‘I got to understand what it means to be a cancer patient’: Qualitative evidence from health professional cancer patients and survivors

Introduction

Being a cancer patient and/or survivor is a unique experience for a healthcare professional (HCP). Cancer survivorship has been defined as a facet of an individual’s identity that consists of “the health and life of a person with cancer until the end of life.” ¹ Cancer remains a major and an increasing public health problem globally, being one of the leading causes of death and morbidity in both high-income countries (HICs) and low- and middle-income countries (LMICs). Cancer is the second leading cause of deaths in the United States ² and the third in Australia. ³ It is one of the major causes of death and morbidity in Africa, where cancer patients have the poorest outcomes and the shortest survival rates when compared to other parts of the world. ⁴ According to the GLOBOCAN 2018 report of the International Agency for Research on Cancer, Africa registered 811,200 new cancer cases (4.5%) and 534,000 cancer deaths (7.3%) of the total world cancer burden. ⁵

It has been reported that a diagnosis of cancer brings a myriad of disruptions in the life of a person. For instance, worry about the uncertain future and fear of death creates persistent physical and psychological problems in cancer patients. ⁶ Such problems manifest as disrupted social roles, threatened and, or actual loss of independence, self-esteem, depression, anxiety, fear, violence, difficulty in communication, and lack of willingness to participate in self-care programs^7,8

When HCPs receive a cancer diagnosis, their cancer experience is even more multidimensional; both subjective and tangible, and different compared to the experience of non-HCP patients, ⁹ with this experience varying between different cultures. ⁸ According to Kenny et al., ¹⁰ HCP patients’ view of cancer patient-hood journey is influenced by their background knowledge of the illness. Prior professional background could lead to professional role ambiguity denoted by difficulty in ‘handing-over’ the professional identity and accepting the patient identity.^9,10 The limited research done into gaining a deeper understanding of HCPs illness experiences shows that having a professional background can result in heightened tensions because of one’s specific care needs but can also facilitate greater control over one’s care.^11,12 Evidence shows cancer survivors report finding meaning from their illness experiences and gain insights that affect the way they view life. ¹³ This finding is corroborated by Fox et al. ¹¹ and Wolf et al., ¹⁴ who found that HCPs lived experience of illness can yield rare insights about patient-hood, and this new lived ‘twist’ of life and newfound empathy can help improve one’s future clinical practice and patient care.

Globally, and in Uganda, there’s a rising trend in cancer incidence and prevalence. It is thus inevitable that many HCPs will receive a cancer diagnosis. ³ However, there is scant evidence about the experiences of HCPs who become ill with cancer. Anecdotal evidence shows the experiences and support needs of HCPs who are recipients of cancer care differ from those of lay patients.^9,10 What research has been done has concentrated on the experiences of cancer patients from a narrow scope of medical professions; mainly physicians and surgeons.^3,11 There remains scant understanding of the experiences of other professional cadres such as nurses and the allied HCPs. Yet, differences in professional backgrounds could potentially reveal variations in cancer patient-hood experience, for example, due to factors such as medical hierarchy, and/or level of interaction and relationship with patients. Studying physicians may also over represent individuals with a particular socioeconomic status (SES). Furthermore, the existing research is disproportionately concentrated in high-resourced economies. Again, differences in SES can cause unique limitations in generalizing findings to low-resource contexts.

No inquiry has been conducted into the cancer experience of HCPs in neither Uganda nor Africa in general. Hence, the study is the first to delve into this understudied area. The study aims to share novel insights of HCP patient-hood in a low-resourced context and illuminate common pitfalls in the health care system, and suggestions for improvement of cancer care as they apply to HCPs living with cancer in Uganda.

Methods

Results

The findings generated four broad themes, that is, (1) experience of pre-diagnosis and receiving bad news, (2) impact on self and role identity, (3) healthcare system and treatment experiences, and (4) the gaps and what should be done.

Participants’ sociodemographic profile (Field data: March-September 2020), See Table 1

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Table 1.

Participants’ sociodemographic profile.

Variable	Number
Gender
M	3
F	5
Profession
Medical doctor	2
Registered nurse/midwife	5
Clinical officer (Physician’s assistant)	1
Age group
20–29	1
30–39	0
40–49	1
50–59	3
60–69	2
⩾70	1
Type of cancer
Lymphoma	2
Cancer of cervix	1
Leukemia	1
Skin cancer	1
Endometrial cancer	1
Colorectal cancer	1
Urethral neoplasm	1
Year diagnosed with cancer
2010–2015	1
2015–2020	7
Cancer treatment received
Chemotherapy only	3
Chemotherapy and palliative care	2
Surgery and radiotherapy	1
Surgery and palliative care	1
Palliative care only	1
On/receiving active treatment
Yes	2
No	6
Had health insurance at diagnosis and during cancer treatment
Yes	4
No	4
Worked in cancer or palliative care before
Yes	5
No	3

Discussion

The main aim of this inquiry was to examine the lived experiences of HCP cancer patients and survivors in Uganda. Four major themes emerged, (1) the experience of pre-diagnosis and receiving bad news, (2) impact on self and role identity, (3) healthcare system and treatment experiences, and (4) the gaps and what should be done.

