Abstract
Aging populations and a rising disease burden have increased the need for palliative care (PC). Despite the growing demand for PC, only 14% of patients worldwide receive this service. Home-based PC is necessary because many people prefer to receive care and die at home. Nurses are well equipped to address diverse health care needs in the community and are critical to successful delivery of home-based PC. The purpose of this review is to synthesize and analyze literature relevant to home-based PC in Saudi Arabia with an emphasis on nursing. This purpose required us to examine literature in two areas: PC and home health care (HHC). We identified studies through database searches. We found 24 studies published between 2005 and 2021 that met quality and inclusion criteria. Although PC and HHC are associated with positive outcomes, lack of nurses’ knowledge and awareness of PC and the underdevelopment of HHC in Saudi Arabia have contributed to underuse of these services. Nurses are vital to the functioning of interdisciplinary teams and effective interfacing with patients, caregivers, and families. Education and training of nurses in Saudi Arabia is essential to promoting access to PC and HHC and the development of home-based PC in the kingdom.
Introduction
Palliative care (PC) is an interdisciplinary specialty focused on symptom relief and quality of life (QOL) for people living with serious illness.1,2 The goal of PC is to prevent and relieve suffering while optimizing QOL for patients and families. 2 Although PC is appropriate for “all people with serious illness, regardless of setting, diagnosis, prognosis, or age,”2(p.1685) its availability in home-based settings is lacking in many countries, including Saudi Arabia.
Home-based PC benefits patients at any stage of illness, including those with life-limiting illness who prefer to receive care and die at home. 3 Nurses, who spend the most time with patients, families, and caregivers relative to other members of the PC team, are particularly vital to the quality and availability of home-based PC.4-6 Despite the benefits of home-based PC and the importance of nursing for this practice, little information is available about this service in Saudi Arabia. The purpose of this integrative review is to synthesize and analyze knowledge relevant to home-based PC in Saudi Arabia with an emphasis on nursing to inform future development of this service. Because home-based PC in Saudi Arabia is an understudied area, this review focuses on the related areas of PC and home health care (HHC).
Background
Need for Home-based PC in Saudi Arabia
Saudi Arabia has a significant need for home-based PC. In a nation of approximately 35,013,414 people, 7 there are 5,000,000 cases of chronic disease, a number that is expected to rise to between 8,000,000 and 10,000,000 by 2030. 8 Moreover, the Saudi Ministry of Health 8 predicted a 5- to 10-fold increase in cancer burden by 2030. Finally, life expectancy in the Saudi population has increased to 76.2 years, and the proportion of elderly is projected to grow from 3.4% in 2019 to 6.0% by 2030. 9
Home-based PC in Saudi Arabia
Although PC was first provided in Saudi Arabia at King Faisal Specialist Hospital and Research Center in the early 1990s, 10 it is still developing and is not broadly available. 11 PC is mainly hospital-based and includes inpatient palliative care units, inpatient consultation, and outpatient models of care. 11 Patients eligible for transfer to PC must have evidence of advanced incurable disease, have an active do not attempt to resuscitate (DNAR) status, have ceased curative treatments, and have accepted (along with family members) transfer of care to this service.11,12 Although HHC programs are available for eligible patients in need of PC, end-of-life patients use hospital-based PC services when PC at home becomes difficult and because hospices and nursing homes are nonexistent. 11
According to the Saudi Ministry of Health, HHC is a part of a continuum of comprehensive health care that promotes, maintains, or restores health, increases independence, and diminishes the effects of disability and illness. 13 The first HHC program, established by King Faisal Specialist Hospital in 1991, was for terminally ill cancer patients. 14 Currently, some hospital programs offer HHC to a variety of patients living within a 50-km radius. 11 Initiation of HHC services prior to hospital discharge requires referral and evaluation by the HHC team. HHC services include meeting patient, family, and caregiver needs, assessing the home environment, and maintaining continuity of care across settings. 13
Although PC can benefit patients at all stages of illness and all HHC programs in Saudi Arabia are publicly funded, 14 PC is only utilized during the terminal stage of illness. Furthermore, HHC remains underutilized in Saudi Arabia, with only 2262 HHC nurses and 2 HHC programs available through ministry of health hospitals. 15
Method
We searched for literature on PC and HHC in Saudi Arabia. Due to a scarcity of research in these areas, we did not limit the search by publication date. The first step of the selection process was a comprehensive search of the CINAHL, Ovid Medline, Scopus, PubMed, and Google Scholar databases using the keywords “Saudi*,” and “PC” joined by “AND.” Next, we searched using the keywords “Saudi*,” “home care* OR home health care*” joined by “AND.” We identified 421 articles across databases after removing duplicates. Next, using Google Scholar, we checked the reference lists of included articles for additional sources. We conducted searches for “PC” and “HHC” separately because when we joined those keywords with “AND,” we received no results.
