Family members of men diagnosed with prostate cancer (PCa) experience a range of supportive care needs. Literature indicated inconsistent supportive care from nurses to families of men diagnosed with PCa.
Exploring and describing the experiences of family members of men diagnosed with PCa on the supportive care received from nurses.
The study was conducted in the oncology departments of the Intermediate Hospital Oshakati.
Qualitative, exploratory, descriptive, phenomenological and contextual designs were adopted. A sample of seven family members of men diagnosed with PCa was selected using a non-probability purposive sampling technique. Individual face-to-face interviews were conducted. Interview guide and field notes were used to collect data. All interviews were recorded with an audio recorder and transcribed verbatim. Content analysis using Tesch’s eight steps of open coding was adopted to analyse data. Criteria for establishing trustworthiness of the data were used. Fundamental ethical principles were adhered to.
The study revealed lack of family involvement in treatment and decision-making. Two themes emerged: (1) feeling of being devalued in the healthcare system, and (2) non-conducive environment for counselling men.
It became evident that family members of men diagnosed with PCa are rarely considered in clinical practice. Recommendations are made in terms of policy formulation, organisational changes in the hospital protocols and staff training.
The study proposed the introduction of national policy on supportive care of men with PCa and an inclusion of their families during treatment and decision-making.
Supportive care refers to the services beyond treatment that assist an individual with cancer and their family to cope with the disease as of pre-diagnosis, through the course of diagnosis and treatment to cure, palliative care, and bereavement care.
In Namibia, the disease is amid the top five of cancer incidences mostly affecting men psychologically.
In Namibia, nurses serve as advocates for men diagnosed with PCa and their families by representing their health needs to other members of multidisciplinary team (MDT). Similarly, nurses assist men to make informed decisions about treatment by availing them with health information regarding the diagnosis and the outcome of the diagnostic tests. Other members of the MDT in Namibia include: medical doctors, dieticians, physiotherapists, social workers, pathologists, pharmacists, radiographers, urologists, chaplains and psychologists. Adopting MDT approach enables a greater chance of providing supportive care to men in line with clinical guidelines, reduction in timeframe from diagnosis to treatment and care, and increased survival of men with PCa. Similarly, MDT enables continuity of holistic care to ensure that men diagnosed with PCa receive timely support and treatment from diverse and experienced professionals.
Despite the magnitude of PCa in Namibia, the country has no existing guidelines or policies to facilitate supportive care to family members of men with the disease. Therefore, although obtaining informed consent from patients and family to conduct treatment and breaking bad news are not the main tasks of the nursing staff, in Namibia these roles are commonly being carried out by nurses in consultation with medical doctors because of lack of clear specifications in the guiding tool in terms of roles. To the contrary, King et al.
Prostate cancer remains one of the five top male cancers in Namibia; however, the country has no guidelines or model to facilitate supportive care for family members of men living with the disease.
Through clinical encounters with family members of men diagnosed with PCa at oncology departments of Intermediate Hospital Oshakati, as a registered nurse, the researcher observed with concern that family members of men diagnosed with PCa are hardly being provided with supportive care to deal with the long-term effects of the disease of their loved ones. Frequently, family members report lack of information, and that their social and psychological supportive care needs are neither recognised nor taken care of. Equally, family members divulge thoughts about the likelihoods of survival for their loved ones which often leave them psychologically affected, hence the necessity for supportive care. Literature reveals that 79% of family members of men diagnosed with PCa experienced unmet supportive care needs such as sexual and psychological.
The purpose of this study was to explore and describe the experiences of family members of men diagnosed with PCa on the supportive care received from nurses to identify the dynamics to supportive care in health facilities.
This study comprised of a paradigm with a set of philosophical assumptions that influenced the logic of the study, namely; meta-theoretical assumptions (ontological, epistemological and axiological), as well as methodological and rhetorical assumptions.
A qualitative research design was adopted as it allows the researcher to explore the complexity and abundance, inherent in the phenomena namely the experiences of family members of men diagnosed with PCa on supportive care received from nurses in health facilities. Phenomenological, exploratory, descriptive and contextual designs were used to explore and describe family members’ perceptions.
The population of this study is made up of family members of men diagnosed with PCa. A non-probability purposive sampling technique was adopted.
The following inclusion criteria were applied during sampling:
A participant should have been a family member of a man between 60 and 90 years of age diagnosed with PCa stage 1 to stage 2 and who is still receiving treatment at the Intermediate Hospital Oshakati.
Participation had to be on voluntary basis.
Data were collected using in-depth individual face-to-face interviews, interview guide, field notes, and a tape recorder.
Interview transcripts were analysed using the Tesch’s eight steps of coding process.
The study adopted the criteria for establishing the trustworthiness of qualitative data, namely, credibility, dependability, confirmability, transferability and authenticity.
