Global Survey of the Roles, Satisfaction, and Barriers of Home Health Care Nurses on the Provision of Palliative Care.

Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity. Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision. Design: Needs assessment survey. Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries. Measurements: A needs assessment, developed through literature review and cognitive interviewing. Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning. Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.

T he role and importance of nurses caring for persons with cancer and other chronic diseases is gaining recognition. 1 Globally, nurses provide care in various settings, including hospitals, ambulatory clinics, long-term care, and homes. 2,3 Home health care requires distinct acknowledgment, as in some remote global areas, nurses may be the only health care professional able to access geographically disparate populations. Home health care nurses exhibit unique skills to address multiple health care needs with a special emphasis on palliative care (PC). 4 Delivering home health care nursing across the globe has challenged nurses to assume a range of roles and responsibilities. 5 Employing a culturally sensitive, patient-centered approach is the heart of nursing; clarifying contributions in improving quality of life (QOL) is essential. 6 Further education and deeper recognition of the nurse's critical function as leader of the home health care team aid in empowering nurses wherever they live and work. 7 Background Each year, 40 million people are in need of PC; 14% of people actually receive it. 8 In 2014, the World Health Assembly incorporated PC into its international agenda urging member states to build PC capacity as an ethical imperative ''with emphasis on primary health care, community, and home-based care.'' 8 A 2015 global survey assessing capacity for prevention and control of noncommunicable diseases (NCDs) included PC questions for the first time. 9 The survey indicated disparity between low-and high-income countries in lack of PC capacity, health care policy, essential palliative medication availability, and service provision. Only 36% of 177 participating countries had community PC available (i.e., ''offered to at least 50% of NCD patients in need''); only 4% of low-income countries. 10 Effective policy to affect systems change in PC delivery across all income groups is lacking.
The role of home health care nurses has existed formally since the 1850s. As health care delivery for NCDs shifts away from institutions back to the home, community nurses are well situated to meet growing demands of an aging population. 11 However, little is known about the global primary PC practice of community nurses. A small number of studies, conducted in high-income countries, where PC capacity is more developed, have explored the role of community nurses generally [12][13][14][15] or PC specifically. [16][17][18] The paucity of research on the community nurse role in the context of PC provision hinders global progress in the relief of suffering and improving QOL for patients/families. ''It is estimated that each death potentially affects the life of, on average, five people in terms of caregiving and grieving. By 2030, an estimated 74 million deaths will occur/year, increasing the number of people annually affected by death and dying to 370 million.'' 19 Policy initiatives to promote PC integration into community nursing and determine PC education needs deserve urgent attention.

Purpose
This needs assessment globally examined home health care nurses' duties, satisfaction, barriers, preferred learning methods, and country differences related to (1) PC development and capacity according to criteria identified by Lynch et al., 20 and (2) income level according to the World Health Organization (WHO) World Bank. 21 Results will inform development of future educational and training activities and identify overall and country-specific views and home health care provision recommendations.

Methods
We employed a convenience sample of home health care nurses. The Middle Eastern Cancer Consortium invited 946 BRANT ET AL.
health care professionals from 42 countries to lead and coordinate respective countries' survey efforts. As recognition of time and effort, coordinators who collected ‡15 completed surveys were included as authors. Each country coordinator disseminated surveys to targeted home health care nurses by Survey Monkey e-mail link or paper. Participation was voluntary; survey completion inferred consent. The Billings Clinic Institutional Review Board determined the study exempt as per U.S. regulations.

