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Cancer Nursing:
doi: 10.1097/NCC.0b013e318268f983
Articles

Illness-Related Emotional Experiences of Patients Living With Incurable Lung Cancer: A Qualitative Metasynthesis

Refsgaard, Birgit MScN, RN; Frederiksen, Kirsten PhD, MEd, RN

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Author Information

Author Affiliations: Department of Respiratory Diseases, Aarhus University Hospital (Ms Refsgaard), and Faculty of Health Science, Department of Nursing Science, Aarhus University (Dr Frederiksen), Denmark.

The authors have no funding or conflicts of interest to disclose.

Correspondence: Birgit Refsgaard, MScN, RN, Department of Respiratory Diseases, Aarhus University Hospital, Noerrebrogade 44, 8000 Aarhus C, Denmark ( birgiver@rm.dk).

Accepted for publication July 4, 2012.

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Abstract

Background:

Living with incurable lung cancer often drastically changes the patients’ lives physically, socially, psychologically, and spiritually. The emotional experiences of patients with incurable lung cancer have been studied with a qualitative approach, but the findings are yet to be synthesized.

Objective:

The objective of this study was to synthesize interpreted knowledge on the illness-related emotional experiences of patients with incurable lung cancer.

Methods:

A qualitative metasynthesis was carried out to integrate the findings from 10 qualitative studies conducted between 1995 and 2011. The studies were critically appraised according to the method defined by Sandelowski and Barroso, and the findings were extracted, edited, and abstracted. The concept “loss” was imported as a method to synthesize the findings.

Results:

Eight themes of emotional experiences emerged: “guilt, blame, shame, and stigmatization,” “hope and despair,” “loneliness,” “changing in self-image and self-worth,” “uselessness and dependency,” “uncertainty and worries,” “anxiety and fear,” and “loss.” The loss experiences were categorized as unrecognized and clear losses.

Conclusion:

This study supports that patients with incurable lung cancer undergo illness-related emotions that can be identified as losses. Further studies are required to determine the best way for nurses to implement emotional care.

Implications for Practice:

Nurses play an important role in the acknowledgement of unrecognized and clear losses while caring for patients with incurable lung cancer.

Being diagnosed with incurable lung cancer often drastically changes the patients’ lives.1 Several quantitative studies address aspects of how living with lung cancer affects the patients’ lives and report that dyspnea and fatigue are central in the patients’ experiences. Studies by Henoch et al2 and Broberger et al3 find that dyspnea induces feelings of fear and anxiety, whereas Thygesen and Esbensen4 claim that fatigue results in both physical and social limitations, which may lead to feelings of isolation. Patients with lung cancer have also reported loneliness. McCorkle and Quint-Benoliel5 focus on the emotional experiences of living with lung cancer and describe an association between the physical symptoms and depression, anxiety, and feeling dependent on others.

The emotional experiences of patients with lung cancer have also been studied with a qualitative approach, but the findings of these studies are yet to be synthesized. To increase our understanding of the emotional experiences of patients with incurable lung cancer and consequently augmenting their clinical use, we performed a qualitative metasynthesis of 10 qualitative studies. The objective of the qualitative metasynthesis was not only to sum up the patients’ emotional experiences, but also to identify the patterns and relations between the findings and to interpret existing knowledge concerning the emotional experiences of patients living with incurable lung cancer.

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Objective

Our study aimed to synthesize interpreted knowledge from nursing research concerning the illness-related emotional experiences of patients living with incurable lung cancer.