Approval to conduct the study was acquired from the Center for Postgraduate Studies of the University of Namibia. An ethical clearance certificate (Ref no: SoN/462/2019) was issued by the Research Ethics Committee (UREC) of the University of Namibia. Additional approval to conduct the study (Ref no. 17/3/3 SS) was issued by the Ministry of Health Social Services. Written informed consent was obtained from each of the participants after the purpose of the study was clarified to them. The following research fundamental ethical principles of the World Medical Association (WMA) guided the study as stipulated in the Declaration of Helsinki,
Seven family members of men between the age of 60 years and 90 years diagnosed with PCa stage 1 to stage 2 and who are still receiving treatment at the Intermediate Hospital Oshakati were interviewed, namely, four spouses between ages 46 years to 57 years, two sons of 33 years and 44 years of age, and a daughter of 40 years of age. Through data analysis, the following two themes were identified: (1) a feeling of being devalued in the healthcare system and (2) non-conducive environment for counselling men.
Themes and subthemes of the experiences of family on the supportive care received from nurses in health facilities.
| Themes | Subthemes |
|---|---|
| Theme 1: Feeling of being devalued in the healthcare system | Lack of family involvement in treatment and decision-making Lack of psychological supportive care from nurses to families Lack of spiritual support for family |
| Theme 2: Non-conducive environment for counselling men | Lack of privacy |
This theme emerged after most family members (n-5) expressed lack of family involvement in treatment and decision-making, as well as lack of psychological supportive care from nurses. In this study, devalue implies giving a lower worth to a person by making him or her less valuable that he or she is’.
Family members of men diagnosed with PCa expressed a lack of family involvement in treatment and decision-making by nurses in oncology departments. The following participants’ expressions are evident to this:
‘No, they did not involve us … [
‘You only see them treating your patient without even talking to you. Is that how it should be? Otherwise, why should we keep on coming here? Just to sit or what … [
‘Prostate cancer was not explained to us as a family. I expected nurses to add more health information for me to know how to take care of him. This was not done.’ (P4, female, 67 years old)
‘The presence as family members seems not to be valued here. Most of the time, nurses are only talking to patients while ignoring family members. Is it not us who take care of cancer patients at home? They must change … [
The researcher found it evident from the findings that nurses do not actively involve family members of men diagnosed with PCa when delivering health information and therefore resulted in most family members to feel undervalued and considered as less significant in the healthcare system. Similarly, the negative experiences expressed by family members reflect the healthcare delivery systems that do not consider the informational needs of family members of men diagnosed with cancer.
When asked about family involvement in treatment and decision-making by nurses at the oncology department, this is what some participants had to say:
‘No, you only go there and visit your patient and came out of the ward without being informed of anything about your patient’s condition.’ (P4, female, 67 years old)
‘They did not give me any health information on how we should take care of him at home [
‘I need to be informed as to the time medicines should be taken, and what time he should eat. That was not done.’ (P4, female, 67 years old)
Some participants recommended the following regarding family involvement:
‘Nurses should train us on how to take care of these pipes at home as family members. They should also tell us to clean them.’ (P5, male, 44 years old)
‘I am urging nurses to give us health information as families. They should inform us how patients with prostate cancer should be handled.’ (P5, male, 44 years old)
Family members of men diagnosed with PCa expressed a lack of psychological support from nurses. This is evidenced by the following quotes from participants:
‘As his wife, I never got counselling. At least I should be informed of things that I should do and those that I should not do. I need to be well informed.’ (P6, male, 42 years old)
‘Most of the time nurses only give health information after being asked. They are failing to give us health information as families.’ (P5, male, 44 years old)
When asked to describe the psychological support they receive from nurses in oncology departments, this is what some family members had to say:
‘I did not receive any counselling regarding my father’s condition.’ (P1, female, 31 years old)
‘No, I was never counselled. Counselling was never given to me. Never!’ (P3, female, 33 years old)
‘No, I have not yet been counselled. Maybe they are still to do it. Yes, one really needs to be counselled.’ (P6, male, 42 years old)
Family members in this study expressed lack of spiritual support after the diagnosis of PCa to their loved ones. This is evidenced by the following quotes:
‘I heard there is a pastor in the hospital for patients only. As a family, we are not spiritually supported in the hospital. Nothing!’ (P6, male, 42 years old)
Other family members had this to say:
‘As a family, we never come across any spiritual support. Maybe it is being given to the patients only.’ (P4, female, 67 years old)
‘Pastors only pray for the patients but not for their families. Never!’ (P6, male, 42 years old)
Most family members raised a concern that congested and dilapidated structures make it difficult for counselling men. Family members also revealed their shocking experiences of seeing men being counselled in overcrowded and noisy rooms. The following subtheme was identified during the data analysis:
Family members who participated in this study revealed numerous experiences of lack of privacy in oncology departments. This was evidenced by the following accounts:
‘I think the consulting room is not appropriate for counselling. I do not see any other better room specifically for counselling here.’ (P5, male, 44 years old)
‘Rooms should at least reflect the hospital setting. There is no privacy here.’ (P5, male, 44 years old)
This is what some family members had to say when asked to describe their experiences of oncology departments in terms of counselling men:
‘The rooms are not conducive for counselling. Most of the windows are broken and some are not even closing.’ (P7, female, 40 years old)
‘Cancer department should be on its own. Just listen to these noises … [
In support of the above quotes, some family members had the following to say:
‘The rooms are so overcrowded with patients. How can a nurse discuss a private issue with a patient in such a situation?’ (P8, female, 47 years old)
‘Patients’ beds are too close to each other. How do you engage a patient in a private conversation?’ (P1, female, 31 years old)
‘Keep rooms for a specific patient and relatives only, but not a lot of people. Where is privacy?’ (P1, female, 31 years old)
In this study, family members were asked to describe their experiences on the supportive care received from nurses in health facilities after their family members were diagnosed with PCa. The findings revealed lack of family involvement in treatment and decision-making by nurses in oncology departments. Røen et al.
