Introduction
Gastrointestinal cancer includes cancers of the esophagus, liver, stomach, gallbladder and biliary tract, pancreas, gastrointestinal stromal tumors, small intestine, colorectal, and anal (World Cancer Research Fund and American Institute for Cancer Research 2018). The worldwide prevalence of gastrointestinal cancers is as follows: colorectal cancers (19.5%), stomach (11.1%), and liver (9.5%). Colorectal cancers (9.1%) are the third most common type of cancer in both genders in Turkey (Globocan 2020). Gastrointestinal cancers are diagnosed at an advanced stage in some patients. Advanced cancer is defined as the type of cancer that has spread from where it first started to nearby tissues, lymph nodes, or other parts of the body and that is unlikely to be controlled with treatment (National Cancer Institute 2023). Advances in cancer treatments have changed the course and prognosis of the disease, and patients diagnosed with advanced cancer can live longer (Thorne et al. Reference Thorne, Oliffe and Oglov2013). Like other types of cancer, advanced gastrointestinal cancer has many physical and psychosocial difficulties (Lim et al. Reference Lim, Laidsaar-Powell and Young2022). The strength to cope is important to overcome psychosocial difficulties. Coping strategies are affected by illness perceptions of individuals (Lan et al. Reference Lan, Zhang and Zhang2019).
Illness perception is patients’ views, beliefs, and emotional responses to illness and treatment (Hopman and Rijken Reference Hopman and Rijken2015). Patients with cancer who have a positive illness perception have a high quality of life and experience lower cancer and treatment-related symptom intensity (Ośmiałowska et al. Reference Ośmiałowska, Staś and Chabowski2022). Illness perception has a mediating role between symptom clusters and quality of life (Zhang et al. Reference Zhang, Wang and Chen2022). Patients with a good illness perception have lower hopelessness levels (Nehir et al. Reference Nehir, Tavşanli and Özdemir2019). As illness perception decreases, patients’ quality of life as well as physical and social well-being increase (Aydın Sayılan and Demir Doğan Reference Aydın Sayılan and Demir Doğan2020). Illness perception may be an underlying risk factor for chemotherapy-associated nausea and vomiting (Kus et al. Reference Kus, Aktas and Ozcelik2021).
Patients with advanced cancer are closer to death, and they report high death anxiety (Hong et al. Reference Hong, Yuhan and Youhui2022). North American Nursing Diagnosis Association International (NANDA-I) defines death anxiety as “a vague, restless feeling of discomfort or fear caused by the perception of a real or imagined threat to one’s existence” (North American Nursing Diagnosis Association International 2007). As death anxiety increases, depression and anxiety levels increase in patients receiving cancer treatment (Su et al. Reference Su, Zhou and Han2022). Determining death anxiety is important in meeting the end-of-life care needs of patients with advanced gastrointestinal cancer. Although patients with advanced cancer have high death anxiety, death anxiety of patients and their physical and psychological reflections are still not routinely questioned. Death anxiety is negatively associated with life satisfaction (Taghiabadi et al. Reference Taghiabadi, Kavosi and Mirhafez2017).
Satisfaction with life “is a cognitive component of subjective well-being and includes cognitive judgments about one’s life” (Diener Reference Diener1984) and has been defined as “an overall assessment of individuals’ quality of life, based on their selected criteria” (Shin and Johnson Reference Shin and Johnson1978). Low satisfaction with life is associated with psychiatric symptoms such as anxiety, depression, and low quality of life (Lorenzo-Seva et al. Reference Lorenzo-Seva, Calderon and Ferrando2019). Patients with advanced cancer often experience a lower quality of life due to the burden of physical symptoms and psychosocial problems (Van Roji et al. Reference van Roij, Raijmakers and Ham2022), and quality of life is affected by death anxiety (Neel et al. Reference Neel, Lo and Rydall2015). In patients with cancer, life satisfaction is associated with resilience and coping strategies (Adamkovič et al. Reference Adamkovič, Fedáková and Kentoš2022) and coping styles are affected by illness perception (Richardson et al. Reference Richardson, Schuez and Sanderson2017).
