Measuring Palliative Care-Related Knowledge,Attitudes,and Confidence in Home Health Care Clinicians,Patients,and Caregivers: A Systematic Review

Abstract

Background:

Integrating palliative care services in the home health care (HHC) setting is an important strategy to provide care for seriously ill adults and improve symptom burden, quality of life, and caregiver burden. Routine palliative care in HHC is only possible if clinicians who provide this care are prepared and patients and caregivers are well equipped with the knowledge to receive this care. A key first step in integrating palliative care services within HHC is to measure preparedness of clinicians and readiness of patients and caregivers to receive it.

Objective:

The objective of this systematic review was to review existing literature related to the measurement of palliative care-related knowledge, attitudes, and confidence among HHC clinicians, patients, and caregivers.

Methods:

We searched PubMed, CINAHL, Web of Science, and Cochrane for relevant articles between 2000 and 2021. Articles were included in the final analysis if they (1) reported specifically on palliative care knowledge, attitudes, or confidence, (2) presented measurement tools, instruments, scales, or questionnaires, (3) were conducted in the HHC setting, (4) and included HHC clinicians, patients, or caregivers.

Results:

Seventeen articles were included. While knowledge, attitudes, and confidence have been studied in HHC clinicians, patients, and caregivers, results varied significantly across countries and health care systems. No study captured knowledge, attitudes, and confidence of the full HHC workforce; notably, home health aides were not included in the studies.

Conclusion:

Existing instruments did not comprehensively contain elements of the eight domains of palliative care outlined by the National Consensus Project (NCP) for Quality Palliative Care. A comprehensive psychometrically tested instrument to measure palliative care-related knowledge, attitudes, and confidence in the HHC setting is needed.

Introduction

Home health care (HHC) is a vitally important health care sector that provides care to seriously ill adults.¹ Delivered by interdisciplinary clinicians, HHC attends to the medical needs of individuals who may require skilled nursing care, among other types of care (e.g., physical therapy) for a variety of diagnoses.² Seriously ill adults can also receive HHC in a post-acute care phase or for multiple chronic conditions that require complex care in the home.² Approximately 3.5 million Medicare beneficiaries received HHC services in 2018 and the vast majority (85%) were older adults 65 years of age and older with multiple chronic conditions.² Given the high burden of symptoms and the level of clinical complexity of this population, about 19.1% of HHC patients die within 12 months after admission to a home health agency.²

Across health care settings, palliative care has been shown to have positive outcomes, including improved symptom burden and quality of life, and can reduce downstream health care utilization.^3–5 In the post-acute care environment, palliative care in HHC is increasing in importance, especially for those who wish to avoid institutional care in a nursing home or rehospitalization.^1,6–11 Specialized home-based palliative care programs and related interventions have been shown to result in high satisfaction among patients and caregivers, increase the likelihood of dying at home, reduce symptom burden, and serve as a critical transition point in the serious illness trajectory.^6–11

However, home-based palliative care is not widely integrated into existing HHC delivery and practice within the United States.¹ Often, generalist palliative care is delivered by HHC clinicians for pain and symptom management, serious illness communication, and management of end-of-life care needs. As a result, palliative care delivered within the framework of care in home health agencies can vary considerably across the United States and around the world. The delivery of generalist or specialist palliative care within existing HHC also varies considerably across agencies. In the international context, palliative care delivery is often interchangeable with hospice care, and home care differs greatly across countries and may be very limited in less resourced countries.⁴⁰

In light of limited evidence generation on this topic, the rising prevalence of multiple chronic conditions, and an aging populous in need of increasingly complex care, optimizing delivery of HHC through the routine integration of palliative care has promising potential to reduce utilization of acute care services and improve outcomes like symptom burden and quality of life and reduce caregiver burden.^1,4 Furthermore, palliative care in HHC has the potential to improve advance care planning, which is critical at the end of life to optimize communication about serious illness and prioritize the wishes and preferences of patients and families.³

Prior research has shown that there are relatively few HHC clinicians who are trained in providing palliative care in the United States.¹ The HHC clinician workforce can include physicians, nurses, nurse practitioners, social workers, care managers, home health aides (or equivalently titled individuals), physical therapists, and occupational therapists. While the need for routine palliative care in HHC is evident, there is lack of clarity surrounding the level of preparedness and educational needs of HHC clinicians when providing this care. Understanding the current knowledge and confidence of the HHC workforce to provide palliative care is important to inform efforts to enhance implementation. In addition, attitudes about palliative care, which can ultimately impact HHC clinicians' willingness to provide palliative care services, is an important assessment area.

It is also essential to understand patients' and caregivers' willingness to accept palliative care services in the HHC setting. Despite the documented benefits of palliative care in HHC, a widely integrated system across agencies is largely lacking and faces many challenges.¹ For example, while those who receive palliative care in the home have often reported high levels of satisfaction and receive greater support for managing their serious illness,^1,10 it is unclear if patients and caregivers have the necessary palliative care-related knowledge to effectively utilize and understand the services. Misconceptions and perceptions about the goals of palliative care and apprehension about potentially losing comprehensive medical treatment after accepting palliative care are common among patients and caregivers.^1,7 Better understanding of the knowledge, attitudes, and confidence of seriously ill HHC patients and caregivers toward palliative care through measurement can provide necessary information for program development in this setting.

The objective of this systematic review was to examine the extant literature surrounding the measurement of palliative care-related knowledge, attitudes, and confidence within the context of HHC delivery. Further examination of how well existing measures capture concepts within the eight major domains of palliative care as developed by the National Consensus Project (NCP) for Quality Palliative Care was also completed.^12,13 The NCP guidelines, established in 2018, were based on existing evidence and outlined domains of palliative care that are required to provide high-quality care for serious illness.

The goal of the NCP was to improve access to quality palliative care for seriously ill individuals across health care settings and to provide specific guidance for health care organizations and clinicians to integrate palliative care best practices.¹³ The eight domains of palliative care include the following: (1) structure and processes of care, (2) physical, (3) psychological or psychiatric, (4) social, (5) spiritual, religious, or existential, (6) cultural, (7) end of life, and (8) ethical or legal aspects of care.¹³ Highlighting gaps in this evidence base is critical to inform future work related to palliative care integration in HHC. We used the eight domains to identify specific measurement gaps in the context of HHC.

Materials and Methods

Search strategy

We searched PubMed, CINAHL, Web of Science, and Cochrane Database for Systematic Reviews for articles between 2000 and 2021, which reported studies measuring palliative care-related knowledge, attitudes, and confidence in HHC. Key search terms and Boolean logic used in our database searching are provided in Table 1. Initial searches were completed by two members of the study team (K.P.M. and D.B.). After identifying searches that yielded the most relevant articles, the optimal search strategy was agreed upon by all investigators. Two specified searches in PubMed, CINAHL, Web of Science, and Cochrane Database for Systematic Reviews were conducted using the same search terms and Boolean logic independently by two investigators. Figure 1 displays the PRISMA diagram of our search strategy and initial article yields from each search. A PRISMA diagram is useful for illustrating the search process and data extraction process for the systematic review. After duplicates were removed using the EndNote V.20 reference manager, all abstracts were screened by at least two team members independently for eligibility.

FIG. 1.

PRISMA diagram.

Table 1.