Participants of this study expressed experiences of being devalued in the healthcare system. The study by Wang et al.
When asked to describe the psychological support they receive from nurses in oncology departments, most participants expressed lack of psychological supportive care from nurses to families. Most participants expressed that they rarely get psychological support tailored to family members’ psychological needs. The above experiences are being supported by literature that stressed that negative family experiences can reflect healthcare delivery systems that do not consider family needs.
One of the experiences expressed by participants in this study was lack of spiritual support for family members of men diagnosed with PCa. In contrast with the previous findings, a study conducted in the United States revealed that several cancer patients and their families, even when not religious, feel it is appropriate for physicians and other members of the health team to enquire about their spirituality.
When asked to describe their experiences in terms of counselling men diagnosed with PCa, most participants in this study revealed various experiences of lack of privacy in oncology departments. These experiences agree with the findings of a study by Chan
This study was restricted to family members of men diagnosed with PCa. The use of purposive sampling signifies that the findings are contextual and therefore cannot be representative of all family members of men diagnosed with PCa in Namibia. The study was conducted in oncology departments of a single public hospital only. However, the findings of this study will be beneficial for references and future research.
This study explored and described the experiences of family members of men diagnosed with PCa on the supportive care received from nurses at oncology departments. The findings reveal that family members felt devalued by the healthcare system owing to a lack of family involvement in treatment and decision-making. The study established that lack of privacy in oncology departments could deter patients from engaging in private conversations with nurses and family members alike.
Recommendations are made in terms of policies formulation, organisational changes in the hospital protocols and staff training. There is a need for management to develop an educational and psychological interventions policy to assist men with PCa and their families in coping with the diagnosis and treatment. To ensure effective implementation of the policy, all nurses and other members of the MDT should be oriented to the content of the policy through in-service trainings and the induction of the newly recruited staff. Similarly, the policy should prioritise PCa cancer advocacy and consider PCa cancer as among high priority in the hospital. There is a need for the Patient Charter of Namibia to be revised to specify the roles of nurses on supporting cancer patients in terms of patients and family involvement in decision-making and treatment.
With regards to organisational changes in the hospital protocols, the hospital should consider the establishment of an accredited and well-resourced oncology unit, characterised by specialisation and multidisciplinary collaboration for the effective facilitation of supportive care to men diagnosed with PCa and their families. Interested local organisations could partner with the hospital in this regard. The accreditation should be solely centred on the structure of the facility, the quality of health services the facility offers and the capability of workforce. On staff training, the hospital management should consider liaising with local accredited health training institutions to consider the introduction of a postgraduate oncology nursing course as a specialty to prepare nurses to provide quality supportive care to men with PCa and their families across the cancer trajectory.
The authors would like to acknowledge the following individuals for the contributions to this work: Mrs. Dortea Shatumbu-Salomo for her words of encouragement and support throughout this work, and Dr Ndapunikwa Uukule for proof reading the manuscript.
This article is partially based on the author Salomo Salomo, thesis entitled ‘A model for nurses to facilitate supportive care to men diagnosed with prostate cancer and their families in the intermediate hospital Oshakati: A hospital based approach’ towards the degree of Doctor of Philosophy in Nursing Science in the University of Namibia, Namibia on October 2022, with supervisor(s) Prof. Hans J. Amukugo and Dr Anna P.K. Shilunga. It is available here:
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
S.S. is the original author. He collected the data, conducted data analysis and wrote the whole draft of the manuscript. H.J.A. made immense contribution on methodologies and interpretation of the results. A.P.K.S. cleaned and refined the final draft.
The research was funded by the University of Namibia.
The data set is obtainable from the main author, S.S., upon reasonable request.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors, and the publisher.