. Oncol Nurs Forum. 2002;29(3):561Y568. 30. Herth K. Enhancing hope in people with a first recurrence of cancer. J Adv Nurs. 2000;32:1431Y1441. 31. Herth K, Cutcliffe J. The concept of hope in nursing 3: hope and palliative care nursing. Br J Nurs. 2002;11:977Y986. 32. Lee E-H. Fatigue and hope: relationships to psychosocial adjustment in Korean women with breast cancer. Appl Nurs Res. 2001;14:87Y93. 33. Gum A, Snyder C. Coping with terminal illness: the role of hopeful thinking. J Palliat Med. 2002;5:883Y894. 34. Herth K. Fostering hope in terminally
Suzanne S. Dickerson, DNS, RN Eman Abbu Sabbah, MS, RN Sandra Gothard, MS, RN Patricia Zeigler, NP, RN Hongbin Chen, MD, PhD Lynn M. Steinbrenner, MD Grace E. Dean, PhD, RN
Experiences of Patients With Advanced Lung Cancer Being Resigned to Sleep-Wake Disturbances While Maintaining Hope for Optimal Treatment Outcomes
K E Y
W O R D S
Background: Sleep-wake disturbances are prevalent in patients with lung cancer
Hermeneutics
yet are infrequently studied over time. This article reports on the qualitative results of
Hope
a mixed-methods study of newly diagnosed patients’ narratives over 6 months.
Lung cancer
Objective: The objective of this study was to gain an understanding of the treatment
Sleep disturbance
and illness trajectory related to sleep-wake disturbances as well as the beliefs and practices of patients while seeking optimal treatment outcomes. Methods: Longitudinal interview narratives of 26 patients’ experiences with advanced lung cancer diagnosis (at baseline, preYsecond and third treatment, and 6 months) were obtained from participants recruited from Veterans Administration Hospital Center and a Comprehensive Cancer Center in Northeast United States. Analysis of illness narratives used interpretive phenomenology based on Heideggarian hermeneutic traditions. Results: At diagnosis, participants described poor sleep such as trouble falling asleep and frequent awakenings. Over time, as the treatment worsened their sleep symptoms, these participants still maintained hope for more time with treatment. This focus enabled them to tolerate the sleep-wake disturbances and treatment adverse effects. As the treatment effectiveness declined, their focus changed to spiritual meanings for the future and to keep living life with a purpose.
Author Affiliations: School of Nursing, University at Buffalo, the State University of New York (Drs Dickerson and Dean and Mss Abbu Sabbah and Gothard); VA Western New York Health System (Dr Steinbrenner and Ms Zeigler); and Department of Medicine at Roswell Park Cancer Institute and School of Medicine, Buffalo, New York, and Biomedical Sciences at the University at Buffalo, the State University of New York (Dr Chen). This study was funded by ONS Foundation and the National Lung Cancer Partnership Lung Cancer Research Grant. This work in part was conducted at, and supported by, VA Western New York Healthcare System, Buffalo, New York.
The contents of this article do not represent the views of the Department of Veterans Affairs or the US government. The authors have no conflicts of interest to disclose. Correspondence: Suzanne S. Dickerson, DNS, RN, School of Nursing, University at Buffalo, the State University of New York, 301E Wende Hall, 3435 Main St, Buffalo, NY 14214 ([email protected]). Accepted for publication August 19, 2014. DOI: 10.1097/NCC.0000000000000206
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Conclusions: By explicating lung cancer patients’ experiences with sleep-wake disturbances, nurses will gain insight into potential interventions to improve sleep and support effective outcomes as well as open a dialogue about hope. Implications for Practice: Findings offer insight for oncology nurses to provide opportunities for dialogue about treatment options and techniques to improve sleep, which will facilitate patients living their lives.