Instrument development
An extensive literature review examined research regarding home health care nursing duties, barriers, and satisfaction 11,14,15,[17][18][19][22][23][24][25] and previously developed PC and home care needs assessment instruments. 10,13,[25][26][27] Six investigators, consisting of PC and home health care nurses and students, reviewed results and developed a question bank. Cognitive interviews were conducted with a convenience sample of six U.S.-based home health care nurses to determine item relevance and clarity, offering editing suggestions. Country coordinators provided feedback to clarify medical terminology differences. For example, ''physiotherapy'' was added to physical therapy; ''field nurse'' better identified the target population. Coordinators translated surveys from English into Arabic, Spanish, Portuguese, Persian, Turkish, French, Greek, Russian, Chinese, and Japanese, and back translated to verify validity.
The final 74-item instrument takes 10-15 minutes to complete, consists of seven sections, and includes quantitative and open-ended questions addressing nurse demographics, patient population information, home health care duties, satisfaction with and barriers to provision of home health care delivery and PC, community resources available, barriers to educational opportunities, and desired learning methods (Appendix A1). Three sections include scales rated on a 0 to 3 Likert response: (1) Duties rated ''never'' to ''always'' (22 items), (2) Barriers rated ''not at all'' to ''severe'' (11 items), and (3) Satisfaction rated ''very dissatisfied'' to ''very satisfied'' (14 items).
A letter invited nurses to share perspectives on duties, conditions, work environment, and challenges faced in carrying out daily nursing functions. Surveys were distributed to 749 nurses globally from November 2017 through April 2018.

Data analysis
A descriptive analysis was conducted on nurse characteristics (age, sex, type of employment, country of current employment, highest degree, years of experience), patient care information (urban-rural classification, socioeconomic classes, patient age ranges, number of homecare visits per week), and interdisciplinary team factors (types of support staff, level of education of supporting staff, disciplines of collaboration). Participants not employed as a home health care nurse were excluded from the analysis.
Items on three survey scales (i.e., duties, barriers, satisfaction) were analyzed and reported with mean and standard deviations. Item-response theory was employed to identify subscales of the three areas (duties, satisfaction, and barriers) using Eigen-values. An exploratory factor analysis (EFA) tested associations between subscales and items; correlations >0. 35 were maintained in that domain. Finally, a standard-ized value was developed with finalized items, which were identified in EFA and input from clinical professionals. Five subscales were identified for duties (PC, education, therapies, safety and quality, and medical care); four for satisfaction (patient/family care, access to medications/supplies, provider communication, religious support), and seven for barriers (lack of PC services, infrastructure, patient/family communication, team communication, culture/religion, language, and time).
Palliative care delivery (PCD) level, 20 stratified countries into six levels: group 1 (no known hospice-PC activity), group 2 (capacity-building activity), group 3A (isolated PC provision), group 3B (generalized PC provision), group 4A (hospice-PC services with preliminary integration into mainstream service provision), and group 4B (hospice-PC services with advanced integration into mainstream service provision). Due to small respondent numbers in group 1 countries, groups 1 and 2 were combined. Additionally, countries were stratified by four WHO income levels (low, lowermiddle, upper-middle, and high) ( Table 1). 21 Survey subscales (i.e., duties, satisfaction, barriers) were compared using both PCD and WHO levels.
Data were entered into SPSS (Statistical Package for the Social Sciences 24.0) version 22 28 Analyses were performed using SAS version 9.4. 29 Chi-squared tests were performed on binomial/categorical variables for group comparisons. Analysis of variance was employed to test PCD and WHO group differences. Statistical significance was set at a = 0.05.

