1. Patients and caregivers’ emotional responses
The first critical issue I experienced was my emotional responses to dealing with a sensitive aspect of the study (Rowling, 1999). Some participants were nervous as they chronicled their challenges in dealing with the care as well as how generally unhappy they were because of the shock of the diagnosis of a terminal illness. I was sometimes saddened by the plight of the patients and their caregivers as they narrated their experiences. When talking about issues of end of life care, a feeling of emotion and distress may be inevitable, and this research was not an exception (Ashton, 2014). The pain and the sentiments of the patients and their caregivers were powerful, such that I had to endeavour not to become emotional or let sadness overcome me (Valentine, 2007). Some family members expressed their emotions about how difficult it was to care and to witness a loved one dying (Morris, King, Turner, & Payne, 2015). The interviews brought up difficult emotions for both the participants (patients and family caregivers) and me. Discussing concerns about death was something that participants are often reticent engage with (Salifu et al., 2019); and this was particularly evident in my fieldwork given the Ghanaian cultural belief of not talking about when a person is sick or dying. Interviewing such a population can mean that the researcher is faced with the death of participants, which can be distressing (Casarett et al., 2003). In the Ghanaian culture, again this may be accentuated given that there are traditions I felt honour-bound to observe; calling to express condolences and attending a funeral. Venturing into palliative care research in a culturally sensitive topic, therefore, has its challenges of the researcher having to manage emotions and navigate through complex interpersonal and interprofessional dilemma (Broom et al., 2014).
Another area for reflection arose from interviewing professionals about their experiences of providing care. In Ghana, the limitations to the care health professionals can deliver out in the community is potentially distressing for them to reflect upon in an interview setting. Their compassion is evident, given how they went beyond the remit of their roles to provide care and resources to ensure the dignity of the patients (Sailian et al, 2021). For example, one health professional narrated how she used her car and money to fuel, buy some items and visit some person living with advanced prostate cancer (and other patients with other palliative care needs) at their homes. Others shared their experiences of having to support some patients at the hospital for the patients to access treatment- such as chemotherapy, radiotherapy, surgery and the challenges that bring to the patient and their families (Salifu et al., 2021).
Additionally, I equally became aware of how vulnerable we as researchers (especially as an early career researcher in the field of palliative care) could be in dealing with sensitive and end of life issues (Payne et al., 2007; Seymour et al., 2005). This current study Corroborates with a recent study that claims that researching sensitive issues can be emotionally and psychologically demanding for researchers (Kumar & Cavallaro, 2018). Kumar and Cavallaro (2018) further highlighted four distinct areas of researchers’ emotional experience in a research context: managing sensitive issues, researcher’s prior personal experience, been engaged in traumatic experience during data collection, and unexpected that arises during fieldwork.
This finding, thus, has practice implication for novice and doctoral students, as well as experienced researchers, do who are who engages in research sensitive topics. Moreover, the frequent debriefing sessions I had with my supervisors in the form of supervision meetings and other correspondence provided helpful support in dealing with most of the difficulties. Speaking to my supervisors was necessary because they are experienced in this field and were able to offer both emotional and academic support. One other way that helped me to get rid of strong feelings was writing about the emotional challenges in field notes and my engagement with others about these issues.
2. Researcher/professional role conflict
Researcher and professional role conflict is one key areas that Institutional Review Boards could raise red flags for palliative care research (Abernethy et al., 2014).This research work made me appreciate the researcher/ professional boundary that I had only read of in textbooks and been cautioned about by my supervisors. During the fieldwork, I observed some practices of care by person living with advanced prostate cancer and their family caregivers, were, for example, potentially dangerous in terms of infection control and impacted on a patient’s quality of life (Nursing and Midwifery Council, 2008). There is always the desire to intervene or provide intervention within the research context when a researcher observes some practices put patient participants at risk. At the home of Boat (See Table 1), I noted that his supra wound where his pubic catheter was inserted into the abdomen was becoming infected. After the interview, I asked Boat and his family caregivers about their method of wound care. I was informed that they use a flannel cloth to clean the wound, and after the wound cleaning, they washed and dry the flannel cloth on a window for reuse. I learned their supply of gauze, other wound dressing materials had run out, and they had not been able to get more due to partly to the cost and partly other reasons such as unavailability of wound dressing pack in nearby pharmacy shops. I felt duty-bound to explain to them the dangers of using an unsterile cloth to dress the wound, and how this could lead to infection of the wound, the peritoneum, and eventually sepsis (Emmons & Lachman, 2010). When I was told they have run out of their supply of gauze, I sought their permission to inform the Hospital about it and to urgently request for a new supply of sterile gauze for Boat’s wound dressing. After this explanation, the family permitted me to inform the hospital about their situation. I further reassured them that, my decision to notify the hospital of this would not, in any way, affect their care they will seek at the hospital. Being a nurse researcher, thus, means having to navigate the complexities of dealing with the dual role of a researcher and a professional and require one to do self-reflection consistently (Hewitt, 2007).
