|Ahead of print
An interpretive phenomenological analysis of hope in cancer patients: A qualitative study
Fauzia Nazam1, Akbar Husain2, Seema Devi3, Rajesh Kumar Singh3
1 Post-Doctoral Fellow, University Grant Commission, New Delhi, India
2 Department of Psychology, Faculty of Social Sciences, Aligarh Muslim University, Aligarh, Uttar Pradesh, India
3 Department of Radiation Oncology, Indira Gandhi Institute of Medical Sciences, Patna, Bihar, India
|Date of Submission||14-Jan-2020|
|Date of Decision||17-Jan-2020|
|Date of Acceptance||02-Nov-2020|
|Date of Web Publication||16-Jul-2021|
Post-Doctoral Fellow, University Grant Commission, New Delhi
Source of Support: None, Conflict of Interest: None
Background: In positive psychology, increased recognition of the phenomenon of hope among people suffering from cancer, along with alleviating their negative mental states like anxiety, depression, and fear of death is evident and promising. The aim of the study was to explore the lived experience of hope in cancer patients.
Materials: Qualitative phenomenological research approach was used. A semi-structured in-depth interview with open-ended questions was administered to explore the patient's hope related experiences during the journey of cancer. A purposive sampling technique was used to select a total of 10 participants for the study. The size of the sample was decided on the basis of literature for the interpretive phenomenological study.
Results: Results revealed five major common themes related to hope during illness: (1) survival expectation; (2) will to live; (3) prognostic clarification; (4) positivity of health providers; and (5) recovery of other patients: A source of hopefulness.
Conclusion: The lived experiences of cancer patients shows that hope is the positive expectation of survival, which is a source of motivation during their journey of illness. It also denotes goal setting behaviour. Thus, hope is the “will to live” which is related to social support, positive communication with healthcare providers, and recovery of fellow patients.
Keywords: Cancer patients, hope, interpretive phenomenological analysis, phenomenology
Key Message: The journey of cancer patients shall also be seen from positive perspective of hope. Hope is derived from positive expectations of survival, goal-setting behaviour, will to live, positive dialogue with healthcare providers and recovery of fellow patients.
| » Introduction|| |
Innumerable psycho-oncological researches have focused widely on negative experiences of cancer patients such as depression, anxiety, near-death experience, psychological, social and spiritual distress, stress, and medical interventions.,,,,, Intriguingly, the journey of cancer patients can be seen from a more adaptive perspective. Studies support the elements of positive experience of these patients such as positive life appraisal, attention to health behavior, and post-traumatic growth. One such conceptual framework can be “hope.” Hope is an enduring dispositional trait regardless of the situation. However, some works cater to the state of hope also, which is more situation-specific in nature., Interestingly, hope is inner power directed towards enrichment. It has also been confirmed as a crucial factor in a patient's journey of cancer.,,,, Hence in the present study, hope is conceptualized as an enduring dispositional trait. The objective of this study was to explore the meaning of hope in cancer patients.
| » Methods and Materials|| |
Ten participants, five men and five women between the age of 21–61 years with a median age of 49.50 years (mean age: 46 years [standard deviation: ±13.56 years]) [Table 1] were purposively drawn from the out-patient department of State Cancer Institute, Patna, India. Inclusion criteria were patients who had been diagnosed with cancer at least a year ago and completed their chemotherapy/radiotherapy/surgery no less than 3 weeks ago at the time of the interview, ability to understand and speak clearly. Exclusion criteria were patients who underwent radiation/chemotherapy/surgery on the day of data collection, inability to vocalize the answer because of surgery or any other reason, and family pressure or reluctance not allowing the patient to participate.
In this study, the qualitative phenomenological method was used. A semi-structured, in-depth interview with open-ended questions was conducted to explore the experience of patients.