L
ung cancer is the second most common cancer in the United States and in 2012 contributed to a yearly worldwide mortality rate of 1.4 million.1 Despite improved treatment approaches, according to the American Cancer Society, the US 5-year survival rate for nonYsmall cell lung cancer (NSCLC) reached only 17%.2 A diagnosis of NSCLC has been described as devastating yet not surprising to patients who tend to blame their smoking habits.3,4 Patients with lung cancer dealt with disease- and treatment-related symptoms and threats of disease progression,5Y7 all of which affected their sleep and precipitated sleep-wake disturbances.8 Sleep-wake disturbances related to multidimensional etiologies were reported in 30% to 75% of recently diagnosed/treated cancer patients.8,9 Previous researchers reported high rates of sleep problems in patients with lung cancer, including use of hypnotics (40%), restless leg syndrome (47%), insomnia (52%),10,11 sleep fragmentation,12 excessive daytime sleepiness,13 lethargy,14 difficulty falling asleep, and poor nighttime sleep quality.15,16 Although sleepwake disturbances have been reported as a distressing concern among lung cancer patients,7,16 sleep-wake disturbances are not routinely assessed by healthcare providers17 and are usually undertreated. Other studies showed that the patients themselves underreported their sleep difficulties, which reinforced the failure to notice these problems.3,18,19 Despite the underreporting by patients and clinicians, sleepwake disturbances negatively interfere with lung cancer patients’ cognitive, psychological, and physical function, as well as affect their quality of life.13,17,20 If good sleep is a basic physiologic activity necessary for health and functioning, then poor sleep may contribute to the challenge of a cancer diagnosis21Y23 and critical treatment decision making.24 Therefore, it is important to gain an understanding of the lung cancer patients’ trajectory related to sleepwake disturbances and explicate the patients’ beliefs and practices in managing sleep problems, in order to gain insight into potential approaches to improve sleep. The primary purpose of this article was to report the interpretations of the qualitative components of a mixedmethods longitudinal study of sleep-wake disturbances of patients with NSCLC receiving treatment (at diagnosis, preYsecond treatment, preYthird treatment, and 6 months’ time frame). The aims of the study include (a) exploring sleep-wake disturbances before, during, and after treatment, (b) understanding the patterns of change over time that affected patients’ daily lives, and (c) describing the beliefs and practical knowledge used in managing their sleep difficulties.
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Methodological Approach
This qualitative study used Heideggarian hermeneutics or interpretive phenomenology to guide development of the research
Being Resigned to Sleep-Wake Disturbances
questions that evoked the narrative stories of daily experiences and guided analysis. Hermeneutics is a methodology that interprets the meaning of being human situated in the everyday shared practices, experiences, and concerns as expressed in the participant’s stories. The stories, through language, reflected the self-interpretation of the situated practices that explicated the participants’ experiences (Heidegger1927Y1962). Through analysis of narrative stories, the researchers gained insight into the participants’ challenges of managing treatment effects, poor sleep, and disease. Through reflective interpretation of the patient narratives, common practices and meanings emerged that uncovered understanding of the lived experience.26 The interpretive team was the same team that analyzed the previously published baseline report.3 The first author interviewed the participants at various locations: the treatment centers, participants’ homes, and at times by telephone. Most of the participants were asked open-ended questions about their experiences at diagnosis, their treatment, and their sleep patterns, and participants offered suggestions for other patients who experience cancer treatment. The transcripts of the audio-taped narratives provided the data for analysis using the interpretive phenomenological approach.25,26 The research team met regularly to discuss their individual analysis of each transcript, identifying common themes and shared practices supported by the verbatim excerpts from the text. The team analyzed all transcripts to reach consensus on the common themes and practices that were present across all texts. Any conflicting interpretations were clarified by rereading the text and discussion to reach consensus. A constitutive pattern was identified by the team that linked the related themes together in a statement that reflected the overall pattern of the experience to explicate the experience as lived by the participants. The interpretations were always open to new interpretations by further analysis; however, the circular and reflective process ensured justifiable results were found to interpret the experience.26
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Sample/Setting
Twenty-six individuals newly diagnosed with NSCLC from VA Health System and a Comprehensive Cancer Center agreed to participate in the study when recruited by a nurse practitioner and physician, who routinely care for lung cancer patients and partnered with the researchers on this study. The recruitment occurred at the time of initial diagnosis when patients who met the criteria were asked if they were interested in participating in the study. The healthcare providers forwarded the contact information of interested patients to the research team, who then explained the study and obtained consent. These 2 settings provided Cancer NursingTM, Vol. 38, No. 5, 2015
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socioeconomic and ethnic diversity in the sample. Inclusion criteria included patients older than 18 years, diagnosed with NSCLC, choosing treatment and able to care for themselves (Karnofsky Performance Scale score 970). After institutional review board approval, consent was obtained by the research team prior to the interviews.
