Family members play a pivotal role in advance care planning for patients with life-limiting illnesses, particularly in Asia, where cultural values stress family-centeredness and paternalism.
Aim:
To synthesize the evidence pertaining to the extent of Asian family members’ involvement in advance care planning.
Design:
An integrative review was conducted.
Data sources:
Data sources included MEDLINE, EMBASE, CINAHL, Web of Science, PubMed, Wan Fang, China National Knowledge Infrastructure databases, Google Scholar, and Open Gray.
Results:
21 studies were included. The willingness of Asian family members to participate in advance care planning is high, while their actual engagement remains low. Based on the barriers, facilitators, and Asian family members’ roles influencing participation identified in our study, a six-dimensional conceptual model was developed: Asian family members’ roles, problem-solving skills, communication, affective responsiveness, affective participation, and controlling behavior in advance care planning. Barriers to effective participation were identified: inadequate advance care planning legislation, insufficient public education, and influences from Confucianism or traditional beliefs. Additionally, filial piety was shown to have a paradoxical effect on Asian family members’ participation in advance care planning in Asian countries.
Conclusions:
This study proposes a culturally sensitive model to illustrate family members’ participation in advance care planning in Asia. This lays a foundation to develop culturally specific interventions to enhance family participation in advance care planning in the future. We recommend that Asian governments should enact legislations, enhance public education, and incorporate cultural characteristics into relevant policy frameworks to foster greater family involvement in advance care planning.
ChengSYLinCPChanHY, et al. Advance care planning in Asian culture. Jpn J Clin Oncol2020; 50(9): 976–989.
3.
McDermottESelmanLE.Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis. J Pain Symptom Manag2018; 56(4): 613–636.
4.
FanRP.Contemporary medicine and confucianism. Xiangjiang Philosophy Series. Hong Kong: Oriental Publishing Center, 2024. vol. 16, pp.3–32.
5.
MoriMLinCPChengSY, et al. Communication in cancer care in Asia: a narrative review. J Glob Oncol2023; 9(9): e2200266.
6.
ParkJYPardosiJFIslamMS, et al. What does family involvement in care provision look like across hospital settings in Bangladesh, Indonesia, and South Korea?BMC Health Serv Res2022; 22(1): 922.
7.
ThojampaSKenje GundaB.Patient and family centered care from a South East Asian cultural perspective: a discussion. Int. J. Caring Sci2019; 12(1): 1286.
8.
WooJ.Implementing advance care planning in ’The Age of Deferred Death’- the Hong Kong experience over 4 years. J Nutr Health Aging2021; 25(4): 584–589.
9.
LuWRLiuCLZengYF, et al. The impact of family-centered advance care planning for persons with dementia and family caregivers on decision-making conflicts in end-of-life care. Hu Li Za Zhi2021; 68(1): 30–42.
10.
HuangHLLuWRLiuCL, et al. Advance care planning information intervention for persons with mild dementia and their family caregivers: impact on end-of-life care decision conflicts. PLoS One2020; 15(10): e0240684.
11.
ChanHYNgJSChanKS, et al. Effects of a nurse-led post-discharge advance care planning programme for community-dwelling patients nearing the end of life and their family members: a randomised controlled trial. Int J Nurs Stud2018; 87: 26–33.
12.
KeamBYunYHHeoDS, et al. The attitudes of Korean cancer patients, family caregivers, oncologists, and members of the general public toward advance directives. Support Care Cancer2013; 21(5): 1437–1444.
13.
BarnettVTAuroraVK.Physician beliefs and practice regarding end-of-life care in India. Indian J Crit Care Med2008; 12(3): 109–115.
14.
SyedAAAlmasANaeemQ, et al. Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: a cross-sectional study. Palliat Med2017; 31(2): 147–157.
15.
SanjoMMiyashitaMMoritaT, et al. Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan. Ann Oncol2007; 18(9): 1539–1547.
16.
ChindaprasirtJWongtirawitNLimpawattanaP, et al. Perception of a “good death” in Thai patients with cancer and their relatives. Heliyon2019; 5(7): e02067.