Search Strategy

Database search	Search terms
Initial PubMed searches	Palliative care, knowledge AND/OR attitudes, health care worker (HCW), adults Palliative care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults Palliative care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden AND/OR stress Symptom management, knowledge AND/OR attitudes, health care worker (HCW), adults Symptom management, knowledge AND/OR attitudes, patient AND/OR caregiver, adults Symptom management, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden AND/OR stress Palliative care, knowledge AND/OR attitudes, measurement OR instrument OR questionnaire, adults End-of-life care, knowledge AND/OR attitudes, health care worker (HCW), adults End-of-life care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults End-of-life care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden OR stress End-of-life care, knowledge AND/OR attitudes, measurement OR instrument OR questionnaire, adults
PubMed searches 1 and 2 CINAHL searches 1 and 2 Web of Science 1 and 2 Cochrane database searches 1 and 2	((((“palliative care”) AND (((knowledge) OR (attitudes)) OR (confidence))) AND (((measurement) OR (instrument)) OR (questionnaire))) AND (adults)) AND ((((“home care”) OR (“home health”)) OR (“home healthcare”)) OR (“home health care agencies”)) Filters: English, from 2000–2021 Sort by: Most Recent ((((“end of life care”) AND (((knowledge) OR (attitudes)) OR (confidence))) AND (((measurement) OR (instrument)) OR (questionnaire))) AND (adults)) AND ((((“home care”) OR (“home health”)) OR (“home healthcare”)) OR (“home health care agencies”)) Filters: English, from 2000–2021

Database search

Search terms

Initial PubMed searches

Palliative care, knowledge AND/OR attitudes, health care worker (HCW), adults
Palliative care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults
Palliative care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden AND/OR stress
Symptom management, knowledge AND/OR attitudes, health care worker (HCW), adults
Symptom management, knowledge AND/OR attitudes, patient AND/OR caregiver, adults
Symptom management, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden AND/OR stress
Palliative care, knowledge AND/OR attitudes, measurement OR instrument OR questionnaire, adults
End-of-life care, knowledge AND/OR attitudes, health care worker (HCW), adults
End-of-life care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults
End-of-life care, knowledge AND/OR attitudes, patient AND/OR caregiver, adults, caregiver burden OR stress
End-of-life care, knowledge AND/OR attitudes, measurement OR instrument OR questionnaire, adults

PubMed searches 1 and 2
CINAHL searches 1 and 2
Web of Science 1 and 2
Cochrane database searches 1 and 2

((((“palliative care”) AND (((knowledge) OR (attitudes)) OR (confidence))) AND (((measurement) OR (instrument)) OR (questionnaire))) AND (adults)) AND ((((“home care”) OR (“home health”)) OR (“home healthcare”)) OR (“home health care agencies”)) Filters: English, from 2000–2021 Sort by: Most Recent
((((“end of life care”) AND (((knowledge) OR (attitudes)) OR (confidence))) AND (((measurement) OR (instrument)) OR (questionnaire))) AND (adults)) AND ((((“home care”) OR (“home health”)) OR (“home healthcare”)) OR (“home health care agencies”)) Filters: English, from 2000–2021

Study eligibility

Using the inclusion and exclusion criteria (Table 2), articles were selected if they: (1) reported specifically on palliative care-related knowledge, attitudes, or confidence, (2) presented measurements, instruments, or questionnaires, (3) were conducted in the context of the HHC setting, and (4) included HHC clinicians, patients, or caregivers. We excluded articles that did not meet our study objectives, provided a focus on palliative care in general, did not measure knowledge, attitudes, or confidence, and did not have sufficient focus on HHC clinicians, patients, or caregivers.

Table 2.

Inclusion and Exclusion Criteria

Inclusion	Focus on palliative care Articles that included a focus on knowledge, attitudes, or confidence related to palliative care, and measurements, instruments, or questionnaires related to palliative care Focus on the home health care population and setting Focus on health care workers and/or patient/caregivers in home health care Full text
Exclusion	No sufficient discussion of palliative care, knowledge, attitudes, or confidence in home health care Other palliative care-focused articles that did not report on measurement tools, scales, instruments, or questionnaires Abstracts

Selection of articles

After screening abstracts, 41 articles were selected for full-text review by two different investigators independently (K.P.M., D.B., A.M.C., J.A.K., M.V.M., and J.S.). After inclusion and exclusion criteria were applied, 17 articles were included for final review. Two investigators completed quality appraisal of each article (D.B., J.A.K., K.P.M., M.V.M., and J.S.). The contents of final articles provided substantive discourse related to palliative care-related knowledge, attitudes, and confidence in HHC, many of which included scales or questionnaire items that shed light on the current state of measurement science related to this topic. The selection of articles was agreed upon by all investigators.

Quality appraisal

Quality appraisal for each article was completed by two investigators independently (K.P.M., D.B., J.A.K., M.V.M., and J.S.) using the Crowe Critical Appraisal Tool (CCAT) Form (v.1.4).^14–16 The CCAT is designed to assist researchers with critical appraisal of research evidence generated from a variety of methodological designs. It has been tested for content validity and reliability.^14–16 The main content areas that are appraised within each article include the introduction, background, and objective (0–5 points); research design (0–5 points); sampling (0–5 points); data collection (0–5 points); ethical matters (e.g., informed consent or internal review board approval); results (0–5 points); and discussion (0–5 points). Each research article was assigned a score from 0 to 40, with higher scores indicating higher quality. Discrepancies in the scoring were discussed and disagreements were settled accordingly.

Data extraction

Data were extracted from each article, including study objective, design, sample, and instruments used, which are presented in Table 3. The main measures, results, strengths, limitations, associated NCP domains, and CCAT quality appraisal scores are provided in Table 4. Data extraction for each article was conducted by two team members independently (K.P.M., D.B., A.M.C., J.A.K., L.K., M.V.M., and J.S.) and consolidated (K.P.M.).

Table 3.