Background Themes From Baseline Study
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The interpretations of the initial interviews were previously published in a paper focused on the initial diagnosis of lung cancer.3 There were 4 baseline themes and 1 constitutive pattern, which included: (1) ‘‘diagnosis as devastating, yet not surprising,’’ because the participants associated the diagnosis with their smoking habits. The participants chose chemotherapy and described (2) ‘‘treatment as hope for more time.’’ During the treatment, the participants’ main focus was in (3) ‘‘keeping life as normal,’’ and they focused on continuing their lives and were not overly concerned with their sleep difficulties. When asked to reflect on their sleep, participants described (4) ‘‘sleep habits as long lived.’’ They described insomnia-like patterns, frequent awakenings at night, and racing minds. Their sleep hygiene habits were poor with frequent caffeine intake, napping, and watching TV. Overall constitutive pattern was ‘‘sleep is not a priority when living my life,’’ which reflected the precedence of continuing to live their lives. These initial narratives were included in this analysis as the baseline postdiagnosis-pretreatment narrative, with the subsequent narratives, preYsecond treatment and preYthird treatment, followed by the final interview at 6 months.
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Findings
Four themes and 1 constitutive pattern emerged from the analysis that described patients as being resigned to sleep disturbances, maintaining hope for optimal treatment outcomes, and focusing on living their lives. All of the 26 participants had an advanced stage cancer diagnosis and were receiving treatment, 62% were male, and 15% black with varying education levels. Demographics are summarized in Table 1. Twenty-six participants completed the initial interview, 21 the second, 17 the third, and 8 (30%) the final 6-month interview. Of the 18 participants (70%) who did not complete the final interview, 6 (23%) died, 5 (19%) were known to have entered hospice, and the remainder did not respond to our attempts to contact them. Data collection attrition patterns demonstrated the challenges of longitudinal studies with advanced lung cancer patients.
Theme 1: Beginning the Lung Cancer Journey by Embracing Hope in Treatment The participants’ initial narratives predominantly described their preexisting history of sleep troubles including trouble falling asleep,
waking frequently at night, and poor sleep habits (as reported at baseline).3 As treatment progressed, participants reported the need to take more frequent naps because of ‘‘being so tired’’ because of nighttime awakenings, more frequent nocturia, and trouble with falling back to sleep. While they would talk about their sleep and napping patterns, they often would switch the conversations to their beliefs and attitudes toward living with their cancer diagnosis. After consulting with their providers at diagnosis, all participants chose treatment. They expressed the belief that the treatment would ‘‘not cure but give more time’’ despite the diagnosis, thus enacting hope. Unexpectedly, none of the participants initially discussed their mortality when faced with a lung cancer diagnosis. Instead, they were very confident in the skills of the clinicians and were willing to put their trust in their hands: ‘‘I don’t worry. I put it in the hands of my doctor; it’s their job and training.’’ They used language connoting fighting the disease that engendered a positive mindset, maintaining hope as a driving force to overcome or control the disease. One participant said, ‘‘Cancer is like a chronic illness; I can deal with that.’’ Another participant reflected on his treatment choice: I feel that what I am doing [treatment] is going to be of ultimate benefit to me. I have no assurance of that, but I just have a feeling that if I fight it, it would be better than to just let it happen. Another participant supported his choice for treatment and his need to ‘‘fight back, if you have a chance of beating it, take it; don’t lay down and die; don’t let it take over you; you have to fight back.’’ One man gave his marketing-like motto, ‘‘Got cancer? Take treatment!’’ In summary, as the participants were diagnosed and began treatment, sleep was not a priority for them. Instead, they prioritized their focus on treatment, which engendered an attitude of hope for more time and sleep issues became secondary.