17.
NgRLip HoeKLimJ, et al. Advance care planning in Singapore: the genesis and evolution of a national programme. Z Evid Fortbild Qual Gesundhwes2023; 180: 99–102.
18.
MartinaDLinCPKristantiMS, et al. Advance care planning in Asia: a systematic narrative review of healthcare professionals’ knowledge, attitude, and experience. J Am Med Dir Assoc2021; 22(2): 349.e1–e28.
19.
LingDLYuHJGuoHL.Truth-telling, decision-making, and ethics among cancer patients in nursing practice in China. Nurs Ethics2019; 26(4): 1000–1008.
20.
KangLLiuXHZhangJ, et al. Attitudes toward advance directives among patients and their family members in China. J Am Med Dir Assoc2017; 18(9): 808.e7–e11.
21.
JohnsonSButowPKerridgeI, et al. Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology2016; 25(4): 362–386.
22.
KishinoMEllis-SmithCAfolabiO, et al. Family involvement in advance care planning for people living with advanced cancer: a systematic mixed-methods review. Palliat Med2022; 36(3): 464.
23.
ChenLYinGLinS, et al. The perspectives of family caregivers of people with Alzheimer’s disease regarding advance care planning in China: a qualitative research. BMC Psychiatry2022; 22(1).
PageMJMcKenzieJEBossuytPM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ2021; 372: n71.
26.
CookeASmithDBoothA.Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res2012; 22(10): 1435–1443.
27.
BoydenJYCurleyMAQDeatrickJA, et al. Factors associated with the use of U.S. community-based palliative care for children with life-limiting or life-threatening illnesses and their families: an integrative review. J Pain Symptom Manag2018; 55(1): 117–131.
28.
ZwakmanMJabbarianLJvan DeldenJ, et al. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med2018; 32(8): 1305–1321.
29.
MetzgerE.Advances in advance directives. Am J Geriatr Psychiatry2022; 30(5): 624–626.
30.
MartinaDGeerseOPLinCP, et al. Asian patients’ perspectives on advance care planning: a mixed-method systematic review and conceptual framework. Palliat Med2021; 35(10): 1776–1792.
31.
KmetLMCookLSLeeRC.Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Found Med Res2004; 13(4): 31.
32.
HopiaHLatvalaELiimatainenL.Reviewing the methodology of an integrative review. Scand J Caring Sci2016; 30(4): 662–669.
33.
DhollandeSTaylorAMeyerS, et al. Conducting integrative reviews: a guide for novice nursing researchers. J Res Nurs2021; 26(5): 439–438.
34.
CreswellJW.Research design: qualitative, quantitative and mixed methods approaches research design: qualitative, quantitative and mixed methods approaches. Nurse Res2004; 12(1): 82–83.
35.
ThomasJHardenA.Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol2008; 8: 45.
36.
EpsteinNBBishopDSLevinS.The McMaster model of family functioning. J Marriage Fam Couns1978; 4(4): 19–31.
37.
FifeSTGossnerJD.Deductive qualitative analysis: evaluating, expanding, and refining theory. Int J Qual Methods2024; 23: 16094069241244856.
38.
NaeemMOzuemWHowellK, et al. A step-by-step process of thematic analysis to develop a conceptual model in qualitative research. Northumbria University Res Portal2023; 22: 16094069231205789.
39.
O’BrienBCHarrisIBBeckmanTJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med2014; 89(9): 1245–1251.
40.
ChuangIFShyuYLWengL-C, et al. Consistency in end-of-life care preferences between hospitalized elderly patients and their primary family caregivers. Patient Prefer Adherence2020; 14: 2377–2387.
41.
FangYCPaiMCWangLC, et al. Factors influencing family surrogates‘intention with regard to do-not-resuscitate directive for patients with dementia. Clin Gerontol2019; 42(5): 495–503.
42.
FengCWuJLiJ, et al. Advance directives of lung cancer patients and caregivers in China: a cross sectional survey. Thorac Cancer2020; 11(2): 253–263.
43.