Study Characteristics

First author (year)	Objective	Design	Sample	Main instruments
Akiyama (2012)	To examine the knowledge about opioids, beliefs about palliative care, and concerns about home care in advanced care patients	Cross-sectional study	A total of 925 outpatients with metastatic or recurrent cancer in four regions of Japan.	Primary outcomes: 5-point Likert scale was used to measure (1) knowledge about opioids (two items); (2) beliefs about palliative care (three items); and (3) concerns about home care (five items). Secondary outcomes: sense of security (five items—7-point Likert scale); pain intensity (Japanese adaptation of the Brief Pain Inventory); and patient-perceived quality of palliative care (Care Evaluation Scale, eight subscales with a 6-point Likert scale).
Allo (2016)	To describe the experiences and satisfaction of health care professionals who have participated in PHV	Cross-sectional study	A total of 543 participants (MDs, nurses, social workers, and administrators) from Houston area hospice organizations. The target population included hospice and palliative care clinicians and trainees.	The global evaluation of PHV by participants for 2005–2010 contains eight items with a 6-point Likert scale. The questionnaire for 2011–2013 contains seven items with a 6-point Likert scale, which was modified to gain the perceptions of participants regarding in-depth educational goals for PHV.
Beccaro (2013)	To examine Italian GPs' knowledge, opinions, and activities of palliative care during in-home care for patients at the end of life	Cross-sectional study	A total of 1489 interviews were included from a random sample of GPs in Italy who were able to provide information about in-home palliative care.	Multidisciplinary teams and experts in palliative care of the Italian Society of Palliative Care (SICP) and the Italian Society of General Practice (SIMG) developed the questionnaire. The questionnaire included the following items: knowledge (six items), opinions (seven items), and activities (three items).
Becker (2007)	To assess GPs and nurses' self-reported competency and education needs in palliative care	Cross-sectional study	All 897 registered GPs and all 933 registered home care nurses in Province of Styria, Austria, were recruited. A total of 546 (GPs 228 and nurses 318) responded to the questionnaire.	The questionnaires were developed by literature reviews and previous studies. It was pretested with GPs and nurses for face and content validity. 4-Point Likert scale was used.
Devlin (2010)	To explore and understand the role of home care workers in palliative and end-of-life care	Phase 1: cross-sectional survey with postal questionnaire to home care workers Phase 2: focus group with a purposive sample of community palliative care nurses	Phase 1: a total of 69 (out of 236) home care workers who were employed and had at least one year of experience in palliative and end-of-life care in the community in 2 areas in a region in United Kingdom were included. Phase 2: purposively sampled six community palliative care nurses.	Investigator-initiated questionnaire.
Henoch (2014)	The objectives of this study were to compare FATCOD³⁴ scores among Swedish nurses and nursing students with those from other languages	Cross-sectional study	A total of 113 RN and EN recruited from 3 hospices, 1 oncology clinic, 1 surgical clinic, and 1 PHT A total of 100 nursing students at the end of their schooling were recruited from 2 universities.	The FATCOD³⁴ is a 30-item questionnaire where two-thirds of questions were about attitudes toward caring for a dying person, and the remaining about nurses' attitudes toward the dying patient's family.
Hirooka (2014)	The objective was to explore confidence in the ability to provide palliative care and associated difficulties	Cross-sectional study	409 Hospital doctors, 235 GPs, 2160 hospital nurses, and 115 HVNs completed questionnaires (total n = 2919) from across a variety of regions in Japan with varying palliative care systems in place.	Developed a confidence scale based on literature review and discussions among the authors. Scale of confidence in palliative care contains five items, 5-point Likert scale. Cronbach's alpha coefficient for internal consistency was 0.84. PCDS: originally includes 15 items on a 5-point Likert scale in five domains (the intraclass correlation was 0.61–0.69 for each domain), and validity and reliability have been established for Japanese hospital nurses. Based on this scale, authors modified and chose five items to examine difficulties in palliative care.
Luker (2015)	To design and evaluate an intervention to address carers' needs for practical information and support skills when caring for a person with cancer at end of life	Phase 1: qualitative structured interview to develop intervention Phase 2: evaluated the intervention from the frame of reference of carers and DNs	A total of 29 carers, 11 currently and 18 bereaved, created by convenience sampling of carers from hospices and one community district in United Kingdom.	In Phase 2, four measures were used. Caregiver burden and satisfaction were assessed using the following questionnaires: The Family Appraisal of Caregiving Questionnaire³⁶: positive caregiving subset of seven items and caregiver strain subset of eight items; Caregiver Competence Scale,³⁷ a 4-point Likert scale; Preparedness for the demands and tasks of caring, eight items.
Magee (2016)	To examine the confidence of out-of-hour GPs in symptom control and end of life prescribing and identifies their educational needs and preferences to inform recommendations for future education	Cross-sectional study	Postal survey sent to 1005 GPs working for an independent provider of out-of-hour services across United Kingdom. 203 (20.3%) GPs completed the survey questionnaire.	Literature review and a pilot using a confidence sample of 12 GPs were used to formulate a questionnaire that would examine views of GPs toward palliative care. Questions covered GPs' confidence in palliative care competences, including symptom control, prescribing and communication skills, their educational needs, and preferred educational methods.
Mahiro (2014)	To determine the relationship between work engagement and attitudes toward caring for dying patients and their families among HVNs in Japan	Cross-sectional study	304 Returned survey (88.6% response rate).	FATCOD B-J,³⁴ a 30-item scale each from 1 (strongly disagree) to 5 (strongly agree), ranging from 30 to 150 (higher the score, more positive attitudes), Cronbach's alpha 0.85.
Mercadante (2017)	To assess the attitudes of physicians in Italy regarding palliative sedation at home	Cross-sectional study	150 Physicians who were involved in end-of-life care decisions at home in Italy.	Self-developed instrument to measure multidimensions of palliative sedation, including frequency, type of sedation, decision making, scales, and indication (symptoms) for sedation, professional starting sedation, medication availability, medications used for sedation, and communication.
Miyashita (2008)	To assess the impact of an educational intervention on public perception of end-of-life home care and life-prolonging treatment and general knowledge about palliative care	Preintervention and post-intervention evaluation	595 Participants from Japan in the public.	Single-item feasibility of home death question (author generated); 9-item barriers to home care at the end-of-life setting (author generated); 5-item preference for life-prolonging treatment (author generated); 16-item attitudes toward end-of-life care (author generated; used in prior study).
Sandsdalen (2016)	To investigate patients' perceptions of palliative care quality	Cross-sectional study	191 Participants, including patients in hospice inpatient care, hospice day care, palliative care units in nursing homes, and home care in Norway.	QPP-PC: 52 items comprised 4 dimensions and 12 factors. Dimensions: MT, PT, ID, and SC; and 3 single items (S).
Sato (2014)	To investigate palliative care-related knowledge, difficulty, and practice issues in region-wide sample of nurses providing care to cancer patients in a variety of health care settings across Japan	Cross-sectional study	2378 Nurses from 26 institutions and 4 regions were included in the analysis (79% response rate), including 1345 in designated cancer centers, 856 in community hospitals, and 177 in home care nurses (DNs).	Self-developed knowledge scale: 20 items, 5 domains, philosophy (2 items), pain (6), dyspnea (4), psychiatric problem (4), gastrointestinal problems (4), responses include right, wrong, or unsure. PCDS³⁵: 15 items, 5 domains, alleviating symptoms (3), expert support (3), communication with multidisciplinary teams (3), communication with patient/family (3), community coordination (3), Likert scale from 1 (never) to 5 (very much).
Shah (2020)	To study the perceptions, knowledge, and attitudes about palliative care in caregivers	Cross-sectional study	250 Caregivers of patients in Karachi, Pakistan, in inpatient and outpatient areas, as well as home-based palliative care services were included.	Investigator-developed questionnaire. Developed in English and translated to Urdu. Knowledge items: goals of palliative care, focus of palliative care, composition of care team, setting of palliative care, knowledge about hospice, perceptions about providers of palliative care, perceptions about needs of patients suffering from a terminal illness, perceptions about whether palliative care should be offered to people diagnosed with a terminal illness, perceptions about the best setting to provide PC and perceptions about the best source for obtaining knowledge about PC. Attitudes items: person receiving palliative care should be allowed to carry out normal routine activities, person receiving palliative care should be allowed to fulfill all his/her wishes, and person suffering from cancer should be given diagnosis or disease progress information if they want to know.
Shimizu (2016)	To develop and validate scales to evaluate home care nurses' attitude, self-reported practices, difficulties, and knowledge on home palliative cancer care; identify factors associated with home care nurses' attitude, self-reported practice, and difficulties	Cross-sectional study	122 Experienced home care nurses from visiting nurse stations who enrolled in a home palliative care educational program in Japan.	Knowledge: 31 items, 6 domains, philosophy, pain and opioids, dyspnea, psychiatric problems, gastrointestinal problems, dying care. Attitudes: 12 items, 4 domains, confidence in staff support, confidence in communication with physicians, willingness to provide home palliative cancer care, and confidence in home palliative cancer care, from 1 (don't agree) to 5 (totally agree). Practice: 26 items, 6 domains, family care, coordination with care manager/care person, patient- and family-centered care, pain management, respect for the patient's/family's preferences for place of care, and coordination with family/hospital physicians, from 1 (never do) to 5 (always do). Difficulty: 18 items, 5 domains, dying care and family care, communication with the patient and family, symptom palliation, regional cooperation, and communication with medical practitioners, from 1 (don't agree) to 5 (totally agree).
Vejlgaard (2005)	To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish County hospital and related primary care services	Cross-sectional study	347 Participants (76% response rate, 174 nurses and 173 physicians), including nurses, doctors in hospitals, and home care nurses and GP in primary care services between October and November 2001.	Attitudes: Self-developed 8-item instrument. Instruments were developed based on literature review and interviews with professionals. Psychometrics are not reported. Definitely agree, probably agree, probably disagree, definitely disagree, undecided (responses with undecided excluded from analysis).

