Psychological Domain

The ability to cope with the disease experience and its associated consequences is the main feature of the psychological domain (Fitch, Reference Fitch2008). Almost every cancer patient experiences psychological problems to some degree during the trajectory of the disease. Our review of the literature demonstrated that the experience of living with cancer in Africa creates significant psychological problems for the affected patients and caregivers (Harding et al., Reference Harding, Selman and Agupio2011; Hameed, Reference Hameed2011). Common psychological problems include depression, difficulties in coping, poor self-image and self-esteem, loss, and sexual challenges (Harding et al., Reference Harding, Selman and Agupio2011; Kamau et al., Reference Kamau, Osoti and Njuguna2007; Lavy, Reference Lavy2007; Mwanda et al., Reference Mwanda, Abdallah and Obondo2004).

In a study by Mwanda et al. (Reference Mwanda, Abdallah and Obondo2004) conducted in Kenya, 93% of palliative care patients complained of difficulties with coping. These patients made mention of feelings of misery and pain, an inability to work, and family health issues. In addition, patients presented with depression that was manifest by work retardation, insomnia, and anorexia. In addition, a study by Harding and colleagues (Reference Harding, Selman and Agupio2011) carried out in Uganda and South Africa reported pain and psychological problems for three of every four patients. Psychological symptoms like “I don't look like myself” (n = 21, 18.8%) and sexual problems (n = 43, 38.4%), were some of the most severe symptoms (Harding et al., Reference Harding, Selman and Agupio2011, p. 53).

The reviewed studies also demonstrated that psychological well-being in Africa is hampered by age (being younger than 50 years), inaccessibility and unavailability of palliative care services, poor communication, deficiency of information, and social isolation (Kamau et al., Reference Kamau, Osoti and Njuguna2007; Masika et al., Reference Masika, Wettergren and Kohi2012; Selman et al., Reference Selman, Higginson and Agupio2009; Reference Selman, Higginson and Agupio2011). African patients affected by the aforementioned factors usually developed psychological distress. In fact, a study by Harding et al. (Reference Harding, Selman and Agupio2011) that involved 112 patients in South Africa and Uganda reported mean psychological distress indices that were much higher than those reported by patients in the United States and China (Hwang et al., Reference Hwang, Chang and Cogswell2004; Lam et al., Reference Lam, Law and Fu2008; Bekelman et al., Reference Bekelman, Rumsfeld and Havranek2009; Tranmer et al., Reference Tranmer, Heyland and Dudgeon2003).

These findings carry critical implications for palliative care. The high prevalence of psychological symptoms among cancer patients in Africa calls for holistic psychological interventions. Such interventions need to be theoretically driven, locally modified, and individually tailored. In cases where psychological approaches have been used in Africa, care support has come from family, community members, and volunteer health workers (Herce et al., Reference Herce, Elmore and Kalanga2014; Jack et al., Reference Jack, Kirton and Birakurataki2011). Volunteer health workers in countries like Uganda offer psychological care through counseling, emotional, and financial support (Jack et al., Reference Jack, Kirton and Birakurataki2011). Such efforts need to be fostered and incorporated into more holistic efforts.

Physical Domain

Physical comfort, pain relief, proper nutrition, and an ability to carry out usual daily functions encompass the physical domain (Fitch, Reference Fitch and Fitch2009). In the reviewed studies, such physical problems as pain, weight loss, fatigue, and shortness of breath were frequently experienced by palliative care patients with cancer (Mwanda et al., Reference Mwanda, Abdallah and Obondo2004). Among the reported physical symptoms, pain was most frequently experienced (Harding et al., Reference Harding, Selman and Agupio2011; Tapsfield & Jane Bates, Reference Tapsfield and Jane Bates2011). In studies by Alsirafy et al. (Reference Alsirafy, El-Mesidi and El-Sherief2011) and Harding et al. (Reference Harding, Selman and Agupio2011), cancer patients in Egypt, Uganda, and South Africa reported higher pain levels than cancer patients elsewhere. Harding et al. (Reference Harding, Selman and Agupio2011) found pain to be the most severe (23.2%) and most prevalent (87.5%) symptom among 18 others. Similarly, Powell et al. (Reference Powell, Namisango and Gikaara2014) found that healthy Namibians were most concerned about pain (n = 52, 26.1%) at the end of life.

