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Religions 2018, 9(10), 285; doi:10.3390/rel9100285

Review
Spiritual Distress in Cancer Patients: A Synthesis of Qualitative Studies
1
Institute of Health Sciences, Universidade Católica Portuguesa, 1649-023 Lisbon, Portugal
2
Researcher at the Centre for Interdisciplinary Research in Health, Institute of Health Sciences, Universidade Católica Portuguesa, Palma de Cima, 1649-023 Lisbon, Portugal
*
Author to whom correspondence should be addressed.
Received: 21 August 2018 / Accepted: 18 September 2018 / Published: 20 September 2018

Abstract

:
Cancer affects individuals in all human dimensions. Cancer patients are more susceptible to spiritual distress. Several studies have addressed spiritual distress using quantitative designs; however, a qualitative approach to the experience of spiritual distress could provide a deeper understanding of the phenomenon. This study aims to synthesis the experience of spiritual distress as lived by cancer patients in qualitative primary studies. This is a literature review based on electronic databases search. A total of 4075 citations was identified and 23 studies were included. The most frequent qualitative research method was phenomenology (n = 15), and interviews were the main data collection method (n = 20). Two major themes have been identified related to the experience of spiritual distress: suffering and coping. Spiritual distress is an intimate, deep and suffering experience in life, which requires coping strategies and involves spiritual values and beliefs. Healthcare providers should be aware of this experience and recognize spiritual distress in cancer patients, as it is critical in providing holistic nursing care.
Keywords:
cancer patients; nursing; qualitative studies; spiritual distress

1. Introduction

Cancer leaves an alarming and devastating effect at the global level and is considered a leading public health problem (Siegel et al. 2018). Cancer is one of the world’s leading causes of morbidity and mortality, with 14 million new cases and eight million cancer-related deaths have been diagnosed in 2012 (WHO 2014). In the USA, 4700 new cases of cancer are diagnosed each day (Siegel et al. 2018), 87% of all cancers are diagnosed in patients having 50 years of age or older, and the mortality rate is 1670 deaths per day, resulting in the second leading cause of death (American Cancer Society 2018). The burden of having cancer is a worldwide reality, but main cancers can be avoided, and the focal key word to fight cancer is prevention through tobacco control, vaccination, early detection, and promotion of healthy lifestyles (Torre et al. 2016). Cancer has a nefarious effect on patients’ life and can decrease hope and dreams (Villagomeza 2005). The diagnosis of cancer originates the most alarming response, as compared to other diagnosis (Sawyer 2000). The diagnosis and progression of cancer disturbs patients’ lives (Gurevich et al. 2002) who start frightening an imminent death and the suffering associated with the treatments (Caldeira et al. 2014).
Cancer affects individuals in all human dimensions: physical, psychological, social and spiritual (WHO 2014; Caldeira et al. 2016). These patients seem more susceptible to spiritual distress when they are diagnosed, during progression of the disease and at the end-of-life (Skalla and Ferrell 2015). Spiritual distress is also found in the literature as “existential suffering” (Bates 2016), “spiritual anguish” (Chaves et al. 2010), “spiritual pain” (Delgado-Guay et al. 2013), and “spiritual struggle” (Exline et al. 2013; Wilt et al. 2016).
Several studies have been conducted that support the existence of spiritual distress in cancer patients. In particular, Hui et al. (2011) conducted a study in patients with advanced cancer admitted to an acute palliative care unit and found an occurrence rate of 44.0% of spiritual distress. Gielen et al. (2017) found 17.4% of cancer patients in palliative care in India experience spiritual distress. Recently in Portugal, Caldeira et al. (2017) found 40.8% of cancer patients undergoing chemotherapy have spiritual distress.
Notwithstanding the subjective nature of spiritual distress, it can be assessed using various measures, tools and scales which have been developed, validated and translated in different countries and samples, such as, the Spiritual Distress Scale (Ku et al. 2010), Spiritual Distress Assessment Tool (Monod et al. 2012) and the Distress Thermometer (O’Donnell et al. 2013). Spiritual distress is an important issue in patient’s response towards a health problem and is the title of a nursing diagnosis listed in the taxonomy II of NANDA International, Inc. (NANDA-I) since 1978. This nursing diagnosis is included in the domain 10—Principles of life—and in the class 3—Congruence between values/beliefs/acts (Herdman and Kamitsuru [1994] 2018). The most recent nursing diagnosis validation study has proposed a new definition of spiritual distress as follows: “a state of suffering associated with the meaning of his/her life, related to a connection to self, others, world, or a Superior” (Caldeira et al. 2013, p. 6). The assessment of spiritual distress is critical for getting an accurate diagnosis (Simão et al. 2015). The screening of patients’ spiritual needs is considered an individual experience and ongoing process, which makes the assessment a complex process (Timmins and Caldeira 2017). Nevertheless, it is important to identify patients’ spiritual needs, to promote and to provide holistic nursing care (Guerrero et al. 2011). Likewise, different nursing interventions have been described as adequate in supporting patients in overcoming spiritual distress, such as music therapy, guided imaging, therapeutic touch, progressive muscle relaxation, distant intercessory prayer, reminiscence therapy, affective support group and meditation (Guilherme and Carvalho 2011).
Irrespective of all the scientific evidence on spiritual distress, a gap in implementing spiritual care in nursing practice remains. Several barriers to the provision of spiritual care have been described, such as, lack of training and time (Balboni et al. 2014), ignoring the spiritual aspect of care (Nascimento et al. 2010; Tiew et al. 2013), or misunderstanding the meaning of spirituality and the role in providing spiritual care (Rushton 2014). Spirituality and spiritual distress are individual experiences, and both require an individual approach. But, a deeper understanding of spiritual distress, based on the experience of having or living with spiritual distress, could be helpful in promoting an evidence-based practice and in supporting nurses in better diagnosing and intervening.
The aim of this review is to synthesis original qualitative research regarding spiritual distress of cancer patients, as qualitative research provides the information about participants’ feelings (Sutton and Austin 2015), also a meaningful knowledge of people’s real-life experiences besides it, allows for explaining a phenomenon which is poorly addressed (Polit and Beck [2001] 2014) in order to facilitate a deeper approach and understanding concerning this subject.