DN, district nurse; EN, enrolled nurse; FATCOD, Frommelt Attitude Toward Care of the Dying; FATCOD B-J, Frommelt Attitudes Toward Care of the Dying Scale Form B, Japanese version; GP, general practitioner; HVN, home visiting nurse; ID, identity-orientation approach; MT, medical-technical competence; PCDS, Palliative Care Difficulty Scale; PHT, palliative home care team; PHV, patient home visit; PT, physical-technical conditions; QPP-PC, Quality from the Patients' Perspective instrument-palliative care; RN, registered nurse; S, single item; SC, sociocultural atmosphere.

Table 4.

Summary of Study Findings

First author (year)	Measures/outcomes	Results	Limitations and strengths	NCP ^a domains	CCAT ¹⁵ score
Akiyama (2012)	Primary outcomes: knowledge about opioids, beliefs about palliative care, and concerns about home care Secondary outcomes: sense of security about cancer care, pain intensity, and patient-perceived quality of palliative care Factors related to each variable and associations between variables were also measured	28% of patients believed opioids are addictive and/or shorten life 52% believed palliative care is only for terminally ill patients 75% agreed or strongly agreed that home care puts a heavy burden on their family and about 60% agreed that home-visit services cannot respond to sudden changes in a patient's condition Higher sense of security levels was associated with an older age, male, lower pain, and higher patient-reported quality of palliative care The patient-reported quality of palliative care was associated with positive beliefs about palliative care and lower levels of concerns about home care	Limitations: Low response rate (57%) could lead to a potential selection bias Only focused on advanced cancer patients in outpatient settings No information about validation and reliability of the instrument Strength: Obtained larger number of patients and regional representative sampling	2 and 4	37
Allo (2016)	Usefulness of PHV as an educational tool to teach hospice and palliative care principles in the community setting Differences between physicians and other health care professionals, and nurses and social workers were examined	During 2005–2010, 98% of clinicians agreed that the PHV format was an effective teaching tool 93% of clinicians agreed that PHV would help them better manage patients The three most common themes addressed during the PHV included pain (91%), cognitive impairment and delirium (88%), and psychosocial distress (87%) During 2011–2013, 95% agreed that PHV increased understanding and sharing of best practices in palliative care within a patient care setting and 87% agreed that the overall quality of the program met their expectations There were no significant differences among the professionals	Limitations: Unclear how the results would be used to tailor the education program Strength: High response rate (90%), with large sample size	1, 2, and 3	37
Beccaro (2013)	GP knowledge of palliative care GP opinions of their duties for in-home care for end-of-life patients and on the role of the palliative care physicians GP daily practices during in-home care for patients at the end of life	Knowledge: only 25% of GPs chose the correct answer for definition of palliative care. Around 40% chose the correct objective of palliative care Opinions: 95% responded that the duty of GP is to be available during working hours, and 92% chose duties include break bad news to the patient and families 63% think the presence of palliative care physician is beneficial for providing specialized advice to GPs on request Activities: 94% said that they are available on working days	Limitations: Questionnaire was developed with everyday practice theories, not formal statement of palliative care No information of validation of the instrument Some questions are only focusing on patients at the end of life Strengths: Large sample size from a randomized sample Measured, knowledge, opinions, and activities about palliative care in home care	1 and 2	33
Becker (2007)	Competence and education and training needs related to (1) pain control and symptom management; (2) communication and addressing psychosocial needs of patients and their families; and (3) in coping with work-related distress	61.8% unprepared for palliative care by their professional education The overall competency was rated higher with increased age, longer professional life, and number of training sessions attended in the last two years (p < 0.01) The overall score of education needs showed that need was significantly lower with older participants with a longer professional life (p < 0.01) GPs rated the competency significantly higher than nurses and nursing assistants All groups rated high educational needs of symptom control, psychosocial management, and coping distress	Limitation: Low response rate (30%) Strengths: Large sample size Detailed comparisons of three different occupational groups	1, 2, and 3	33
Devlin (2010)	Factors related to home-care workers' feelings about their role in palliative and end-of-life care Levels of training, support, and supervision	Personal care (21%) and talking to and listening to clients/families (19%) were the main tasks undertaken by home-care workers in palliative and end-of-life care The majority felt they have clear roles, but 43.5% felt sometimes they carry out additional duties such as shopping, posting letters, or looking after pets Most workers felt insufficient time and 45% had to travel too far 75.4% felt that providing palliative and end-of-life care is important part of their role even though more stressful 73.9% did not have a qualification About two third of respondents had not received any training and half of the respondents expressed the need for additional training 75.4% said they did not feel more supervision 46.4% felt increase support would be beneficial	Limitation: Small sample size with low response rate (29%) Strength: In-depth exploration of home-care workers with both quantitative and qualitative data	1	36
Henoch (2014)	Differences in mean FATCOD between different types of nurses and nursing students among groups from Sweden, United States, Israel, and Japan Reliability of FATCOD scale and whether subscales exist within it Differences between nurses and nursing students	Significant differences between the RNs and the ENs working at hospice compared with the surgical ward (mean, 131.5 vs. 123.4; p < 0.001) and the oncology ward (mean, 126.4; p = 0.028), but not to PHT Swedish scored significantly higher compared to Japanese counterparts, but similar to U.S. counterparts Professional experience (i.e., number of years of work experience, place of work, and, for the nursing students, experiences of meeting a dying person) was found to be a significant predictor of attitudes Reliability: Cronbach's alpha for the total FATCOD scale was 0.506, but with increases to 0.7 of selective removal of specific aspects of FATCOD that deal with general character rather than specific attitude toward death	Limitations: Small sample sizes Strengths: Multistep translation and verification to ensure FATCOD was appropriate in Swedish Selection of a variety of different types of nurses in different stages of career	1 and 2	37
Hirooka (2014)	Confidence in palliative care Palliative care difficulties Also, examined correlations between these variables	Confidence Scale had average score of 12 for MDs, 10 for RNs Among hospital nurses, only 2% reported confidence in “having adequate knowledge and skills regarding psychotropic medicine and psychotherapy” and 5% in each of “having adequate knowledge and skills regarding cancer pain management,” “having adequate knowledge and skills regarding symptom management except cancer pain,” and “being able to roughly evaluate anxiety and depression in cancer patients” For HVNs, confidence in “having adequate knowledge and skills regarding psychotropic medication and psychotherapy” was 7% and in “having adequate knowledge and skills regarding cancer pain management” was 8% Hospital nurses and HVNs reported difficulties in “psychological support for cancer patients” (hospital nurses 88.1%, HVNs 79.8%) and “alleviation of symptoms related to cancer” (hospital nurses 85.1%, HVNs 87.6%)	Limitations: Low response rate Use of an unvalidated confidence scale Only focused on cancer patients The confidence scale was examined with factor analysis and had a reliability score, but the difficulty scale was modified without testing these Strength: Multiple institutions, many facilities, included subjects from metro and rural hospitals, across different regions with varying palliative care systems in place	1	38