We screened all article titles and abstracts for eligibility. Studies of PC or HHC with samples from and analyzes specific to Saudi Arabia were eligible for inclusion. As few published studies specifically addressed PC and HHC nursing in Saudi Arabia, we included studies with relevance to nursing even when nursing was not the specific focus. However, we excluded studies focused on non-nursing clinical roles and hospices.
With permission, we used the John Hopkins research evidence tool to evaluate the quality of studies independently and then together to classify studies as high, moderate, or low quality. 16 We only included studies of high or moderate quality in the review. We ultimately identified 24 studies, 15 related to PC and 9 related to HHC (Figure 1). Publication dates ranged from 2005 to 2021.
The Preferred Reporting Items for Systematic Reviews and Meta-Analyzes (PRISMA) method of selecting and excluding studies.
Review of Literature
Overview of Study Designs and Methods
Of the 24 studies we included in this review, 23 were quantitative (12 cross-sectional, 9 retrospective reviews, and 2 randomized controlled trials [RCTs]), and 1 was qualitative. 17 The predominance of descriptive studies in this review likely reflects the nascent development of PC and HHC research in Saudi Arabia.
In most studies, researchers used convenience samples (Table 1), and target populations varied based on study aim. Researchers used a variety of reliable and valid scales (Table 1). All quantitative analyzes entailed descriptive statistics, and 12 employed inferential statistics. The qualitative analysis entailed an iterative coding process to develop themes that 2 external auditors subsequently evaluated. 17
Literature Matrix.
Specialty Knowledge in Nursing
Nurses’ PC knowledge
Two studies with nurses and 3 with nursing students provided evidence about knowledge of PC. In all studies, researchers used the PCQN to measure knowledge, enabling comparisons across studies. PCQN scores range from 0 to 20 with lower scores indicating lower knowledge. Abudari et al. 5 measured knowledge using the PCQN in a sample of 395 nurses from 19 countries working in Saudi Arabia and reported a mean score of 9.06, indicating low knowledge in the sample overall. Notably, Saudi Arabian nurses had the lowest mean score (7.06) of any group among the 18 other nationalities surveyed. Similarly, Aboshaiqah measured knowledge in a sample of 365 nurses recruited from 1 public and 1 private hospital and reported a mean PCQN score of 8.8 in the total sample, again reflecting low knowledge. 18 Receipt of PC education and training and exposure to PC in work settings were associated with higher knowledge in both studies.5,18
Studies of undergraduate nursing students’ PC knowledge had sample sizes ranging from 154 to 509 students.19-21 Mean PCQN scores ranged from 5.23 to 7.0 across studies, reflecting low knowledge in all samples. Although exposure to PC content inside or outside university settings was associated with higher knowledge, lack of exposure to PC content was common.
Studies of PC knowledge in nurses and nursing students consistently showed low knowledge, and findings collectively point to the important role of specialty education and training for improving knowledge. Given the importance of education, it is notable that student studies consistently reported nursing programs contained little or no PC content.