2. Materials and Methods

A literature review was undertaken, based on a search of the following electronic databases: CINAHL with Full text, PsycINFO, MEDLINE with Full text, MedicLatina, LILACS, SciELO, PubMed and Academic Search Complete. The search was conducted until 21 December 2017 using this search strategy: (“Cancer patients” OR “Cancer survivors” OR “Cancer survivorship” OR “Malignant tumor” OR “Neoplasms” OR “Oncologic patients” OR “Oncology patients” OR “Tumors”) AND (“Spiritual distress” OR “Spiritual suffering” OR “Spiritual anguish” OR “Spiritual pain” OR “Spiritual struggle” OR “Existential pain” OR “Existential suffering”). Inclusion criteria were: original papers reporting qualitative research; cancer patients as population, regardless the type of cancer; written in English, Spanish, French or Portuguese. The process of selection and analysis of papers was independently conducted by two reviewers (Sampaio and Mancini 2007) (Table 1).
First, 4075 citations were identified, and after duplicates removal, a total of 2866 results were screened; 2593 were excluded after reading the title; 273 abstracts have been analyzed and 204 were excluded. A total of 69 full texts have been read and 23 full-texts were assessed for eligibility. The Critical Appraisal Skills Programme (CASP 2013) was selected at the beginning but, at this stage even the studies that did not meet the quality criteria were not excluded (Figure 1), as the authors perceived during the analysis that those studies had valuable information about spiritual distress and were critical for the aim of the review.
The data extraction was performed in an Excel sheet, with predefined evaluation criteria previously stated in the review protocol, namely, author, year of publication, journal, title, objective, thematic area, setting, population, findings, methodology, data collection and themes regarding spiritual distress. Data were treated using descriptive statistics and content analysis. Citations concerning spiritual distress have been listed and independently analyzed. The sub-themes emerged based on the focus of each citation and then were compared. Next, the sub-themes were independently analyzed to be merged in themes.