Luker (2015)	In phase 2, the primary outcomes were increased carer satisfaction, preparedness, and competency with caring and decreased report of carer burden Secondary outcomes were reductions in carer anxiety and depression and improved symptom control (carers' perception)	Phase 1 showed that preferred format was a booklet In Phase 2, evaluating the booklet, carers were positive about the booklet; however, many carers would have liked the booklet earlier Carers reported feeling more positive about caregiving, and more reassured and competent in their role DNs found the booklet useful and reported receiving fewer phone calls from study carers than others in similar situations	Limitations: Small samples size mostly to assess feasibility, so not powered enough to assess significance Focused mostly on provision of physical care Difficulty in recruiting patients and maintaining throughout course of the study Strength: Measured caregiver needs in community setting (not directly recruited from hospice)	1, 2, and 3	37
Magee (2016)	Confidence in palliative care competences, including symptom control, prescribing and communication skills, their educational needs, and preferred educational methods	Confidence in assessing palliative care emergencies (42.8%, n = 87: “not so confident” or “not at all confident”), managing symptoms in noncancer patients (39.4%, n = 80), and prescribing a new syringe driver (39.0%, n = 79) was lowest Lower confidence was associated with infrequent exposure to palliative patients (p < 0.05) and lack of training in palliative care (p < 0.05); 12.8% (n = 26) had never received formal training Educational preferences were closely associated with confidence (p < 0.0005); the topics above were most requested E-learning was the preferred method (67.5%, n = 137). Around 82.1% (n = 165) believed training focused on out-of-hour work would be beneficial	Limitations: Mail survey in a digital age and overall lower response rate. Unvalidated instrument Strength: Data collected from large sample across geographic areas of practice in England	1 and 2	36
Mahiro (2014)	Attitude toward caring for dying patients Work engagement, experiences related to end-of-life care attitudes Attitudes about death	The mean FATCOD B-J score was 118.9 (SD = 9.95) Multivariate regression shows that work engagement and attendance at end-of-life care seminars (only 6–10 times, >20 times) are associated with positive attitudes, while death avoidance is associated with negative attitudes	Limitations: Convenience sample limits its generalizability Only two groups of attendance of end-of-life care seminars are associated with positive attitudes and they are not in the hierarchical order. This may raise questions regarding the cutoffs used in this variable Strength: Newly examined association between work engagement and attitudes toward end-of-life care	1	33
Mercadante (2017)	Physicians' attitudes toward palliative sedation	Majority (78%) of physicians performed PS when necessary and possible, 15.3% did not perform PS, and 6.7% would like to do that, but preferred to refer patients to the hospitals Main reasons for not performing PS include complex management at home and lack of organizations Most, 78%, believed palliative sedation at home is licit and feasible, 20% believe it is clinically difficult, and few, 1.3%, would avoid for defensive medicine PS was often used for relieving refractory symptoms and psychological distress Palliative sedation was often initiated by physicians and decisions were usually made jointly by home care team, patient, and family	Limitation: Convenience sample Strength: Relatively high response rate	2	33
Miyashita (2008)	Perception of end-of-life home care and life-prolonging treatment; and general knowledge about palliative care	595 Participants answered both preintervention and post-intervention questionnaires. Post-intervention, more participants thought it was feasible to have a home death Preference for life-prolonging treatment and attitudes toward end-of-life care, including symptom management at home, misconceptions about opioids, artificial hydration, and communication issues between patient and medical practitioners, were significantly improved after the intervention Factors that were significantly associated with changing perceptions about the feasibility of a home death were male gender, change in beliefs regarding burden to family caregivers, anxiety regarding admission to the hospital with worsening physical condition and fear that pain would not be relieved at home	Limitation: Sample for home care was only 38 and the participants were not specifically enrolled in a home palliative care program Strength: The article describes both within setting differences between patient-reported importance and perception of actual as well as across setting differences	7	36
Sandsdalen (2016)	Patients' perceptions of palliative care quality	Patient perceptions of the care received had high scores for honesty and atmosphere Patients' perceptions of importance scored high for “medical care” (S), “honesty” (ID), “respect and empathy” (ID), and “atmosphere” (S) in all settings Patients' perceptions of care across settings differed. The highest scores were seen in inpatient hospice care	Limitation: Small sample size Strengths: The article describes both within setting differences between patient-reported importance and perception of actual as well as across setting differences Response rate of 73%	2 and 5	36
Sato (2014)	Knowledge of palliative care Difficulty in providing palliative care Self-reported practice of palliative care	Knowledge: nurses had insufficient knowledge of PC, and nurses in community hospitals had less knowledge than nurses in the cancer center Difficulty: nurses had trouble in providing PC, with most difficulty in alleviating symptoms Nurses in community hospitals experienced more difficulty, followed by nurses in district cancer centers Practice: nurses self-reported providing palliative care to cancer patients, most in pain management and less often in delirium management Nurses in community hospitals had poorest practice, while DN stations had the best	Limitation: Limited generalizability Strength: Large sample size with a high response rate	2, 3, and 7	34
Shah (2020)	Knowledge of palliative care Perceptions and attitudes about palliative care	250 Primary caregivers completed the questionnaire Half the respondents were close family members Knowledge: 45% of respondents had knowledge about palliative care Younger individuals had a higher comprehension about palliative care Attitudes: More than 50% respondents agreed that the palliative care recipient should be given the opportunity to continue with their normal activities and have their wishes fulfilled The majority agreed with the statement about the meaning and definition of palliative care 70% believed that a person with cancer should be informed about their diagnoses and disease progression	Limitations: Single palliative care program and caregivers from one health care setting All respondents were literate with high educational levels, so it is unclear what the knowledge and attitudes of less educated caregivers are Strength: Large sample size with good response rate	1, 6, and 8	34
Shimizu (2016)	Knowledge of home palliative cancer care Attitude toward terminal home care Self-reported practice for home palliative cancer care Difficulties with home palliative care	Most respondents (89% and 91%) knew that palliative care could be provided for patients with or without curative treatments and for those who are receiving cancer treatment More than 2/3 of respondents were able to provide correct answers for end-of-life care Nurses with more experiences caring for terminal patients at home or in hospitals usually have more positive attitudes and better practices, and less difficulties with home palliative cancer care	Limitations: Nonrater reliability Unclear baseline characteristics of sample Strength: Multiple concepts measured	2, 3, and 7	34
Vejlgaard (2005)	Attitudes to issues related to palliative care	More nurses than physicians believed that palliative care is rewarding Over 90% participants agreed that physicians play a key role in relieving suffering of terminal ill patients, while only 59% nurses agreed with this statement More nurses than doctors agreed that dealing with dying patients makes one aware of their own feelings and more likely to reflect upon existential matters GP and home care nurses had more positive attitudes than hospital physicians and nurses	Limitation: There is lack of psychometric measures of the instrument used in the study, although it was pilot tested Strengths: Relatively high response rate Compare attitudes between different professions and different practice sites Include an item to measure feelings about death	1 and 5	35

National Consensus Project for Quality Palliative Care¹³: the eight domains of palliative care include (1) structure and processes of care, (2) physical, (3) psychological or psychiatric, (4) social, (5) spiritual, religious, or existential, (6) cultural, (7) end of life, and (8) ethical or legal aspects of care.

