Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Health Outcomes: A Scoping Review
Restricted accessResearch articleFirst published online October, 2024
Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Health Outcomes: A Scoping Review
There is a need for patient-provider dissemination and implementation frameworks, strategies, and protocols in palliative care settings for a holistic approach when it comes to addressing pain and other distressing symptoms affecting the quality of life, function, and independence of patients with chronic illnesses. The purpose of this scoping review is to explore patient-centered D&I frameworks and strategies that have been adopted in PC settings to improve behavioral and environmental determinants influencing health outcomes through evidence-based programs and protocols.
Methods
The five step Arksey and O’Malley’s (2005) York methodology was adopted as a guiding framework: (1) identifying research questions; (2) searching for relevant studies; (3) selecting studies relevant to the research questions; (4) charting the data; and (5) collating, summarizing, and reporting results.
Results
Only 6 out of the 38 (16%) included studies applied a D&I theory and/or framework. The RE-AIM framework was the most prominently cited (n = 3), followed by the Diffusion of Innovation Model (n = 2), the CONNECT framework (n = 1), and the Transtheoretical Stages of Change Model (n = 1). The most frequently reported ERIC strategy was strategy #6 “Develop and organize quality monitoring systems”, as it identified in all 38 of the included studies.
Conclusion
This scoping review identifies D&I efforts to translate research into practice in U.S. palliative care settings. Results may contribute to enhancing future D&I initiatives for dissemination/adaptation, implementation, and sustainability efforts aiming to improve patient health outcomes and personal satisfaction with care received.
TemelJSGreerJAMuzikanskyA, et al.Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. doi:10.1056/nejmoa1000678
2.
SmithSBrickAO’HaraSNormandC. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2014;28(2):130-150. doi:10.1177/0269216313493466
3.
SilversASinclairSMeierDE. Achieving value through palliative care. Am J Manag Care. 2016;22(16).
4.
Palliative care, report card. Palliative care, report card. Published August 18, 2015. Accessed January 12, 2023.https://reportcard.capc.org/
5.
El-JawahriALeBlancTVanDusenH, et al.Effect of inpatient palliative care on quality of life 2 weeks after hematopoietic stem cell transplantation: A randomized clinical trial. JAMA. 2016;316(20):2094-2103. doi:10.1001/jama.2016.16786
6.
BakitasMATostesonTDLiZ, et al.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. doi:10.1200/JCO.2014.58.6362
7.
RogersJGPatelCBMentzRJ, et al.palliative care in heart failure: The PAL-HF randomized, controlled clinical trial. J Am Coll Cardiol. 2017;70(3):331-341. doi:10.1016/j.jacc.2017.05.030
8.
KeeleyM. Family communication at the end of life. Behav Sci (Basel). 2017;7(4):45. doi:10.3390/bs7030045
9.
RamanayakeRPJCDilankaGVAPremasiriLWSS. Palliative care; role of family physicians. J Family Med Prim Care. 2016;5(2):234-237. doi:10.4103/2249-4863.192356
10.
BeernaertKVan den BlockLVan ThienenK, et al.Family physicians’ role in palliative care throughout the care continuum: stakeholder perspectives. Fam Pract. 2015;32(6):694-700. doi:10.1093/fampra/cmv072
11.
AslaksonRACurtisJRNelsonJE. The changing role of palliative care in the ICU. Crit Care Med. 2014;42(11):2418-2428. doi:10.1097/CCM.0000000000000573
12.
LamoreKMontalescotLUntasA. Treatment decision-making in chronic diseases: What are the family members’ roles, needs and attitudes? A systematic review. Patient Educ Couns. 2017;100(12):2172-2181. doi:10.1016/j.pec.2017.08.003
13.
VedelIGhadiVLapointeLRoutelousCAegerterPGuirimandF. Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study. Palliat Med. 2014;28(9):1128-1138. doi:10.1177/0269216314532154
14.
KaasaSLogeJHAaproM, et al.Integration of oncology and palliative care: A lancet oncology commission. Lancet Oncol. 2018;19(11):e588-e653. doi:10.1016/S1470-2045(18)30415-7
15.
MehtaAChanLSCohenSR. Flying blind: sources ofdistress for family caregivers of palliative cancer patientsmanaging pain at home. Journal of Psychosocial. 2014;32(1):94-111.
16.
FerrellBBornemanTThaiC. Family caregiving InHospitals and Palliative care units. Family Carers in PalliativeCare: A Guide for Health and Social Care Professionals. Oxford: Oxford University Press; 2008.
17.
StajduharKCohenR. Family Caregiving at Home.Family Carers in Palliative Care: A Guide for Health and SocialCare Professionals. Oxford: Oxford University Press; 2008.
18.
Nedjat-HaiemFRCarrionIVGonzalezKEllKThompsonBMishraSI. Exploring health care providers’ views about initiating end-of-life care communication. Am J Hosp Palliat Care. 2017;34(4):308-317. doi:10.1177/1049909115627773
19.
HertlerCEiseleGGramatzkiD, et al.End-of-life care for glioma patients; the caregivers’ perspective. J Neuro Oncol. 2020;147(3):663-669. doi:10.1007/s11060-020-03471-2
20.
