Educational support for patients and caregivers

Most educational sessions for families and caregivers of cancer patients have been on delivering information rather than building skills (Khadijeh et al., Reference Khadijeh, Maryam and Hamid2015). Delivering patient education on palliative care based on a need assessment and identification of learning barriers may contribute to effective patient outcomes and patient safety (Karlou et al., Reference Karlou, Papathanassoglou and Patiraki2015). Findings have suggested that one-on-one educational sessions which teach problem-solving skills could be successfully delivered in a busy palliative care setting or clinic (Karlou et al., Reference Karlou, Papathanassoglou and Patiraki2015; Khadijeh et al., Reference Khadijeh, Maryam and Hamid2015). Another previous study reported that patients complained about how they had a lack of information on how to cope with their condition, feeling lost, and being left alone (Aebischer et al., Reference Aebischer, Nikolic and Lazic2018). In a similar cross-sectional analysis by Meegoda et al. (Reference Meegoda, Fernando and Sivayogan2015) although 94% of the cancer patients required health education, only 73% received it. This indicates that educational needs for patients and their relatives should be informed by health professionals and other public health services.

A study conducted with 31 socioeconomically disadvantaged minority patients with cancer (who were at risk for under-treatment of cancer-related pain), when asked what information should be included in educational materials on cancer pain, suggested information about pain medications, working with physicians to manage pain, using religious faith to cope with pain, and helping family members to understand about cancer pain (Anderson et al., Reference Anderson, Richman and Hurley2002). A qualitative study looking at the personal views of very ill cancer patients with a Turkish or Moroccan background highlighted that patients viewed “good palliative care” as care providers not taking away the hope of recovery by informing and educating patients directly and openly about the negative prognosis of their condition (De Graaff et al., Reference De Graaff, Francke and Van Den Muijsenbergh2010). These show the importance of educational support for cancer patients in their views and preferences on how they would like palliative care delivered to them. Health and public services in LMICs are to assist cancer patients through the use of different educative measures, knowledge, and skills, to keep hope alive. De Graaff et al. (Reference De Graaff, Francke and Van Den Muijsenbergh2010) point out in their study that patients often doubt the expertise and the commitment of workers from health care and public services in LMICs as often exacerbated when compared with workers from high-income countries.

Another study by Powell et al. (Reference Powell, Namisango and Gikaara2014) designed to identify the priorities and preferences of cancer patients in Namibia, demonstrated that 98% of cancer patients requested for information and educational support, and 93% requested for information on their symptoms and problems along with their caregivers. Similarly, a study conducted in Ethiopia had shown that cancer patients who received adequate information and education support and had knowledge of palliative care services were 26.9 times (adjusted odds-ratio = 26.9, 95% CI 12.3, 59) more likely to use the services as compared with those who had not received any educational support (Lakew et al., Reference Lakew, Musema and Shimeles2015). Openness in educational support and effective communication on care delivery for cancer patients and their caregivers in resource-limited settings are pertinent. It is also important that efficient association exists between the level of response and the utilization of palliative care among cancer patients and how much educational support is received. In underserved areas of Africa for instance, there is critical need for improvement in enhancing knowledge on how to provide quality palliative care amongst staff in the Health and Public services, which care for patients with advanced cancer (Yennurajalingam et al., Reference Yennurajalingam, Amos and Weru2019). A variety of educational initiatives for healthcare professionals within LMICs and with international partnerships have developed in response to the need for more training in palliative care (Hannon et al., Reference Hannon, Zimmermann and Knaul2016).