CCAT, Crowe Critical Appraisal Tool; NCP, National Consensus Project; SD, standard deviation.

Results

Study characteristics

The characteristics of each study are provided in Table 3. Palliative care-related knowledge, attitudes, and confidence, among other concepts, including, but not limited to, competence, difficulties, and perceptions, were measured using a variety of methodological designs and questionnaires.^17–33 Fifteen articles were cross-sectional in design,^{17–23,25–33} and two used mixed-method designs.^21,24 Studies focused on objectives surrounding the measurement of knowledge, attitudes, and confidence in HHC clinicians, patients, and caregivers.^{17,19,22,23,25–28,30–33} Some studies in the review also included additional measures such as beliefs and concerns about palliative care,¹⁷ experiences and satisfaction of HHC professionals,¹⁸ opinions,¹⁹ self-reported palliative care practices,^19,32 competency and education needs,²⁰ the role of home care workers,²¹ difficulties in providing home palliative care,^30,32 and perceptions of HHC clinicians.^29,31

The findings represent 9289 clinicians, 1711 patients, and 279 caregivers. Twelve studies focused on clinicians,^{18–23,25–27,30,32,33} three focused on patients,^17,28,29 and two focused on caregivers.^24,31 Physicians, home care nurses, social workers, care managers, administrators, and nursing students were among the clinicians and health care workers represented in the studies. None of the studies included home health aides or equivalently titled individuals who provide the most hands-on care in HHC.

The majority of studies was conducted internationally, including United Kingdom,^21,24,25 Japan,^{17,23,26,28,30,32} Israel, Sweden,²² Pakistan,³¹ Austria,²⁰ Italy,^19,27 Norway,²⁸ and Denmark.³¹ One study was conducted in the United States.¹⁸

The instruments used in the majority of studies were investigator developed based on literature reviews or modified and derived from existing instruments. None of the instruments used in the studies included items that would be representative of comprehensive palliative care as per NCP guidelines. Many of the eight domains of palliative care outlined by NCP were not represented in the studies, including social, cultural, existential, ethical, or legal aspects of palliative care.

Five studies adapted questionnaire items from previously developed and validated scales.^{22–24,26,29} These instruments included the Frommelt Attitude Toward Care of the Dying (FATCOD),³⁴ Palliative Care Difficulty Scale,³⁵ Family Appraisal of Caregiving Questionnaire,³⁶ Caregiver Competence Scale,³⁶ and the Quality from the Patient's Perspective-Palliative Care.³⁸

Palliative care-related knowledge, attitudes, and confidence among HHC clinicians

Knowledge

Palliative care-related knowledge was assessed based on a variety of concepts and skill sets relevant to HHC. Specific skills evaluated included knowledge about opioids and pain management, cancer care, end-of-life and hospice care needs, psychosocial needs of patients and families, and medication management related to palliative care.^{17,19,30–32}

There was varied knowledgeability about the definition of palliative care. Beccaro et al.¹⁹ revealed that Italian general practitioners who provide HHC had uncertainty about the definition and goals of palliative care. Only about a quarter of general practitioners were able to correctly define palliative care, but two-thirds acknowledged that an interdisciplinary team was required for palliative care delivery.¹⁹ Improving palliative care skills and knowledge, and promoting integration of palliative care teams, development, and implementation of trainings of palliative care delivery were deemed essential.¹⁹

In a study by Sato et al.,³⁰ district nurses in Japan, otherwise known as home care nurses, had insufficient knowledge about palliative care overall, but showed high self-reported knowledge in providing pain management. Conversely, in a different study by Shimizu et al.,³² home care nurses in Japan were knowledgeable about the appropriateness of palliative care of patients simultaneously receiving curative treatments, but had less knowledge when it came to symptom management.

Attitudes

In five studies, clinicians responded to questionnaire items that assessed their attitudes about their perceived duties within home care and in providing end-of-life and palliative care for seriously ill patients.^{22,26,27,32,33} Specifically, attitudes of clinicians surrounding palliative sedation, experiences in providing palliative care, attitudes about death, and work engagement related to palliative care, hospice care, and perceived roles of HHC clinicians relative to palliative care were gathered.

Variable attitudes about palliative care were noted across studies. Henoch et al.²² compared FATCOD scores of Swedish nurses, which measured attitudes toward caring for dying patients with nurses and nursing students from other countries, including the United States., Israel, and Japan, and found the scale to be reliable and valid in different locations. Mahiro et al.²⁶ reported FATCOD scores of Japanese home visiting nurses. Their analysis revealed that work engagement and attending end-of-life care seminars were associated with positive attitudes among the nurses. However, many nurses often avoided the idea of death and dying.²⁶ Finally, a study by Shimizu et al.³² showed that nurses in Japan with more experience in the home care setting typically had more favorable attitudes, skilled practice, and fewer difficulties with providing palliative care in the home for patients with cancer.

Attitudes about education, preparation, and role clarification related to palliative care were studied in several studies. Devlin and McIlfatrick²¹ highlighted that HHC workers acknowledged the importance of palliative care in their role; however, they expressed additional needs of education, training, and support. Henoch et al.²² found that the care culture and practice setting likely influence nurses' attitudes toward death, with education also likely playing a role, as major differences were noted between attitudes of surgical nurses compared with others (e.g., hospice, palliative home care team, oncology). Nurses felt that administrators need to provide opportunities for staff to attend more palliative care-related seminars or training and/or improve work engagement.