Higher unmet physical needs were related to deficiency of palliative care services, which included unavailability of comfort medication, lack of palliative care expertise, and lack of awareness. African countries like Uganda that have devised ways to address needs in the physical domain have mainly used local approaches (Jack et al., Reference Jack, Kirton and Birakurataki2011; Merriman & Harding, Reference Merriman and Harding2010). Ugandan community volunteer workers provide direct physical care that includes bathing, feeding, and wound care to palliative care patients (Jack et al., Reference Jack, Kirton and Birakurataki2011). Healthcare providers also locally prepare and prescribe cheap oral morphine for pain management and use locally available pawpaw seeds to manage constipation (Merriman & Harding, Reference Merriman and Harding2010). In Egypt, some healthcare providers run 24-hour, 7-days-a-week outpatient pain and symptom management clinics (Hameed, Reference Hameed2011), and countries like South Africa, Uganda, Nigeria, Tanzania, and Malawi procure and administer morphine to palliative patients (Bates et al., Reference Bates, Gwyther and Dinat2008; Merriman & Harding, Reference Merriman and Harding2010; Jagwe & Merriman, Reference Jagwe and Merriman2007; Kamuhabwa & Ezekiel, Reference Kamuhabwa and Ezekiel2009; Selman et al., Reference Selman, Higginson and Agupio2011; Eyelade et al., Reference Eyelade, Ajayi and Elumelu2012; Tapsfield & Jane Bates, Reference Tapsfield and Jane Bates2011).

Social Domain

According to Fitch (Reference Fitch and Fitch2009), the social domain includes those needs related to relationships within the family, being accepted in the community, and involvement in other relationships. A cancer diagnosis can negatively affect the relationship between a patient and the family, friends, community, and church members. In the reviewed studies, the social domain was evident in presented social needs, which included social withdrawal, a desire for better social relations, and the need for social support (Kamau et al., Reference Kamau, Osoti and Njuguna2007; Katumba et al., Reference Katumba, Obore and Kaye2013; Masika et al., Reference Masika, Wettergren and Kohi2012; Mwanda et al., Reference Mwanda, Abdallah and Obondo2004; Selman et al., Reference Selman, Higginson and Agupio2011; Jansen van Rensburg et al., Reference Jansen van Rensburg, Maree and van Belkum2013).

Gaps in the social domain were influenced by practical issues like distance and transportation costs. Patients in Tanzania were sometimes hospitalized in institutions that were far from where their families and friends resided (Masika et al., Reference Masika, Wettergren and Kohi2012). Because of the distance and travel costs, some relatives could not afford to visit. This combination led to social isolation and withdrawal (Mwanda et al., Reference Mwanda, Abdallah and Obondo2004; Selman et al., Reference Selman, Higginson and Agupio2009). Though some patients accepted the social limitations, their desire for social support remained evident. On the other hand, the positive aspects of the social domain were also presented in some of the reviewed studies. For instance, to overcome social isolation, some patients and volunteers in Tanzania visited those whose family members could not (Masika et al., Reference Masika, Wettergren and Kohi2012).

