Background
Methods
Design
Identification of relevant literature
Eligible studies
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Study types: peer-reviewed studies presenting original qualitative, quantitative, and mixed-method studies with an exploratory descriptive approach. Systematic reviews, commentaries, editorials, newspaper articles, and other forms of popular media were excluded.
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Population or participants: papers from all over the world were examined. Studies including HPs, patients with cancer and families were eligible. Studies including patients with disease other than cancer were excluded. This review was limited to studies on adults, since perceived barriers and facilitators to use pediatric palliative care differ from those to use adult palliative care [15, 16].
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Setting: oncology, hemato-oncology, and general practice which includes oncology/hemato-oncology patients.
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Outcome measures: primary outcomes of interest were palliative care use, access, provision, implementation, and integration. Studies with diverse perspectives were included (e.g., hemato-oncologists’ and GPs’ perspectives). Studies that included palliative care as a range of services provided by a multidisciplinary team were examined; studies focusing on a single aspect of palliative care services (e.g., spiritual care only) were not considered.
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Language: studies in English only were included.
Data extraction and data synthesis
Themes | Examples of barriers | Examples of facilitators |
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Theme 1: Awareness of palliative care | ||
Awareness, knowledge, education or experience among health care professionals | Lacking understanding of the broad applicability of PC among HPs [51]. | Improving education on PC for HPs in general, including experiencing observation and receiving support [39]. |
Awareness among patients and families | Patient and families do not know the purpose of PC involvement [64]. | Increase of opportunities of patient education on PC for instance videos [64]. |
Theme 2: Collaboration and communication in health care settings | ||
Collaboration and communication between health care professionals and patients and their families | Health care professionals’ difficulty in communicating patients’ prognoses [54]. | The use of short assessment scales, communication note-books and medical files with non-physical information [23]. |
Collaboration and communication between health care professionals | Difficulty in dealing with conflicting information about the goals of care which are them given among nurses [26]. | PC team strategic visibility in patient floors and hospital-wide events and PC team unintentional visibility like being present around the hospital [64]. |
Theme 3: Emotions involved in disease paths | ||
Emotions among health care professionals | Barriers to discuss PC: emotional bond, emotional discomfort among oncologists [34]. | Further education and training focused on dealing properly with patient psychosocial and emotional problems for HPs [52]. |
Emotions among patients and their families | Emotions in patients such as sadness/suppression, unrealistic expectations, infinite trust and faith in medicine, giving up hope, overly optimistic about life expectation [34]. | Assessing psychological condition and treating mental disorders of patient [65]. |
Theme 4: Attitudes and beliefs towards palliative care | ||
Attitudes and beliefs among health care professionals | Belief that PC is not appropriate for those who have complex problems without physical symptoms among HPs [38]. | Provision of clear, convincing, scientific support, concerning palliative care, for recommendations from the PC team [64]. |
Attitudes and beliefs among patients and their families | Interpretation of earlier and broader PC consultations as a cost saving measure (rather than clinically beneficial measure) among patients and their families [58]. | Renaming ‘palliative care’ to ‘supportive care’, as patients were more receptive to the second name [57]. |
Results
Identification and selection of the literature
Characteristics of included studies
*Study no. | Author/s and year | Aim | Design | Participants and origin | Data collection method |
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1 | Akiyama, M., Takebayashi, T., et al., 2012 [20] | To assess patients’ knowledge, beliefs, or concerns about opioids, palliative care (PC), and homecare | Quantitative – Survey study | 925 outpatients with metastatic or recurrent cancer - Japan | Questionnaire (mail paper form) |