The themes highlighted in our interviews with HCPs are important to contextualize based on the differing socioeconomic and demographic characteristics of the participants. For example, financial difficulties were more common and higher in those that lacked insurance to finance their medical expenses. Participants who had a history of training and working in cancer and palliative care settings reported better social and moral support and easier coping, as opposed to their colleagues who had not. It appears likely the training and experiences of prior working with cancer patients prepare an individual to accept the reality of cancer. The majority were immersed in shock and questioning self and God following the news of cancer diagnosis. Older participants, physicians/medical doctors, and those with a history of working with cancer patients experienced less emotional and psychological suffering than their nursing and allied health colleagues after a cancer diagnosis. These findings corroborate those of Kenny et al., ¹⁰ who reported that the experience of HCP cancer patients is shaped by their background knowledge of the disease.

The fear of death, loss of professional identity, stress, worry about their lives, families and the unaffordability of cancer treatment, feelings of hopelessness and worthlessness, that is, life ceasing to have meaning were common. Similar psychological and emotional sequelae were reported among HCP cancer patients in high-resourced countries^3,9 and in studies done with non-professional cancer patients in HICs and LMICs.^19–22 Furthermore, the participants discussed how they constantly questioned self and God as to how and why they received a cancer diagnosis. The findings underline the vulnerabilities HCPs navigate when they become sick with life-limiting illnesses such as cancer, an issue commonly reported by other non-HCP cancer patients.^23,24

Participants discussed their pain and symptoms experience before their cancer diagnosis, and how the news of cancer diagnosis came. Many narrated how, because of their background knowledge and the symptoms they suffered, they had already suspected the diagnosis would be cancer. Pain and other signs and symptoms, for example, swollen lymph nodes prompted a suspicion of cancer among all the participants who had a prior history of working with cancer and palliative care patients. This observation is reported elsewhere in studies and lived experiences (stories) of HCPs who became cancer patients.^9–12 However, majority had not anticipated their symptoms were related to cancer. In fact, some had to be advised by their healthcare colleagues to seek specialist attention, while others were prompted by their symptoms to seek further care. Lagad et al. ³ similarly found HCPs who became ill with cancer received professional advice from colleagues.

The HCPs then discussed how cancer impacted them, as individuals and as professionals; mainly humbling them and increasing their empathy and compassion for their patients after they went through the cancer patient-hood experience, when they themselves experienced distressing symptoms and pain. Some further narrated how the pre-diagnosis and cancer symptoms experience made them become more aware and suspicious of cancer than ever before, including the need to not to delay onward referral of patients who they receive with cancer-related symptoms. They also came to learn and accept that, just like any other person, HCPs can get sick and become patients and this acceptance humbled them. Findings of this study corroborate previous research which reports HCP survivors of cancer finding new insights that shaped their life, understanding, and future career.^14,25 Other authors agree that HCPs develop true empathy and become better professionals when they experience a life-threatening illness, or by being patients.^{13,14,26–29}

Participants identified the post-diagnosis trajectory with cancer, including issues like living with and navigating pain and distressing symptoms caused by the cancer itself, and toxicities of its invasive treatments mainly chemotherapy, surgery, and radiotherapy. Common symptoms included pain, fatigue, nausea and anorexia, nail and skin color changes, alopecia, easy bruising, amnesia, and erectile dysfunctions. All the participants experienced pain, including excruciating pain (for some). This is unsurprising as these symptoms commonly occur in nearly all cancer patients.^20,30 Of the seven HCPs who received active treatment for their cancer, only one did not experience pain as a toxicity of treatment (this being the individual who was treated in the UK). It is not surprising as the health system in the UK, including for cancer care, is well developed with highly specialized cancer care specialists and state-of-the-art equipment compared to LMICs where there is limited human expertise and access to advanced systems and equipment to manage cancer because they were able to afford the costs.