Theme 2: Improvements in Disease Enabling Patients to Tolerate Sleep Disturbance and Treatment Adverse Effects Of the 21 participants who were in the study at time 2 (preYsecond treatment), sleep-related symptoms were more problematic, with participants describing more frequent nighttime awakenings and trouble going back to sleep, but they rationalized that sleep problems were an expected part of the treatment, or related to aging, and otherwise not relevant. As one said, ‘‘I am weary a lot, but aging is aging, there is no remedy for thatI you learn to adjust.’’ The participants’ narratives described increasing weariness and the need to adjust their activities to continue to live their lives. One said, ‘‘My energy is down, [I have] very little energy [and] take 2 naps a day.’’ Another shared that, ‘‘I am more tired than usual, nothing I can’t handle.’’ Another participant reflected on this problem of inability to sleep well and determined that it was not a relevant problem, ‘‘I suggest that you listen to your body and right now it’s telling me I’m all rightVso I’ll take that [his progress] anyway I can get it.’’ The participants’ insomnia-like symptoms were similar to the initial interview at diagnosis; however, the sleep-wake disturbances
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Table 1 & Demographic Variables of Participants (N = 26) Variable
Comprehensive Cancer Center n = 16 (62%)
VA Hospital System n = 10 (38%)
All Participants N = 26
Age (y), mean (SD), range
66.4 (8.9), 47Y80
64.1 (10.2), 49Y84
66 (9.3), 47Y84
Gender Male Female Education High school or below College/graduate Not known Race White Black Comorbidities (from chart review) Cardiovascular Chronic obstructive pulmonary disease Total no., mean (SD), range Treatment adverse effectsVfrom narratives Fatigue Nausea, appetite loss Pain Cough Sleep disturbance
n
n
n
6 10
10 0
16 10
10 4 2
8 2
18 6 2
12 3
9 1 N 15 14 8 (6), 3Y19
22 4
5 (3), 1Y13
were not the main focus of the narratives at times 2 and 3 but were more of an issue in the final narratives. As the treatment progressed, the participants described worsening sleep fragmentation, nighttime awakenings with difficulty returning to sleep, and fatiguelike symptoms. Participants related, ‘‘I wake up in the middle of the night, and it’s hard to go back to sleep’’ and ‘‘I have my days and nights mixed up [from long napping].’’ The participants were not having a consolidated sleep at night. Participants were also dealing with the adverse effects of chemotherapy, which included the need to keep hydrated, which contributed to nocturia. Sleep-related symptoms extracted from the patient descriptions of sleep problems in the narratives were summarized over time in Table 2. The prevailing attitude was to remain positive toward the future and to embrace hope in each small improvement, such as a reduction in tumor size. One said, ‘‘the chemo is working, so it is making me tolerate it [sleep problems] a little better because I know it is working.’’ Their narratives minimized the treatment adverse effects and sleep problems as they often responded that they were ‘‘doing fine.’’ Another participant related that ‘‘If the treatments don’t get worse than this, I’ll make it through.’’
6 (4), 1Y19 16 14 8 3 16
Hope was prominent in the narratives that voiced the message of keeping positive and rationalizing treatment effects as necessary but tolerable. As the participants progressed thorough the initial treatments, at time 3, they continued to carefully assess their prognosis in a positive light, as one related, ‘‘The past few days, I have been eating well and getting back to normalI I do the best I can and keep on going.’’ Another man described his progress, ‘‘I had a scanI and the tumors were sort of stopped.’’ Despite the sleep-wake disturbances, participants who continued in the study described an understanding of their physical limits, and thus clarifying and prioritizing choices in order to participate in meaningful activities to live their lives as normal as possible. One participant, who had a setback of a hospitalization from a pneumonia episode, reflected on the next plans and gratitude for living life, ‘‘Hopefully, I can get outside a little bit more, and I’ll be happy for a while, for this summer anyway. I am just glad to be home.’’ Participants gave suggestions to others regarding their sleep issues. Although much of the advice was not specific to common
Table 2 & Trajectory of Sleep Symptoms as Described in the Narratives Sleep-Related Symptoms From Narratives
Diagnosis (N = 26)
Time 2 (n = 21)
Time 3 (n = 15)
Final (n = 8)
Insomnia-like symptoms: trouble falling asleep and staying asleep Nighttime awakenings: fragmented sleep Racing mind Fatigue-like: ‘‘weary,’’ ‘‘so tired,’’ ‘‘no energy’’
16 11 5 1
8 16 4 13
3 8 2 10
6 6 2 7
Being Resigned to Sleep-Wake Disturbances
(62%) (42%) (19%) (4%)
(38%) (76%) (19%) (62%)
(20%) (53%) (13%) (66%)
(75%) (75%) (25%) (88%)
