The purpose of this study was to explore the emotional and psychosocial experiences of Ghanaian women living with advanced breast cancer in the Kumasi metropolis. The study employed a qualitative exploratory descriptive design. Purposive sampling approach was used and data was saturated with 10 participants aged between 32 and 65 years. All interviews were audio-taped and transcribed. Data was analyzed concurrently based on the techniques of content analysis. Anonymity and confidentiality were ensured. Women experienced emotional reactions such as sadness, fear, and anxiety. Pain was severe and led to suicidal ideations. Women experienced lost hopes regarding their marriage, parenting, and work. They received support from their families, spouses, colleagues, health professionals, and spiritual leaders. Women coped by accepting the disease and surrendering to God and having the will to live. Five major themes described were emotional reactions, pain, lost hope, support, and coping. It was recommended that health care providers involved in breast cancer management should be trained to enhance effective and holistic care of women and their families. Also, patients with advanced disease should be given effective pain management and a multidisciplinary palliative care team should be instituted to care for the women.
Breast cancer is a devastating disease among women and it is known to be associated with severe emotional and psychosocial consequences. The emotional and psychosocial experiences of breast cancer patients are well documented in many countries [
Studies that focus exclusively on ABC have explored differences in quality of life when different medical treatments are used [
Consistent with findings from the Korle-Bu Teaching Hospital, the Oncology Department of Komfo Anokye Teaching Hospital (KATH) also reported that about 51.4% of women presented with stage IV breast cancer from 2004 to 2008 (KATH Records, 2009). The authors of this study observed in their clinical work that ABC presents emotional and psychosocial problems for women in Ghana and these require a systematic exploration. Most people believe that patients with ABC die soon after diagnosis and do not therefore find it worthwhile exploring their experiences. However, women with the disease could live for a number of years [
The study employed a qualitative exploratory descriptive design to answer the research question: What are the emotional and psychosocial experiences of women with ABC? This design was used to explore, understand, and describe the emotional and psychosocial experiences of women diagnosed with advanced breast cancer [
The study was conducted at KATH in the Kumasi metropolis. The hospital serves patients from across the country and has a bed capacity of about 1,000. It has several departments, including the Oncology Department which was the recruitment outlet. The participants were drawn from the Kumasi metropolis, the second biggest city in Ghana with an estimated population of 1,690,488 [
Women living in the Kumasi metropolis who have been diagnosed with ABC were included in this study. Participants were purposively recruited to include women diagnosed with ABC who could express themselves in the “Twi” dialect or English (languages the first author could speak fluently) and consented to participate. Women at the terminal stages who found it difficult to communicate were excluded from the study. Also, women with obvious psychiatric disorder were excluded from the study. Obvious psychiatric disorder was identified from the behavior of potential participants, such as mannerisms and inappropriate answers, history from the family, and the healthcare team’s records documented in the women medical folder. This was part of the recruitment screening by the first author. Purposive sampling ensured that women who met the inclusion criteria were recruited.
The sample size of the study was 10. This was determined after the 10th participant was interviewed. The data reached saturation by the 10th interview as successive participants gave similar responses and no new themes or subthemes were generated. The study employed purposive sampling technique; this allowed sufficient recruitment of participants who met the inclusion criteria for the study. Thus, the first author purposively recruited participants she believed could provide more in-depth information on lived experiences of advanced breast cancer [
The authors sought formal permission with an introductory letter stating the purpose of the study and gave a copy of the ethical approval to the head of the oncology unit. Two nurses at the oncology unit helped to recruit the participants (recruitment links). The “link nurses” were asked by the authors to give the study’s information sheets to the potential participants. In cases where potential participants could not read and understand the information sheet, the link nurses read and explained the content of the information sheet to them. The authors had a preinterview interaction with the “link nurses” to specify the purpose of the study and the inclusion and exclusion criteria. They were provided with a reminder sheet which spelt out the purpose of the study and inclusion and exclusion criteria and an information sheet (recruitment tool) to give them full information about the study. This helped the nurses to assist in recruiting appropriate participants. The first author’s contact number was made available to the nurses and they alerted the first author when a potential participant was identified. The first author subsequently screened potential participants to confirm their suitability for the study while maintaining confidentiality
The first author collected the data through face-to-face interviews using a semistructured interview guide. Responses were probed or redirected where necessary to ensure full understanding of the participants’ emotional and psychosocial experiences and also to ensure that interviewees responded within the study objectives. The interview guide was made up of stem questions with probes.