The HCPs discussed another unique experience in their cancer patient-hood trajectory, that of facing the healthcare system and treatment in Uganda as patients. They described inefficiencies, flaws, barriers, and challenges within the healthcare system, how it is difficult to navigate, with inadequate, unmotivated, overworked, and fatigued cancer care personnel, out of stock medicines, and being given inadequate, if any, health information. They explained how the system was slow and very frustrating for them and other cancer patients, particularly the poor. Findings showed healthcare inefficiencies and challenges reported were more prevalent in the public health system. Delays and unclear patient pathways, uncaring staff, and habitual absenteeism, or absconding duty; reporting late to work and leaving work early were common observations reported by HCPs in this study. Unsurprisingly, the participant who was treated in the UK reported fewer health system-related challenges compared to colleagues who received their cancer treatment in Uganda. However, delays to receive pain relief, caused by clinicians’ reluctance to prescribe opioids (in particular morphine) for severe pain was a universal finding.

Delayed and missed treatments due to the unaffordability of accessing care (including transport, accommodation, medicines, and food), inadequate infrastructure for cancer care, inefficiencies in the healthcare system (e.g. out of stock cancer medicines, delays and long waiting times, lack of clear patient pathways) have all been reported in other recent studies in Uganda.^19,31,32 It was surprising how even HCPs with medical insurance also mentioned financial problems resulting from high out-of-pocket expenditure on investigations and treatment for cancer. They sympathized with those who lacked insurance and the vulnerable, especially the poor cancer patients.

The huge out-of-pocket expenditure on healthcare is not a surprising finding since Uganda has no public health insurance scheme, hence healthcare expenses are largely incurred by individuals. This finding corroborates findings of the Global Burden of Disease Health Financing Collaborator Network ³³ which predicted out-of-pocket spending on health care will remain high up to around the year 2040 in low and poor resourced countries. Furthermore, participants who lacked insurance reported longer delays in accessing care, undergoing investigations, and starting treatment as they needed more time to borrow money from lending institutions, colleagues, or to raise funds by selling their assets including land and houses to finance their care.

Reports of corruption, where healthcare workers seek bribes from patients, and oncologists prescribing expensive formulations when equally effective and free medicines were available, were commonly reported as is the case in elsewhere in sub-Saharan Africa. ³⁴ Senior doctors not being easily available and accessible, or leaving juniors in charge when they are not competent to manage patients was another important finding in this study.

In some cases, patients were left to administer treatment to themselves. A participant painfully recounted how at a regional referral hospital, she was told and was always left to administer phototherapy to herself, resulting in severe toxicities of the treatment due to lack of monitoring and supervision from the attending doctors. These findings differ from those of a study by Lagad et al., ³ who found, in Australia, HCPs cancer patients found it easy to navigate the healthcare system including receiving immediate free or subsidized, high-quality care delivered by experts. Similar disparities in accessing cancer care including palliative care, surgery, radiotherapy, and chemotherapy are reported in other large, global studies.^35–37

However, increased awareness of healthcare inefficiencies among HCP patients has been reported in other studies. Lagad et al. ³ found having a professional background led to an increased awareness of inefficiencies in the healthcare system, as do Tuffrey-Wijne and Williams ⁹ who reported HCPs who are patients experience the healthcare system in unique ways: (1) as an observer- HCP-assessing how other HCPs do their work, and (2) as a researcher-processing and analyzing the healthcare system structures and procedures affecting them as patients, (3) a patient, and (4) a critical analyst-studying themselves being a patient.

Finally, the participants discussed scenarios where, despite knowing what they needed; their preferences were not respected, for example, being denied analgesics (especially morphine) for their pain (sometimes severe), a finding supported by Tuffrey-Wijne and Williams ⁹ who found HCPs had unique needs when they became patients.

Conclusion

Cancer patient-hood introduces vulnerability and remarkable disruptions and suffering in nearly all domains of quality-of-life of a HCP, that is, in professional identity and work, social, emotional, physical, and economic facets of life. Participants identified how they experienced a healthcare system which was costly and staffed by unmotivated staff with limited access to resources, which resulted in many unmet needs and an overall poor experience. Participants identified how, in their view, the healthcare system in Uganda needed to be better resourced, protected by appropriate policy and legislation and how cancer awareness among the population needed to be improved.

They emphasized an urgent need to decentralize cancer services to regional centers to avoid delays in cancer care access, make cancer services free of charge, increase staffing of HCPs (especially in public facilities) to manage the increasing cancer patient population, form a parliamentary forum on cancer so policy makers are always informed of developments in cancer and its management, and a cancer survivors’ forum where cancer patients can share their lived experiences and needs, an avenue that also has potential to create and strengthen awareness about cancer.

In addition, the authors consider that further research using alternative methodological designs, for example, grounded theory is undertaken to generate deeper understanding of the topic.

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