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Methods

The method was guided by qualitative metasynthesis as described by Sandelowski and Barroso.6 Qualitative metasynthesis is a systematic comparison of the interpretive findings from qualitative studies followed by a synthesization into new interpretations or understandings of the subject. Consequently, a qualitative metasynthesis reaches beyond the sum of findings in the included studies. The purpose of the qualitative metasynthesis is to preserve the integrity of the qualitative research findings, to enhance the utility in practice and also impact future research.6–9

The process in this metasynthesis included 4 steps. First, we located relevant studies by searching in CINAHL, PubMed, PsycINFO, and Scopus. Second, as an appraisal of the studies, we evaluated the validity and transparency of the studies emphasizing the interpretation of the findings in the studies. Third, we made a qualitative metasummary, which included extracting findings, separating them from other elements of the reports, editing the findings rendering them accessible to the readers, and abstracting the findings. Finally, we interpreted the integration of the findings by importing the concept: Loss, as we derived this concept, is a common feature in the studies.6,10

In order to facilitate the reading of this study, we write “patients with lung cancer,” which refers to patients with incurable lung cancer, where reasonable.

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Search Strategy

Studies were identified through a systematic search in 4 electronic databases: CINAHL, PubMed, PsycINFO, and Scopus in the period between March 2008 and October 2011. Thesaurus and MeSH headings were used when available.

As there is no thesaurus in PsycINFO and Scopus, we searched in “all fields” and “keywords, title, and abstracts,” respectively.

We defined search words by using thesaurus and MeSH headings and made a consensus of, what we found adequate for the original search word. As an example, we found that “lung cancer” also corresponded to “carcinoma, small-cell lung,” “neoplasm lung,” and “carcinoma, non–small-cell lung.” Likewise, “emotional” corresponds to “feeling,” and “experience” corresponds to “life experience.” To define “qualitative studies,” we used the definition of qualitative studies used by Sandelowski and Barroso.6 The search words were used in combinations with “OR” and “AND.”

Language limits were set to German, English, Swedish, Norwegian, and Danish, as the authors can read these languages. Articles were included if they were qualitative studies and dealt with adults defined as 18+ years with incurable lung cancer from Europe, North America, Australia, and New Zealand. Mixed-method studies with unidentifiable qualitative data were excluded.

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Search Outcome

We retrieved 20 articles, some of which were duplicates. This left us with 13 articles, which we included in the further appraisal. After securitization of the titles and abstracts, we included 13 articles to be appraised according to the reading guide for appraising reports described by Sandelowski and Barroso.6 We did a comparative appraisal, which permitted the creation of cross-study summaries and displays of key elements in the included studies. A comparative appraisal promotes the recognition of features, trends, or patterns in the studies and helps to contextualize the findings and recognize studies derived from common parent studies and samples. We were also able to detect whether any information was missing in the articles and subsequently enhance the validity of the study. The validity of the findings depends on whether the findings are empirically grounded, and furthermore they must be the researchers’ interpretation of the data.6 Articles were therefore not excluded for quality reasons according to the validity and transparency of methods, but only if the interpretations were not grounded in identifiable empirical data or if the researchers only summarize data without interpreting them.6,7 The result of this appraisal is outlined in Table 1.

Table 1
Table 1
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The comparative appraisal disclosed 3 articles written by Murray et al11–13 based on the same informants, but in the study from 2007,13 the researchers added new interviews and thereby included 4 more patients with lung cancer. According to Sandelowski and Barroso,6 it is fully acceptable to include studies that are based on the same informants, and we therefore included them in the synthesis.

Six articles reported on studies including different groups of patients.11–16 We included 3 of the articles as the findings and interpretations clearly distinguished between the experiences of patients with lung cancer and patients with other diseases. The 3 other articles were excluded because the findings were not based on patients’ statements, the informants’ primary disease was not lung cancer, and the last one was excluded because the researcher did not interpret the findings.

Ten articles were finally included for the metasynthesis, and 3 were excluded, as presented in Table 2.

Table 2
Table 2
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Findings

The findings in our study consist of the metasummary, which includes data extraction, edition, and abstraction and the synthesis and the import of the concept loss.

