|Ahead of print
Chronic grief experiences of nurses caring for the end-stage cancer patients: A mixed-method research
Nidhina Paul1, Cleeta Anline Pinto2, Netthu Paul3
1 Post Graduate Student, Nitte Usha Institute of Nursing Sciences, Nitte Deemed to be University, Mangalore, Karnataka, India
2 Department of Medical Surgical Nursing, Nitte Usha Institute of Nursing Sciences, Nitte Deemed to be University, Mangalore, Karnataka, India
3 Department of Medical Surgical Nursing, St John's College of Nursing, Rajiv Gandhi University of Health Sciences, Bangalore, Karnataka, India
|Date of Submission||30-May-2019|
|Date of Decision||06-Jun-2019|
|Date of Acceptance||29-Dec-2020|
|Date of Web Publication||14-Sep-2021|
Cleeta Anline Pinto,
Department of Medical Surgical Nursing, Nitte Usha Institute of Nursing Sciences, Nitte Deemed to be University, Mangalore, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Caring patients with terminal illness is one of the most challenging and difficult experiences encountered by nurses. Though they face immense grief while preparing these patients and their families to accept the illness, the grief experienced by the nurse is reported to be an insignificant entity due to their professional role and commitment to duty. On the other hand, ignoring this caring relationship can foster emotional burden and physical exhaustion among nurses leading to ineffective quality care. The present study aimed to capture the chronic grief experiences and the coping strategies of nurses caring for patients with advanced cancers.
Methods: A sequential explanatory mixed-method design was adopted for the study. From September 2016 till March 2017, 50 nurses from three oncology care hospitals in Mangalore were selected using purposive sampling (homogeneous sampling). Modified grief experience inventory followed with in-depth interviews with the oncology nurses to identify their grief, work-related challenges, bereavement, and coping strategies was carried out. Quantitative analysis was carried out using SPSS version 16. Interviews were analyzed using Colaizzi's method of qualitative analysis, and a meta-matrix was developed to merge the results.
Results: The mean numbers of nurses who experienced moderate level of grief are 83.24 (standard deviation: ± 17.4, range: 51-125). Six themes emerged from the interviews were grief over circumstances, sense of powerlessness, physical and emotional exhaustion, engaging in self-controlling behaviors, self-nurturance, and compassion satisfaction.
Conclusion: Nurses face unique challenges while caring for patients with end-stage cancer, but timely debriefing strategies could be further explored to improve these experiences and improve nurse's efficiency in providing quality care to these patients.
Keywords: Cancer, chronic grief, nurses
Key Message: There is grief among the nurses caring end-stage cancer patients due to work role obscurity and conflict, increase stress and challenging work environment. It is recommended to provide with necessary staff-oriented services that offer comfort, reward, leisure, screening, consultation and support.
(Current affiliation of Nidhina Paul: Department of Medical Surgical Nursing, Dr. Moopen's Wayanad Institute of Medical Science, Kerela University of
Health Sciences, Wayanad, Kerala)
| » Introduction|| |
End-of-life care of patients with advanced cancer poses a herculean and most challenging task for nurses as significant responsibility lies on the health care team to identify patient's or families reactions to the condition and support as well as prepare them for their physical, emotional, social, cultural, and spiritual crises. Grief, a common and most distressing normal and complex response of loss is not only experienced by patients diagnosed with advanced cancer and their families but also nurses caring for these patients., This emotional reaction results in physical exhaustion as nurses expend maximum time with these patients being critical and most importantly alleviating suffering. They are vulnerable to high levels of personal burnout, emotional overload, stress, declining job performance, and poor psychological wellbeing.,
Several research studies have identified the ill effects of work-related stress but most of them being focused on the impact of physical health of nurses caring end-of-life patients and very little on the grief or the psychosocial aspects. Different phenomena are used to describe these ill-effects, such as compassion fatigue and burnout syndrome. Compassion fatigue is referred as “the stress resulting from helping or wanting to help a traumatised or suffering person.”, Joinson also defined compassion fatigue as unique stressors that affect people in caregiving professions.
The present study intends to explore the grief experiences of nurses and their coping skills towards the inadequately addressed grief experience.
| » Methods|| |
Overview of the study design
The study adopted a sequential explanatory mixed-method design. Participants were recruited from three oncology care hospitals in Mangalore for a year. Quantitative and qualitative methods were used, wherein the quantitative strand of the design was dominant. This design intends to expand and validate the quantitative results with the qualitative information.
The researcher recruited the nurses caring for diagnosed cases of end-stage cancer patients and fulfilling the inclusion criteria into the study through purposive sampling. Informed consent was obtained from the study participants, and confidentiality was assured. The institutional ethics board approved the study protocol (Ref No. NUINS/CON/NU/IEC/2015-16).