3. Results

Most studies were conducted in the USA (n = 7), few in Taiwan (n = 3), Iran (n = 2), and Australia, Canada, Israel, Japan, Malaysia, Spain, Sweden and Thailand (n = 1). Some studies involved the participation and collaboration of several countries, such as Finland and Sweden (n = 1), Iceland and UK (n = 1), and USA and Israel (n = 1). Most qualitative studies were published in 2002 and 2004 (n = 3), and the first study was published in 2001. Studies were published in 17 different journals, meanwhile the journals having the largest number of publications were Oncology Nursing Forum (n = 4), Support Care Cancer (n = 3), International Journal of Palliative Nursing, and Journal of Nursing Research (n = 2). Moreover, 54.2 % of the studies were published in oncology journals and all 23 included studies were published in English.
Regarding the disciplines, nursing (n = 15) leaded the publications, followed by medicine (n = 5), theology (n = 2), and social science (n = 1). The qualitative methods most used were phenomenology (n = 15) (Albaugh 2003; Asgeirsdottir et al. 2013; Bentur et al. 2014; Chao et al. 2002; Chio et al. 2008; Coward and Kahn 2004; Hajdarevic et al. 2014; Lindholm et al. 2002; McGrath 2002; Montoya-Juarez et al. 2013; Nilmanat et al. 2015; Perreault and Bourbonnais 2005; Shih et al. 2009; Williams 2004, 2012), grounded theory (n = 3) (Farsi 2015; Halstead and Hull 2001; Kawa et al. 2003), case study (n = 3) (Balducci 2010; Cooper 2011; Loh 2004), descriptive method (n = 1) (Rahnama et al. 2012), and ethnography (n = 1) (Blinderman and Cherny 2005). About the phenomenology method, most studies used a Hermeneutic approach (n = 4) (Chao et al. 2002; Chio et al. 2008; Hajdarevic et al. 2014; Shih et al. 2009).
Concerning the time line, only two original studies were conducted using a longitudinal approach (Coward and Kahn 2004; Nilmanat et al. 2015). With regard to the data collection, interviews were the main method (n = 20), merging interviews and observation (n = 2) and narrative (n = 1). Most of the interviews were face-to-face, with one face to face and telephone (Cooper 2011). Generally the interviews were based on open-ended questions (n = 8) (Asgeirsdottir et al. 2013; Balducci 2010; Chio et al. 2008; Farsi 2015; McGrath 2002; Perreault and Bourbonnais 2005; Williams 2004, 2012), five with in depth interviews (Bentur et al. 2014; Chao et al. 2002; Farsi 2015; Shih et al. 2009; Williams 2004), semi-structured interviews (n = 6) (Chio et al. 2008; Hajdarevic et al. 2014; Halstead and Hull 2001; Montoya-Juarez et al. 2013; Perreault and Bourbonnais 2005; Rahnama et al. 2012), and unstructured interview (n = 2) (Chao et al. 2002; Williams 2012).
In relation to the number of participants, the samples ranged from one participant (Balducci 2010; Cooper 2011; Loh 2004) to 40 participants (Blinderman and Cherny 2005). The setting was mostly in the hospital (n = 14), with some at home and cancer center (n = 2), and in various settings (n = 7). Regarding, the sociodemographic characteristics of the participants, most of the studies includes both gender (n = 14), only female (n = 5), and male (n = 1). Most participants aged 18 years or older (n = 20). Participants have different type of cancers (n = 9), breast cancer (n = 5), hematological (n = 3), rhabdomyosarcoma of the leg (n = 1), melanoma (n = 1), and can´t tell (n = 4). Participants’ religiosity was not available in most studies (n = 17), in two studies all participants were Muslin, in two studies main participants were Buddhist, and in one study most were Jews.
Content analysis was used in the included studies in order to analyze and obtain an understanding of the patient´s experience of spiritual distress. Two major themes emerged in content analysis as follow: suffering and coping strategies to overcome spiritual distress (Figure 2).
Moreover, the major thematic areas are supported on the following sub-themes: theme suffering (sub-theme: alienation, anger, anxiety, body image, burden to family, crying, disconnected, fatalism, fear, forgiveness, good death/desire to die, guilt/punishment, hopelessness, impaired role performance, insomnia, lack of autonomy/dignity, lack of support relative and friends, loneliness, loss of self/lost identity, physical symptoms, refusing to see relatives, relationship with god, social isolation, uncertain future and worthlessness), and theme coping (sub-themes: connection with family/friends/self/spirituality/religion, connection to body and mind, hope, helping other patients, non-spiritual/religious therapies/practices, re-meaning, spiritual practices, support from family/friends, support from healthcare professionals, transcendence, transformation and trust in god/spiritual beliefs) (Table 2).