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sleep practices, they holistically reflected what was helpful for them to sleep. They suggested maintaining a positive attitude to prevent nighttime worrying from keeping them awake, keeping routine and pacing activities to manage tiredness, and obtaining support from family and friends and praying to God. Praying during the night was described as ‘‘comforting’’ to several participants and was mentioned more often in the later interviews. One participant recommended, ‘‘Do a little bit, rest, do some more, pace yourself.’’ Sleep-related advice involved taking naps when tired as advised by their clinicians, sleeping in a lounge chair to ease breathing, and getting some outdoor activity and light exposure. One participant related the positive effect of sunlight, ‘‘When the sun comes out, get outside, it helps me.’’ Participants also used pain medication to help them fall asleep, yet very few requested sleep medication from their clinicians because they ‘‘didn’t want to be dependent.’’ Another participant recommended a guided relaxation while attempting to sleep that he found helpful when coping with his chronic obstructive pulmonary disease; he said:
but I really do not need much sleep because I do not do anything.’’ Another said, ‘‘I sleep a lot but at the wrong times,’’ which reflected circadian rhythm changes. Many participants began to drop out of the study, either because of death, entering hospice, or not responding to our attempts to contact them. We were no longer able to talk with them and thus had a silencing of their continuing narrative. The remaining participants’ narratives reflected changes in that the hopeful language became hidden with the circumstance of a change in effectiveness of treatment. As 1 participant explained how they dealt with life after several months of treatment: I have got to believe that everything will be fine, you got to act like thatI. Don’t think I don’t have my crying moments, and my feeling-sorry moments, my wondering-why moments, but it is only a moment.
Practical advice for managing sleep problems is summarized in Table 3. In summary, sleep problems and treatment adverse effects continued to be issues, but the participants minimized them and instead focused on hope for good treatment outcomes. Participants maintained a positive mindset such that they deemphasized their poor sleep, ensuing fatigue and treatment adverse effects.
Thus, after the participants evaluated their situation, the hope for optimal treatment waned. Their focus shifted to living in the present, enduring their weariness, and cautiously reflecting on the future. The narratives began to acknowledge the experience of suffering and beginning to explore what the future held. One participant stated, ‘‘The doctor has gone through chemo and radiation; there’s not much else really he can recommend; I never will be healed.’’ This dialectic was intimately related to the potential for hopelessness as 1 woman described, ‘‘I have total fatigueI I don’t’ know how long he [MD] is going to have me on it [chemotherapy]; he says until you can’t take it anymore. Does that mean I am going to die of it?’’ In summary, as treatment effectiveness declined and the sleep disturbances continued, some participants became silent, whereas others changed their focus to cautiously consider their future.
Theme 3: Silencing and Changing Focus as Treatment Effectiveness Declines
Theme 4: Embracing Spirituality as Focus for Future Changes
Over time, the participants found it more difficult to maintain their normal lives as their sleep disturbances continued. As 1 participant reflected, ‘‘I really don’t sleep at all, kind of lay in bedI
The 8 remaining participants’ final narratives shifted to focus on living life with a purpose and embracing spirituality. For some, the tumors began to grow again, and they began another course
Think positive, don’t let yourself get hung upVtalk yourself out of it by thinking of something pleasantI relax, take it slow and easy. If you start huffing and puffing, you will make it worseI stop, take 2 short breaths, and you will begin to slow down.
Table 3 & Practical Advice for Managing Sleep Problems From the Narratives With Nursing Implications Nursing Implications Attitude
Routine
Sleep
Support
Fighting is better than just letting it happen. Think positive, trust in treatment. Keep busy and not sit around thinking. Go with the flow and deal with it. Make life as regular as possible, keep eating, keep hydrated, listen to your body, do what you can do. Drink as much as you can to keep your system flushed. Keep eating, to keep your cells up because chemo knocks you down. Keep notes so you know what to expect and prepare for bad days. Napping to refresh self. Pain medication to help sleep. Sleep in lounge chair. Guided relaxation. Being outside in the sun. Praying as comforting. Put it in God’s hands. Family and friends for support. Accept help from other people so you don’t feel alone.