Quantitative data collection
Demographic data and the modified grief experience inventory (MGEI) [Annexure 1] were the instruments used to gather the data. The inventory had 22 statements in four domains, i.e., existential tension (six items), depression (six items), guilt (three items), and physical distress (seven items). The items were rated using a Likert scale and grief were classified as mild (50–75), moderate (76–100), and severe (101–125). The tools were tested for content validity and reliability. The Cronbach's alpha of reliability was 0.9.
Quantitative data analysis
Karl Pearson's correlation coefficient was used to find the relationship between the various domains of grief inventory. The frequency and percentage were used for the item-wise analysis; the association between grief and selected variables was checked using Chi-square and Fisher's exact tests.
Qualitative data collection and analysis
After the quantitative data collection, five nurses from the group who experienced severe grief were further interviewed through a semistructured interview guide [Annexure 2] to explore their grief experiences and the coping strategies. Informed consent was obtained, and confidentiality was assured to the participants. The interviews were all in English language, tape-recorded, and transcribed verbatim. Each interview lasted approximately 30 minutes. One research assistant transcribed all interviews, and these were verified by the investigator, followed by a process known as member checking to review the accuracy of the data and enhance the validity. The analysis of the interview was performed manually using a phenomenological approach with Colaizzi's method of analysis. Reading and coding were performed by two authors independent of each other. The codes were derived from the text following the research question, then summarized across cases to yield rich descriptive analysis. The interviews were analyzed line-by-line at each step. The codes were grouped into categories; after additional abstraction, the themes emerged were compared and analyzed. Subsequently, each code and theme was discussed. If any discrepancy, the conclusions were made through discussions.
Integration of quantitative and qualitative data
Triangulation is one of the major objectives in mixed-method research. “Triangulation is a method in which two research methodologies are combined in the study of the same phenomenon.” This helps the researcher to verify and assist in the results which are related to the similar experiences and thereby improve the internal and external validity.
In this sequential explanatory mixed-method study, the quantitative data were collected before the qualitative data. After the quantitative data were analyzed, the qualitative data were analyzed to yield emergent themes before integration. The data were integrated by comparing qualitative and quantitative evidence. To enhance the methodological rigor, concordance of the quantitative measures for various domains of grief inventory and qualitative descriptions were checked. Concordance was checked by first identifying the quantitative results for different domains of grief inventory, such as existential tension, depression, guilt, and physical discomfort. Later, search for qualitative quotes that described each of the domains under the grief inventory was identified and then checked if they were in concordance. The next step was an examination of the theme of these domains individually. An information matrix was developed to compare and contrast the quantitative data with the emergent themes.
The design of [Figure 1] is adapted from the “sequential exploratory design,” described by Creswell (2003), in which the model assigns top most priority on the qualitative data collection. The design uses collection and analysis of the qualitative data followed by collection and analysis of the quantitative data. In this study, prime concern was on the quantitative element and later the qualitative element which assisted in forming assumptions and triangulating the survey results. The analyses from the three phases were integrated at the stage of result interpretation.,
| » Results|| |
| » Quantitative results|| |
In this study, the mean values are expressed in mean ± standard deviation. The age of the nurses ranged between 23 and 50 years. The mean age was 29.6 ± 7.5 (range: 23-50) years. Majority 44 (88%) of them were women, 32 (64%) completed diploma in nursing, 17 (34%) had completed B.Sc. nursing, and one staff nurse (2%) had completed master's degree. The mean year of experience of the nurses in the oncology wards was 3.88 ± 4.27 (range: 1-20) years. The mean numbers of nurses that cared for end-stage cancer patients in a year was 22.4 ± 26.7 (range: 3 - 150), whereas the mean numbers of death experienced in care was 20.5 ± 26.7 (range: 1 - 150). The mean numbers of chronic grief of the nurses was 83.24 + 17.4 (range: 51-123), existential tension was 22.3 + 5.58 (range: 13-36), depression was 22.14 + 6.03 (range: 13-36), for guilt was 11.6 + 3.06 (range: 6 - 18), and for physical distress was 27.12 + 5.43 (range: 17-41).
Of the 50 nurses, 17 (34%) experienced mild level of grief, 26 (52%) experienced moderate grief, and 7 (14%) experienced severe grief [Figure 2]. Five nurses who experienced severe grief score based on MGEI, between 101 and 125, were selected for the integration of the data. All five (100%) experienced the feeling of helplessness, 40% felt life was empty and barren. Eighty percent of the nurses felt the urge to cry in a particular situation of the patient and 60% had a feeling of exhaustion. Forty percent of the nurses exhibited a sense of anger frequently, and 40% also felt guilty by the death of the patients. Eighty percent felt that religious faith is their internal strength and 40% of them exhibited features of headaches. The findings of the present study have been summarized in [Table 1].
|Table 1: Distribution of demographic characteristics of the nurses (n=50)|
Click here to view
The narrative accounts of perceived grief revealed six themes from the study such as: a sense of powerlessness, physical and emotional exhaustion, grief over circumstances, engaging in self-care behaviors, compassion satisfaction, and self-nurturance.
