Dealing with Sensitive Research and the Professional/Researcher Dilemma; A Reective Account on Men Living with Advanced Prostate Cancer

Background: There is developing literature that addresses the ethics and sensitivity of undertaking research with patients (and their family members) receiving palliative or end of life care, but there is little published guidance for a novice researcher and sparse evidence in this area that take account of culturally sensitive and resource-poor settings. Sensitive research can be emotionally challenging for researchers too. Aim/ Method: This is a reective account that draws upon research with men who have advanced prostate cancer and their family caregivers in a health resource-limited context Findings: From a research standpoint, two sets of operational issues on challenging emotions and ethics were encountered. The rst set of challenges involved the diculty of researching in a poorly resourced country where many of the things that are taken for granted in the Western world is not the same for researchers. Patients and their caregivers have little access to palliative care, and family members provide most care at home. The second set of challenges entails having to navigate dual roles seamlessly as a nurse as well as a researcher-in-training. Dealing with the issue of double identity and interviewing while dealing with concerns about the care that the researcher observed could be dangerous to the participant's health. Discussion: Although 'sensitive research' may provoke participants' emotional responses, and may put the researcher in a researcher/professional role conict, it does have the potential for offering a therapeutic relationship. These included navigating issues of conducting interviews while also being asked for advice or identifying concerns about the care that were observed as potentially dangerous to the participant's health. Reaching out to participants about a research topic that carries cultural perceptions as a shameful and stigmatising disease is also challenging. Additionally, many aspects of eldwork present additional considerations in resource-poor contexts. For example, travelling to and arranging eldwork presents practical challenges, with poor transport and means of contacting participants. Conclusion: This article presents insights into palliative care research in a cultural context where there are many challenges beyond those discussed and encountered in resource-rich contexts. Such a hazing role between nurse and researcher has repercussions for nurses who do qualitative research into sensitive topics that elicit a passionate, emotional response.

This study draws upon research with men who have advanced prostate cancer and their caregivers in Ghana.
The use of semi-structured interviews allowed the researcher to explore their experiences of managing care at home and the challenges (and distress) that this presents. This article, therefore, addresses a sensitive and ethically challenging topic. The article will also discuss the doctoral student's experiences of researching while coming from a background of being a senior nurse in Ghana and the challenges this presents (of maintaining boundaries as a nurse and a researcher).
Access to practical knowledge on palliative care could improve the lives of about 100 million people globally (Stjernswärd, Foley, & Ferris, 2007) Research involving sensitive topics such as the end of life and palliative care is usually fraught with emotional issues and touches on painful experience (Seymour et al., 2005). In qualitative research, the researcher aims to get rich data by exploring further and more in-depth; however, they also have the duty of minimising the likelihood of causing emotional distress to vulnerable participants, be it the patient or the caregiver. Therefore, regardless of the level of the researcher in professional practice, there is the need to adequately plan the interview process to minimise, as far as practical, the distress that participants are likely to experience as they narrate and transverse their disease journey (Ashton, 2014; Dickson-Swift, James, Kippen, & Liamputtong, 2007; Mehta, Chan, & Cohen, 2014). Again, the researchers must also be mindful that they are in the eld as such (researcher) and not professionals (nurse). The dilemmas thrown up by engaging in research in a sensitive, challenging areas and the potential for blurred boundaries between being a nurse and a nurse-researcher forms the basis of this re ective piece of work.
Research Ethics Committees and professional regulatory bodies do have a generalised guideline that direct and forewarn researchers, however; experience at the eld while undertaking interviews present a unique situation (Casarett, Knebel, & Helmers, 2003). I believe that such re ections in the research report give additional avour and context to the ndings of the research. It can be a daunting arena for a novice researcher (or even an experienced researcher new to the eld of palliative and end of life care and lack of guidance might deter some researchers (Benoot & Bilsen, 2016). There have also been debates that we should not be interviewing such a vulnerable population (Abernethy et al., 2014;de Raeve, 1994). Hence the aim to boost nurse researchers con dent in venturing into studying into sensitive topic areas to broaden the evidence base in such specialty.