Dialogue regarding treatment options Therapeutic communication Mindfulness meditation Routine sleep time Limit fluids in the evening
Avoid naps for more than 30 min Sleep hygiene education Assess for sleep disturbance Cognitive behavioral treatment insomnia Light therapy Facilitate access to supports
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of treatment, and those who finished treatment were still dealing with debilitating symptoms and sleep difficulties. Their narratives changed to reflect their determination to live life in the day-to-day activities, and they began to consider their mortality similar to Heidegger’s (1927/1962) concept of ‘‘being-toward-death.’’ As 1 woman related: I don’t worry, [I] just accept it. [I] had a good life, smoker for 20 years, no sense crying about it because we all got to leave here; we are not here forever, [I was] raised from the bible. Only God knows how long I’m going to live; I’d rather not hear that [a prognosis]. From the day you were born into this world, and you breathe, you start dying, and from that day because God is in control; you can accept it or not. One participant talked about her need for a belief in an afterlife when discussing her current life situation, ‘‘Faith is the only thing. Faith is comforting; there has got to be some place better than this.’’ Another explained her personal philosophy related to her declining physical status (natural part), which demonstrates change in the view of herself as embodied, to a belief in a separate spiritual life: We have a natural part of life, and we have a spiritual partI even when the natural part gives out, you still have the spirit lifeI. We got to keep the spirit life up and not let our spirit life die down with the natural part. There was a clear determination for the participants to live ‘‘in the now,’’ to maintain their daily lives, to be involved with family, and to help others, although at a reduced pace. Thus, their time or temporality focuses on what matters to the participants. One participant said, ‘‘as long as I have strength in my body, I am going to continue to do as much as I can. It is a day-by-day thing.’’ They accepted help from family and friends but also maintained a focus on getting their life sorted out by giving their belongings to loved ones, creating a will, and ‘‘just trying to take care of everybody.’’ In this way, they lived as Heidegger’s ‘‘being-toward-death’’ by becoming aware of their mortality and living authentically with meaning in relationship with others. Another participant shared her acceptance and approach to living with cancer as it related to her relationship with others: Deal with it as it comes day by day. Accept help from people, support family and friends, don’t feel so alone, take the good with the bad, just do what you can do, but that’s about it, to help someone in the future. In summary, as participants shifted focus to consider their spiritual life versus an embodied self, they prioritized living life day by day, temporally considering what matters to them in relationship to others. Participants continued to view sleep as not a priority when living their life.
Constitutive Pattern: Being Resigned to Sleep Disturbances, Maintaining Hope for Optimal Treatment Outcomes and Focusing on Living Their Lives Participants began lung cancer treatment with a history of sleep disturbances. The treatment engendered a hope for more time that
Being Resigned to Sleep-Wake Disturbances
allowed them to focus on improvements and have an attitude of being resigned to adverse effects and increasing sleep difficulties. They managed their sleep fragmentation and insomnia-like symptoms by using a positive mindset, taking daytime naps, and using pain medications to help initiate sleep. The fragmented sleep contributed to the need to pace activities because they had less energy and took more frequent naps that affected their nighttime sleep, often getting days and nights mixed up. Over time, as some participants did not continue in the study, they essentially withdrew and became silent. Of the participants who remained, the narratives changed focus to living in the moment as treatment effectiveness declined. Participants reflected on the spiritual part of life, while living day by day with purpose and determination to take care of their family. One participant summarized her beliefs and practices that go beyond the bodily experience: Human beings can only do so much and go so far. They got to believe the unbelievable, the un-seeable. Some believe only the things we see; how can we have hope, hope in salvation? We got to be able see things that our eyes can’t. We have to think beyond what our bodies feel. To keep going, when I am too tiredI then I put myself in the spiritualI where you feel it but it doesn’t hurt.