Theme 1: Grief over circumstances
The nurses expressed a feeling of grief and stress while dealing with unexpected events in working places such as the death of patients after caring for some time. The length of patients stay and the intensity of the patients suffering affect the emotions of the nurses which made them unable to concentrate on their professional life.
Participant 1: “Some patients stay for one month…they will be very close to us…. I feel very bad to care for such a patient as I know I am going to lose him.”
Theme 2: Sense of powerlessness
The oncology nurses felt helpless in their profession. Caring for dying patients requires a great deal of personnel commitment, and nurses experience a constant feeling of not doing enough for the patients. Sometimes they failed to develop trust in the patients. The researcher also found the spiritual dilemma from the participant's response.
Participant 1: “Yeah, that feeling sometimes it's there ------- I feel like God is not taking them, better God accept him, instead of making him struggle more. If they are here, they should get relief from the disease. If they don't want to be here, then God should take them from here.”
Theme 3: Physical and emotional exhaustion
The nurses experienced psychophysiological health problems. When they come across young patients and their questions seem to be unanswerable, it causes extreme stress to the nurses. The futile conditions of patients make the nurses feel exhausted. The nurses believe that they provide the best care to the patients and need to be appreciated for their commitment by patients and relatives, but still, some of the relatives find it is not sufficient, which makes them frustrated. Nurses believe that taking care of cancer patients is an emotional challenge.
Participant 5: “Some patient bystanders….will try to blame us. But (in) that situation we feel so bad because of the …care we give…”
Theme 4: Engaging in self-care behaviors
The result of the present study reveals that nurses have difficulty in handling their deep emotions in oncology settings; they engage themselves in talking to their colleagues and having a meeting with them, talking to family, etc., to cope with their emotional feelings.
Participant 5: “We used to conduct team meetings and discuss patient cases…. so…we feel a little comfort.”
Theme 5: Compassion satisfaction
Participants expressed their satisfaction of providing quality care to their patients. Though they felt that nothing much could be done to prolong the life of the patient, they could emotionally support the bereaved families. They felt a sense of satisfaction with the work they do for the patients and their families. They trust in God and believe that God has chosen them for his work, which is the ultimate strength to overcome their emotions and grief.
Participant 1: “I provided my level best care to them….so for the small period they got little relief at least… I feel happy …. I felt that this is the work which God wants me to do for him.”
Theme 6: Self-nurturance
Most of the nurses used different methods to ventilate their distress, which included trying to distract the mind from patient's death, positive thinking, overcoming the stress by engaging with patient care. These measures fostered them to release their tension in a positive manner
Participant 2: “listen to music………… and after prayer I will be okay.”
| » Integrated results|| |
The integration of the results showed that all nurses had a feeling of existential tension, expressing their helplessness, loss of self-confidence, and feelings of emptiness in life. The qualitative data says (Participant 1: “Because all… patients coming here will die one day, [I] know [I] can't do anything [and feel helpless]”) (Participant 4: “we…feel…we lost [someone]”) (Participant 3: “sometimes we feel helpless, sometime not confident enough.”). Participants expressed the feeling of depression in different ways by exhibiting emotions like crying while seeing the patient's condition, difficulties in concentrating, extraordinary feelings of anxiety and discomfort in routine activities, and exhaustion. The qualitative data says: Participant 1: “I feel like crying”. Feeling of guilt was expressed by feeling irritated and angry at the end, due to the death of the patient, who they cared for. Forty percent of the nurses reported feeling of heaviness in the arms and legs while caring for the end-stage cancer patients which denoted physical exhaustion. Most of the nurses reported that frequently they get headache and also sleeplessness in the night. Eighty percent of them reported that their religious faith is the source of strength and courage. Qualitative data says: Participant 1: “I have some pain…body pain…leg pain…”; Participant 3: “I have some irritations after the death of my patient, sweating, headache”; and Participant 4: “I try to relax by prayer, I also go to temple and pray for my patients”. The findings of the present study are shown in [Figure 3].
| » Discussion|| |
In the current study, we explored the chronic grief experience of the nurses for end-stage cancer patients. It was found that 48% of the nurses strongly agreed that they felt helpless in their profession, and 62% of them had felt guilty because of patient death. These findings were in concordance with a study conducted by Borhani et al. in the United States on the pediatric oncology nurse's lived experiences of loss and grief where the oncology nurses experienced helplessness and guilt in their job. The study finding says 44% strongly agreed they had sleepless nights most of the times, and 52% of them get angry over patient death. Forty-three (86%) of the participants strongly agreed that their religious faith is the source of inner strength and comfort.