4. Discussion

This review has aimed to provide a synthesis of qualitative studies regarding spiritual distress in cancer patients. A recent overview about spiritual distress (Ordons et al. 2018) involved both patient and family experiences within inpatient settings, including mixed-methods, qualitative and quantitative studies, is bringing interesting findings and a broader perspective of spiritual distress. This review focused only on the synthesis of qualitative studies including cancer patients, and excluding family, aiming at a deeper insight into the individual experience of spiritual distress. This deeper approach of spiritual distress in cancer patients aims to better understand and increase the knowledge in this topic, which may enable and raise awareness in the assessment of spiritual distress in the future, in clinical practice, education, and in research.
The research methods in this review are mainly phenomenology and grounded theory. Phenomenology has the ability to uncover the essence and meaning of a phenomenon which is lived by individuals (Polit and Beck [2001] 2014). Interviews were mainly used method for data collection, as expected in qualitative research, as it provides a more comprehensive and global view on a deeper phenomenon (Alshenqeeti 2014).
Qualitative research normally uses non-random samples in order to collect data from participants (Polit and Beck [2001] 2014). Our findings suggest, that convenience samping was the most used sampling technique, although it`s considered the least rigorous procedure, that does not require much effort and time to conduct, is adequate to these type of studies (Elfil and Negida 2017; Shorten and Moorley 2014).
After analyzing the timeframe of the studies, only two studies were longitudinal, which represents a small percentage of the studies included. In fact, a recent overview of the research methods used in the research about spirituality in nursing found that only a small percentage of studies are longitudinal, and recommendations have been made to increase the use of that design in the study of patients’ spirituality over time (Martins et al. 2017).
The content analysis of the 23 articles resulted in two major themes: suffering and coping. In a study that found the prevalence of spiritual distress of 40.8% in cancer patients, 98.6% of patients having spiritual distress were in suffering (Caldeira et al. 2017). According to NANDA-I, the major defining characteristics of spiritual distress are anxiety, crying, fatigue, fear, insomnia, questioning identity, questioning meaning of life and questioning meaning of suffering (Herdman and Kamitsuru [1994] 2018, p. 375). The defining characteristics of anxiety, crying, fatigue, fear, insomnia and questioning identity are coincident with the sub-themes of suffering in this review. Additionally, Carlson et al. (2004) conducted a study with 3095 cancer patients over a four-week period, and the results displayed that patients reported having fatigue (48.5%) and anxiety (24.0%). Davis et al. (2013) found that female cancer patients are more likely to have insomnia (70.0%) than males (51%). Rydé et al. (2007) concluded that crying could be considered a way of expressing urgent needs, an expression for an inner emotional force, and may help to reduce tension, regardless of being energy consuming. Vrinten et al. (2017) identified what people fear the most about cancer, and the findings highlight that patients perceive cancer as an unpredictable and indestructible enemy, fear the proximity and the possibility of dying with cancer, and fear the emotional, physical and social implications of being known as a cancer patient.
Still, according do NANDA-I, other minor defining characteristics of spiritual distress are coincident with this review, such as: alienation, anger, guilt, hopelessness, feeling abandoned, and refuses to interact with significant other. The latter defining characteristics are related to the person`s connection with self, others, world and Superior Being (Herdman and Kamitsuru [1994] 2018).
The emergence of the major theme “suffering” in spiritual distress on cancer patients is consistent with Wilson et al. (2007), which found that 25.7% of cancer patients were suffering at a moderate to-extreme level and 24.9%, mildly. In a clinical validation study of the nursing diagnosis “spiritual distress”, Caldeira et al. (2013) identified that the most sensitive defining characteristic was “expressed suffering”. In this review, suffering is a major theme and was expressed throughout in all dimensions of cancer patients. In fact, suffering is considered a multidimensional (Best et al. 2015; Wilson et al. 2007), complex (Barton-Burke et al. 2008), and individual experience related to the culture and context of the patients´ lives (Wein 2011). In fact, the 25 sub-themes related to suffering underline the complexity of suffering. Spiritual distress is mainly considered as a condition of suffering (Simão et al. 2015), and a state of suffering associated to lack of meaning in life (Caldeira et al. 2017). In this review, finding meaning in suffering has been found critical while living with cancer. The role of meaning as a response to a time of crisis, such as cancer, can be operationalized as an adaptation process (Fife 2005).
Coping is a major theme is this review. A recently published concept analysis of coping in cancer patients defined coping “as a process of dealing with stressful events by means of cognitive appraisal, purposeful efforts, and use of available supports and resources in order to achieve physiological and psychological adjustment” (Yang 2018, p. 30). Furthermore, Nyatanga (2014) stated that coping is a response that patients must use to adjust and adapt when it comes to cancer, and this response is performed in many ways. The importance of using coping strategies is emphasized in the study conducted by Danhauer et al. (2009) that relates the use of coping strategies in improving the quality of life in younger women with breast cancer.
In this review, the findings suggest that coping was found a way to overcome suffering by cancer patients with spiritual distress, which was accomplished by several strategies based on patients’ connection with family/friends/self/spirituality/religion, connection to body and mind, hope, helping other patients, non-spiritual/religious therapies/practices, re-meaning, spiritual practices, support from family/friends, support from healthcare professionals, transcendence, transformation and trust in God/spiritual beliefs. This review revealed that cancer patients use coping strategies, such as spiritual and religious practices. These patients were found to have a high level of spiritual coping, mainly religious coping strategies (Khodaveirdyzadeh et al. 2016). Thus, religion plays a major role in meaning and is one coping strategy used by cancer patients (Barton-Burke et al. 2008).
Transcendence was also one of the sub-themes of coping. Advanced cancer patients’ spiritual experiences of transcendence have been linked to physical domain (less pain, sometimes less dyspnea) and psychological domain (less anxiety, better coping with illness, life and death) (Renz et al. 2015). Regarding the sub-theme support from healthcare professionals, Nyatanga (2014) mentioned that healthcare professionals play an important role in supporting the patient´s ability to adjust and cope with the illness.
Spiritual distress seems an experience patient feel in two dimensions: on one hand, suffering, that is a negative condition; but, on the other hand, the positive and transformative dimension expressed in coping strategies to overcome and transform suffering.
The findings of this review should be analyzed taking into consideration some limitations. The validation of the themes and sub-themes and the synthesis of the qualitative data were based only on the citations in the original papers. This review brings an inaugural insight, grounded in a synthesis of qualitative studies concerning cancer patients’ spiritual distress.