Furthermore, clarification of roles was needed to meet the educational and training needs of HHC staff. Over 90% of participants agreed that physicians played a key role in relieving suffering of terminally ill patients. Interestingly, home care nurses and general practitioners viewed palliative care more favorably than hospital nurses and physicians.³³ To better understand the role of home care nurses in providing palliative care, Devlin and McIlfatrick²¹ surveyed home care workers and found that seventy-five percent of respondents felt palliative care provision in the home was an important part of their role, and it was considered rewarding.²¹ In Denmark, nurses were more likely to agree with the statement that palliative care was rewarding and confront their own feelings about death and existential matters.³³

Confidence

Confidence in clinicians was measured in the context of competencies in three studies.^20,23,25 Becker et al.²⁰ examined the educational needs of general practitioners and home care nurses in their competency and needs related to palliative care delivery. Almost two-thirds of participants did not feel adequately prepared for palliative care delivery in the home; however, those with more experience had higher overall competency. General practitioners were found to have greater competency in providing pain management compared to nurses.²⁰

A study by Hirooka et al.²³ underscored the very low levels of confidence in home visiting nurses in providing psychotropic medications or psychotherapy and low confidence in their ability to provide cancer-related pain management. Magee and Koffman²⁵ examined confidence in general practitioners' views about palliative care, which revealed that confidence in palliative care emergency management was low. Lack of training in palliative care and low frequency of managing palliative care patients resulted in lower confidence.²⁵

Palliative care-related knowledge, attitudes, and confidence among HHC patients and caregivers

Knowledge

Among patients and caregivers, general knowledge and perceptions about end-of-life care, life-sustaining therapies, and generalist palliative care were assessed. Most studies included patients with cancer. Most studies reported moderate to low levels of palliative care-related knowledge among patients and caregivers. For example, Akiyama et al.¹⁷ found that patients with advanced cancer had incorrect knowledge about opioids and pain management (e.g., beliefs about opioids being universally addictive and shortening life). About half of patients who enrolled in the study felt that palliative care was only suitable for patients with terminal illnesses.¹⁷ Shah et al.³¹ surveyed 250 caregivers to understand their degree of palliative care-related knowledge, which revealed that only less than half had adequate knowledge about palliative care and its utility.

Attitudes

For patients and caregivers, attitudes, opinions, or perceptions about palliative care were measured in five studies.^{17,18,24,28,31} In Japan, some patients had concerns about palliative home care placing an undue burden on their family members and making it difficult for them to understand and respond to sudden changes in their condition.¹⁷ Shah et al.³¹ showed that younger caregivers with higher education in Pakistan were more likely to agree with a statement about the definition of palliative care and more than half believed that a person receiving palliative care should have their wishes honored.³¹ Seventy percent of respondents agreed with the idea that patients with cancer should receive adequate communication about their diagnosis and disease progression.³¹

Miyashita et al.²⁸ implemented an education intervention that improved the public's perception of end-of-life care in the home care setting. Attitudes about feasibility of home death, corrected misconceptions about opioids, symptom management at home, and communication were improved. Changing perceptions about the feasibility of a home death were associated with male gender, change in beliefs regarding burden to family caregivers, anxiety regarding admission to the hospital with worsening physical condition, and fear that pain would not be relieved at home.²⁸ Luker et al.²⁴ showed that an educational booklet about caregiving resulted in more favorable attitudes and home care nurses found it useful in providing information for their patients' caregivers.

Allo et al.¹⁸ found that participants showed high satisfaction with the patient home visits program, which was found to be an effective education model to teach palliative care among broad professionals. Patients' perceptions of palliative care were favorable regarding medical care, honesty, respect, and empathy received from clinicians, and the general atmosphere across all health care settings in a study by Sandsdalen et al.²⁹

Confidence

In this review, no study measured confidence in the patient or caregiver related to palliative care. While some studies measured competence or satisfaction, confidence in being able to help provide caregiving to a loved one in the context of palliative care was not measured.

Discussion

Overall, this systematic review found that palliative care-related knowledge among HHC clinicians, patients, and caregivers was extremely varied across countries and health care systems. Varied integration of routine palliative care may account for the low-to-moderate levels of palliative care-related knowledge among clinicians, especially in the context of the heterogeneity of HHC services across countries. Notably, there is a substantial degree of heterogeneity of these findings, especially with respect to palliative care-related knowledge, across countries and health care systems, given the varied nature of HHC delivery across settings.

It is important to highlight that the United States had little evidence generation on this topic over the last 20 years, underscoring the importance of understanding palliative care-related knowledge, attitudes, and confidence among HHC clinicians, patients, and caregivers for future integration and implementation efforts.

In general, attitudes toward palliative care were largely favorable among HHC clinicians; however, attitudes about specific palliative care practices, roles and responsibility, and comfort about discussing hospice and death and dying were largely mixed and often ambiguous. While our review included studies that measured confidence in clinicians, there was none that measured the confidence of patients and caregivers regarding palliative care.

For clinicians, confidence was varied and lacking when it came to serious illness communication, particularly at the end of life, administering specific types of medications (e.g., psychotropic medications for psychosis or delirium), and complex symptom management. Competency and educational needs of clinicians related to palliative care delivery in the home were measured in some studies. We found that, while most clinicians viewed their role in palliative care delivery as important, few felt adequately prepared and competent in providing this care, and that role clarification was often missing in training. Also, understanding the differing knowledge needs for interdisciplinary clinicians should be prioritized in future work. Ultimately, given the variability of knowledge, attitudes, and confidence in overall HHC workforce, our review has highlighted the lack of uniformity and standardization of palliative care training for HHC clinicians.

Furthermore, no study measured knowledge, attitudes, and confidence of HHC clinicians, patients, and caregivers in the United States. The United States has a unique approach to HHC in comparison to other countries reported in this review and is heavily dependent on home health aides to provide much of the caregiving and in helping patients with activities of daily living and independent activities of daily living.³⁹ Our review adds to the palliative care evidence base, given a notable finding that home health aides were not represented in any of the studies of this review, leaving out a major sector of the HHC workforce. The fact that palliative care-related knowledge, attitudes, and confidence in HHC have been seldom studied in the United States calls for more research in this rapidly growing health care sector.

Of note, studies in this review did not include the full gamut of palliative care domains outlined in the NCP guidelines. Studies mainly included a focus on processes of palliative care, pain and symptom management, and caregiving aspects in HHC. The evaluation of certain facets of palliative care such as cultural, ethical, legal, existential, religious, and some psychological or psychiatric aspects are largely missing in the evidence base. These aspects of palliative care are vitally important in the HHC setting, given the intimate nature of care delivery and the potential to improve patient- and family-centered outcomes and improved equity when such needs are met. These gaps in evidence are critical to acknowledge for future research in this area, especially for the creation of novel instruments.

The synthesis of the current state of measurement science for knowledge, attitudes, and confidence in HHC palliative care allowed us to extrapolate what was currently available in the literature (e.g., instruments, scales, questionnaires, tools), examine these measurement tools for future instrument development, and highlight the key gaps in evidence specific to the NCP domains. This study can inform future research surrounding the development of novel instruments that comprehensively measure palliative care-related knowledge, attitudes, and confidence in HHC clinicians, patients, and caregivers.

Conclusion

The evidence base measuring palliative care-related knowledge, attitudes, and confidence in HHC clinicians, patients, and caregivers is limited. This review provides foundational evidence to inform the development of a comprehensive, psychometrically tested instrument to measure palliative care-related knowledge, attitudes, and confidence informed by the eight NCP domains of palliative care in HHC, which has potential for widespread utility as palliative care programs begin to increase in number across the United States within HHC. An instrument of this type is critical to ensuring that the HHC workforce is adequately trained in palliative care to provide optimal care to achieve best patient- and family-centered outcomes for seriously ill adults.

Footnotes

Authors' Contributions

All authors were involved in the development of the research question, database searching, selection of articles, data extraction, synthesis, and interpretation of findings. All authors were involved in the writing and/or editing of this article.

Acknowledgment

We would like to acknowledge our informationist, John Usseglio, at Columbia University School of Nursing for providing guidance on the literature search.

Funding Information

This study was funded by the Columbia University School of Nursing Intramural Pilot Grant Program. K.P.M. and J.A.K. are supported by the Columbia University School of Nursing Comparative and Cost-Effectiveness Research Training for Nurse Scientists Program (CER2; T32NR014205).