Please tell me how you felt when you discovered that you had breast cancer.
Probe:
So what happened next? So what did the doctors or nurses tell you? Please tell me about the treatment you have gone through so far.
Probe:
After the treatment, what happened? Side effects. Complications. Please share with me how you have been managing your life after the diagnosis.
Probe:
Work. Family support. Marriage. Financial issues. Please can you share with me a typical day of your life after the diagnosis? Is there anything else you would like to tell me?
All interviews were transcribed from “Twi” (local dialect) to English based on the meaning of the respondents’ comments. The authors discussed the transcription with a person competent in “Twi” and English to ensure accuracy of translation while maintaining confidentiality. Interviews were scheduled at participants’ convenience. All participants preferred to be interviewed in “Twi.” Field notes were written after each interview to include nonverbal cues and researcher’s reflections during the interviews as well as key concerns of the participants.
Data was analyzed concurrently with data collection, applying the techniques of content analysis [
Trustworthiness of the study was ensured by the following criteria: credibility, dependability, confirmability, transferability, and authenticity [
Ethical approval was obtained from the Institutional Review Board at the Noguchi Memorial Institute for Medical Research, University of Ghana. Permission was sought from the oncology unit of the Komfo Anokye Teaching Hospital, Kumasi, with an introductory letter and a copy of the ethical approval. The purpose, objectives, and any potential benefits and risks were explained to participants in the language of their choice (Twi) a week before data collection. This allowed participants enough time to consider their participation. Respondents who met the inclusion criteria and understood and agreed to be part of the study were asked to give their consent by signing or thump printing a consent form. Respondents were informed that they could decline to take part in the study or withdraw from the study even after they had signed the consent form without any consequences. Only the authors had access to the raw data.
Anonymity was ensured by assigning numbers (001 to 010) to each participant during recruitment. Pseudonyms were used later to replace the numbers when quoting verbatim expressions of the participants. The authors arranged with the hospital counsellor to assist the participants who may need counselling after expressing their experiences of living with advanced breast cancer at no cost to them. No participant was referred to the counsellor because the participants regained control over their emotions after sharing their experiences. The participants were assured of anonymity during publications of aspects of this study.
Ten women aged between 32 and 65 participated in the study. Two of the participants were divorced and the rest were married. Table
Demographic characteristics.
Pseudoname | Age | Education background | Religion | Marital status | Number of children | Occupation | Family history of breast cancer | Number of years diagnosed |
---|---|---|---|---|---|---|---|---|
Afiba | 45 | Tertiary | Christian | Married | 1 | Nurse | No | 3 |
Maame | 53 | Primary | Muslim | Married | 1 | Trader | Yes | 1 |
Nyamekye | 66 | None | Christian | Divorced | 5 | Farmer | Yes | 3 |
Dzifa | 65 | None | Christian | Married | 7 | Cleaner | No | 1 |
Asaaba | 51 | None | Christian | Married | 12 | Farmer | Yes | 11/2 |
Yaa | 58 | Primary | Christian | Married | 4 | Trader | No | 2 |
Ama | 31 | Tertiary | Christian | Married | None | Teacher | No | 3 |
Aku | 58 | Middle | Christian | Divorced | 2 | Trader | No | 2 |
Yaayaa | 46 | Primary | Christian | Married | 4 | Cleaner | Yes | 2 |
Mansa | 57 | Tertiary | Christian | Married | 5 | Trader | No | 1 |
Women in this study described their emotional and psychosocial experiences with ABC. The major themes revealed were emotional reactions, pain, lost hope, support, and coping. The major themes also had subthemes as shown in Table
Themes and subthemes generated.
Themes | Subthemes |
---|---|
Emotional reactions | Sadness, fear, and anxiety |
|
|
Pain | Pain characteristics |
Pain effects | |
Pain management | |
|
|
Lost hope | Marriage and parenting |
Work | |
|
|
Support | Family and spousal support |
Workplace support | |
Support of health professionals | |
Spiritual support | |
|
|
Coping | Acceptance |
The will to live |
Women with ABC experienced emotional reactions such as sadness, fear, and anxiety. They cried for various reasons such as cost of treatment and were afraid of death.