Psycho-social challenges and support

Cancer patients in LMICs have reported challenges to access social support, cases of depression and neglect (Anderson et al., Reference Anderson, Richman and Hurley2002; Spence et al., Reference Spence, Crath and Hibbert2010). A study conducted in Bosnia-Herzegovina, with 62 terminally ill patients reported 63% of patients (39 out of 62 patients), declared they were depressed (24 most of the time and 15 very often), particularly because of isolation and loneliness (Aebischer et al., Reference Aebischer, Nikolic and Lazic2018). Some patients spontaneously stressed their need for psycho-social support and treatment against anxiety. Simply being able to go out from their bed or their home was a source of relief (Aebischer et al., Reference Aebischer, Nikolic and Lazic2018; Pareek et al., Reference Pareek, Bhalavat and Chandra2019). A cross-sectional study on 234 individuals with advanced stages of cancer, who attended palliative care in South India, reported prevalence major depression (70%) among patients (Sudarisan et al., Reference Sudarisan, Abraham and George2019). Sudarisan reported that the presence of financial difficulties (3.9; 95% Cl, 2.00–7.61) and the absence of health insurance (OR = 1.92, 95% Cl, 1.02–3.7) were significantly associated with major depression (Sudarisan et al., Reference Sudarisan, Abraham and George2019). Explaining that the higher baseline prevalence of depression was due to the type of medium human development index (HDI) in the country compared with a developed country (Sudarisan et al., Reference Sudarisan, Abraham and George2019).

Studies have shown that social well-being and psycho-social support in palliative care resulted in patient satisfaction and an early recovery from depression. A study explained that cancer patients who have full social well-being are more likely to respond with a positive attitude to palliative care services than patients with little social well-being since the quality of life is not adequate when only the physical needs were met (Isola et al., Reference Isola, Backman and Voutilainen2008). Another study has shown that a majority (70%) of cancer patients express satisfaction with the psychological support they receive (Meegoda et al., Reference Meegoda, Fernando and Sivayogan2015). Similarly, Spence's study revealed that “reaching out and providing love” was identified by cancer patients as being essential to combat depression, fear of death and isolation, and a way of dealing with stigmatization, rejection, abuse, and neglect from family and community members (Spence et al., Reference Spence, Crath and Hibbert2010). It depicts in tandem the significance of addressing the psycho-social and behavioral sine qua non of health professionals, families, and members of the community in LMICs. This would assist in the reduction of discrimination against cancer patients and provide a coping mechanism in palliative care to help deal with the challenges of depression and isolation.

Financial impact and support

In spite of sufficient coverage for palliative care and associated costs in high-income settings, LMICs are still faced with challenges of palliative care needs. The demand and nature of care is based on the epidemiology of the disease in question (Morris, Reference Morris2003). A community-based palliative care need assessment in urban Uganda identified financial assistance for basic provision such as food, shelter, and school fees as an area of need (Kikule, Reference Kikule2003). Palliative care services in LMICs may be community-based and culturally inclined. Such services when available are often provided by independently funded (non-governmental) organizations, whose funding coverage is often limited to a particular geographical area (Harding and Higginson, Reference Harding and Higginson2005; Clark et al., Reference Clark, Wright and Hunt2007). Knowing cancer affects the quality of life, as well as the economic well-being of survivors (Banegas et al., Reference Banegas, Guy and de Moor2016; Whitney et al., Reference Whitney, Bell and Reed2016; Yabroff et al., Reference Yabroff, Dowling and Guy2016), it is important to note that the cost of therapy is often associated with a higher risk of having medical care out-of-pocket (OOP) costs. These OOP costs are about $2,000 or more per year and include spending 20% or more of income on health care (Davidoff et al., Reference Davidoff, Erten and Shaffer2013; Guy et al., Reference Guy, Yabroff and Ekwueme2015). Such financial burden is not without consequences and potentially affects the immediate and future well-being of survivors (Meneses et al., Reference Meneses, Azuero and Hassey2012; Fenn et al., Reference Fenn, Evans and McCorkle2014; Kale and Carroll, Reference Kale and Carroll2016). Certain studies have shown that cancer survivors or those undergoing end-of-life care may forego or delay medical treatment or medications due to the cost, especially those who report cancer-related financial problems (McCullagh and Nelder, Reference McCullagh and Nelder1999; Kent et al., Reference Kent, Forsythe and Yabroff2013; Guy et al., Reference Guy, Yabroff and Ekwueme2015). Cancer patients or survivors and their families incur considerable OOP costs for their medical and health needs regardless of healthcare insurance coverage (Bernard et al., Reference Bernard, Farr and Fang2011; Guy et al., Reference Guy, Ekwueme and Yabroff2013, Reference Guy, Yabroff and Ekwueme2015). This further strengthens the need for adequate awareness and support for cancer patients at both the survivorship and end-of-life stages.