In contrast to the above findings, Puchalski et al. in their qualitative study state oncology nurses experienced anger and sleeplessness after their patient's death; they also say that the religious faith gives more strength to the nurses to take care of end-stage patients. In the present study, 25 (50%) of them had experienced existential tension and guilt, whereas 26 (52%) of them had suffered depression due to patient death. Majority, 29 (58%) of the nurses experienced physical distress. There was no supportive data available on these findings.
Six themes were derived, such as grief over circumstances, sense of powerlessness, painful emotions, engaging in self-controlling behaviors, self-nurturance, and compassion satisfaction.
The nurses experienced stress due to the work setup, patient care setting, and fear about the role they performed. Giving care to younger patients was frustrating due to their futile condition. Higher work demand leads to lack of perfection. All these responses indicated grief over circumstances.
Borhani et al., in her study, reported that nurses remain highly stressed; stress reactions manifest cognitively and physically; and nurses are unable to perform the work up to the standards. The experiences of pediatric oncology nurses deeply affect their professional, individual, and even family life.
Nurses' expression of sense of helplessness in the profession is explained as “best care was provided to the patients, but were unable to save their patient's life.” Nurses verbalized the failure to develop trust in their patients concerning their life expectancy. The spiritual dilemma was assessed from the interview, a few of them lost faith in God and started questioning God, and a few prayed for their patient's recovery”.
Nurses experienced painful emotions while caring patients with advanced cancer. They found themselves to be emotionally unstable and frustrated. These stressors affected their physical, emotional, and psychological health. Peters et al., in his study, stated that nurses are frequently exposed to dying patients and death in the course of their work. The experience makes individuals conscious of their death, often giving rise to anxiety and unease. Nurses who have intense anxiety about death may be less comfortable providing nursing care for patients at the end of their life.
Engaging in self-controlling behavior was another theme. It was found that the nurses also tried to manage their stress adopting coping strategies such as sharing their experiences with family and friends, conducting team meetings, and discussing patient's health conditions and management measures for the future.
Compassion satisfaction was expressed by all nurses in the study which expressed their willingness to take care of end-stage patients and also their beliefs and trust, which motivated them to provide the best care to their patients.
With regard to self-nurturance, the nurses used different methods to ventilate their distress, which included distracting the mind from patient death, positive thinking about patient death, overcoming the stress by engaging with patient activities, listening to music, and by accepting death. Shinbara et al. in their study explain that the nurses use a wide variety of cognitive, affective, and behavioral approaches to cope up with the emotional stress. The staff members help each other to overcome the burden by sharing the experiences, utilizing the leisure time, socialization, and also by spiritual support.,
Finally, the study states that nurses taking care of end-stage cancer patients are stressed with the workload, frequently witnessing the critical conditions, emotional instability, work system, and physical health issues. A mixed-method study conducted in Greek to find out the nurses' and doctors' grief as a result of caring for the children dying from cancer. Death of the patient caused a sense of helplessness and powerlessness. Both group participants reported physical and psychological problems because of their patient death, such as overwhelming, weakness, fatigue, and stress.,
In the current study, the researcher identifies a lag in the support system for oncology nurses. The nurses are unable to manage their stress healthily and are emotionally unstable, which results in the lack of quality care and psychophysiological health depletion. Hence, it is recommended that a strong support system be established in oncology settings with frequent in-service educative program on empowering nurses caring for terminally ill patients.
There are many people involved in a research project who are not authors but have provided valuable contributions. I would like to acknowledge my gratitude to Ms. Georgiaria Fernandes, Editorial Assistant – Indian J Cancer for her guidance in editing the manuscript, technical assistance and also Dr Fatima Dsilva, Dean Nitte Usha Institute of Nursing Sciences for helping in language editing and proof reading of the manuscript.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| » Annexure 1: Modified Grief Experience Inventory|| |
This tool has been designed to understand the grief experienced by the nursing professional while caring for end-stage cancer patients. Read each item and decide quickly how you feel about it, then circle your item that best describes your opinion put down your first impression. Please answer all the items.
Recode subject response as follows
1 = 4, 2 = 5, 3 = 6, 4 = 1, 5 = 2, 6 = 3
Sum of the scales for score, the higher the score, the more the grief
| » Annexure 2: Semistructured open-ended questionnaire|| |
- What are your feelings towards the chronically ill patients while caring for them?
- Describe the feeling that you experienced immediately after the death of patient you cared for?
- What are the stressors that you undergone after the death of the patient you cared?
- What were the methods you adopted to overcome those situations?
- What form of support do you get from your institution to assist you to cope with grief issues in your unit?
- What is your opinion on attending continuing nursing education or workshop for the management of grief?
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[Figure 1], [Figure 2], [Figure 3]