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Metasummary

Data Extraction and Edition

We identified and extracted findings from the 10 articles that addressed the illness-related emotional experiences of patients with incurable lung cancer. The findings were subsequently edited into complete sentences to render them assessable for readers who had not read the original reports. Usually, a minor editing of the findings is required to make the sentences readable. The purpose of editing the findings is to make them comprehensible by adding a few words to make it easier to group them in the process of abstracting the findings.

During this process, we maintained the original wording as much as possible to preserve the authors’ intentions, as recommended by Sandelowski and Barroso.6 An example of this process is demonstrated in Table 3.

Table 3
Table 3
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Data Abstraction

The edited findings were subsequently grouped according to the same topic. We then reduced the statements into abstracted findings, where all topical similarities of the findings were classified.6 We identified contradictory findings within the groups. These contradictions were described, and we abstracted 8 findings.

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GUILT, BLAME, SHAME, AND STIGMATIZATION

Some patients with lung cancer felt guilty because they had been smokers and therefore blamed themselves their illness.19 They often looked back on their lives to try to make sense of why lung cancer had occurred, and for some, this entailed feelings of guilt.12

Some patients with lung cancer also experienced stigmatization because of their smoking, and some were afraid that people would stigmatize them because of this. The experiences of stigma were created by associating disease and smoking as a self-inflicted injury.20 Some of the patients with lung cancer did not want to talk about their disease as they did not want people to feel sorry for them or to feel demeaned by them.21

The studies emphasized that the reason patients both felt blame and experienced stigmatization was due to their having been smokers. On the other hand, a study20 revealed that few elderly people were less likely to feel blame compared with younger people.

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HOPE AND DESPAIR

We found that some of the patients with lung cancer tried to induce hope by contemplating about what they wanted to do before dying.12 We also found that patients with lung cancer found hope in their faith, believing that death was not the end, but a transition to everlasting life.13 Patients with lung cancer often switched between hope and despair as they tried to maintain a normal life.11,17 For some of the patients with lung cancer, it was hard to find any hope as the symptoms recurred.12 Some of the patients felt that their present life was pointless because they knew they were going to die.13 Other patients with lung cancer expressed hope about living a good life and enjoying the time they had left.19

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LONELINESS

Some patients with lung cancer experienced loneliness as they felt excluded from their social role due to stigmatization or lack of communication with relatives.13 As some of the patients did not speak to their next of kin, this would entail loneliness as they became socially isolated.

One study emphasized that cancer-related fear and anguish prevented patients from speaking to their next of kin, and thereby they felt lonely.21

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CHANGING IN SELF-IMAGE AND SELF-WORTH

Our study suggests that some patients with lung cancer felt that their self-image and self-worth had changed because of their illness. They experienced the strength to relate to a new identity because of their illness,20 and they experienced their identity changing, and therefore they had to relate to an identity as cancer patient.13 Patients with lung cancer in addition to experiences of changed self-image felt their self-esteem affected by the change in physical fitness; it affected their body image in that they were physically unable to do the same as before the illness.13 As they felt useless and dependent on others, some of the patients with lung cancer questioned their self-worth and their values to others.12 A lot of different aspects influenced the patients’ feelings related to self-image and self-worth.

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USELESSNESS AND DEPENDENCY

Our study shows that some patients with lung cancer felt useless because they were not able to perform some of their daily activities, or they were not able to represent their social and professional roles. Therefore, they often felt dependent on others.12,13 The patients were used to being independent, and some of them tried to maintain this by carrying on as usual, because they did not want to be a burden on the family.17,18

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UNCERTAINTY AND WORRIES

Some patients with lung cancer experienced uncertainty and worries as their future was unknown.13,18,19 They worried about whether they had led a good life and whether there was life after death.13 Some of the patients with lung cancer worried whether there would be time to say goodbye to their next of kin. Patients with lung cancer experienced uncertainty and worry, both because they knew they were going to die and because of the conditions related to their death. We found that some patients with lung cancer worried about how their relatives were going to manage after they had died.11,17 Some patients with lung cancer also worried about the way they were going to die.18 However, some of the patients with lung cancer denied worries other than the concerns related to dyspnea.14

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ANXIETY AND FEAR

Some patients with lung cancer felt anxiety and fear. The fear was due to the fact that they were going to die and to the experiences of dyspnea.13,22 The anxiety did not address anything in particular, but was a feeling expressed by the patients with lung cancer related to the feelings of depression and fear caused by their experiences of loss and frustration.13,21,22 Accordingly, fear and anxiety were distinctive for patients with lung cancer.