Emotional Domain

Fitch (Reference Fitch2008) described emotional needs as the desire for comfort, for a sense of belonging, for understanding, and for reassurance when faced with stressful and upsetting situations. Emotional needs are common among palliative care patients and their caregivers (Herce et al., Reference Herce, Elmore and Kalanga2014). Palliative care patients in African countries often present with a desire for peace and meaning in life, feelings of sadness, worry, tension, depression, irritability, and nervousness (Harding et al., Reference Harding, Selman and Agupio2011; Herce et al., Reference Herce, Elmore and Kalanga2014; Kamau et al., Reference Kamau, Osoti and Njuguna2007; Selman et al., Reference Selman, Higginson and Agupio2011). Other palliative care patients, like those in Kenya, presented with suicidal ideation, self-accusation, and guilt (Mwanda et al., Reference Mwanda, Abdallah and Obondo2004). In a Ghanaian study by Clegg-Lamptey and colleagues (Reference Clegg-Lamptey, Dakubo and Attobra2009), 38 (42.7%) of breast cancer patients expressed a fear of cancer, while others expressed shock, devastation, and depression.

Some of the presented emotional needs were exacerbated by the illness and by unmet physical, social, informational, and practical needs. In a study by Selman et al. (Reference Selman, Higginson and Agupio2011) conducted in Uganda and South Africa, some individuals expressed worry and isolation and a lowered sense of meaning in life after being diagnosed with cancer. Poor communication and lack of information also often resulted in emotional problems among palliative care patients in these two countries (Donovan-Kicken & Caughlin, Reference Donovan-Kicken and Caughlin2011).

Spiritual Domain

The spiritual domain is about the need to find meaning and purpose in life, and the need to practice a religious belief (Fitch, Reference Fitch2008). Spiritual wellness and spiritual needs in palliative care were rarely mentioned in the reviewed studies. Participants in a Ugandan/South African study stated a desire for spiritual support (Selman et al., Reference Selman, Higginson and Agupio2011), while in Tanzanian (Masika et al., Reference Masika, Wettergren and Kohi2012) and Botswanan (Philips & Lazenby, Reference Philips and Lazenby2013) studies, patients and caregivers experienced some level of spiritual support.

Where patients desired spiritual support, concerns like having a low sense of meaning in life were voiced (Selman et al., Reference Selman, Higginson and Agupio2011). In situations where spiritual support was experienced, patients benefited from religious practices. In a study by Masika et al. (Reference Masika, Wettergren and Kohi2012), cancer patients often went to church or mosque to seek spiritual support. They also received hospital visits and prayers from religious people, which helped to improve their sense of hope. Similarly, in a study by Philips & Lazenby (Reference Philips and Lazenby2013) conducted in Botswana, some respondents (46.4%) mentioned that their loved ones were visited by a spiritual advisor when death approached. Visits by a spiritual advisor were most common among patients who died while in a hospice compared to those that died while in a hospital or at home. The experience of having a spiritual advisor at the time of death was most related to spiritual satisfaction (Philips & Lazenby, Reference Philips and Lazenby2013).

Informational Domain

Fitch (Reference Fitch2008) associates the informational domain with palliative care needs for information in order to reduce the symptoms of fear, confusion, and anxiety. When patients and their families have adequate information, they are better prepared to make informed decisions and acquire the required skills (Fitch, Reference Fitch2008).

African palliative care patients, the general public, and care providers have a limited awareness of palliative care (Mwangi-Powell, Reference Mwangi-Powell2012; Downing et al., Reference Downing, Gwyther, Mwangi-Powell and Sallnow2012; Powell et al., Reference Powell, Namisango and Gikaara2014; Selman et al., Reference Selman, Higginson and Agupio2009; Paice et al., Reference Paice, Ferrell and Coyle2010). Palliative care patients in Uganda, Tanzania, and South Africa desire information on cancer, prognosis, treatment, how to cope, expected care, length of hospital stay, and financial and social support (Masika et al., Reference Masika, Wettergren and Kohi2012; Selman et al., Reference Selman, Higginson and Agupio2009). Some patients in Uganda and South Africa also experienced insincere, insensitive communication with care providers, who often shared information with minimal confidentiality (Selman et al., Reference Selman, Higginson and Agupio2009).