Nurses have an important role in the care of individuals with advanced cancer. Well-planned nursing care improves quality of life and alleviates psychological and physical symptoms in patients with advanced cancer (Tang et al. Reference Tang, Chen and Wen2019). In this period, in addition to knowing about the illness perception, death anxiety, and satisfaction with life levels of individuals, knowing the effects of sociodemographic characteristics on these variables is also important in the planning and implementation of nursing care, as well as in dealing with the psychosocial aspect of cancer treatment. Knowing the effect of the perception of illness on death anxiety and satisfaction with life and providing a positive perception of illness can be effective in reducing the physical and psychosocial symptoms experienced by patients with advanced gastrointestinal cancer and can facilitate adherence to treatment. This research has been conducted to determine the effects of illness perception on death anxiety and life satisfaction in patients with advanced gastrointestinal cancer and will be a pioneer for similar studies.
Research questions
1) What is the illness perception, the death anxiety, satisfaction with life levels of patients with advanced gastrointestinal cancer?
2) What is the effect of sociodemographic characteristics on illness perception, death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer?
3) Does illness perception affect death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer?
Methods
Study design
The present study has a cross-sectional and correlational design.
Study setting and sample
Population of the study consisted of patients with advanced-stage gastrointestinal cancer who were admitted to the oncology clinic of a university hospital in the Central Anatolia Region of Turkey between March and December 2022. Sample group consisted of patients (1) who met the criteria for inclusion in the study between these dates (ages between 18 and 80 years, (2) having a diagnosis of Stage 4 gastrointestinal system cancer (esophagus, stomach, colon, rectum, pancreas, liver), (3) knowing about being diagnosed with advanced-stage gastrointestinal cancer, (4) being open to communication and cooperation, (5) being conscious and able to answer questions, and (6) accepted to participate in the study. In order to determine the sample size of the study, mean death anxiety score of Salehi Zahabi and Mahmoudi (Reference Salehi Zahabi and Mahmoudi2017) in patients with breast cancer was used. As a result of the priori power analysis made in the G*Power 3.1.9.2 statistics program, the minimum required sample size was 125 individuals which was determined with 95% confidence (1 − α), 95% test power (1 − β), d = 0.333 effect size and 2-way t test. In the study, 125 individuals were reached between these dates. These values indicate that the sample size is at the desired level.
This sample size did not meet the minimum sample size of 200 people required for performing structural equation modeling suggested by Kline (Reference Kline2023). Therefore, structural equation modeling could not be performed in the research.
Measurement instruments
Research data were collected in 10–15 min through face-to-face interviews with patients. “Patient Descriptive Information Form,” “Brief Illness Perception Questionnaire (BIPQ),” “Scale of Death Anxiety (SDA),” and “Satisfaction with Life Scale (SWLS)” were used to collect data.
Patient Descriptive Information Form
The form prepared by the researchers consists of 11 questions in total, including age, gender, marital status, educational status, employment status, income level, disease duration, disease stage, metastasis status, diagnosis, and body mass index.
Brief Illness Perception Questionnaire
It was developed by Broadbent et al. (Reference Broadbent, Petrie and Main2006). Turkish validity and reliability of the scale in patients with cancer was conducted by Karatas et al. (Reference Karatas, Özen and Kutlutürkan2017). Turkish version of the scale consists of 7 items and an additional item in which causal factors are questioned. Except for the eighth item, in which the causal factors of the disease are questioned, the remaining 7 items have a Likert-type scoring scale between 0 and 10. Items 2, 3, and 6 are reversed to calculate the scale score. The scale consists of 2 subdimensions. Emotional illness representations subdimension consisted of Items 1 (consequences), 4 (illness identity), 5 (concern), and 7 (emotions). Cognitive illness representations subdimension consisted of Items 2 (personal control), 3 (treatment control), and 6 (coherence). An increase in the total score indicates that the disease is more alarming and threatening. In other words, high scores from the scale indicate more negative illness perceptions. Cronbach’s alpha value is 0.85 in the Turkish validity and reliability study (Karatas et al. Reference Karatas, Özen and Kutlutürkan2017). Cronbach’s alpha value was found as 0.74 in the present study.
Scale of Death Anxiety
SDA was developed by Templer (Reference Templer1970) to evaluate death anxiety. It was adapted to Turkish by Akça and Köse (Reference Akça and Köse2008). The scale consists of 15 items and it is a 2-item Likert-type scale with the options of correct and incorrect. Items 1, 4, and 8–14 of the scale are accepted as correct and other items as incorrect. The score range is between 0 and 15 in the scale. When the mean score in the scale is 7 and above, it is interpreted as high level of death anxiety. As the scale score increases, it shows that there is an increase in death anxiety. Cronbach’s alpha value of the scale was found as 0.75 (Akça and Köse Reference Akça and Köse2008). Cronbach’s alpha value was found as 0.70 in the present study.
