CoChat
Sign Up
Cited by 16Palliative Care and End-of-Life IssuesPalliative and Oncologic CareCancer survivorship and care

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Open access
Yang, Grace Meijuan, Dionne-Odom, J. Nicholas, Foo, Yi Han, Chung, Ariel Hui Mei, Kamal, Nur Haidah Ahmad, Tan, Laurence, Yu, Chou Chuen, Khanh, Le Mai +4 more·2021·BMC Palliative Care
DOI 10.1186/s12904-021-00799-yPMC PMC8218975
Open this paper in CoChat — free accountOpen PDF

Abstract

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1186/s12904-021-00799-y

Cites

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

No citation lists for this paper

No citation lists for this paper yet — checked again daily.

References 31 · Cited by 16

Research works printed but not linked: 28

  1. [1]Gaertner J Siemens W Meerpohl JJ Antes G Meffert C Xander C Stock S Mueller D Schwarzer G Becker G Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis BMJ 2017 357 j2925 10.1136/bmj.j2925 28676557 PMC5496011 · DOI
  2. [2]Haun MW Estel S Rucker G Friederich HC Villalobos M Thomas M Hartmann M Early palliative care for adults with advanced cancer Cochrane Database Syst Rev 2017 6 CD011129 28603881 PMC6481832
  3. [3]Hui D Bruera E Models of palliative care delivery for patients with cancer J Clin Oncol 2020 38 9 852 865 10.1200/JCO.18.02123 32023157 PMC7082156 · DOI
  4. [4]Nickolich MS El-Jawahri A Temel JS LeBlanc TW Discussing the evidence for upstream palliative care in improving outcomes in advanced cancer Am Soc Clin Oncol Educ Book 2016 35 e534 538 10.1200/EDBK_159224 27249764 · DOI
  5. [5]Hoerger M Greer JA Jackson VA Park ER Pirl WF El-Jawahri A Gallagher ER Hagan T Jacobsen J Perry LM Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care J Clin Oncol 2018 36 11 1096 1102 10.1200/JCO.2017.75.6676 29474102 PMC5891131 · DOI
  6. [6]Maloney C Lyons KD Li Z Hegel M Ahles TA Bakitas M Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens Palliat Med 2013 27 4 375 383 10.1177/0269216312445188 22573470 PMC3657725 · DOI
  7. [7]Bakitas M Lyons K Hegel M Balan S Brokaw F Seville J Hull J Li Z Tosteson T Byock I Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial JAMA 2009 302 7 741 749 10.1001/jama.2009.1198 19690306 PMC3657724 · DOI · Paper page
  8. [8]Bakitas M Stevens M Ahles T Kirn M Skalla K Kane N Greenberg ER Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings J Palliat Med 2004 7 2 363 372 10.1089/109662104773709530 15130218 · DOI
  9. [9]Bakitas M Lyons KD Hegel MT Balan S Barnett KN Brokaw FC Byock IR Hull JG Li Z McKinstry E The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions Palliat Support Care 2009 7 1 75 86 10.1017/S1478951509000108 19619377 PMC3685415 · DOI
  10. [10]Bakitas MA Tosteson TD Li Z Lyons KD Hull JG Li Z Dionne-Odom JN Frost J Dragnev KH Hegel MT Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial J Clin Oncol 2015 33 13 1438 1445 10.1200/JCO.2014.58.6362 25800768 PMC4404422 · DOI
  11. [11]Dionne-Odom JN Azuero A Lyons KD Hull JG Tosteson T Li Z Li Z Frost J Dragnev KH Akyar I Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial J Clin Oncol 2015 33 13 1446 1452 10.1200/JCO.2014.58.7824 25800762 PMC4404423 · DOI
  12. [12]Akyar I Dionne-Odom JN Ozcan M Bakitas MA Needs assessment for Turkish family caregivers of older persons with cancer: first-phase results of adapting an early palliative care model J Palliat Med 2019 22 9 1065 1074 10.1089/jpm.2018.0643 30969144 PMC7364320 · DOI
  13. [13]Akyar I Dionne-Odom JN Yang GM Bakitas MA Translating a US early palliative care model for Turkey and Singapore Asia Pac J Oncol Nurs 2018 5 1 33 39 29379831 PMC5763436
  14. [14]Hendricks BA Lofton C Azuero A Kenny M Taylor RA Huang CS Rocque G Williams GR Dosse C Louis K The project ENABLE cornerstone randomized pilot trial: protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers Contemp Clin Trials Commun 2019 16 100485 10.1016/j.conctc.2019.100485 31768470 PMC6872851 · DOI
  15. [15]Zubkoff L Lyons KD Dionne-Odom JN Hagley G Pisu M Azuero A Flannery M Taylor R Carpenter-Song E Mohile S A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol Implement Sci 2021 16 1 25 10.1186/s13012-021-01086-3 33706770 PMC7951124 · DOI
  16. [16]Back MF Huak CY Family centred decision making and non-disclosure of diagnosis in a South East Asian oncology practice Psychooncology 2005 14 12 1052 1059 10.1002/pon.918 15834966 · DOI
  17. [17]Lee GL Teo I Kanesvaran R The complexities of doctor–patient–family communication in an Asian oncology setting: concordance and discordance among patient preferences, family preferences, and perceived and actual communication Health Commun 2018 33 2 95 101 10.1080/10410236.2016.1239303 27902889 · DOI
  18. [18]Tay K Yu Lee RJ Sim SW Menon S Kanesvaran R Radha Krishna LK Cultural influences upon advance care planning in a family-centric society Palliat Support Care 2017 15 6 665 674 10.1017/S1478951516001139 28173885 · DOI
  19. [20]Hobbs GS Landrum MB Arora NK Ganz PA Van Ryn M Weeks JC Mack JW Keating NL The role of families in decisions regarding cancer treatments Cancer 2015 121 7 1079 1087 10.1002/cncr.29064 25708952 PMC4368490 · DOI
  20. [21]Lee SK Knobf MT Family involvement for breast cancer decision making among Chinese-American women Psychooncology 2016 25 12 1493 1499 10.1002/pon.3989 26374698 · DOI
  21. [23]Patton M Qualitative research and evaluation methods 2015 Thosand Oaks SAGE Publications
  22. [24]Tong A Sainsbury P Craig J Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups Int J Qual Health Care 2007 19 6 349 357 10.1093/intqhc/mzm042 17872937 · DOI · Paper page
  23. [27]Wang T Molassiotis A Chung BPM Tan JY Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review BMC Palliat Care 2018 17 1 96 10.1186/s12904-018-0346-9 30037346 PMC6057056 · DOI · Paper page
  24. [28]Wang T, Molassiotis A, Tan JY, Chung BPM, Huang HQ. Prevalence and correlates of unmet palliative care needs in dyads of Chinese patients with advanced cancer and their informal caregivers: a cross-sectional survey. Support Care Cancer. 2020. 32776164
  25. [29]Chong JA Quah YL Yang GM Menon S Radha Krishna LK Patient and family involvement in decision making for management of cancer patients at a centre in Singapore BMJ Support Palliat Care 2015 5 4 420 426 10.1136/bmjspcare-2012-000323 24644164 · DOI
  26. [30]Krishna LK Alsuwaigh R Miti PT Wei SS Ling KH Manoharan D The influence of the family in conceptions of personhood in the palliative care setting in Singapore and its influence upon decision making Am J Hosp Palliat Care 2014 31 6 645 654 10.1177/1049909113500136 23946254 · DOI
  27. [31]Khosla N Washington KT Mukherjea A Aslakson R Health-care providers’ perspectives on decision-making among seriously ill patients of south Asian origin in the United States J Palliat Care 2019 34 3 181 188 10.1177/0825859719829480 30808268 · DOI
  28. [32]Malhotra C Kanesvaran R Barr Kumarakulasinghe N Tan SH Xiang L Tulsky JA Pollak KI Oncologist-patient-caregiver decision-making discussions in the context of advanced cancer in an Asian setting Health Expect 2020 23 1 220 228 10.1111/hex.12994 31682064 PMC6978867 · DOI