In a cross-sectional study on perceptions of physicians with regard to truthtelling in Nigeria, Nwankwo and Ezeome (Reference Nwankwo and Ezeome2011) found that slightly more than 50% (N = 92) of physicians either generally or rarely disclosed cancer diagnoses and favorable prognoses to their patients, and a scant 7.5% disclosed prognoses to patients when the cancer was advanced. When communication is avoided or information is not accurately relayed, poor psychological health is likely manifested by distress, self-blame, anxiety, and depression (Donovan-Kicken & Caughlin, Reference Donovan-Kicken and Caughlin2011). In a study by Selman et al. (Reference Selman, Higginson and Agupio2009), Ugandan and South African patients were most likely to experience worry, fail to practice good self-care, and fail to plan for the future when they lacked adequate information.

Palliative care information needs to be communicated in a direct and compassionate manner that strengthens the relationships among patient, family, and care provider. Better communication can be individually tailored and approached from a discussion standpoint that anticipates the best while at the same time preparing the patient and family for the worst (Back et al., Reference Back, Arnold and Quill2003). Furthermore, these discussions can focus on what those affected know about cancer, palliation, and prognosis, what is important to them, and their expectations (King & Quill, Reference King and Quill2006).

The limited awareness of palliative care in Africa comes as a result of a paucity of education and training. Only five countries have integrated palliative care into health professionals' educational curriculum, with four of them (Kenya, Malawi, South Africa, and Uganda) recognizing palliative care as an examinable subject (Clark et al., Reference Clark, Wright and Hunt2007). In cases where progress has been made, palliative care train-the-trainer initiatives have been carried out (Malloy et al., Reference Malloy, Paice and Ferrell2011; Paice et al., Reference Paice, Ferrell and Coyle2010; Machira et al., Reference Machira, Kariuki and Martindale2013). In Uganda, palliative care education has been integrated into the medical training curriculum along with training of community health volunteers (Jack et al., Reference Jack, Kirton and Birakurataki2011; Merriman & Harding, Reference Merriman and Harding2010).

Practical Domain

Fitch (Reference Fitch2008) describes practical needs as “direct assistance in order to accomplish a task or activity and thereby reduce the demands on the person (e.g., homemaking services)” (p. 9). In the reviewed African studies, the most common practical issue involved financial challenges (Herce et al., Reference Herce, Elmore and Kalanga2014; Jack et al., Reference Jack, Kirton and Birakurataki2011; Kamau et al., Reference Kamau, Osoti and Njuguna2007; Masika et al., Reference Masika, Wettergren and Kohi2012; Mwanda et al., Reference Mwanda, Abdallah and Obondo2004). Such challenges result from a reduction in income, unemployment, or an inability to work (Mwanda et al., Reference Mwanda, Abdallah and Obondo2004; Herce et al., Reference Herce, Elmore and Kalanga2014; Masika et al., Reference Masika, Wettergren and Kohi2012), and they can lead to an inability to purchase medication and provide basic needs, and lead to a feeling that one's standard of living is declining (Masika et al., Reference Masika, Wettergren and Kohi2012).

Other practical needs that were raised include unemployment, inaccessibility to healthcare services because of distance and transport challenges, a lack of food, indecent housing, and deficiencies in such commodities as soap, water, clothes, and sugar (Herce et al., Reference Herce, Elmore and Kalanga2014; Masika et al., Reference Masika, Wettergren and Kohi2012; Table 1). Community volunteer workers in Uganda also presented with practical needs of traveling and inaccessibility (Jack et al., Reference Jack, Kirton and Birakurataki2011). Some complained of the long distances to their patients' residences, the deteriorating condition of their bicycles, financial limitations, and language barriers (Jack et al., Reference Jack, Kirton and Birakurataki2011).

To overcome the aforementioned deficiencies, community volunteer workers often play diverse roles, including collecting medicines, food, and water for their patients (Jack et al., Reference Jack, Kirton and Birakurataki2011). Some volunteers mobilize community members to assist with household duties or engage in chores themselves. Furthermore, some volunteers, family members, the community, and local and government organizations donate food, money, and clothes to some ailing patients (Jack et al., Reference Jack, Kirton and Birakurataki2011; Herce et al., Reference Herce, Elmore and Kalanga2014; Masika et al., Reference Masika, Wettergren and Kohi2012).