5. Conclusions

Spiritual distress is an intimate, deep and suffering experience in life, which requires coping strategies and involves spiritual values and beliefs. Spiritual distress may occur in cancer patients, and healthcare providers should be aware of this experience and recognize spiritual distress. Therefore, assessing spiritual needs and recognizing spiritual distress in cancer patients is considered critical in providing holistic care particularly in nursing. Spiritual distress comprises several manifestations and consequently, nurses require solid, ethical and compassionate relationships with cancer patients and their families, in order to facilitate the assessment of spiritual needs.
Spiritual distress comprises several manifestations and therefore nurses should be aware of self and their own limitations in providing spiritual care. Whenever necessary, they should request the support of another member of the healthcare team or refer patients to those who are able to provide an accountable intervention.

Author Contributions

H.M. and S.C. conceived and designed the study, analyzed the data and wrote the paper.

Funding

This research received no external funding.

Conflicts of Interest

The authors declare no conflict of interest.

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Figure 1. Study selection process.
Figure 1. Study selection process.
Religions 09 00285 g001
Figure 2. Major themes of spiritual distress.
Figure 2. Major themes of spiritual distress.
Religions 09 00285 g002
Table 1. Number of citations on the databases’ search.
Table 1. Number of citations on the databases’ search.
SearchCINAHLPsycINFOMEDLINEMedicLatinaLILACSSciELOPubMedAcademic Search Complete
S#1:
Cancer patients
86,40419,640284,290187811,3576845142,010372,783
S#2:
Cancer survivors
20,721498124,31649620612111,42975,480
S#3:
Cancer survivorship
436314315277175302816025534
S#4:
Malignant tumor
11,86188726,30391912,394145111,593125,431
S#5:
Neoplasms
453,77861,4042,421,03112,34651,47060192,389,420978,080
S#6:
Oncologic patients
557962117566633879993402
S#7:
Oncology patients
6686151710,7381371273848383929,090
S#8:
Tumors
453,77861,404825,96912,34624,9975529539,098978,080
S#9:
Spiritual distress
821285614423302361526
S#10:
Spiritual suffering
32217923269089672366
S#11:
Spiritual anguish
216170241114387
S#12:
Spiritual pain
28518322026767701942
S#13:
Spiritual struggle
2392751171225413579
S#14:
Existential pain
7886860272026556
S#15:
Existential suffering
523173370575541071120
S#16: (S#1
OR S#2
OR S#3
OR S#4
OR S#5
OR S#6
OR S#7
OR S#8)
494,16664,4172,730,41213,20655,37914,9912,543,3591,143,746
S#17: (S#9
OR S#10
OR S#11
OR S#12
OR S#13
OR S#14
OR S#15)
203110881505162208953310,120
S#18: (S#16
AND S#17)
1071170676101131691965
Table 2. Major themes and sub-theme of spiritual distress in cancer patients from qualitative studies.
Table 2. Major themes and sub-theme of spiritual distress in cancer patients from qualitative studies.
Major ThemeSub-ThemeCitation/ExampleReferences
SufferingAlienation“Being empty and in a vacuum is a feeling of becoming bare, “empty in the head”, experiencing difficulty in thinking and living”Hajdarevic et al. (2014, p. 3)Hajdarevic et al. (2014); McGrath (2002); Nilmanat et al. (2015)
SufferingAnger“I am very angry”Loh (2004, p. 131)Asgeirsdottir et al. (2013); Chio et al. (2008); Loh (2004); Nilmanat et al. (2015)
SufferingAnxiety“The evening I heard my diagnosis I immediately went to a friend’s house for the night. The next night I started feeling very anxious and I called a friend in California”Coward and Kahn (2004, p. E2)
“I had a problem with that. I was more anxious” Williams (2012, p. E44)
Blinderman and Cherny (2005); Chio et al. (2008) Cooper (2011); Coward and Kahn (2004); Halstead and Hull (2001); Kawa et al. (2003); Lindholm et al. (2002); Nilmanat et al. (2015); Perreault and Bourbonnais (2005); Williams (2012)
SufferingBody imageThink the loss of my hair is a major issue for me still, and just because every day you look in the mirror and you see that I’ve had leukemia. It is a constant reminder, smack bang in my face. And so I still find that extremely hard to deal with” McGrath (2002, p. 640)
‘I felt mutilated even if I still had my breast … I’ve got a hole.’ Perreault and Bourbonnais (2005, p. 515)
Bentur et al. (2014); Blinderman and Cherny (2005); Hajdarevic et al. (2014); Halstead and Hull (2001); Kawa et al. (2003); McGrath (2002); Nilmanat et al. (2015); Perreault and Bourbonnais (2005); Shih et al. (2009)
SufferingBurden to family“I think I may feel happier and feel free if I die early. I do not want to be tortured any more. I am very tired of having this kind of life. My children are very kind. But I wish to die early so as not to be their burdenChio et al. (2008, p. 740)