2 | Alaeddini, J., Julliard, K., et al., 2000 [21] | To explore physicians’ attitudes and opinions about PC and its implementation | Qualitative | 23 physicians (community primary care physicians, hospital-based ambulatory clinic physicians, and specialists) - USA | Focus-group |
3 | Ansari, M., Rassouli, M.,et al., 2018 [22] | To explore the educational needs of stakeholders of palliative care for cancer patients | Qualitative | 20 participants: cancer patients and their caregivers; healthcare providers, experts and policy-makers active in the field of cancer - Iran | Semi-structured interview |
4 | Beernaert, K., Deliens, L., et al., 2014 [23] | To examine barriers and facilitators of the early identification of PC needs by family physicians (FP) | Qualitative | 20 FP, 12 community and PC nurses, 18 patients - Belgium | Focus-group and semi-structured interview |
5 | Boyd, D., Merkh, K., et al., 2011 [24] | To identify oncology nurses’ attitudes toward care at the end of life and PC use | Quantitative – Cross-sectional, descriptive correlational survey study | 31 oncology nurses - USA | Questionnaire |
6 | Bradley, E. H., Cramer, L. D., et al., 2002 [89] | To identify physicians’ characteristics associated to referral to PC | Quantitative - Cross-sectional study | 231 physicians (internists, family physicians, oncologists, pulmonologists, and cardiologists) - USA | Questionnaire |
7 | Broom, A., Kirby, E. et al., 2012 [25] | To examine the logics underpinning the timing of referral to PC | Qualitative | 20 medical specialists (oncology, urology, haematology, geriatrics, general medicine, nonspecialist palliative medicine) - Australia | Semi-structured interview |
8 | Canzona, M. R., Love, D., et al., 2018 [26] | To investigate challenges that nurses face when they provide care for oncological patients transitioning from curative to palliative care and to identify educational opportunities for nurses | Qualitative Mixed | 28 nurses (14 practicing in oncology and 14 practicing in palliative care) - USA | Semi-structured interview (telephone) |
9 | Cherny, N. I. and Catane, R., 2003 [27] | To identify oncologist-related barriers to the provision of optimal supportive and PC | Quantitative – Cross-sectional survey study | 895 oncologists (members of the European Society of Medical Oncology) – Europe (82.5%), America (12.1%), Australia (2.2%), Asia (2.6%) and Africa (0.7%). | Questionnaire |
10 | Feeg, V. D. and Elebiary, H., 2005 [28] | To explore professionals’ perceptions about barriers related to hospice and PC, opinions about barriers related to dying at home, and barriers related to advance directives | Quantitative – Cross-sectional survey | 100 national conference on PC attendees (nurses 71%, social workers 11%, hospital/hospice administrators 6%, physicians 4%, counselors 3%, chaplains 3%, and physical therapists 2%) - USA | Questionnaire |
11 | Fox, J., Windsor, C. et al., 2016 [29] | To explore the transition to PC | Qualitative | 29 participants: patients, family carers, and healthcare professionals - Australia | Semi-structured interview |
12 | Gidwani, R., Nevedal, A., et al., 2017 [30] | To characterize oncologists’ perceptions of primary and specialist PC; experiences interacting with PC specialists; and the optimal interface of PC and oncology in providing PC | Qualitative | 31 oncologists -USA | Semi-structured interview (telephone) |
13 | Gott, M., Ingleton, C. et al., 2011 [31] | To explore how transitions to a PC approach are perceived to be managed in acute hospital settings | Qualitative | 58 health professionals (involved in the provision of PC) – United Kingdom | Focus group and interview |
14 | Groot, M. M., Vernooij-Dassen, M. J. et al., 2005 [32] | To investigate general practitioners’ task perception and barriers involved in PC | Qualitative | 12–33 general practitioners (non specified the exact number) – The Netherlands | Focus-group |
15 | Miyashita, M., Hirai, K. et al., 2008 [33] | To investigate the barriers to referral to inpatient PC units | Qualitative | 63 participants (13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in PC and acute care cancer settings) - Japan | Semi-structured interview |
16 | Horlait, M., Chambaere, K. et al., 2016 [34] | To identify the barriers that oncologists experience to introduce PC to patients | Qualitative | 15 oncologists Belgium | Semi-structured interview |
17 | Hui, D., Cerana, M. A. et al., 2016 [35] | To examine the association between oncologists’ end of life care attitudes and timely specialist PC referral | Quantitative – Cross-sectional | 240 oncology specialists (120 hematologic and 120 solid oncology specialists) – USA | Questionnaire |