Nurses’ knowledge of HHC
Two studies provide evidence of nurses’ knowledge of HHC. Al-Hazmi and Al-Kurashi conducted a study of self-perceived HHC knowledge in 637 health care providers, including 339 nurses and 27 administrators from 8 private and 3 public hospitals. 22 The researchers designed 2 self-administered questionnaires, 1 for administrators and 1 for health care providers, to measure self-perceived knowledge in these groups. The authors found low levels of perceived HHC knowledge in all participants. 22 Of the 27 administrators, 13 reported low levels of HHC knowledge, and 7 reported no knowledge. When researchers questioned participants about sources of information, journals (65%), university education (50%), and work experience (50%) received the highest scores. Of the 339 nursing participants, 62.8% reported low levels of HHC knowledge, and 7.7% had no knowledge of HHC. Nurses identified university education (41.6%) and hospital work (68.3%) as their main sources of information about HHC.
Asiri et al. 23 surveyed 80 HHC professionals to assess knowledge, attitudes, and self-reported practices related to risk of falls in HHC. A total of 52 professionals, including 24 nurses employed by 23 HHC centers, responded to the survey. Nurses’ HHC knowledge was relatively evenly spread across low- (n = 6), moderate- (n = 10) and high- (n = 7) knowledge groups. 23 The authors also found nurses are more likely to assess and document patients’ risk of falls in the HHC setting than other health care professionals.
Al-Hazmi and Al-Kurashi’s study of hospital-based nurses reported low HHC knowledge, and in their study of HHC nurses, Asiri et al. reported 17 out of 24 nurses had moderate to high knowledge. These findings are consistent with the various sampling and measurement approaches used in these studies, with the former assessing HHC knowledge broadly in a non-specialty group and the latter assessing the specific area of fall prevention in a group of HHC specialists. The small number of studies on nurses’ knowledge of HHC and lack of any studies with students suggests nursing education underemphasizes this area.
Studies of the Nursing Workforce
Two studies provide information about the nursing workforce, which primarily comprises foreign nationals. Alrasheedi et al. 24 examined factors associated with nurses’ and nursing students’ intention to work in oncology in a sample of 444 participants from 5 major hospitals. The researchers assessed the relationship between PC knowledge, attitudes toward caring for dying patients, self-efficacy, and job satisfaction with intention to practice oncology nursing in the future. The sample comprised 3 nursing groups: undergraduates (n = 178), oncology graduate students (n = 33), and oncology nurses (n = 263); 96.6% of nurses were foreign-born. A more positive attitude toward caring for dying patients was the only variable that significantly predicted intention to practice in oncology across all groups. Given the significance of attitudes toward caring for dying patients, the authors concluded improving education and training on end-of-life care might expand the supply of nurses prepared to provide PC to cancer patients.
Abudari et al. explored the experience of non-Muslim nurses caring for terminally ill patients and their families. 17 Using qualitative methods, the researchers identified 3 main themes: family matters, end-of-life preferences, and nursing challenges. Families controlled end-of-life decisions while at the same time providing meticulous physical and spiritual care to family members. Family preparedness for end-of-life varied; families who accepted their family member was dying were most likely to accept end-of-life care, and the opposite was true for families who were in denial or held out hope for life. Most nurses accepted patients’ cultural and spiritual practices, but some expressed concern about the safety of using herbal mixtures and getting out of bed to engage in ritual prayer. Nurses also expressed concern about the lack of palliative team involvement resulting in unnecessarily aggressive care. 17 Major nursing challenges included difficulty communicating in Arabic and lack of understanding of patients’ cultural and spiritual needs. 17 These findings point to the importance of family in end-of-life care and the need to increase cultural and linguistic knowledge in the kingdom’s non-Saudi nursing workforce.
Although these studies were relevant to the PC nursing workforce, they focused on different populations and used different methods. Yet both studies included a sample of foreign-born nurses, reflecting the large proportion of non-Saudis in the workforce. The significance of nursing for patient outcomes and the complexity of practicing outside one’s home country in the context of a multinational nursing workforce suggest an urgent need for future research in this area.