Understanding the potential barriers posed by the increased cost of care in cancer patients at a minimal level, in a resource-limited environment, is imperative for their self- consciousness and informed decision-making. Several studies have reported disparities on the relationship between the cost of care and care preference in cancer patients (Probst et al., Reference Probst, Laditka and Wang2007; Shugarman et al., Reference Shugarman, Sorbero and Tian2008; Charlton et al., Reference Charlton, Schlichting and Chioreso2015). Patients in resource-limited settings have low cost of care, which may as well be attributed to differences in their healthcare-seeking behavior (Probst et al., Reference Probst, Laditka and Wang2007; Shugarman et al., Reference Shugarman, Sorbero and Tian2008; Charlton et al., Reference Charlton, Schlichting and Chioreso2015). Likewise, given long distances to treatment centers, patients in these settings may obtain less care and, as a result, incur lower costs (Probst et al., Reference Probst, Laditka and Wang2007; Shugarman et al., Reference Shugarman, Sorbero and Tian2008; Charlton et al., Reference Charlton, Schlichting and Chioreso2015). Researchers have reported a higher OOP cost of 13–20% of the income of patients with low wages in resource-incapacitated areas. Most of these costs were for medical care, including hospital bills and medications. Costs increased over time as patients progressed from diagnosis into end-of-life stages (Bernard et al., Reference Bernard, Farr and Fang2011; Pisu et al., Reference Pisu, Azuero and Benz2017). For example, patients were more likely to report a financial decline after diagnosis (Jagsi et al., Reference Jagsi, Pottow and Griffith2014), of higher likelihood of financial hardship (Shankaran et al., Reference Shankaran, Jolly and Blough2012; Yabroff et al., Reference Yabroff, Dowling and Guy2016), financial problems related to cancer (Kent et al., Reference Kent, Forsythe and Yabroff2013), or higher economic hardship in survivorship, such as difficulty living on household income (Pisu et al., Reference Pisu, Kenzik and Oster2015). Additionally, indirect costs of palliative care in cancer patients often can be considered for the family and can lead to treatment abandonment (Arora et al., Reference Arora, Eden and Pizer2007). Therefore, understanding how to support interventions in palliative care could assist cancer patients in containing the financial challenges associated with the cost of care is particularly important, especially for vulnerable and under-resourced populations in LMICs.

Spiritual support

Spiritual care is an integral element of palliative care and the majority of advanced cancer patients express their wish to receive spiritual care as part of their medical care to assist them in their illnesses experience and in preserving their quality of care (Balboni et al., Reference Balboni, Balboni and Paulk2011). Positive religious coping has been seen to play an important role in the quality of life in life-threatening illnesses (Tarakeshwar et al., Reference Tarakeshwar, Vanderwerker and Paulk2006). Cancer causes loss of hope and dreams and affects not just the body but the soul (Villagomeza, Reference Villagomeza2005). A study on religious and spiritual support among advanced cancer patients identified that many believe in God and that religion was seen as very influential (Balboni et al., Reference Balboni, Balboni and Paulk2011). However, patients were not able to attend religious activities after becoming ill (Balboni et al., Reference Balboni, Balboni and Paulk2011). Terminally ill patients have claimed to find relief in the faith that is, going to church, getting the communion, and having religious leaders speak to them (Aebischer et al., Reference Aebischer, Nikolic and Lazic2018). Attending to the spiritual needs of cancer patients improves patient satisfaction during hospitalization, and patients who receive less spiritual care seem to experience depression and less peace of mind (Pearce et al., Reference Pearce, Coan and Herndon2012). Pearce's research which looked at unmet needs in advanced cancer patients showed most patients had spiritual needs (91%), where the majority received spiritual support from healthcare providers (68%) and others received support from religious communities (73%) and hospital Chaplains (36%) (Pearce et al., Reference Pearce, Coan and Herndon2012).