After the approval of the study from the host institution, the participants were approached by the first author in the above-stated cancer institute. The purpose of the study was briefed to them. Post-acquisition of the participant's consent, the interview was conducted in the psycho-oncology clinic of the institute. The questions focused on the lived experience of cancer patients, from the early symptoms of the disease to multiple medical tests including computed tomography (CT) scan, magnetic resonance imaging (MRI), blood tests, surgery, biopsy report, diagnosis, cycles of chemotherapy, radiation therapy, medication, and the continuing treatment. Since in the present study hope is conceptualized as a dispositional enduring trait therefore patients were taken from different types of cancer, irrespective of stages. The participants were asked questions such as “what was their experience on hearing the diagnosis of cancer for the first time?” “After diagnosis how long it took to decide for treatment?” “What were their thoughts behind taking treatment?” “What do they tell to themselves and to the children/family before undergoing treatment?” “When they see other patients after their chemotherapy what do they think or say to themselves?” Prompts were also used for example “can they explain their verbalization to self?” A reflective question such as “what is hope for them?” “Do they clarify their health status from the doctor?” “What is their experience out of that conversation with the doctor?” During the interview, nonverbal cues were taken into special consideration to give the pause time to patients, since the narrative was an emotionally laden experience especially while patients narrated their experience of the diagnosis. The transcripts and audio-recording were analyzed case-by-case to make a constant link of field notes with the participant's experience.
The interpretive phenomenological analysis was used in this research in the following steps:
Step 1: Listening to the audio-recording and making sense of transcripts. The process of listening to and exploring the meaning of the patient's interview was iterative in nature. The single interview was listened to twice or sometimes more to capture the relative position of the patient's meaning of experiences. The researcher used knowledge of exploring hermeneutic cycles while listening to the audio recording, that is understanding the meaning of the patient's narration in the background of the given experiential context.
Step 2: Simultaneously while listening to the recording all the statements relevant to the research question (to explore the meaning of hope in cancer patients) of each case were penned down.
Step 3: While listening to and exploring meaning the researcher tried bracketing his/her own values, thoughts, and preconceived notions about the phenomenon in the patient's context and tried her level best to understand the meaning in the patient's phenomenal world or context.
Step 4: After deriving meaning from the statements, commonality in meaning across the cases were sorted out and put together in a broad theme. For this constant comparison of meaning across the patient's narratives was done and once again researcher tried to bracket theoretical knowledge of the research topic.
Step 5: Subsequently, the sub-themes were identified. In the two major themes, the researcher was able to identify the sub-themes because the identification of themes and sub-themes is not very linear in narratives.
Step 6: After that, by combining all the themes and sub-themes a structure of hopeful thinking was prepared.
Step 7: Finally, the researcher explained the identified themes to the participants again, to ensure the originality of the meaning derived by the researcher. In this study, only the last four patients could participate in this task.
| » Results|| |
Five major themes emerged followed by some sub-theme by reading the memos and listening to audio recordings of narrations. Through case by case, analysis commonality was sought across the narrations. Following themes were identified: (1) survival expectation; (2) will to live; (3) prognostic clarification; (4) positivity of health providers; (5) recovery of other patients: A source of hopefulness
It was exciting to note that cancer patients had positive survival expectations from their treatments. Their common belief was undergoing chemotherapy, radiation, surgery, and follow-up would help alleviate their illness. The experience of positive expectation made them more resilient during the process of illness. The subtheme was treatment—a perceived goal. In the expectation of survival, most patients were found to set their treatment goal and despite many interim hurdles, they would come for treatment and hope for a cure. Thus, they reflected their positive proactive attitude toward treatment, which could be clearly concluded from their responses below:
”My village is so far from here but I never miss the date of radiation. I travel overnight and reach the hospital in the morning. I live on the street after reaching… I travel despite it that travelling costs a lot.” (Participant 2).
”I never miss my appointment with the doctor thinking that doctor will tell me something positive…I want to be all right.” (Participant 4).
”Initially the diagnosis of my illness was not clear. I went through many tests. The moment I came to know that I have cancer, within a day or so I approached doctors for the treatment.”(Participant 9).
”I compromise with my diet. I drink ground pulses mixed in water since I am a poor person but I buy medicines.” (Participant 7).
”My mouth keeps on paining but I come for every appointment. For my health, I am doing all this.” (Participant 3).
Will to live
This phenomenon is a level up to illness. Patients were found to unburden their illness and had a willingness to live for their family members. This denotes a further sub-theme that is the role of social support in their hopeful thinking. It is considered a relative phenomenon of hope. The study was conducted on patients living in rural areas where mostly the patients belonged to lower socioeconomic status. Treatment was expensive for poor people and they reported that they lost their savings of a lifetime in the course of treatment. During the process of illness, their family members served as a source of hope to live. The following statements reflect this theme:
”When the reports of CT scan came and I got to know that I have cancer. I decided to go for treatment to live.” (Participant 4).
”For me, hope is to live. I want to live for my daughter, she is just two years old. I want to live for my husband.” (Participant 2).
Similar studies on cancer patients reported that they join formal support groups for their mental health, but in the villages, it is informal groups like the family that provides support and hope. The members add hope to their life and meaning to their survival.