Caregiver Studies
We found 2 studies on informal caregivers connected with PC or HHC services. Ghazwani et al. examined burden and distress in a sample of 78 caregivers of terminally ill PC patients admitted to a southern hospital over 1 year. 25 The participants’ mean age was 39.5 years, and 58.8% were men. Sons (50%) and daughters (30.8%) comprised the majority of caregivers. Almost all caregivers reported some burden, including 39% reporting moderate to severe burden. Older age and familial relationships other than parent-daughter were associated with higher burden. Daughters also reported lower levels of distress than other family caregivers. In the second study, researchers examined 240 caregivers’ level of satisfaction with HHC services received from a single hospital. 26 The median age of caregivers was 45 years. More than half of caregivers were men, and 51.4% were patients’ sons or daughters. Overall, caregiver satisfaction with HHC services was high. 26 Notably, 82% of caregivers reported patients received appropriate health care, and 83% felt HHC services improved their confidence in caring for patients. Most caregivers preferred caring for patients at home, believing home care was better for their own and patients’ well-being than inpatient care. 26 Factors associated with higher satisfaction were older age, being a woman, and receipt of frequent HHC visits.
Although the caregiver studies we found in this review focused on various care receiver populations, both found sons and daughters make up the majority of caregivers, with an average of age between 40 and 45. Although men comprised the majority of caregivers in both samples, daughters reported lower burden, and women reported higher satisfaction with HHC services, suggesting gender influences caregiver roles in Saudi families.
Utilization and Outcomes of Specialty Care
Palliative Care Service Use and Outcomes
Seven studies revealed patterns and outcomes of emergency room and hospital-based PC admissions, with sample sizes ranging from 103 to 887 patients. Several studies documented delayed referral to inpatient PC services whether admission came through the emergency room or other inpatient services.11,12,27,28 Direct admission to the PCU was less common (36%) than inpatient transfer (64%), further reflecting delayed use of PC services. 11 Mean and median survival time from the first PC referral in 1 study was 19 days, 28 and another showed 45% of physicians waited 1 day before patients died to refer. 27 Sadler et al. also reported underutilization of PC services, with only 22 of 103 patients coming through the emergency room having had any PC involvement in the year preceding death. 27 Despite this underutilization of PC, several studies documented the benefits of this service, including shorter length of hospital stay,12,29 superior opioid pain management, 30 slightly longer survival time, 28 and avoidance of unnecessary and aggressive treatment.12,27 Notwithstanding the benefits of PC services, 1 study showed most patients (85.7%) still die in the hospital 11 due the lack of available home-based PC options.11,27
In summary, PC is available primarily in inpatient settings, and these services are underutilized. PC referral often occurs near death, resulting in extended hospital stays, unnecessary treatment, and poorer pain management prior to referral.
HHC Service Use and Outcomes
Two studies revealed patterns of morbidity and mortality in HHC patients, including 1 focused on patterns of risk and mortality during the COVID-19 pandemic.31,32 Both studies showed most HHC patients are elderly and have chronic conditions. One study (N = 880) showed 89% of participants had 2 or more morbidities, with hypertension (59.1%), diabetes mellitus (57.3%), and stroke (34.9%) being the top 3. 32 In their study of health patterns and risk of mortality during COVID-19 (N = 101), Alqahtani et al. reported a high fatality rate among HHC elderly patients (26.7%). 31 Almost half of patients were admitted to the hospital, and half of admitted patients died in the inpatient setting. The authors attributed the high fatality among hospitalized HHC patients to their advanced age and morbidities.