Demographics
Of 749 respondents, 532 were included in the final analysis representing 29 countries from 6 continents (81% response rate). The average respondent ( Table 2)  Regarding subscales, safety/quality was the most performed group of duties; patient/family education and shared decision making (M = 2.18 + 0.65) were second (Appendix Table A1).
When examining duties performed relative to PCD criteria, nurses in level 1 and 2 countries performed significantly more therapies and medication administration/medical care ( p < 0.0001). They also performed more patient/family education ( p = 0.6179) and safety/quality duties ( p = 0.4011), although differences were not significant. Level 3A performed the least amount of PC duties; this difference was significant compared with level 4A countries ( p = 0.0033).
The WHO World Income Bank criteria aligned with some categories of PCD criteria. Low-income countries performed significantly more PC, therapies (e.g., physical therapy [PT], occupational therapy [OT]), and medication administration/ medical care compared with other countries ( p < 0.0001) and significantly fewer safety/quality duties ( p = 0.0139). Nurses from high-income countries performed the least amount of therapies.
Satisfaction varied by PCD level. Nurses in levels 1 and 2 were significantly less satisfied in three of four categories: patient/family care ( p < 0.0001), provider communication ( p = 0.0008), and religious support ( p < 0.0001). Level 3A nurses were least satisfied with access to medications and supplies ( p < 0.0001). Level 4A nurses were most satisfied with patient/family care, Level 3B nurses most satisfied with access to medications/supplies and provider communication, and level 3A nurses most satisfied with religious support.
The WHO and PCD criteria aligned closely in satisfaction. The one difference was that low-income countries scored lowest in all categories, including access to medications/supplies ( p < 0.0001); nurses were most dissatisfied with patient/ family care (M = 1.05 + 0.61). When examining higher satisfaction, WHO and PCD criteria varied. High-income countries scored highest in patient/family care (M = 2.08 + 0.58), but low-middle income countries scored highest in access to medications/supplies (M = 2.09 + 0.69), provider communication (M = 2.44 + 0.58), and religious support (M = 2.37 + 0.81).       The WHO and PCD criteria aligned closely in terms of lack of PC services and infrastructure. When examining barriers by PCD criteria, nurses in level 3a expressed significantly more barriers with lack of PC services and infrastructure ( p < 0.0001). All groups experienced a lack of personnel and time; differences were not significant by PCD.

Barriers to accessing educational opportunities
Respondents identified primary barriers to accessing education: lack of time (n = 327) and funding (n = 323), concerns about staff relief coverage (n = 303), and lack of availability of appropriate educational opportunities. Respondents preferred local education or in-person meetings (76%) followed by technology-based media such as webinars and teleconferences (51%) and online and self-learning educational courses (40%).