Patients seek prognostic clarification about their medical reports and treatment. The subtheme is realistic cognitive orientation. Patients were eager to know the realistic outcome of their treatment.
”Whenever I meet the doctor I seek information about my body, information related to my illness and recovery… I follow all medical tests prescribed by the doctor.” (Participant 1).
”I ask the doctor whether I will be benefited by radiation and chemo.” (Participant 6).
”I always ask the doctor that is the lump in breast reducing in size?” (Participant 9).
Positivity of health providers
The positive conversations with healthcare providers gave them hope and helped them maintain faith in the treatment process. This refers to the phenomenon that, hopefulness is related to the positive words of healthcare providers.
”My doctors says that after chemotherapy you will feel better. This makes me feel relaxed.” (Participant 10).
”Doctors say to have faith, things will be ok.” (Participant 5).
”When I meet doctors they say that you will be ok.” (Participant 1).
Recovery of other patients: A source of hopefulness
Cancer patients make a constant comparison of their health condition with the more severe patients around them and experience positivity by the recovery of other patients. They feel positive about themselves when they find cancer survivors around them. Constant comparison with other patients helps in the relative positioning of illness.
”When I see other patients recovering in the hospital, I feel if they can survive then I also can!” (Participant 4).
”In my village, there is a person who has survived cancer and is still alive. I will be cured. Right Madam?” (Participant 1).
”When I come to the hospital and see others with cancer I feel I am not the only one…if everybody is getting cured I will also get cure.” (Participant 2).
”When I see other patients in the hospital I feel I have a far better condition than them.” (Participant 5, 6, 7, and 9).
”Patients of advance cancer stage make me feel that my illness is less severe than theirs. My health is better than theirs. So I will be ok as well.” (Participant 10).
| » Discussion|| |
Based on major themes and the subthemes it is concluded that for cancer patients hope is a “positive expectation for survival.” This positive expectation is a source of motivation and also results in goal-setting behavior, for example, avoidance of absenteeism from designated appointments despite interim hurdles, efforts to buy medicines by curtailing other needs, etc. The theme is consistent with similar research done in the other geographical location such as in the west Danish University Hospital, Denmark, in which researchers identified a theme as “hope for recovery serving as a compass through the changed everyday life.” The study is also supported by the findings of Eliott and Olver “hope of dying cancer patients for the cure.” The results further get theoretical validation from the theory of hope given by Snyder and Model of Hope by Dufault and Martocchio. The former theory states hopeful thinking is characterized by the agency (motivation) and pathways (plans to meet the goal)., It is also found that high hopeful people have a sense of goal-directed determination and they believe in producing workable goals. The latter theory was developed by the grounded theory approach among cancer patients, which conceptualizes hope of two types—generalized hope and particular hope. Generalized hope is more protective during despair.
Further for cancer patients, hope is “will to live” that shows an attitude of determination. Will to live is related to social-support from their family, the positivity of healthcare providers and, the recovery of other patients. The results of the present study are in unison with the researches showing that the will to live is related to close relationships. In a similar study, William and Jeanetta studied the lived experience of cancer survivors after diagnosis and treatment and found that support from family was a source of courage and strength across different stages of treatment. The significance of social-support for cancer patients is also a theoretical component in the Model of Hope by Miller and Powers, which states that mutuality and affiliation in inter-personal experience, establishment, and achievement of goal are the essential elements of hope. Further, people suffering from cancer seek prognostic clarification, which enables them to look ahead of their treatment process. This theme is consistent with the study conducted by Yang et al. In their study they found a similar theme and named as “eagerness to know.” The positivity of healthcare providers inculcates hope in cancer patients. This theme is corroborated by studies also confirming healthcare professionals to contribute towards hope as described by patients., Recovery of other patients has also been observed to give hope to cancer patients because these survivors often share their wisdom and hope.
| » Conclusion|| |
Cancer patients continuously redefine their journey to illness. Therefore, through open communication different elements of hope can be identified in their personality, in order to understand their journey from a positive perspective.
This study was reviewed and permitted by the ethics committee of the State Cancer Institute (Receipt Academic Cell:1468/dated 30/5/2019) and conducted in accordance with the Declaration of Helsinki (1964). Further consent of participants was taken and pseudonyms were used to maintain the confidentiality of participants' identity.
Financial support and sponsorship
This research was funded by University Grant Commission of India.
Conflicts of interest
There are no conflicts of interest.
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