In a recent study, participants with cancer rated prayers of others very highly and also desired prayers for themselves, considering the results positive (Alcorn et al., Reference Alcorn, Balboni and Holly2010). A study conducted with cancer patients in Iran highlighted how patients turn to religion more often to cope with critical situations (Khadijeh et al., Reference Khadijeh, Maryam and Hamid2015). Cancer patients in Pareek's study conducted in India revealed that greater use of positive religious coping was associated with better overall quality of life (Pareek et al., Reference Pareek, Bhalavat and Chandra2019). Anderson also highlighted that 83% of African-American cancer patients in a study stated that prayer was the most frequently used technique as an alternative way of dealing with their pain, in addition to pain treatments prescribed by their physicians (Anderson et al., Reference Anderson, Richman and Hurley2002). A research conducted in Pakistan, a predominantly Muslim country (97%), showed that recitation of the Holy Quran and Kalimas near a terminally ill patient was a common practice, and stemmed from the belief that listening to the Quran provided emotional and mental peace to the dying, and relieved the pain and unpleasant sensations associated with the illness (Khan, Reference Khan2017). Understanding preferences of cancer patients in LMICs in relation to their spiritual needs is vital in providing quality palliative care. Social workers’ roles in palliative care are recognized in many countries in supporting the psycho-social and spiritual aspects of the patients and caregivers of life-threatening illnesses. In planning palliative care, it is crucial to understand the spiritual and religious philosophies and the spiritual orientation of both patient and caregivers. This may assist to cope, prepare for end-of-life situations, and accept the realities of life (Ragesh et al., Reference Ragesh, Zacharias and Thomas2017).

Support for families and caregivers

According to WHO, palliative care is inclusive of support for family members and caregivers. However, this can be challenging in poor-resource settings, where caregivers themselves may be compromised with the disease burden. A recent study comparing the availability of informal caregivers for terminally ill cancer patients in UK and Egypt found that chances of having a caregiver present in a family in a middle-income country is 18% higher than a high-income country (Abdel-Malek et al., Reference Abdel-Malek, Farag and Shohdy2019). This shows that in LMICs, caregivers are likely to be family members, who would stay with patients during times of hospitalization and palliative care stages of a patient.

Families and caregivers of cancer patients in palliative care and bereavement phases undergo enormous physical and mental morbidity. In some cases, the psychological burden of the caregiver surpasses that of a critically ill patient. Caregivers, who go through distress, whiles caring for patients, can have negative impacts on critically ill patients and their well-being (Williams and McCorkle, Reference Williams and McCorkle2011). A study conducted in China on caregivers for advanced cancer identified caregiving experience places an enormous emotional, financial, social, and physical burden on families and caregivers, and neglect their care which results in becoming a healthcare issue as well (Cui et al., Reference Cui, Song and Zhou2014). Many family members and caregivers of palliative care patients experience poor health, psychological issues, and other unmet needs which need support from healthcare professionals (Hudson et al., Reference Hudson, Remedios and Zordan2012). Often these caregivers are excluded from information and care planning, thus resulting in unpreparedness for their caregiving role.

The quality of a critically ill patient may be severely compromised without support from a close family member or caregiver (Hudson et al., Reference Hudson, Remedios and Zordan2012). A key element in cancer patients deciding to die at home is dependent on the availability of a family member as a caregiver to care at home (Stajduhar et al., Reference Stajduhar, Martin and Barwich2008). Palliative care for advanced cancer in resource-limited countries and the lack of palliative services can result in patients staying at home and requiring family members to take up caregiving roles (Chindaprasirt et al., Reference Chindaprasirt, Limpawattana and Pakkaratho2014). There are different levels of the disease burden that are felt by family members and caregivers during palliative care. In a Thailand study on caregivers’ level of burden with advanced cancers, caregivers’ marital status, their relationships with patients, and the presence of migraine were the most common problems that affected their caring role (Chindaprasirt et al., Reference Chindaprasirt, Limpawattana and Pakkaratho2014). Caregivers sometimes chose not to reveal the real burden the experience due to feelings of guilt, and in some cultures, it was the obligation of the offspring or younger members of the family to care for the elders and sick people, which was believed as receiving blessings (Chindaprasirt et al., Reference Chindaprasirt, Limpawattana and Pakkaratho2014).

In palliative care, support for families and caregivers is one of the core functions. The first step in supporting families and caregivers is to understand their needs. Many caregivers would like more information, guidance, preparation, and assistance in providing end-of-life care for their caregiving role (Hudson et al., Reference Hudson, Trauer and Graham2010). A study conducted in China identified education on the knowledge of the disease, treatment modalities, and support from health professionals as the highest need for families and caregivers (Cui et al., Reference Cui, Song and Zhou2014).