Table 1 Boat’s* scenario
Age
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78
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Key Caregivers
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Brother (Sabi) and Brother’s wife (Safia)
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Main concerns
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He quickly forgets things (according to caregivers), difficulty in walking, a suprapubic catheter[1] in place, pain at the lower abdomen and legs, numbness of the legs, frequent urination.
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Interview type: individual face to face
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Interview 1: At home with Boat and Safia
Interview 2: Home with Boat and Sabi, 8-weeks later
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Palliative treatment
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None
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Work/Source of income
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Unemployed/His support comes from his brother and nephews
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Care needs
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Some urine leaks through the catheter and sometimes through the accidental opening of the cork of the catheter.
The patient is worried that due to his incontinence and his weakness affecting his independence and dignity as a man.
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*All names are fictitious to protect the identity of the participants.
Another scenario was the case of Gyasi (See Table 2) who was using a wheelchair and had sores at the sacral area. The incident happened during the second interview at his residence. Gyasi had become lean and had developed bedsores because of infrequent change of position or turning in bed. He had also lost his appetite. I was again, caught between the professional /researcher dilemma. Since this development had a severe impact on Gyasi’s quality of life, I felt the need to intervene before leaving the family after the interview. I educated the caregivers on the need to change Gyasi’s position in the wheelchair and support it with soft pillows. I told them to turn him about four-hourly during the night to minimise further development of bedsores. I also educated them on the need to clean Gyasi properly after personal care since leaving the skin moist can also lead to skin breakdown.
Table 2: Gyasi’s scenario (all names fictitious to ensure anonymity).
Age
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64
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Key Caregivers
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Children (Otoo, Kwame, Agyei)
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Main concerns
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He is a wheelchair user, lost weight, with pressure sores.
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Interviews: Dyad
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Interview 1: At a private room at the hospital with his first son, Otoo
Interview 2: At home, seven weeks five days later with Gyasi and his second son, Kwame.
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Palliative treatment
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Surgery and on chemotherapy
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Work/Source of income
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Retired/Pension and family income
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Care needs
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A wheelchair user with bed sores. Due to his special needs and significant mobility difficulty, he is always transported to the oncology unit by a private Ambulance service for his monthly appointment. He has had surgery done to remove his testes, and he is currently on chemotherapy. He wears an incontinent pad all the time and always requires the assistance of others for his care and movement. He is thankful to his children for the care they provide him on a rotation basis.
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Other researchers such as (Colbourne & Sque, 2004), have also have reported on such researcher/professional role conflict while others, for example, (Jack, 2008)has outlined some guideline to assist this journey and when a researcher should intervene within the research setting. It is essential that as nurse researchers, we are deeply aware of the potential role conflicts and what to do in order not to obfuscate the aim of the study as a researcher. At the same time, it is the role of the researcher, ensuring patients’ safety as expected from a nurse regardless of the context.
3. Therapeutic relationship
The purpose of qualitative interviews in providing some bonding between the researcher (Cartwright & Limandri, 1997) and participants can not be underestimated, especially in palliative care, where the show of compassion is an essential component (Hewitt, 2007; Murray, 2003). The kind of relationship and quality of data gathered could be influenced by the method (individual or dyad interviews) the researcher adopts in dealing with sensitive issues. Some participants described my visit to their homes as a ‘show of love and concern’; they appreciated my presence in the field (participant’s house). Participants having enough time (unlike in clinical settings) to express of their concerns provides cathartic relief as well as a sense of empowerment for participants (Hutchinson, Wilson, & Wilson, 1994; Moch & Gates, 2000).
Others also indicated that it allowed them to be relaxed in their homes and for me to see some of the things at first hand. For example, during both interviews, Stella, Ofori’s wife, and caregiver were also glad that her husband’s situation had necessitated a visit by someone they perceived to be a health care professional, albeit that I was there as a researcher. Stella observed that my visit as unique since no health personnel had visited them either for an interview or to offer support. She further indicated that she had been relieved by the opportunity to speak to me. In addition, this might have had more relevance to them, given the lack of professional home care provided. Potentially there is a sense of abandonment or coping alone, and my presence could have alleviated this to an extent.