Multidimensional and Multi-Professional Approach

Palliative care patients with cancer in Africa benefit from some level of palliative care support (Table 1). Support is commonly provided by patients' families, community volunteers, friends, and spiritual leaders (Jack et al., Reference Jack, Kirton and Birakurataki2011; see Table 1). However, cancer patients continue to report increasing unmet palliative care needs. To address these needs, better multidimensional holistic support is required. The multidimensional nature of the supportive care framework can be used to approach individual patients with an understanding that they can experience a multitude of needs (Fitch, Reference Fitch2008).

Patients who experience constantly changing interrelated needs will sometimes cope and adapt to situations differently (Fitch, Reference Fitch2008; Reference Fitch and Fitch2009). Care providers utilizing the supportive care framework may thus offer better palliative care if they individualize and coordinate their assessments and palliative care interventions (Fitch, Reference Fitch2008). Needs could be assessed along the different domains followed by interventions that are matched to an individual patient's needs, desired goals, and coping mechanisms.

A multi-professional approach that includes psychologists, nurses, physicians, social workers, and religious leaders may be needed. A multi-professional approach can reduce the overall cost of care and the time spent in hospital settings (Hearn & Higginson, Reference Hearn and Higginson1998; Merriman & Harding, Reference Merriman and Harding2010). Different professionals may bring diverse expertise to assessment, planning, and management of care needs. The team of professionals needs to demonstrate an integrated supportive care, for example, by providing information throughout the care process and referring patients to the appropriate care professionals.

Palliative Care Information

To arrive at a more holistic approach, caregivers, family, and community members may benefit from information on the interaction of patients' symptoms and on how a coordinated multidimensional/multi-professional approach would be more effective. Such information may describe how to identify patients' needs, analyze them, and provide individually tailored interventions (Fitch, Reference Fitch2008). Care providers will better serve cancer patients if they have a better understanding of their palliative care needs, of the symptoms to watch out for, and the means for addressing them. Care providers may also benefit from an understanding that the health and well-being of palliative care patients can be improved by providing caring and emotional support (Fan et al., Reference Fan, Lin and Lin2014). When providing holistic care, providers can utilize supportive skills of listening, being empathetic, and showing acceptance (Fan et al., Reference Fan, Lin and Lin2014).

Palliative Care Research

There is a need for more research to better inform palliative care in Africa. Much of the research on palliative care in Africa has focused on pain management (Table 1). More study of the other palliative care needs among African patients with cancer is needed. This research could take a supportive care framework approach that categorizes patients' needs according to different domains (Fitch, Reference Fitch2008). Research on the spiritual, social, and psychological domains among palliative patients with cancer in Africa is now limited (Harding & Higginson, Reference Harding and Higginson2005). Research in these areas is needed to define the predictors of health and well-being for African cancer patients that could guide planning and delivery of appropriate palliative care (Selman et al., Reference Selman, Higginson and Agupio2011). Research on palliative care in Africa also needs to expand beyond South Africa, Uganda, Malawi, Tanzania, and Kenya (Table 1). Work from other African nations is necessary to improve our understanding of the palliative care situation in more diverse African settings.

In areas where palliative care has been initiated in Africa, outcome evaluations are needed to ascertain their effectiveness. This is in the context of increasing palliative care needs among African cancer patients. Outcome evaluations of palliative care services could be designed based on a supportive care framework to ensure holistic evaluations (Fitch, Reference Fitch2008). Much of the focus on these palliative care services has been on pain management, with other aspects like quality of life neglected (Selman et al., Reference Selman, Higginson and Agupio2011; Jansen van Rensburg et al., Reference Jansen van Rensburg, Maree and van Belkum2013). Therefore, using a supportive care framework to evaluate these services will provide better information on how palliative care domains are addressed and suggest areas for improvement.