MoriMYoshidaSShiozakiM, et al. What I did for my loved one is more important than whether we talked about Death: A nationwide survey of bereaved family members. J Palliat Med2018; 21(3): 335–341.
44.
ParkHYKimYASimJA.Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: a nationwide survey before the enforcement of the life-sustaining treatment decision-making act. J Pain Symptom Manag2019; 57(1): 188–282.
45.
SrinonprasertVManjavongMLimpawattanaP, et al. A comparison of preferences of elderly patients for end-of-life period and their relatives’ perceptions in Thailand. Arch Gerontol Geriatr2019; 84: 103892.
46.
YamamotoSAraoHMasutaniE, et al. Decision making regarding the place of end-of-life cancer care: the burden on bereaved families and related factors. J Pain Symptom Manag2017; 53(5): 862–870.
47.
YangCLChiuTYHsiungYF, et al. Which factors have the greatest influence on bereaved families’ willingness to execute advance directives in Taiwan?Cancer Nurs2011; 34(2): 98–106.
48.
YooSHLeeJKangJH, et al. Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members. Support Care Cancer2020; 28(6): 2959–2967.
49.
YufangLJianyingZJianL.Investigation on the attitudes and influencing factors of medical staff and patients towards implementing advance care planning. J Nurs2014; 21 (16): 21–24.
50.
ZhouWMaoJWenQ, et al. Study on consistency of attitudes towards advance directives among patients with advanced cancer and their family members. Chin J Nurs2018; 53(8): 27–32.
51.
ZhouYYLvQXZhaoRF.Survey on the knowledge and attitudes towards advance care planning among primary caregivers of patients with chronic heart failure. Prev Treat Cereb Dis2023; 23(3): 61–64.
52.
CheungJTKAuDIpAHF, et al. Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families. BMC Palliat Care2020; 19(1): 80.
53.
DingCQJinJFLanMJ, et al. Do-not-resuscitate decision making for terminally ill older patients in the emergency department: an explorative, descriptive inquiry of Chinese family members. Geriatr Nurs2021; 42(4): 843–849.
54.
LinCPEvansCJKoffmanJ, et al. What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals. Palliat Med2019; 33(10): 1299–1309.
55.
MartinaDKustantiCYDewantariR, et al. Advance care planning for patients with cancer and family caregivers in Indonesia: a qualitative study. BMC Palliat Care2022; 21(1): 204.
56.
NgRChanSNgTW, et al. An exploratory study of the knowledge, attitudes and perceptions of advance care planning in family caregivers of patients with advanced illness in Singapore. BMJ Support Palliat Care2013; 3(3): 343–348.
57.
LinCPEvansCJKoffmanJ, et al. Feasibility and acceptability of a culturally adapted advance care planning intervention for people living with advanced cancer and their families: a mixed methods study. Palliat Med2020; 34(5): 651–666.
58.
PettigrewCBrichkoRBlackB, et al. Attitudes toward advance care planning among persons with dementia and their caregivers. Int Psychogeriatr2020; 32(5): 585–599.
59.
YadavKNGablerNBCooneyE, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff2017; 36(7): 1244–1251.
60.
KimYJKimSH.Advance care planning in South Korea. Z Evid Fortbild Qual Gesundhwes2023; 180: 68–73.
61.
WangY.Advance care planning in Taiwan. Z Evid Fortbild Qual Gesundhwes2023; 180: 107–110.
62.
PairojkulSRaksasatayaASorasitC, et al. Thailand’s experience in advance care planning. Z Evid Fortbild Qual Gesundhwes2023; 180: 85–89.
63.
ChanCWHChenYFChanHYL.Advance care planning in Hong Kong. Z Evid Fortbild Qual Gesundhwes2023; 180: 90–93.
64.
MiyashitaJShimizuSShiraishiR, et al. Culturally adapted consensus definition and action guideline: Japan’s advance care planning. J Pain Symptom Manag2022; 64(6): 602–613.
65.
CarrDLuthEA.Advance care planning: contemporary issues and future directions. Innov Aging2017; 1(1): igx012.
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