The women feared dying from the disease. News about the death of friends and remembering the death of a family member with the disease therefore caused anxiety:
Family history of breast cancer related death also caused fear of death and anxiety among participants:
All the women in this study experienced severe pain. Some of the women stated that others needed to experience “their pain” to understand what they went through and they wished to die. Subthemes of pain characteristics and effects are described.
Cancer pain was described as “real pain” and was compared to labour pain as follows:
Some of the women could not find appropriate words to describe their excruciating pain:
The intense pain led to suicidal thoughts and most of them wished to die:
Some employed sleeping on the floor and praying with the rosary:
A psychosocial implication of ABC included worry over losses related to marriage, parenting, and work. The women described these as “lost hopes” which could not be achieved.
Parenting was also an important issue for the women who had children. The women were concerned about the future and the up-bringing of their children since they were not actively involved in nurturing their children:
The debilitating effect of ABC called for various forms of support for women in this study. All the women received support from spouses, family, friends, workplace, healthcare professionals, and spiritual support. The support helped them to cope with the disease physically, emotionally, psychologically, and socially.
Some felt their family support was genuine and has helped them cope:
Some of the women had good support from their spouses and this helped them to cope with the disease:
Some of the husbands gave their wives emotional support:
However, a few did not receive adequate spousal support:
A participant also reported a negative health professional attitude regarding inadequate pain management:
Some believed that God can heal them drawing from other miracles in the Bible:
Some of the women drew closer to God because of their experience with breast cancer and their pastors also prayed for them:
The psychological process of grieving ended with the stage of acceptance and some of the women had a strong will to live. These processes helped them to cope with the menace of ABC.
The acceptance of ABC among participants was related to their spiritual beliefs:
The study revealed some findings that are congruent with the existing literature such as sadness, anxiety, and fear [
Pain associated with ABC is commonly reported by previous researchers and, in this study, pain was common to all the women. Some of the women experienced pain despite the use of morphine syrup. The women described their pain as severe and intense, not relieved by analgesics. In similar studies, pain expressions by the women were in conformity with this study [
The synergistic effects of ABC and the side effects of treatment such as chemotherapy resulted in debilitation, fatigue, and low self-image due to breast wound or loss of breast and metastasis [
In the wake of declining ill health, physical strength, and the emotional responses that resulted, women appreciated the support they received from family, spouse, workplace, and healthcare providers. This need is confirmed by reports from other studies [
Also, financial support from employers was used to defray the cost of treatment for personal needs. Other studies also found similar support from employers and colleagues and women appreciated such support [
Health personnel are expected to provide efficient care with empathy. This form of support was satisfactory. However, unsatisfactory care was related to poor pain management. The women received emotional support and teaching on cancer and its treatment from healthcare professionals. In contrast to the present study, Cebeci et al. [
Spiritual support played an important role for the women. They exhibited trust and reliance on God as their ultimate source of healing. All the study participants received regular prayer support from religious ministers and this increased their faith in God and further helped them cope with the challenges of the disease [
Understanding the lived experiences of women with ABC can help nurses provide appropriate care that meet the needs of patients. Nurses should be committed to administer analgesics to control cancer pain and educate patients about their disease and its effects. To promote early detection of breast cancer, nurses and other women organizations should be actively involved in breast education and screening programs. Early detection can lead to cure and possible breast preservation. Also, nurses should collaborate effectively with other professionals to provide effective end of life care for women with ABC.
An important limitation of the study is the absence of men among the group studied since 1% of the population of men is at risk of developing breast cancer. It is likely that men diagnosed with ABC in Ghana have different life experiences from women. Also, further investigations could compare the experiences of women with ABC and that of women with early-stage breast cancer. It is also necessary to investigate the knowledge and attitude of nurses on ABC and palliative care in Ghana.
Pain was acknowledged as a distressing symptom of advanced breast disease. Inadequate pain management affected women’s quality of life and further influenced their will to live. Spirituality was a source of support and it increased the faith and hopes of the women and kept them going despite the sufferings of advanced disease. The participants also received physical, emotional, and financial support from family, spouses, workplace, and health professionals though some conflicts occurred during these interactions. Support was a significant determinant of good coping. On the other hand, women who did not receive the necessary support had difficulties coping with the sufferings of the disease and experienced lost hopes. It is important for women with ABC to receive necessary care and pain management to prevent suicide and also help improve their quality of life. The need for palliative care services is highlighted within the context of this study.
The authors declare that there is no conflict of interests regarding this research and publication.