Methods
Re ective narrative of the experiences of interviewing men living with advanced prostate caner and the family caregivers in a resource-poor context (Asselin, 2011).

Key Findings
This re ective narrative report two main operational issues on challenging emotions and ethics while interviewing the participants. The rst set of challenges involved the di culty of researching in a poorly resourced country where many of the things that are taken for granted in the Western world is not the same for researchers. Patients and their caregivers have little access to palliative care, and family members provide most care at home. Travelling to do eldwork has several practical challenges of contacting participants, talking about a complex and stigmatising disease, customs to follow -for example-following the death of a participant, having to attend funeral service to commiserate with the bereaved family.
The second set of challenges entails having to navigate dual roles seamlessly as a nurse as well as a researcher-in-training. Dealing with the issue of double identity and interviewing while dealing with concerns about the care that the researcher observed could be dangerous to the participant's health. These included navigating issues of conducting interviews while also being asked for advice or identifying concerns about the care that were observed as potentially dangerous to the participant's health. This researcher/professional role con ict could also raise emotional response for an early career researcher, and even some experienced researchers (Cite).
Reaching out to participants about a research topic that carries cultural perceptions as a shameful and stigmatising disease is also challenging. Additionally, many aspects of eldwork present additional considerations in resource-poor contexts. For example, travelling to and arranging eldwork presents practical challenges, with poor transport and means of contacting participants. This article presents insights into palliative care research in a cultural context where there are many challenges beyond those discussed and encountered in resource-rich contexts.
Researching Sensitive Issues; undertaking the study The purpose of the study was to explore the experiences of patients with advanced prostate cancer and their caregivers and how they navigate their way through the care at home where there are very little or no support from health care professionals (Salifu, Almack & Caswell, 2021). Persons living with advanced prostate cancer being cared for at home (for the day-to-day care excluding technical procedures such as chemotherapy and radiotherapy) were recruited through a tertiary hospital in a resource-poor country, and they, in turn, gave permission for their primary family caregiver to be invited to participate in the study. The content of the research was explained to them at the time of recruitment and again reinforced before the interview to ensure that they fully understood and gave consent for the study. One of the key reasons, aside from the bureaucratic research governance procedure that sti es the process, is the possible distress that the research causes to participants who might already be emotionally fragile. Dealing with frail patients presents additional challenges (Bramley, 2016) such as preventing and managing infection, handling the side effects of treatments, and the presence of other comorbidities.
Each participant was given the option of deciding where to be interviewed to allow him or her to be comfortable and in order not to cause undue distress in line with my ethical responsibility. While several were interviewed at a private room in the tertiary hospital as the time when they visited for an appointment, the majority of them had their interviews at home. Having practiced at a registered nurse and a counsellor for Tuberculosis patients, I have the experience of dealing with distressing situations; however, I was guided by my role at the eld as a researcher but not as a nurse. I found Murray (2003)'s warning to nursing researchers not become 'nurse therapists' at the eld essential while at the same time not acting as professional with no sense of duty. Such a balance was di cult to handle while at the same time, remaining composed in order not to worsen participants' distress. Furthermore, the researcher was tactical during data collection in order not to unduly in uence the responses that participants provided Ashton (2014).
Participants may be reticent to speak about sensitive issues such as impotence, advanced cancer, and dying as well as potentially stigmatising information that breaches on their dignity (Sailian et al, 2021). This feeling of being stigmatised is because, in Ghana, prostate cancer carries with its particular stigma; for example, men with prostate cancer been seen as having lived a licentious life (Salifu et al., 2019). To address these issues, participants participated in a follow-up interview that aimed at maximising the opportunity to capture further information. This repeat interview technique was preceded by a continuous reassurance of the strictest con dentiality, and this set the scene for the interview to proceed seamlessly and less nervous manner. Except for two individuals (one patient and one caregiver) who preferred not to be audio recorded, all the other participants allowed the audio recording, and this allowed me to focused on the conversation without having to make notes simultaneously. Those two who refused to be recorded did not state any speci c reason, but I inferred from their conversation that they did so because of the stigma they perceived that came from prostate cancer being associated in Ghana with a licentious lifestyle. Researchers must, therefore, be mindful of the fact that some participants with sensitive issues might not be comfortable been recorded. What this means is that researchers should have a backup means such as pen and paper to take notes to note vital information, and this might take into account when the planning of the interview for such a population.