“He [her husband] saw that I had been crying, and then I said to him to be sure that he knew, that the day I cannot take care of myself I want to be cared for in a hospice, and that the family should not devote all their time to caring for me, and quite soon I felt how focus on the future came much closer to me” (Hajdarevic et al. 2014, p. 4)
Asgeirsdottir et al. (2013); Blinderman and Cherny (2005); Chao et al. (2002); Chio et al. (2008); Hajdarevic et al. (2014); Kawa et al. (2003); Lindholm et al. (2002); Nilmanat et al. (2015); Shih et al. (2009); Williams (2004)
SufferingCrying“You know when I last cried? About a week ago a couple came in here. I didn’t see the man, he stood behind the curtain. The woman was handsome, tall. She held a basket …. My son was hospitalized here for some time, he passed away. These sweets are in memoriam’. [Weeping] I started crying, that’s beautiful!”Bentur et al. (2014, p. 6)
“Felt withdrawn … (crying) … the pain is the scariest thing” Nilmanat et al. (2015, p. 395)
Bentur et al. (2014); Blinderman and Cherny (2005); Chio et al. (2008); Hajdarevic et al. (2014); Nilmanat et al. (2015); Perreault and Bourbonnais (2005)
SufferingDisconnected“I feel disconnected”Halstead and Hull (2001, p. 1538)Halstead and Hull (2001); Blinderman and Cherny (2005); Coward and Kahn (2004); McGrath (2002); Williams (2004); Williams (2012)
SufferingFatalismThe main change is that you see you are dying in a more realistic way” Montoya-Juarez et al. (2013, p. 56)
“I’m already in the coffin and they can come to the funeral home and look at me like I’m on display or something” Williams (2004, p. 35)
“But we always talk about everyday things and we don’t talk about life. We pushed life aside.” Bentur et al. (2014, p. 3)
Bentur et al. (2014); Blinderman and Cherny (2005); Halstead and Hull (2001); Kawa et al. (2003); Lindholm et al. (2002); Montoya-Juarez et al. (2013); Lindholm et al. (2002); Perreault and Bourbonnais (2005); Rahnama et al. (2012); Shih et al. (2009); Williams (2004); Williams (2012)
SufferingFearI’m not ready to die … I’m afraid … When you die, you must say goodbye to your children … your spouse, friends and family, you must say goodbye to your roles and dreams …” Perreault and Bourbonnais (2005, p. 517)
“I did start experiencing fear, and I would have moments of doubt” Halstead and Hull (2001, p. 1539)
Asgeirsdottir et al. (2013); Balducci (2010); Bentur et al. (2014); Blinderman and Cherny (2005); Chio et al. (2008); Cooper (2011); Coward and Kahn (2004); Halstead and Hull (2001); Kawa et al. (2003); Lindholm et al. (2002); Nilmanat et al. (2015); Perreault and Bourbonnais (2005); Williams (2004); Williams (2012)
SufferingForgiveness“If you don’t have the feeling of hatred, then you can easily forgive others, no matter what has happenedRahnama et al. (2012, p. 4)Chao et al. (2002); Perreault and Bourbonnais (2005); Rahnama et al. (2012)
SufferingGood death/Desire to die“I have been tolerating pain for a long time. In this torturing process, I with this tortured body have been through a difficult time. I feel very painful. If I could die early, I would not experience the torture anymore”Chio et al. (2008, p. 739)Chio et al. (2008); Kawa et al. (2003); Nilmanat et al. (2015)
SufferingGuilt/Punishment“I feel so bad about all of this. Everyone knows it’s my fault, but I can’t help it. I knew it was coming one day. I’ve been looking for it for years, smoking and all, being a mechanic and all. I won’t be around to see them grow up because of something I did to myself”Williams (2004, p. 32)
“I knew that, although I had tried not to commit any sins, I had committed some. After suffering cancer, I thought that this disease is a punishment from God and I was happy to accept this” Farsi (2015, p. 4)
Balducci (2010); Blinderman and Cherny (2005); Chao et al. (2002); Chio et al. (2008); Cooper (2011); Farsi (2015); Hajdarevic et al. (2014); Halstead and Hull (2001); Williams (2004)
SufferingHopelessness“Disability problems caused by the immobility of her legs led her to feel despair and hopelessness”Chio et al. (2008, p. 740)
“It’s worse not to know you have cancer and it’s eating you away and suddenly you have no hope…” Perreault and Bourbonnais (2005, p. 516)
Chio et al. (2008); Perreault and Bourbonnais (2005); McGrath (2002)
SufferingImpaired role performance“Actually I miss them so much. I am unable to care them anymore”Loh (2004, p. 131)
“The other problem is that I leave my children here and they have no one. My children don’t have anyone to fry an egg for them” Montoya-Juarez et al. (2013, p. 57)
Bentur et al. (2014); Blinderman and Cherny (2005); Chao et al. (2002); Kawa et al. (2003); Loh (2004); McGrath (2002); Montoya-Juarez et al. (2013); Perreault and Bourbonnais (2005); Williams (2004)
SufferingInsomnia“I mean, I couldn’t sleep, I couldn’t do anything”Williams (2012, p. E43)Nilmanat et al. (2015); Williams (2012)