Author Disclosure Statement

There are no conflicts of interest.

References

Bowman

, Twohig

, and Meier

: Overcoming barriers to growth in home-based palliative care. J Palliat Med, 2019; 22:408–412.

Alliance for Home Health Quality and Innovation (AHHQI): Home Health Chartbook 2020. 2020. https://ahhqi.org/images/uploads/AHHQI_2020_Home_Health_Chartbook_Final_09.30.2020.pdf (Last accessed November 13, 2020).

Kavalieratos

, Corbelli

, Zhang

, et al.: Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA, 2016; 316:2104–2114.

Murali

, Merriman

, Yu

, et al.: An adapted conceptual model integrating palliative care in serious illness and multiple chronic conditions. Am J Hosp Palliat Care, 2020; 37:1086–1095.

Quinn

, Shurrab

, Gitau

, et al.: Association of receipt of palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: A systematic review and meta-analysis. JAMA, 2020; 324:1439–1450.

Brian Cassel

, Kerr

, McClish

, et al.: Effect of a home-based palliative care program on healthcare use and costs. J Am Geriatr Soc, 2016; 64:2288–2295.

Ankuda

, Kersting

, Guetterman

, et al.: What matters most? A mixed methods study of critical aspects of a home-based palliative program. Am J Hosp Palliat Care, 2018; 35:236.

Ritchie

and Leff

: Population health and tailored medical care in the home: The roles of home-based primary care and home-based palliative care. J Pain Symptom Manage, 2018; 55:1041–1046.

Wong

FKY

, So

, Ng

AYM

, et al.: Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure. Palliat Med, 2018; 32:476–484.

10.

Gomes

, Calanzani

, Curiale

, et al.: Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev, 2013; 6:CD007760.

11.

Brody

, Guan

, Cortes

, and Galvin

: Development and testing of the dementia symptom management at home (DSM-H) program: An interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers. Geriatr Nurs, 2016; 37:200–206.

12.

Ahluwalia

, Chen

, Raaen

, et al.: A systematic review in support of the National Consensus Project clinical practice guidelines for quality palliative care, fourth edition. J Pain Symptom Manage, 2018; 56:831–870.

13.

National Consensus Project for Quality Palliative Care: Clinical practice guidelines for quality palliative care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care, 2018.

14.

Crowe

and Sheppard

: A general critical appraisal tool: An evaluation of construct validity. Int J Nurs Stud, 2011; 48:1505–1516.

15.

Crowe

, Sheppard

, and Campbell

: Comparison of the effects of using the Crowe Critical Appraisal Tool versus informal appraisal in assessing health research: A randomised trial. Int J Evid Based Healthc, 2011; 9:444–449.

16.

Crowe

, Sheppard

, and Campbell

: Reliability analysis for a proposed critical appraisal tool demonstrated value for diverse research designs. J Clin Epidemiol, 2012; 65:375–383.

17.

Akiyama

, Takebayashi

, Morita

, et al.: Knowledge, beliefs, and concerns about opioids, palliative care, and homecare of advanced cancer patients: A nationwide survey in Japan. Support Care Cancer, 2012; 20:923–931.

18.

Allo

, Cuello

, Zhang

, et al.: Patient home visits: Measuring outcomes of a community model for palliative care education. J Palliat Med, 2016; 19:271–278.

19.

Beccaro

, Lora Aprile

, Scaccabarozzi

, et al.: Survey of Italian general practitioners: Knowledge, opinions, and activities of palliative care. J Pain Symptom Manage, 2013; 46:335–344.

20.

Becker

, Momm

, Gigl

, et al.: Competency and educational needs in palliative care. Wien Klin Wochenschr, 2007; 119:112–116.

21.

Devlin

and McIlfatrick

: Providing palliative and end-of-life care in the community: The role of the home-care worker. Int J Palliat Nurs, 2010; 16:195–203.

22.

Henoch

, Browall

, Melin-Johansson

, et al.: The Swedish version of the Frommelt Attitude Toward Care of the Dying scale: Aspects of validity and factors influencing nurses' and nursing students' attitudes. Cancer Nurs, 2014; 37:1.

23.

Hirooka

, Miyashita

, Morita

, et al.: Regional medical professionals' confidence in providing palliative care, associated difficulties and availability of specialized palliative care services in Japan. Jpn J Clin Oncol, 2014; 44:249–256.

24.

Luker

, Cooke

, Dunn

, et al.: Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: A feasibility study. Eur J Oncol Nurs, 2015; 19:154–161.

25.

Magee

and Koffman

: Out-of-hours palliative care: What are the educational needs and preferences of general practitioners?. BMJ Support Palliat Care, 2016; 6:362–368.

26.

Mahiro

, Takashi

, and Satoko

: Work engagement and attitudes toward caring for dying patients and families among home-visiting nurses in Japan. Int J Palliat Nurs, 2014; 20:343–348.

27.

Mercadante

, Masedu

, Mercadante

, et al.: Attitudes of palliative home care physicians towards palliative sedation at home in Italy. Support Care Cancer, 2017; 25:1615–1620.

28.

Miyashita

, Sato

, Morita

, and Suzuki

: Effect of a population-based educational intervention focusing on end-of-life home care, life-prolonging treatment and knowledge about palliative care. Palliat Med, 2008; 22:376–382.

29.

Sandsdalen

, Grøndahl

, Hov

, et al.: Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: A cross-sectional study. BMC Palliat Care, 2016; 15:79.

30.

Sato

, Inoue

, Umeda

, et al.: A Japanese region-wide survey of the knowledge, difficulties and self-reported palliative care practices among nurses. Jpn J Clin Oncol, 2014; 44:718–728.

31.

Shah

, Qaisar

, Azam

, and Mansoor

: Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: A cross-sectional survey in Karachi, Pakistan. BMC Palliat Care, 2020; 19:180.

32.

Shimizu

, Nishimura

, Ishii

, et al.: Development and validation of scales for attitudes, self-reported practices, difficulties and knowledge among home care nurses providing palliative care. Eur J Oncol Nurs, 2016; 22:8–22.

33.

Vejlgaard

and Addington-Hall

: Attitudes of Danish doctors and nurses to palliative and terminal care. Palliat Med, 2005; 19:119–127.

34.

Frommelt

: The effects of death education on nurses' attitudes toward caring for terminally ill persons and their families. Am J Hosp Palliat Care, 1991; 8:37–43.

35.

Nakazawa

, Miyashita

, Morita

, et al.: The palliative care self-reported practices scale and the palliative care difficulties scale: Reliability and validity of two scales evaluating self-reported practices and difficulties experienced in palliative care by health professionals. J Palliat Med, 2010; 13:427–437.

36.

Cooper

, Kinsella

, and Picton

: Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psychooncology, 2006; 15:613–622.

37.

Pearlin

, Mullan

, Semple

, and Skaff

: Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 1990; 30:583–594.

38.

Sandsdalen

, Rystedt

, Grøndahl

, et al.: Patients' perceptions of palliative care: Adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received. BMC Palliat Care, 2015; 14:54.

39.

Seow

and Bainbridge

: A review of the essential components of quality palliative care in the home. J Palliat Med, 2018; 21:S37–S44.

40.

Cruz-Oliver

, Little

, Woo

, and Morley

: End-of-life care in low- and middle-income countries. Bull World Health Organ, 2017; 95:731.