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Discussion
In our examination of participants’ experiences of living with lung cancer and being resigned to sleep-wake disturbances, the patient narratives focused on the hope of having more time to live their lives. This attitude enabled them to accept sleep-wake disturbances as part of the experience that continued to worsen over time. In the literature, hope was similarly found to maintain wellbeing, live a meaningful life,27 improve quality of life, and have the ability to cope with grief, loss, and uncertainty.27Y32 Hope is considered a source of strength and comfort, assisting patients facing a terminal illness in overcoming despair by choosing the life-extending treatment.27,33Y35 In the current study, a change in the nature of hope coincided with the declining effectiveness of treatment. The focus changed from having more time to living in the present and embracing spirituality. Dorcy36 also described hope as influenced by the complexity of human experience and contextual expectations, which also was apparent in the participants’ narratives. Other qualitative studies that explored the experience of hope focused on cancer patients at their advance stage as they approached death. Similarly, the current studies had descriptions of hope of returning to normal and continuing living life as before diagnosis with cancer.27,37Y41 Other similar strategies to maintain hope in the current study were praying to God, thinking positively, reducing emotional reactions,16,42,43 and avoiding thinking about cancer.40 When the future became uncertain, similarly, focus changed to the well-being of families, maintaining integrity, and living in the present.39,41 Changes in hope were related to good treatment outcomes and having supportive relationships.27,34,44 In this study of participants with advanced lung cancer, despite the value of the initial hope in treatment outcomes, they had an attitude of tolerance of the sleep-wake disturbances; thus, Cancer NursingTM, Vol. 38, No. 5, 2015
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the current problem of the patient not seeking help for sleep disturbances perpetuates. Participants in this study also described increasing tiredness, daytime napping, poor sleep at night, and getting their days and nights mixed up. Similarly, Grutsch et al45 described universal profound circadian rhythm disruption in 84 lung cancer patients, as measured by actigraphy, which compromised daily activities, diminished quality of life compared with noncancer individuals, which suggested behavioral (cognitive behavioral therapy), hormonal (ie, melatonin), and light-based strategy interventions to improve circadian rhythms. Currently, there are no intervention studies of lung cancer patients to reduce sleep disturbance and symptom distress, as well as to improve sleep and quality of life. One descriptive study by Montazeri et al46 in Scotland examined lung cancer patients at baseline and at 3 months and found slight improvement in sleep yet decreases in global quality of life that was associated with social functioning. Another longitudinal study by Ilonen et al47 reported that 2 years after surgery, 81% of NSCLC patients had decreased sleep and health-related quality of life overall. These studies reflect the decreasing quality of life that lung cancer patients experience that perhaps could potentially be improved by treating sleep-wake disturbances. The limitations of this study include the significant attrition rates due in part to advanced disease that silenced the narratives of participants who choose not to continue in the study. We do not know the experiences of those patients who entered hospice and stopped treatment. In addition, all participants initially chose treatment, and it is unknown what the experience would be of persons who do not choose treatment. Nonetheless, the findings highlight the commonality of sleep-wake disturbances in lung cancer patients and the need for interventions to improve sleep and quality of life.
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Implication for Nursing
From the findings of this study, nurses can gain insight into the influence of hope for optimal treatment outcomes in patients tolerating adverse effects of increasingly poor sleep and the resultant fatigue. Nurses can provide opportunities to talk about options and choices for treatment and support to improve sleep, which may help them live their lives with fewer symptoms. Nurses conducting sleep assessments48 will identify the particular sleepwake disturbances in order to offer treatment suggestions to improve sleep, thus improving overall quality of life including clarifying patient practices for sleep problems focused on fatigue and taking naps, educating to promote good sleep hygiene, and promoting behavioral interventions to improve sleep. Interventions for patients with other cancers, primarily breast cancer, designed to promote sleep have been evaluated, yet the strength of evidence is limited by small sample sizes49 and small to moderate effect sizes.50 These interventions included insomnia-related approaches (stimulus control, sleep restriction, paradoxical intention, and cognitive therapy) and relaxation therapy, sleep hygiene, phototherapy, exercise, and yoga. Some suggestions from the current study to improve sleep included (1) avoiding prolonged naps during the day by limiting them to 30 minutes, thereby
consolidating sleep at night to provide more restorative sleep (stages 3 and 4), and (2) limiting fluid intake to daytime hours to reduce nocturia and subsequent troubles going back to sleep while recognizing the importance of keeping hydrated during chemotherapy. Further research on the relationships with poor sleep and other symptom clusters is warranted.
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Conclusion
The experiences of participants with advanced lung cancer being resigned to sleep-wake disturbances offer insights to nurses about the importance of providing tips for improving sleep during and after treatment to reduce symptoms and symptom distress. Preexisting sleep-wake disturbances and poor sleep habits provide challenges to encouraging good sleep in patients who tolerate the symptoms in the hope of gaining more time through treatment. Encouraging good sleep hygiene may improve sleep and quality of life and enhance their ability to live their lives.
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