Satisfaction with Life Scale
SWLS was developed by Diener et al. (Reference Diener, Emmons and Larsen1985) to evaluate satisfaction with life, which is the cognitive and judgmental dimension of subjective well-being. It was adapted to Turkish, and its validity and reliability study were conducted by Dağlı and Baysal (Reference Dağlı and Baysal2016). Turkish version of the scale consists of 1 factor, 5 items, and 5-item Likert-type scale. Minimum possible score from the scale is 5, while the maximum possible score is 25. Cronbach’s alpha value of the scale was found as 0.88 (Dağlı and Baysal Reference Dağlı and Baysal2016). Cronbach’s alpha value was found as 0.91 in the present study.
Data assessment
SPSS version 22.00 statistical program was used for data assessment. Percentage, mean, and standard deviation descriptive statistics were used. Kurtosis and sewness coefficients were used to analyze the normality distribution of the data. Simple and multiple regression analyses were performed. p < 0.05 was accepted as the level of significance.
Results
Mean age of the patients who participated in the study was 63.21 ± 10.70 years, mean duration of disease was 16.91 ± 17.72 months, and mean body mass index score was 24.25 ± 4.69. In this study, 56% of the patients were male, 84.8% were married, 65.6% were primary school graduates, 70.4% had an income equal to their expenses, 92% were unemployed, 41.6% had colorectal cancer, 98.4% had metastasis, and 97.6% perceived their disease stage as stage 4 (Table 1).
Sociodemographic characteristics of the patients
CA: cancer; X = Mean, SD = standard deviation.
It was found that the mean SDA total score of the patients who participated in the study was 8.02 ± 3.16 and the mean SWLS total score was 14.74 ± 5.19 (Table 2). The mean BIPQ total score was 39.54 ± 12.82, emotional illness representations subdimension mean score was 26.06 ± 8.66, and cognitive illness representations subdimension mean score was 13.40 ± 6.86.
The mean B-IPQ, SDA, and SWLS scores of the patients
B-IPQ = Brief Illness Perception Questionnaire, SDA = Scale of Death Anxiety, SWLS = Satisfaction with Life Scale, X = Mean, SD = Standard deviation.
Multiple regression analysis was performed to estimate the variables—such as age, gender, marital status, educational status, employment status, income level, disease duration, disease stage, metastasis status, disease diagnosis, and body mass index—and mean scores of B-IPQ, SDA, and life satisfaction. When the analysis result for mean BIPQ score is examined, it can be seen that the model created was found to be statistically significant (F(19,105): 2.301, p = .004). Among the variables included in the model, education level (β = − .408; β = − .275) was found to be a statistically significant negative predictor of illness perception, while metastasis status (β = .267) was found to be a statistically significant positive predictor of illness perception. When the analysis result for life satisfaction is examined, the model created was found to be statistically significant (F(19,105): 2.576, p = .001) and disease duration (β = − .198) was found to be a statistically significant negative predictor of satisfaction with life. When the analysis result for SDA is examined, the model created was found to be statistically significant (F(19,105): 2.202, p = .013). In addition, it was found that disease duration (β = .199) was a statistically significant positive predictor of death anxiety, while body mass index (β = − .206) and education level (β = .346) were statistically significant negative predictors of death anxiety (Table 3).
Regression analysis results in terms of sociodemographic characteristics
* p < .05. B-IPQ: Brief Illness Perception Questionnaire; SDA: Scale of Death Anxiety, SWLS: Satisfaction with Life Scale.
As a result of the regression analysis, it was found that the independent variable significantly (F(1,123) = 161,783, p < .05) affected the mean SWLS total score, which was the dependent variable, and explained 56% of it. It was also found that the independent variable was a negative predictor of the SWLS total score average (β = −.591). In the study, it was found that the independent variable in the second model significantly (F(1,123) = 158.972, p < .05) affected the total mean score of SDA, which is the dependent variable. In the regression analysis, it was found that the independent variable had a positive effect on the total mean score of SDL (β = .751) (Table 4).
Regression analysis results
* p < .05. B-IPQ: Brief Illness Perception Questionnaire; SDA: Scale of Death Anxiety, SWLS: Satisfaction with Life Scale; DW: Durbin–Watson.
Discussion
Examining the effect of illness perception on death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer may help to better understand the psychosocial adjustment in this patient population. At the same time, no study has been found examining the effect of illness perception on death anxiety and life satisfaction in patients with advanced gastrointestinal cancer.