Discussion
In recent decades, health and social care policies in developed and developing countries have consistently focused on two themes: shifting more care from hospitals to the community, and improving integration of PC services into the community in becoming an essential part of mainstream medical care. 13 Both the Lancet Oncology Commission and American Society of Clinical Oncology (ASCO) recommend early PC integration into oncology care incorporating primary health care providers, including nurses, across inpatient, outpatient, and community settings. 30 While the interdisciplinary team is a key component of the organizational model in hospitals to access PC services, community and home care outreach is critical. At the primary health care level, nurses and other clinicians need training to develop PC competence.
To date, we know little about whether we have the infrastructure and workforce necessary to make integrated community-based PC a reality. This study, the first global cross-sectional survey of nurses working in the community, has identified several gaps. It became evident that community nurses in developing countries were less satisfied with all criteria examined: care for the patient/family, patient communication, and provision of emotional/spiritual support. By contrast, community nurses in developed countries reported more satisfaction with patient care yet were less involved in direct care and prescribed drug handling. 13 Many frustrations emerged related to excessive caseloads, inadequate staffing levels, lack of policy and guidance, and insufficient funding and accessibility to end-of-life measures. Nevertheless, increasing entrants into community nursing is clearly needed. Health care policy needs to address issues raised in the survey that reflect misuse of community nursing services, to practice at full scope, and work more efficiently and effectively. The National Consensus Project for Quality Palliative Care Guidelines calls all frontline health professionals to improve PC for all people living with serious illness, regardless of diagnosis, prognosis, care setting, and age. Clinicians with PC skills and knowledge must be available in all care settings, including the home. Five key updates in the revised guidelines include: comprehensive PC assessment; family caregiver assessment, support, and education; care coordination during care transitions, culturally inclusive PC; and communication emphasis as a means for delivering quality PC. Home health care nurses are well positioned to deliver high-quality PC; education and training is needed. 31 The Coursera PC specialization, available online to nurses globally, is one educational strategy that can be used to improve PC knowledge. 32 Community nursing policies across developed countries have sought to provide a solution to these pressures, mainly by restructuring nurse roles in two distinct ways: (1) developing specialist roles, and (2) developing primary care roles. 33 The first approach includes expansion of nurse practice roles in Australia to encompass more clinical tasks from general practitioners, and introduction of advanced practitioner roles in England, Canada, USA, and Australia. The second fits with development of primary care roles of public health nurses, such as those in Ireland, Canada, and Scotland. 33 An important issue that refers more to community nurses in developing countries involves the lack of evidence-based nursing education necessary to perform complex tasks. 34 Globally, 20 million people need PC services; 80% live in low-and middle-resource countries, where health systems are challenged to provide care for rapidly growing populations with NCDs. Because nurses are the largest workforce in global health care, they are in a strategic position to influence the quality of PC delivery across the illness trajectory. 35 The very essence of nursing is focused on caring for the whole person and supporting the family through difficult situations. Today, nurses with varying levels of education and expertise provide PC to greater or lesser degrees. In most parts of the world, community nurses are not only the main health care professionals, but also the primary link between the patient/ family and other professionals both in the community and hospital. Moreover, community nurses are accountable for completing comprehensive-based interventions at home and evaluating the impact of care delivered. Providing symptom management, patient education, and emotional support for patient/family are key responsibilities. Most nurses in our survey from developing countries described their working conditions as poor and lacking appropriate time for each patient, due to understaffing, lack of resources, policy, guidance, and access to end-of-life services.
Despite the overall holistic approach in nursing care, PC is conceptualized as a specialty practice in several developed countries and requires additional specific knowledge and skill beyond that possessed by a general nurse. In most developing countries, nurses pursue informal, on the job, continuing education. Unfortunately, in the latter countries, PC remains a low priority and does not receive the needed financial support for PC nurse education. Additionally, nurses in both developed and developing countries are not comfortable with conversing with patients and families about death, dying, and end-of-life issues, which often leads to nurses' moral distress. 35 The lack of updated training and education contributes significantly to barriers community nurses face daily, as they are asked to perform tasks requiring updated clinical skills, including communication issues, advocacy, and community mobilization. Priority should be given to funding programs for specialist post-basic or in-service training together with exchange programs that offer experiences in other practice areas such as NCDs. 36 Because community nurses have more direct contact with patients/families, nurses practicing homebased PC improve patients' symptoms and sense of wellbeing, which has potential to prevent hospitalizations.
The present study explored the integration of community nurses in PC provision to patients at home. Community nurses worldwide acknowledge their responsibility to manage patients' home health needs by getting to know them as individuals and learning about their lives in the context of an ongoing relationship. They coordinate patient care in the community, respond to patient/family-identified needs, and help patients identify and prioritize goals. 37 Furthermore, primary home health care nurses acknowledge the dignity, culture, values, beliefs, and rights of individuals 38 ; thereby, nurses are an integral part of forthcoming changes in primary health care delivery. Community nurses can be considered providers, enabling patients/families to report higher levels of satisfaction than their urban counterparts for overall case, pain, and symptom management. 39

Limitations
Findings should be interpreted in lieu of these limitations. Data were collected using a convenience sample; probability sampling methods were not incorporated. Selection bias is another concern. Most nurses practiced in urban settings; those working in more remote areas were not surveyed. Some questions (specific countries) had missing data due to translation issues, resulting in nonrandom missing information. Other data points were misinterpreted; for example, a question asked about number of weekly visits. Some respondents reported >100 visits; this question was excluded from those respondents. WHO low-income countries and level 1 and 2 PCD countries were not well represented. To protect anonymity, researchers collapsed PCD levels 1 and 2, making interpretations more challenging. These limitations pose challenges in that findings may not be generalizable to other countries in income and PC levels or to other home health care providers within the countries sampled.

Summary
Community home health care nurses are on the frontline and provide comprehensive patient/family-centered care, contributing to patient comfort, fewer hospitalizations, and higher home death rates, which are often desired by patients and serve as a clinical outcome in the community. 40 The majority of patients who need home-based PC live in lowincome and middle-income settings. These services should be a major health priority in those countries. Home health care nurses should be well resourced and equipped to deliver 952 BRANT ET AL.
PC that is so desperately needed; educational opportunities can mobilize the nursing workforce to optimize home health care for PC provision and improve patient and country outcomes.