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LOSS

Some patients with lung cancer experienced loss of social welfare as the physical limitations increased. The patients also experienced loss related to their loss of control over own life and daily activities due to their illness and the symptoms it provoked.14 Some of the patients with lung cancer spoke of loss of independency as they could not maintain their role in society as an employee, and thereby they lost their financial independency and their role in the family.18,22 Patients also experienced loss of control over their situation as they did not know when or how the disease would develop.19 The loss of control also related to the spiritual distress as they did not know what the future would bring.12 The experiences of loss were caused by many distinctive aspects, both emotional and tangible issues. We therefore found that the concept of loss enveloped some of the experiences that patients with lung cancer encountered.

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Synthesis

To conduct an interpretative integration of the findings, we performed an interpretative integration by importing a concept into our interpretation. We borrowed the concept from the theoretical literature outside the reports and used it to integrate the findings and not just to organize them, and consequently synthesize the findings.6

We chose to import the concept “loss” into our synthesis from the work of the British psychiatrist Colin Murray Parkes,24,25 as we judged it to be crucial to accounting the experiences of patients with lung cancer. Parkes’ distinction between different types of loss renders it possible to illuminate different nuances in the patients’ experiences of loss, which we found supportive in our interpretation of the abstracted findings.

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IMPORTING THE CONCEPT OF LOSS

Parkes and Prigerson24 emphasize that loss can be defined as clear loss and unrecognized loss. The definition of a clear loss is a loss that cannot be disregarded as it is obvious for both patient and others that the patients have experienced a loss, for example, the loss of a leg when amputated.

Unrecognized losses can be classified as hidden loss, concealed or avoided loss, and gradual loss.25

Hidden loss is often associated with feelings of shame and inadequacy, and people who experience hidden loss do not confide the loss to anyone and tend to try not to think about the loss they have experienced: “If I don’t tell anyone about it, I won’t have to think about it and can pretend that it is not true.”25 When the loss is hidden and a person does not share the experience with others, there is a risk that the feeling of insecurity and fear increases and results in a feeling of isolation.25

Concealed and avoided loss is often caused by kindness because people conceal the truth from the patient or avoid asking the patients about their feelings, because they do not want to upset them. Gradual loss may appear if the progression of an illness is ignored.25

Some of the patients with lung cancer denied the feelings of stigmatization, blame,20 fears, and worries other than that of their dyspnea.14 These denials could be an expression of unrecognized losses as in hidden losses, as the patients did not express their losses.

Cancer-related fear can prevent patients with lung cancer from communicating with their relatives.21 This may lead to concealed and avoided losses when patients with lung cancer do not speak about their fears or what really matters.

Some of the patients with lung cancer felt the loss of relationship as fatigue hindered their being together with their families as they were accustomed to, and they might therefore feel isolated.13,22 We interpreted this as a gradual loss and thereby an unrecognized loss, because the relationship they used to have with their family changed gradually.

As the patients with lung cancer state, we characterized as clear losses the experiences of having no working life combined with the experiences of being unable to perform daily activities because of fatigue and dyspnea,18,22 as the loss is rather obvious to both patients and their surroundings.