In this study, it was found that the participants had moderate level of illness perception. Illness perception questionnaire has questions on parameters such as being affected by the illness, duration, belief in treatment, understanding the illness, and emotional effects increase total score. From this point of view, it can be seen that the participants had a moderate level of negative illness perception. In a study by Miceli et al. (Reference Miceli, Geller and Tsung2019) in patients with advanced gastrointestinal cancer, it was found that patients had moderate level of illness perception. In a study conducted by Uysal and Akpınar (Reference Uysal and Akpınar2013) with type 2 diabetes patients, it was found that the patients had a negative illness perception. In a study by Küçükkaya and Erçel (Reference Küçükkaya and Erçel2019) on patients with gynaecological cancer, it was found that the patients had moderate level of illness perception. Similarly, in studies conducted on different groups, patients were found to have a moderate level of illness perception (Demir and Demir Reference Demir and Demir2022; Miyazaki et al. Reference Miyazaki, Nakashima and Nakamura2018; Süt Reference Süt2017). Our research results show similar results with the literature. Based on these results, it can be said that patients with advanced gastrointestinal cancer consider their disease as frightening and threatening.
In this study, it was found that the participants had a high level of death anxiety. Similar to our research, studies conducted on patients with advanced cancer have found that patients experience high levels of death anxiety (Hong et al. Reference Hong, Yuhan and Youhui2022; Vehling et al. Reference Vehling, Malfitano and Shnall2017). In different studies conducted on patients with cancer, it was found that the patients had high death anxiety (Nazari et al. Reference Nazari, Khoshnood and Shahrbabaki2023; Shakeri et al. Reference Shakeri, Abdi and Bagi2022; Soleimani et al. Reference Soleimani, Bahrami and Allen2020, Reference Soleimani, Lehto and Negarandeh2016; Turan and Dural Reference Turan and Dural2022). At the same time, it has been observed in studies that patients with cancer experience death anxiety frequently (Neel et al. Reference Neel, Lo and Rydall2015; Shakeri et al. Reference Shakeri, Abdi and Bagi2022). Being diagnosed with cancer is a painful experience for patients and since it is constantly associated with death, it causes patients to experience many fears and anxiety about death (Bibi and Khalid Reference Bibi and Khalid2020). In this context, it can be concluded that patients with advanced gastrointestinal cancer may have many fears about death and this will lead to more death anxiety.
In this study, it was found that the participants had moderate level of satisfaction with life. In some studies similar to our study, it was found that patients with cancer had a moderate level of satisfaction with life (Hamdan-Mansour et al. Reference Hamdan-Mansour, Al Abeiat and Alzoghaibi2015; Jafari et al. Reference Jafari, Najafi and Sohrabi2010; Polański et al. Reference Polański, Chabowski and Jankowska-Pola2020; Vazquez et al. Reference Vazquez, Rahona and Gomez2015). In another study conducted, it was found that more than 47.4% of patients with cancer were moderately, highly or extremely satisfied with their lives (Rustøen et al. Reference Rustøen, Cooper and Miaskowski2010). However, in some studies, unlike our study, patients with cancer were found to be highly satisfied with life (Fonseca et al. Reference Fonseca, Lencastre and Guerra2014; Hamdan-Mansour et al. Reference Hamdan-Mansour, Al Abeiat and Alzoghaibi2015). The results of the study show both similarities and differences with the literature. This may be due to the fact that the studies were conducted at different periods and in different regions. In addition, the fact that satisfaction with life was not low in our study is an important positive result, and it can be said that patients with cancer do not necessarily consider the disease as an indispensable interruption of life, but as a challenge and a chance to reflect and change their behavior and life.
In the study, it was found that the increase in education level of the participants affected illness perception negatively, and the presence of metastases affected illness perception positively. In their study, Küçükkaya and Erçel (Reference Küçükkaya and Erçel2019) found that patients with metastases had higher disease perception scores and a negative illness perception. It was also found in literature that patients with low education level had high illness perception scores (Süt Reference Süt2017; Yorulmaz et al. Reference Yorulmaz, Tatar and Saltukoğlu2013; Zhang et al. Reference Zhang, Fielding and Soong2016). Results of the study are similar with the literature. Patients with a low education level perceive the disease less well, they think that it will be chronic, they are affected more emotionally, they perceive the complaints related to the disease negatively, they perceive that they have no control over their disease, and their general health perception worsens (Süt Reference Süt2017). Therefore, in our study, it is expected for illness perception scores to decrease; in other words, for illness perception to be positively affected as the education level increases.