Preparation for and anticipation of issues that might arise
In qualitative studies, the inquirer plays a signi cant role in data collection and analysis or data generation (Creswell, 2012;Shenton, 2004) because we are part of the social world and could be in uenced or be in uenced by the study environment. Therefore, a greater sense of re exivity on the part of myself as an investigator could be helpful. As recorded earlier in this thesis, I have been mindful of his professional background as a nurse as well as a teacher at a university. Re exivity strengthens the quality and ensures the transparency of qualitative research (Marshall, Fraser, & Baker, 2010) Marshall and colleagues (2010) describe re exivity as critical self-re ection throughout the study as it develops.
There are tendencies for academics to approach data analysis deductively (Mayan, 2009). However, using an inductive approach of analysis emerging themes in the study were developed from the data rather than from During the interview, I kept a diary of my experiences and thoughts, which was useful to be re exive. The writing of the diary and eld notes also served as means to cope with some of the emotionally challenging aspects of dealing with sensitive and emotional issues of participants (Dickson-Swift et al., 2007;Rowling, 1999). The re exive accounts and some debrie ng with supervisors (second and third authors) relating to the period before, during, and after the data collection and analysis captures personal thoughts and experiences that might have in uenced the research directly or indirectly.
I encountered three main ethical issues and learned many interesting things during the data collection processes: emotional responses, researcher/professional role con ict and the relevance of therapeutic self that has implication for nursing practice and education.

Patients and caregivers' emotional responses
The rst 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 di cult it was to care and to witness a loved one 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 re ection 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 re ect 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 .
Additionally, I equally became aware of how vulnerable we as researchers (especially as an early career researcher in the eld 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 eldwork.
This nding, 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 debrie ng sessions I had with my supervisors in the form of supervision meetings and other correspondence provided helpful support in dealing with most of the di culties. Speaking to my supervisors was necessary because they are experienced in this eld 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 eld notes and my engagement with others about these issues.

Researcher/professional role con ict
Researcher and professional role con ict is one key areas that Institutional Review Boards could raise red ags 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 eldwork, 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 annel cloth to clean the wound, and after the wound cleaning, they washed and dry the annel 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-re ection consistently (Hewitt, 2007). The patient is worried that due to his incontinence and his weakness affecting his independence and dignity as a man.
*All names are ctitious 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. Care needs A wheelchair user with bed sores. Due to his special needs and signi cant mobility di culty, 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.
Other researchers such as (Colbourne & Sque, 2004), have also have reported on such researcher/professional role con ict 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 con icts 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.

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 in uenced 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 eld (participant's house). Participants having enough time Others also indicated that it allowed them to be relaxed in their homes and for me to see some of the things at rst 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 eldwork. While this should be the case, based ndings 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 digni ed life. The WHO public health model for palliative care identi es 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 exible in collecting qualitative data. Some participants were more comfortable with individual interviews where they could tell me about some sensitive and con dential issues that they did not want the other party to know. Most participants who had sensitive and con dential 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 signi cant 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 eldwork 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 signi cant 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 con ict. 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 eld 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 re ection 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.

Conclusion
This article presents insights into palliative care research in a cultural context where there are many challenges beyond those discussed and encountered in resource-rich contexts. The narrative re ection also provides cognizance of what early career researchers could expect dealing with sensitive research in palliative and related disciplines. The hazing role between a clinician (nurse) and researcher has repercussions for nurses who do qualitative research into sensitive topics that elicit an emotional response. Awareness of this role con ict could lead to adequate preparation of researchers before conducting sensitive research. This re ection also calls for greater debate on the operational issues on challenging emotions and ethics when researching on a sensitive topic.
Dealing with the dilemma of double identity and interviewing while dealing with concerns about the care that the researcher observed could be dangerous to the participant's health could be traumatising to the researcher as well. Although 'sensitive research' may provoke participants' emotional responses, and may put the researcher in a researcher/professional role con ict, it does have the potential for offering a therapeutic relationship.