When patients with lung cancer experienced losses, some of them had parallel feelings, for example, feeling of loneliness. Because of the cancer diagnosis, they felt ashamed and stigmatized and experienced that their relatives withdrew from them, and they subsequently experienced loss of relationship.13 Other patients felt useless and dependent on others, which changed their self-worth.12,13,20

According to Parkes and Prigerson,24 the feelings of loss are connected with grief. Reactions will ensue when we experience loss both emotionally and behaviorally. These reactions, for example, anger and shame, can complicate the course of grief; consequently, it is important to allow a person to cope with his/her losses.

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Discussion

The validity of a qualitative metasynthesis depends on the factual accuracy of data and the researchers’ ability to include all the pertinent studies and withdraw all the relevant findings from these studies.6 To ensure this, we did a comprehensive literature search in 4 selected databases, as our main interest was in the area of nursing. Our inclusion criteria adhered to Bondas and Hall’s26 contention that only peer-reviewed articles should be included in a metasynthesis, because they are assumed to have a certain quality. Our search therefore included peer-reviewed articles only, and we found 10 studies that addressed the emotional experiences of patients with incurable lung cancer. If we had included materials from other sources as suggested by Sandelowski and Barroso,6 we might have been able to identify more themes.

The interpretation of this metasynthesis augments the current understanding of the emotional experiences of patients with lung cancer related to their illness. The analysis disclosed that patients with lung cancer in particular felt blame and experienced stigmatization and that they also worried about how they were going to die. In addition, we found the patients’ experiences of loss important.

By importing the concept loss as defined by Parkes, it became possible to shed light on the unrecognized losses experienced by patients with lung cancer. It is notable that the patients experienced both unrecognized and clear losses. Parkes25 emphasizes that unrecognized losses may be the result of caregivers’ concealment or misrepresentation of the loss underlining the need for caregivers to acknowledge the patients’ grief. The concept loss is also mentioned in other studies. Women with breast cancer emphasize that they experienced both physical losses such as loss of hair, fatigue as the result of breast surgery, and emotional losses such as helplessness, a feeling of losing their next of kin, and questioning their own sense of worth27 Furthermore, the awareness of dying in the dying often clarified the social loss, as the patients know they are going to die.28

Communication with nurses in contact with patients is also very important for patients with cancer, as a positive exchange with them helps the patients to feel positive themselves.29 It also underpins the notion that care in relation to emotional aspects is of great importance for experiencing quality of life for cancer patients.30,31

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Conclusion

Our study demonstrates that patients with incurable lung cancer specifically experience stigmatization and feel blame and shame in relation to having been smokers. We also found that patients with incurable lung cancer experience clear losses as experiences of having no working life or being unable to perform daily activities because of fatigue and dyspnea.

Likewise, we found that patients with incurable lung cancer experience their losses as unrecognized losses. If the losses are not obvious for others, and the patients with incurable lung cancer do not explicate the feelings of losses to others, the losses will become unrecognized losses. The patients with incurable lung cancer experienced hidden losses because of stigmatization and feelings of blame or shame and pretend that the losses did not exist. Unrecognized losses may also be concealed or avoided losses as the feelings of fear can prevent the patients from communicating with their relatives. This may lead to feelings of loneliness, as they did not share their experiences of loss with their next of kin. Patients with incurable lung cancer also experienced gradual loss as the relationship they had with their family gradually changed because of their fatigue, which hindered them from being with their families as they were used to. Hence, having unrecognized losses may lead to the feelings of loneliness and fear.

The results of our metasynthesis cannot directly guide practice. They do, however, support studies in which patients with lung cancer have voiced a need to speak with others about their illness and prospects.4 It is therefore important that caretakers facilitate patients to voice their experiences of loss and not conceal or misrepresent these experiences, as the patients thereby may miss an opportunity to come to terms with the losses they have experienced and the losses to come.

Nurses should consider how to communicate with the patients about their experiences of loss to prevent further experiences of loss. If concealed by the patients and avoided by the carers, these experiences may turn into unrecognized loss.

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Keywords:

Experience; Feeling; Loss; Lung cancer; Metasynthesis; Qualitative study

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