In the study, it was found that as the participants’ duration of illness increased, their satisfaction with life decreased. Cancer affects individuals and their families physically, emotionally, spiritually, cognitively, socially, and economically and causes their lifestyle, expectations and quality of life to be negatively affected. At the same time, it is known that the quality of life in patients with cancer is negatively affected as the duration of the disease increases (Kumsar and Yılmaz Reference Kumsar and Yılmaz2014). Considering all these, a negative relationship between life satisfaction and disease duration is expected in our study.
In the study, it was found that the increase in the duration of illness affected death anxiety positively, while the increase in education level and body mass affected death anxiety negatively. In a study, it was determined that there was a positive correlation between the time that passed since diagnosis and death anxiety in patients with cancer (Soleimani et al. Reference Soleimani, Lehto and Negarandeh2016). Bjelland et al. (Reference Bjelland, Krokstad and Mykletun2008) reported that high level of education had a protective effect against anxiety that accumulated throughout life. Education also enables individuals to understand the disease process and complications correctly and facilitates their management of the disease process (Ganasegeran et al. Reference Ganasegeran, Renganathan and Manaf2014). It is estimated that more than half of all patients with cancer develop a cachexia syndrome with anorexia and progressive loss of adipose tissue and skeletal muscle mass (Aoyagi et al. Reference Aoyagi, Terracina and Raza2015). This situation is an insidious syndrome that does not only have a dramatic impact on the patients’ quality of life but also causes poor responses to chemotherapy and it complicates survival (Aoyagi et al. Reference Aoyagi, Terracina and Raza2015; Dewys et al. Reference Dewys, Begg and Lavin1980). Cachexia is seen in the majority of patients with fatal cancer. According to Warren (Reference Warren1932), it has been reported to be responsible for the death of 22% of patients with cancer. Our research results show similar features with the literature.
In this study, it was found that the participants’ illness perception had a positive effect on death anxiety. There are no studies in the literature examining the relationship between illness perception and death anxiety. For this reason, it is thought that the study findings will support the literature. In line with this result of our study, it is thought that the participants’ thinking that they have no control over the disease due to their negative perception of the disease, that the treatment has no effect on the disease and does not reduce the symptoms of the disease, that it increases the existing anxiety instead of reducing it, that they do not fully understand the disease, and that their emotional state is negatively affected causes an increase in death anxiety.
In this study, it was found that the participants’ illness perception affected their satisfaction with life negatively. There are no studies in the literature examining the relationship between illness perception and satisfaction with life. For this reason, it is thought that the results of the study are important in terms of filling this gap in the literature. Based on the results of this study, considering that the patients’ perception, interpretation, and evaluations of their illness affect their emotional and behavioral reactions, coping style, psychosocial status, and quality of life directly (Karabulutlu and Karaman Reference Karabulutlu and Karaman2015), it is considered that it is inevitable for satisfaction with life to decrease with the increase in negative illness perception.
Limitations of the study
This study has some limitations. First, the data were collected via self-report scales, so the possibility of widespread method biases should be considered. Second, the study has a cross-sectional design. Therefore, experimental and longitudinal studies are recommended for future research to investigate the relationships between these variables. Third, it cannot be generalized to the whole population because it is a single-center research and includes patients with advanced gastrointestinal cancer. Fourth, the sample size is small.
Conclusion
In this study, it was found that patients with advanced gastrointestinal cancer had moderate levels of illness perception and satisfaction with life, and high level of death anxiety. It was found that as patients’ illness perception increased, their death anxiety increased and life satisfaction decreased. In line with these results, it is recommended for nurses to place more importance to the evaluation of patients’ illness perception in care practices, and to implement interventions to improve illness perception in patients, to eliminate problems related to illness and treatment, and to increase compliance with illness and treatment. At the same time, the results of this study will contribute to the nursing literature and will be useful for future interventional research.
Acknowledgments
The authors are grateful to all the study participants for their cooperation in this study.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Competing interests
The authors have no conflict of interest to disclose.
Ethical approval
Approval from the scientific research ethics committee of a university (02.02.2022 dated and 19-138 numbered) and permission from the institution where the study would be conducted (16.02.2022 E-14567952-900-156128) were obtained for this study. Verbal and written consents were obtained from the patients who participated in the study. This study was carried out in accordance with the ethical standards of the Declaration of Helsinki.