Murray (2003) suggests that nurse investigators are not ‘nurse therapists’ during fieldwork. While this should be the case, based findings from this current study, we argue that in as much as the nurse researcher boundary should be detached, the relationship that develops could inadvertently help patients and caregivers to live a more dignified life. The WHO public health model for palliative care identifies four key areas such as policy, drug availability, education, and implementation Stjersward (2007). This policy requires the integration of palliative care services into the national mainstream healthcare, providing accessible and supportive care to patients, including at home and involving others in the care. Since all of these are lacking in the Ghanaian context where the interview took place, I understood the appreciation expressed by patients and caregivers in having the opportunity to speak to a nurse (but in the capacity as a researcher.) I do agree that this issue of a therapeutic relationship is still contestable by others.
Furthermore, I have learned, while doing this study, the need for us to be very flexible in collecting qualitative data. Some participants were more comfortable with individual interviews where they could tell me about some sensitive and confidential issues that they did not want the other party to know. Most participants who had sensitive and confidential information preferred individual interviews with dyad interviews. This revelation points to the power of individual interviews providing an opportunity to share some ‘sensitive’ information that might not be revealed in other types of interviews such as focus group interviews.
Again, where dyad interviews were used, caregivers were careful using some words such as ‘death’ in order not to upset or demoralise persons living with advanced prostate cancer since discussing death in the presence of a seriously ill person in Ghana is regarded as approving his death (Zarhin, 2018). The use of dyad interviews in this study offered a significant methodological insight about how persons living with advanced prostate cancer and their family caregivers relate. Interviewing patients and their caregivers together provided very insightful data about the impact of prostate cancer on the family, and their shared experience of how they transverse their journey and the meaning and interpretation of such encounters (Taylor & de Vocht, 2011). The researcher ‘hat’ allowed me to gain privileged connections and insights into these patients’ lives that would not have been accessible to me as a practitioner; such stories could help in developing policy for palliative and end of life care (Bingley, et al., 2008).
My fieldwork experience also brought me closer to the family unit as a whole than it would have been in a clinical setting (Benoot & Bilsen, 2016; Leslie & McAllister, 2002). Some participants occasionally called to tell me about their progress and of course some deterioration in their condition. In one instance, when the patient died, the family invited me to the funeral and insisted it was the wish of the patient too. His death happened about six weeks after the initial interview with Mike and his lovely caregivers.
Research on topics related to palliative and end of life care present significant emotional issues for both participants and the researcher. It requires skills to handle the interview in a sensitive manner and to ensure sources of additional support (for both participant and researcher) are to hand wherever possible. As a nurse researcher, additional issues arise in maintaining boundaries and addressing nurse-nurse researcher role conflict. It also requires a unique skill of how to terminate with the participants, especially when such interpersonal relations have been built over a serial interview approach.
Nurses have a legal obligation to ensure a patient’s safety and are likely to be in a state of dilemma while been a researcher and a nurse at the same time. Such a hazing role between nurse and researcher has repercussions nurses who do qualitative research into sensitive topics that elicit a passionate, emotional response. Therefore, nurse researchers should avoid the temptation of assuming that they might not need additional training in planning to conduct interviews involving vulnerable people, especially at the end of life.
Implication for practice
Authors conclude that participants who are interviewed by a well-prepared researcher will not only feel comfortable during the interactions but also be in a position to provide rich data that will facilitate a better understanding of participants’ experiences (Patton, 2002). The personal contact I had with participants and interviewing them twice (repeat interview approach) afforded me the additional opportunity to better understand their experiences, perceptions, and their perspectives of living with prostate cancer.
Professional researchers, especially in the field of palliative and end of life care and novice researchers, are likely to be in a state of dilemma while been researching a resource-poor setting where professional home care is unavailable. This reflection highlights some issues of witnessing care that could affect the quality of life, and nurses have a legal responsibility to ensure the patient’s safety (Duke & Bennett, 2010). Such a hazing role between nurse and researcher has repercussions for nurses who do qualitative research into sensitive topics that elicit a passionate and emotional response. Therefore, nurse researchers should have this in mind while planning to conduct interviews involving vulnerable people, especially at the end of life.