SufferingLack of autonomy/dignity“It is very difficult. I feel like I am in prison. I walk around with my nephrostomy bag. My body does not function well”Blinderman and Cherny (2005, p. 374)
Hope that they would treat me not as an invalid like’s it’s something catching. (Williams 2004, p. 34)
Blinderman and Cherny (2005); Chio et al. (2008); Kawa et al. (2003); Montoya-Juarez et al. (2013); Nilmanat et al. (2015); Perreault and Bourbonnais (2005); Williams (2004)
SufferingFeeling abandoned (by relatives and friends)They took my money. But they do not take care of meChio et al. (2008, p. 739)Chio et al. (2008); McGrath (2002); Perreault and Bourbonnais (2005)
SufferingLoneliness“I am weak, alone. I don’t care”Blinderman and Cherny (2005, p. 374)
“I live every day knowing that my cancer is going to come back. It’s a very lonely thing; it’s very difficult. Some days you can handle it, some days you can’t” Williams (2012, p. E46)
“I feel lonely and scared because of my declining health (during the evening and night in particular)” Shih et al. (2009, p. E34)
Blinderman and Cherny (2005); Cooper (2011); Hajdarevic et al. (2014); Kawa et al. (2003); Lindholm et al. (2002); McGrath (2002); Shih et al. (2009); Williams (2012)
SufferingQuestioning identity“… And I needed to talk and talk and talk and talk and talk. Until it got to the stage where I had lost my identity”McGrath (2002, p. 642)McGrath (2002); Perreault and Bourbonnais (2005)
SufferingPhysical symptoms“I keep vomiting. If I did not have the urge to vomit, I would be able to walk without having to ask for help from others … [I] just wish that I would not need to vomit, so I could walk and care for myself”Rahnama et al. (2012, p. 397)
“I had so much phlegm I could hardly breathe half the time. I was a wreck physically, destroyed …” Williams (2012, p. E43)
Blinderman and Cherny (2005); Chio et al. (2008); Farsi (2015); Kawa et al. (2003); McGrath (2002); Nilmanat et al. (2015); Rahnama et al. (2012); Shih et al. (2009); Williams (2012); Williams (2004)
SufferingRefuses to interact with significant otherThey are fine. All of them are in school. I told them not to come” Loh (2004, p. 131)Loh (2004)
SufferingRelationship with God“At first I was angry at God”Blinderman and Cherny (2005, p. 376)Blinderman and Cherny (2005)
SufferingSocial isolation“Yes, I felt socially isolated. I didn’t feel like leaving my home or speaking with others for months”Blinderman and Cherny (2005, p. 375)
“I fear going out … [I am] not strong … [I am afraid of] getting infected … [I] just sit here (at the window), look at other people outside. Others are good [healthy] … can walk about and work, but I hide in the house. I cannot do anything … (sigh) … and think why it has to be me who is in this condition” Nilmanat et al. (2015, p. 396)
“I don’t talk to many people any more. I don’t hang around with the same friends and everything. My mother is gone and I’m not that close to my daddy. I haven’t kept in touch with any of my high school friends, so I guess it would be hard to find out” Williams (2004, p. 34)
Blinderman and Cherny (2005); Kawa et al. (2003); Nilmanat et al. (2015); Perreault and Bourbonnais (2005); Williams (2004)
SufferingUncertain futureIn the present situation, I am not healthy. It is true … I cannot talk about my future, because my physical condition tomorrow is unknown” Kawa et al. (2003, p. 484)Coward and Kahn (2004); Hajdarevic et al. (2014); Halstead and Hull (2001); Kawa et al. (2003); Perreault and Bourbonnais (2005); Williams (2004); Williams (2012)
SufferingWorthlessnessI am not afraid of losing my dignity. There is not much to loseBlinderman and Cherny (2005, p. 375)Blinderman and Cherny (2005)
CopingConnection with family/friends/self/spirituality/religion“Connect with friends on an intellectual levelBlinderman and Cherny (2005, p. 376)
“Doris reported that these rituals helped her feel connected to God, and that she felt supported and comforted by both priests’ visits” Cooper (2011, p. 29)
Asgeirsdottir et al. (2013); Bentur et al. (2014); Blinderman and Cherny (2005); Cooper (2011); Coward and Kahn (2004); Halstead and Hull (2001); Kawa et al. (2003); Lindholm et al. (2002); Rahnama et al. (2012); Perreault and Bourbonnais (2005); Williams (2012)
CopingConnection to body and mind“If the nausea comes, I fight it. You’re not going to vomit, no, no! I hold the vomit back and it hurts in my chest to hold it back. If I’m in a good mental and emotional state, I can hold it in.” (Bentur et al. 2014, p. 4)
“Once I am calm, I can tolerate my physical problems more easily” Rahnama et al. (2012, p. 5)
My mental health is connected to my physical health” Blinderman and Cherny (2005, p. 376)
Bentur et al. (2014); Blinderman and Cherny (2005); Chio et al. (2008); Rahnama et al. (2012)