18 | Hui, D., Park, M. et al., 2015 [37] | To examine the differences in attitudes and beliefs toward PC referral between hematologic and solid tumor specialists | Quantitative - Cross-sectional | 240 oncology specialists (120 hematologic and 120 solid oncology specialists) – USA | Questionnaire |
19 | Johnson, C., Paul, C. et al., 2011 [74] | To explore doctors’ perceptions of barriers to referring patients for specialized PC. | Qualitative – Exploratory study | 40 medical doctors (general practitioners, oncologists, radiation oncologists, hematologists, respiratory physicians and colorectal surgeons) - Australia | Interview (telephone) |
20 | Kafadar, D., Ince, N. et al., 2015 [38] | To evaluate the managerial perspectives and opinions about specialized PC | Mixed method | 70 medical directors - Turkey | Questionnaire |
21 | Kawaguchi, S., Mirza, R. et al., 2017 [39] | To explore medical doctors’ understanding of and experiences with PC | Qualitative | 10 internal medicine residents - Canada | Semi-structured interview |
22 | Keim-Malpass, J., Mitchell, E. M. et al., 2015 [40] | To identify existing barriers in accessing PC services for cancer patients | Qualitative | 42 clinicians, administrative support staff, and service support personnel - USA | Semi-structured interview |
23 | Kirby, E., Broom, A. et al., 2014 [41] | To examine how medical specialist conduct the process of negotiation of the transition to specialist PC with families | Qualitative | 20 medical specialists (e.g. medical oncology, haematology, surgery, radiation oncology, general medicine, geriatrics, etc.) Australia | Semi-structured interview |
24 | Kumar, P., Casarett, D. et al., 2012 [42] | To identify barriers to supportive and PC services among oncology outpatients | Quantitative - Cross-sectional | 313 patients with breast, lung or gastrointestinal cancer - USA | Questionnaire |
25 | Le, B. H., Mileshkin, C., L. et al., 2014 [77] | To explore lung cancer clinicians’ perceptions of PC and to identify views, barriers and benefits of referring to PC | Qualitative | 28 clinicians (involved in the management of patients with lung cancer) - Australia | Focus group and semi-structured interview |
26 | Le, B. H. C. and Watt, J. N., 2010d [43] | To assess care provided to patients dying and to understand senior clinician decision-making around referral to PC | Mixed method | 27 (senior) clinicians - Australia | A retrospective chart-audit and semi structured interview |
27 | LeBlanc, T. W., O’Donnell, J. D. et al., 2015 [44] | To examine perceptions of PC among hematologic and solid tumor oncologists | Mixed method | 66 oncologists: 23 treating hematologic malignancies and 43 treating solid tumors - USA | Semi-structured interview and questionnaire |
28 | Llamas, K. J., Llamas, M. et al., 2001 [45] | To identify PC service needs, and educational and support needs of hospital teaching staff | Quantitative - Cross-sectional | 267 multi-disciplinary oncology staff (medical, nursing, radiation therapy and other disciplines) - Australia | Questionnaire |
29 | Mahon, M. M. and McAuley, W. J., 2010 [46] | To examine nurses’ points of views and beliefs about PC and PC decision making | Qualitative | 12 oncology nursing - USA | Interview |
30 | McDarby, M. and Carpenter, B. D., 2019 [64] | To identify factors that impede or facilitate the palliative care consultation team’s successful collaboration with other health care professionals | Qualitative | 48 providers (19 palliative care providers, 29 nonpalliative care providers) - USA | Interview (telephone and site) |
31 | McGrath, P., 2013 [47] | To explore issues associated with the experience of survivorship for hematology patients | Qualitative | 50 oncology patients (Multiple Myeloma, Lymphoma, Leukemia and Other) - Australia | Open-ended interview and focus group |
32 | McIlfatrick, S., 2007 [48] | To assess the PC needs from the perspectives of patients, informal carers and healthcare providers | Mixed method | 76 patients and lay carers receiving PC services – United Kingdom | Semi-structured interview and focus-group |
33 | Melvin, C. S., 2010 [49] | To examine obstacles to timely referral to PC services and to explore the impact of late referral on quality of life | Qualitative | 13 patients 6 family members - Australia | Interview |
34 | Mohammed, S., Swami, N., 2018 [50] | To examine bereaved caregivers’ experiences of providing care at home for patients with advanced cancer, while interacting with home care services | Qualitative | 61 bereaved caregivers (30 intervention, 31 control) - Canada | Semi-structured interview |