In 3 studies, researchers compare the outcomes and costs of inpatient versus home management for various conditions. Mutwalli et al. evaluated the effect of a home-based cardiac rehabilitation (CR) program on post-coronary artery bypass graft patient outcomes. 33 The researchers randomly assigned the participants to a control group receiving standard hospital care (n = 21) or an intervention group (n = 28). The mean age of intervention and control participants was 56.75 and 54.4 years, respectively. The researchers found intervention participants had significantly higher QOL, psychological well-being, and physical functioning as well as fewer hospital readmissions than the controls. The authors concluded the home-based cardiac rehabilitation program produced better patient outcomes than standard hospital care.
In 2 studies, researchers examined outcomes and costs associated with home IV infusion programs, 1 for treatment of DVT 34 (n = 61) and the other for administration of antibiotics 35 (N = 152). Both studies relied on a short period of hospitalization followed by HHC with frequent nurse visits, and both documented favorable outcomes for home treatment as well as cost savings. The mean patient age in these studies ranged from 48.4 to 52.8 years. In the first study, mean nursing time for patients managed at home was 4.2 ± 2.3 days, compared to 16.4 ± 11.5 days for inpatients. 34 Other mean costs, such as hospital stay and doctor’s fees, were also significantly lower for outpatients ($1,000) than for inpatients ($2387). Similarly, in the second study, the cost of the home program was 644,627 Saudi Riyals (SAR), compared to a calculated inpatient cost of 1,368,750 SAR. 35 The authors of both studies concluded home treatment was safe and cost-effective and recommended expansion of such programs.
The 5 studies we reviewed in this section describe a breadth of HHC services. The first 2 studies described HHC patients who were primarily elderly with chronic morbidities, and the last 3 examined HHC for slightly younger patients receiving home treatment for conditions typically managed in the hospital. Given the diverse array of patients and services we described in this section, the absence of any mention of home-based PC is notable.
Patient Satisfaction and QOL
In 2 studies, researchers examined patients’ QOL. Aboshaiqah et al. examined the relationship between QOL and satisfaction with PC in a sample of 130 cancer patients. 36 The participants were mostly women (79%) between 17 and 86 years old, and more than half had breast cancer (53%). The researchers found that emotional functioning is closely associated with patient satisfaction. 36 Similarly, Al-Surimi et al. 14 examined factors associated with QOL in 253 patients receiving HHC through the National Guard ministry in Riyadh. Similar to Aboshaiqah’s study, 36 the majority of the participants were women (63%), over 60 years old (73.3%), with chronic diseases. Mean QOL scores were highest in the social relationship and environment domains and lowest in the physical domain. Being married, psychological problems, stroke, and number of illnesses were independently associated with overall QOL.
Although they studied different services and measured different variables, the researchers in both studies pointed to the importance of psychological function for patients’ QOL. Despite this finding, we found no studies focused specifically on psychological well-being in PC or HHC patients.
Discussion
This integrative literature review is the first to synthesize studies of PC and HHC in Saudi Arabia. Although we broadened our initial focus on home-based PC to PC and HHC generally, we found a dearth of literature. Studies on nursing practice including cultural aspects of care and studies of patient and caregiver perspectives were particularly absent.
Despite the limited number of studies available on PC and HHC in the kingdom, the available evidence allowed us to draw preliminary conclusions in 4 areas: (1) nursing knowledge of PC, (2) the role of family in caring for patients, (3) underutilization of PC, and (4) the safety and cost effectiveness of home treatments for conditions typically managed in the hospital.
Several studies have documented low nursing knowledge of PC among nurses 37 and nursing students, using the PCQN. These findings are consistent with those reported by the authors of studies conducted with nurses in Jordan 37 and Qatar 38 using the same knowledge measure. Few studies addressed nurses’ HHC knowledge, suggesting this area of nursing practice remains underdeveloped.