CopingHope“I’ve got hope because I’m still alive”Perreault and Bourbonnais (2005, p. 516)Asgeirsdottir et al. (2013); Blinderman and Cherny (2005); Chao et al. (2002); Cooper (2011); Perreault and Bourbonnais (2005)
CopingHelping other patients“We met in the hospital. Then, we encouraged each other and made fun of each other, which made us feel better”Chio et al. (2008, p. 740)
“O yes, I still have the potential to help people, to make their lives a little better” Cooper (2011, p. 25)
Chao et al. (2002); Chio et al. (2008); Cooper (2011)
CopingNon-spiritual/religious therapies/practices“I’ve read since the transplant, you know, I’ve had a lot of time to read …. There is so much, you know, with New Age thinking and esoteric thinking and all that sort of thing, that I can’t make up my mind [laughs]. But I enjoy reading about it, it’s very interesting.” McGrath (2002, p. 239)Asgeirsdottir et al. (2013); Balducci (2010); Bentur et al. (2014); Blinderman and Cherny (2005); Chao et al. (2002); Chio et al. (2008); Cooper (2011); Hajdarevic et al. (2014); Halstead and Hull (2001); McGrath (2002); Perreault and Bourbonnais (2005)
CopingRe-meaning“Life has become for me a privileged experience of being in love. To love people surrounding me … to enjoy every moment … It’s to choose, not to endure, but to choose”Perreault and Bourbonnais (2005, p. 517)Albaugh (2003); Balducci (2010); Bentur et al. (2014); Blinderman and Cherny (2005); Cooper (2011); Hajdarevic et al. (2014); Halstead and Hull (2001); Perreault and Bourbonnais (2005)
CopingSpiritual practicesI believe very strongly in the power of prayer, and I feel that everybody that is praying for me … everybody who talked to me either when they’re at church or friends around me, I thought that was wonderful … A prayer is like a gigantic hug from a number of people, all the people that tell me that they prayed for me. It’s just something that encompasses me, a good positive feeling that lifts me” Albaugh (2003, p. 595)Albaugh (2003); Asgeirsdottir et al. (2013); Blinderman and Cherny (2005); Chio et al. (2008); Cooper (2011); Hajdarevic et al. (2014); Halstead and Hull (2001); Loh (2004); Perreault and Bourbonnais (2005); Rahnama et al. (2012)
CopingSupport from family/friends“My son had told his wife: May family has a great influence on my morale. I didn’t lose my heart because my mom and others treated me very well”Rahnama et al. (2012, p. 5)
“I couldn’t make a decision on therapy options without the help of my family and friends. Without them, I just wanted to die immediatelyShih et al. (2009, p. E34)
Bentur et al. (2014); Blinderman and Cherny (2005); Chio et al. (2008); Hajdarevic et al. (2014); Halstead and Hull (2001); Perreault and Bourbonnais (2005); Rahnama et al. (2012); Shih et al. (2009)
CopingSupport from healthcare professionals“A psychologist often came to see me. I could release the pressure suppressed in my mind through talking and communicating with him. For example, a while ago, one patient who was my roommate in the hospital died. Two days later, another one died. I felt so scared. He took me to the living room and talked to me. After talking with him, I felt better”Chio et al. (2008, p. 740)
With the nurse’s encouragement, my children told me that they needed me so much. I know it is difficult for us Taiwanese to say so. As a dying person, I’m so content and this has reaffirmed my strong sense of belonging” Shih et al. (2009, p. E35)
Blinderman and Cherny (2005); Chao et al. (2002); Chio et al. (2008); Shih et al. (2009)
CopingTranscendence“There is just something that is greater than you. You are not under its control or anything like that. There is some power that is higher than you, which I want to call a good one; a force that helps you in your daily difficulties and dutiesAsgeirsdottir et al. (2013, p. 1449)Asgeirsdottir et al. (2013); Coward and Kahn (2004); Chio et al. (2008); Farsi (2015); Shih et al. (2009); Williams (2012)
CopingTransformation“I guess I would say that a life-threatening thing happening to you is not the worst thing that can happen to you, it can make you a better person”Albaugh (2003, p. 597)Albaugh (2003); Perreault and Bourbonnais (2005)
CopingTrust in God/Spiritual beliefs“I was upset, but I didn’t claim it. I put it into God’s hands.” Ciele said, “I really gave it all over to God: ‘I don’t know what to do, but I trust that you will help me figure it out”Coward and Kahn (2004, p. E4)
“Religious support has been like cool drink of water and a crutch to help me on my daily walk through the desert” Shih et al. (2009, p. E35)
Albaugh (2003); Bentur et al. (2014); Blinderman and Cherny (2005); Chao et al. (2002); Chio et al. (2008); Cooper (2011); Coward and Kahn (2004); Farsi (2015); Hajdarevic et al. (2014); Halstead and Hull (2001); Loh (2004); Perreault and Bourbonnais (2005); Rahnama et al. (2012); Shih et al. (2009)

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