35 | Monterosso, L., Ross-Adjie, G. M. et al., 2016 [51] | To identify HPs’ perspectives, education, and support needs related to PC provision | Mixed method | 302 multi-disciplinary health professionals - Australia | Focus group |
36 | Norton, S. A., Wittink, M. N., et al., 2019 [72] | To explore family caregivers’ points of view of the final month of life of patients with advanced cancer | Qualitative | 92 family caregivers of patients with end-stage cancer - USA | Semi-structured interview |
37 | O’Connor, M. and Lee-Steere, R., 2006 [52] | To explore general practitioners’ attitudes to PC in a rural center, in particular the perceived barriers to the provision of PC | Qualitative | 10 general practitioners - Australia | Interview |
38 | Odejide, D. Y. Salas Coronado, et al., 2014 [53] | To explore hematologic oncologists’ perspectives and decision-making processes regarding end-of-life care | Qualitative | 20 hematologic oncologists - USA | Focus group |
39 | Patel, M. I., Periyakoil, V. S., 2018 [54] | To examine clinical providers’ experiences delivering cancer care for patients at the end of life and their thoughts on potential solutions to improve quality of care | Qualitative | 75 cancer care providers (35 physicians, 20 nursing staff, 12 social workers, and 8 patient navigators) - USA | Semi-structured interview |
40 | Philip, J. A. M. and Komesaroff, P., 2006 [55] | To explore the concept of ideal PC and the barriers to the access | Qualitative | 45 PC professionals from community, inpatient, and hospital consultancy services - Australia | Focus group |
41 | Redman, S., White, K. et al., 1995 [90] | To examine PC nurses’ professional need and clinical knowledge | Quantitative - Cross-sectional | 108 nurses - Australia | Questionnaire and interview |
42 | Rhee, J. J.-O., Zwar, N. et al., 2008 [56] | To establish the level of participation of urban general practitioners and to identify the barriers which they have to face in palliative care provision | Quantitative - Cross-sectional | 269 general practitioners - Australia | Questionnaire |
43 | Rhondali, W., Burt, S. et al., 2013 [57] | To explore the oncologists’ perceptions of a supportive care program, and to determine whether renaming ‘palliative care’ influenced communication regarding referrals | Qualitative | 17 oncologists - USA | Semi-structured interview |
44 | Rodriguez, K. L., Barnato, A. E. et al., 2007 [58] | To explore the perceptions of PC and to identify barriers to earlier use of PC in the illness trajectory | Qualitative | 120 health care providers (on intensive care unit) - USA | Semi-structured interview |
45 | Ronaldson, S. and Devery, K., 2001 [59] | To investigate the transition to palliative care services | Qualitative | 11 inpatients and 5 nursing staff members - Australia | Semi-structured interview |
46 | Rugno, C. P., Rebeiro Paiva, B. S. et al., 2014 [60] | To explore women’s understanding on the reasons anticancer treatment withdrawal, their thoughts about palliative care, and also prospective on the communication of bad news | Qualitative | 22 women with advanced cancer (14 breast, 4 cervical, 1 ovarian, and 1 endometrial cancer) - Brazil | Semi-structured interview |
47 | Sanjo, M., Morita, T., 2018 [61] | To explore experiences of family members of patients with cancer receiving information concerning palliative care unit consultations | Quantitative - Survey | 465 family member of adult patients with cancer - Japan | Questionnaire (mail paper form) |
48 | Schenker, Y., Crowley-Matoka, M. et al., 2014 [62] | To examine oncologist factors that influence referrals to outpatient specialized PC | Qualitative | 74 medical oncologists - USA | Interview |
49 | Smith, C. B., Nelson, J. E. et al., 2012 [79] | To ascertain factors influencing physicians decisions for referral to PC | Quantitative - Cross-sectional | 155 physicians (caring for cancer patients) - USA | Self-administered questionnaire |
50 | Walshe, C., Chew-Graham, C. et al., 2008 [91] | To examine the influences on referral decisions made (within community PC services) | Qualitative | 57 healthcare professionals interviewed; 13 case notes; 84 other non-patient documents – United Kingdom | Interview, observation and documentary analysis |
51 | Ward, A. M., Agar, M. et al., 2009 [63] | To explore attitudes of medical oncologists toward collaboration with specialist PC services | Mixed method | 78 medical oncologists and 37 trainees – Australia | Questionnaire (web-based) |
52 | Zhang, Z. and Cheng, W.W., 2014 [65] | To explore the process to access and role of PC | Qualitative | 1 patient (doctor) – China | Observation |