Authors
Yang, G. M., Dionne-Odom, J. N., Foo, Y. H., Chung, A. H. M., Kamal, N. H. A., Tan, L., Yu, C. C., Khanh, L. M., Koh, A. R. X., Teo, I., Yoon, S., & Bakitas, M.
Affiliations
  • SingHealth (SG)
  • University of Alabama at Birmingham (US)
  • National University of Singapore (SG)
  • Khoo Teck Puat Hospital (SG)
  • Geriatric Education and Research Institute (SG)
  • National Cancer Centre Singapore (SG)
  • Duke-NUS Medical School (SG)
Corresponding author
Yang, Grace Meijuan
ORCID
Venue
BMC Palliative Care
Publisher
Springer Science and Business Media LLC
Published
2021-06-22
Volume
20
Issue
1
Pages
86-86
ISSN
1472-684X (ISSN-L)
DOI
10.1186/s12904-021-00799-y
PMC
PMC8218975
OpenAlex
W3177280735
Cited by
16
References
31
Citations by year
2026: 4 · 2025: 4 · 2024: 7 · 2023: 1
FWCI
1.73
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Palliative Care (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • National University of Singapore (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
  • Singapore Millennium Foundation
  • Temasek Foundation
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
Keywords
advanced cancer, family caregivers, early palliative care, nurse coaching, advance care planning, cultural acceptability, program adaptation, shared decision-making, psychosocial care, symptom management, self-care, Singapore
MeSH terms
Humans, Neoplasms, Palliative Care, Singapore, Caregivers, Qualitative Research, Hospice and Palliative Care Nursing

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review