One study of nursing practice and 2 caregiver studies highlighted the importance of family in the care of chronically and terminally ill patients in all settings. Family caregivers in the home were usually sons or daughters, and HHC service visits were highly valued. One study documented caregiver burden in the moderate to severe range, suggesting this is a significant problem in need of further study. We also found HHC was associated with positive patient outcomes, including better QOL. This finding is consistent with those of a recent narrative review, which showed home-based PC has multiple benefits, including positive patient outcomes. 39
Another finding of this review was the underutilization of PC, resulting in increased length of hospital stay and unnecessarily aggressive care during end-of-life. Although families were devoted to dying members, many lacked the confidence and supports needed to care for loved ones in the home, resulting in most deaths occurring in the hospital. These findings are similar to those found in neighboring countries. Researchers investigating cancer deaths in Kuwait 40 and Qatar 41 found the vast majority of deaths occur in the hospital. Also notable, all studies on PC focus on end-of-life, indicating the scope of PC in Saudi Arabia is limited to this area. This finding is consistent with those from a study of clinicians in Bahrain who perceived PC as synonymous with end-of-life or hospice care. 42 Clinicians in this study also reported challenges initiating end-of-life discussions because family members typically oppose disclosure of terminal diagnoses to patients. 42 In Al-Awamer and Downar’s study of barriers to implementation of PC in the Middle East, they also identified unfamiliarity with the role and benefits of PC and cultural barriers as challenges. 43 Given the importance of understanding and addressing cultural aspects of end-of-life in PC, the cultural and linguistic barriers the large non-Muslim nursing workforce in Arabia faces may pose additional challenges. 17
The last finding of this review is the emergence of HHC as an alternative to inpatient treatment, specifically cardiac rehabilitation and IV therapies. All studies showed superior or similar treatment outcomes for home management relative to inpatient care, and 2 documented significant cost savings. This evidence points to the safety, feasibility, and cost effectiveness of home treatment for complex conditions primarily managed in Saudi hospitals. Because home treatments relied heavily on frequent nurse home visits,34,35 this work also points to the importance of nursing in moving care from the hospital to the home.
Limitations
This review drew on a limited number of studies, the majority of which were cross-sectional quantitative studies using convenience samples. Therefore, we were unable to make causal inferences related to variables of interest or understand changes that occur over time. Finally, although publishing in English-language journals is standard practice in the Saudi health sciences, it is possible that exclusion of non-English language articles reduced the number of articles included in the review.
Conclusion and Implications
The Saudi Arabian 2030 Vision emphasizes primary care, public health, PC, end-of-life care, and the management of chronic diseases. 44 To support these goals and establish access to home-based PC, Saudi Arabia needs a strong nursing workforce equipped to function as effective members of interdisciplinary teams.
We have several recommendations for education, policy, and research to support the development of PC and HHC nursing. First, the National Center for Academic Accreditation and Evaluation, charged with ensuring standardized and sufficient specialty content in nursing curricula across the kingdom, should examine competencies relevant to these areas to promote development of a nursing workforce prepared to lead change, expand services, and promote quality in these specialties. Stronger education and training of Saudi nurses may reduce reliance on foreign-born nurses while improving care quality. Second, professional accrediting agencies, such as the Central Board for Accreditation of Healthcare Institutions (CBAHI) and Joint Commission International (JCI), should emphasize standard practices in PC and HHC nursing by promoting continuous training and competence in the existing workforce.
Our review points to several areas for future research. First, patients’, families’, and caregivers’ perspectives and experiences are largely missing from the PC and HHC literature, yet these voices are critical to these specialties and the development of home-based PC. Second, the literature indicates a lack of attention to the nursing workforce in PC and HHC, a finding that is striking given the complexity of the Saudi health care system’s multinational workforce. Future research examining the impact of nursing on PC and HHC will highlight areas in need of improvement and opportunities for change. Finally, we found examinations of psychosocial outcomes in PC and HHC and no studies that addressed cultural aspects of care. Greater attention to the whole person is required to improve care. Use of rigorous RCTs, longitudinal design, and qualitative research can help address these gaps.
Footnotes
Author’s Note
Halah Almulla is now affiliated to Prince Sultan Military College of Health Sciences, Dhahran, Saudi Arabia.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