In LMICs, systematic approaches are required to train caregivers in the delivery of palliative care and pain management for their patients. Trainings may be modified to the local and care context. However, in several regions, this may be done by volunteers either working alone or alongside health professionals (Hannon et al., Reference Hannon, Zimmermann and Knaul2016). In countries where resources are very limited and without any specialized palliative care services, organizing a primary and secondary caregiver is essential. Additionally, allocating regional and global funding options has greatly assisted in prevention and treatment of patients with cancers (Farmer et al., Reference Farmer, Frenk and Knaul2010). In developing countries, most patients with advanced illnesses prefer to be at home, and therefore, it is important to develop educational interventions and tools to upskill and improve knowledge of families and caregivers (Ddungu, Reference Ddungu2011).

Preferences for end-of-life care

Models of palliative and end-of-life care must be sensitive to the patients’ preferences in an area with limited-resource setting. Substantial modifications or alternate models tailored to the specific clinical settings and healthcare systems, and the unique educational, social, spiritual, and other needs of cancer patients may be required in various LMICs of the world (Hannon et al., Reference Hannon, Zimmermann and Knaul2016).

About 50–90% of patients with cancer, when asked to express a wish regarding place of death, would choose to die at home (Higginson and Sen-Gupta, Reference Higginson and Sen-Gupta2000). Some studies from a variety of countries have linked patients’ expression of their preferred place with the actual place of death, revealing more patients achieve home death if they receive the opportunity to express a wish to do so (Karlsen and Addington-Hall, Reference Karlsen and Addington-Hall1998; Cantwell et al., Reference Cantwell, Turco and Brenneis2000; Brazil et al., Reference Brazil, Bedard and Willison2002; Fukui et al., Reference Fukui, Kawagoe and Masako2003). However, there is little evidence on the preferred or actual place of death for patients in LMICs. Unlike in high-income and developed countries, where palliative or hospice care is often considered a key component of care for cancer patients, residents of LMICs may be faced with limited access to care. For instance, the WHO has recommended all hospitals which treat patients with cancer to have a palliative care service (WHO, 2014, 2018b). 98% of patients who need palliative care for cancer reside in low or middle-income countries, where access to palliative care and pain relief are often extremely reduced (WHO, 2014). Studies from high-income countries had suggested that hospital-based palliative care services improve symptom control and reduce non-beneficial or harmful treatments, such as chemotherapy near the end-of-life (Higginson et al., Reference Higginson, Finlay and Goodwin2002; O'Mahony et al., Reference O'Mahony, Blank and Zallman2005; Penrod et al., Reference Penrod, Deb and Luhrs2006).

There is still a dearth of data from LMICs regarding cancer patients’ preference for where palliative care should be delivered to them. Interventions and guidelines on the cost of medications, treatment, terminal-stage management, and funeral arrangements are not well investigated in patients who are at the end-of-life stage of their illness. Few studies in LMICs revealed that the majority of adult cancer patients often require a truthful disclosure of their disease prognosis and expressed preference for hospital-based care at end-of-life (WHO, 2014; Zafar et al., Reference Zafar, Hafeez and Jamshed2016). Zafar et al. (Reference Zafar, Hafeez and Jamshed2016) reported that two out of five patients agreed to die at home and over 90% of cancer patients wanted all possible care till end-of-life and 50% or above preferred not to be placed on a ventilator. These disclosures were influenced by the patients’ religious beliefs with that of their caregivers, and avoidance of inappropriate prolongation of dying (Zafar et al., Reference Zafar, Hafeez and Jamshed2016). The patients’ informed decision is based on tailoring their expressed information needs to their disease prognostic data. Enabling patients to die in their place of choice depends on healthcare providers’ understanding of the patient prognoses (Zafar et al., Reference Zafar, Hafeez and Jamshed2016). Patients’ choice as to their preferred place of death should involve at least two ranges of available high-quality options, which should include; home, hospital, and nursing home (Munday et al., Reference Munday, Dale and Murray2007). Studies have shown that contextual factors that influence patients’ choice include the extent of a social network, perception of carers’ attitudes, symptom management, and fear of loss of dignity and patients/carers views of the care provided by palliative care providers (Thomas et al., Reference Thomas, Morris and Clark2004; Munday et al., Reference Munday, Dale and Murray2007).