FerrellBRChungVKoczywasMSmithTJ. Dissemination and implementation of palliative care in oncology. J Clin Oncol. 2020;38(9):995-1001. doi:10.1200/JCO.18.01766
21.
FerrellBRTemelJSTeminS, et al.Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2017;35(1):96-112. doi:10.1200/JCO.2016.70.1474
22.
TabakRGKhoongECChambersDABrownsonRC. Bridging research and practice: Models for dissemination and implementation research. Am J Prev Med. 2012;43(3):337-350. doi:10.1016/j.amepre.2012.05.024
23.
WandersmanADuffyJFlaspohlerP, et al.Bridging the gap between prevention research and practice: The interactive systems framework for dissemination and implementation. Am J Community Psychol. 2008;41(3-4):171-181. doi:10.1007/s10464-008-9174-z
24.
NilsenP. Making sense of implementation theories, models and frameworks. Implement Sci. 2015;10(1):53. doi:10.1186/s13012-015-0242-0
DietzWHBrownsonRCDouglasCEDreyzehnerJJGoetzelRZ. Chronic Disease Prevention: Tobacco, Physical Activity, and Nutrition for a Healthy Start: A Vital Direction for Health and Health Care. Washington, DC: NAM Perspectives, Discussion Paper.; 2016.
27.
MazzuccaSArredondoEMHoelscherDM, et al.Expanding implementation research to prevent chronic diseases in community settings. Annu Rev Public Health. 2021;42(1):135-158. doi:10.1146/annurev-publhealth-090419-102547
SaccaLShegogRHernandezB, et al.Barriers, frameworks, and mitigating strategies influencing the dissemination and implementation of health promotion interventions in indigenous communities: A scoping review. Implement Sci. 2022;17(1):18. doi:10.1186/s13012-022-01190-y
30.
JerniganVAmicoDKeaweEJKaholokula. Prevention research with indigenous communities to expedite dissemination and implementation efforts. Prev Sci. 2020;21(1):74-82.
31.
VillanuevaMToniganJSMillerWR. Response of native American clients to three treatment methods for alcohol dependence. J Ethn Subst Abuse. 2007;6(2):41-48. doi:10.1300/J233v06n02_04
32.
JerniganVBB. Community-based participatory research with native American communities: The chronic disease self-management program. Health Promot Pract. 2010;11(6):888-899. doi:10.1177/1524839909333374
33.
KaholokulaJKWilsonRETownsendCKM, et al.Translating the diabetes prevention program in native Hawaiian and pacific islander communities: The PILI ‘Ohana project. Transl Behav Med. 2014;4(2):149-159. doi:10.1007/s13142-013-0244-x
34.
ProctorEKPowellBJMcMillenJC. Implementation strategies: Recommendations for specifying and reporting. Implement Sci. 2013;8(1):139. doi:10.1186/1748-5908-8-139
35.
CookCRLyonARLockeJWaltzTPowellBJ. Adapting a compilation of implementation strategies to advance school-based implementation research and practice. Prev Sci. 2019;20(6):914-935. doi:10.1007/s11121-019-01017-1
36.
LouridaIAbbottRARogersM, et al.Dissemination and implementation research in dementia care: A systematic scoping review and evidence map. BMC Geriatr. 2017;17(1). doi:10.1186/s12877-017-0528-y
37.
KhoshnazarTAKRassouliMAkbariME, et al.Structural challenges of providing palliative care for patients with breast cancer. Indian J Palliat Care. 2016;22(4):459-466. doi:10.4103/0973-1075.191828
38.
DemirisGParker OliverDCapurroDWittenberg-LylesE. Implementation science: Implications for intervention research in hospice and palliative care. Gerontol. 2014;54(2):163-171. doi:10.1093/geront/gnt022
39.
PrihodovaLGuerinSKernohanWG. Knowledge transfer and exchange frameworks in health and their applicability to palliative care: Scoping review protocol. J Adv Nurs. 2015;71(7):1717-1725. doi:10.1111/jan.12642
40.
MularskiRADySMShugarmanLR, et al.A systematic review of measures of end-of-lifecare and its outcomes. Health Services. 2007;42(5):1848-1870.
41.
KutnerJS. A significant milestone for palliative care:imperative for dissemination and implementation research. Journal of Palliative. 2011;14(11):1194-1195.
42.
UnroeKTMeierDE. Research priorities in geriatricpalliative care: Policy initiatives. Journal of Palliative Medicine. 2013;16(12):1503-1508.
43.
TriccoACLillieEZarinW, et al.PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467-473. doi:10.7326/M18-0850
44.
ArkseyHO’MalleyL. Scoping studies: Towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. doi:10.1080/1364557032000119616
45.
OuzzaniMHammadyHFedorowiczZElmagarmidA. Rayyan—a web and mobile app for systematic reviews. Syst Rev. 2016;5(1). doi:10.1186/s13643-016-0384-4
46.
DahlbergLLKrugEGKrugE, et al.Violence-A global public health problem. Ciênc. Saúde Colet. 2002;11(2):1-56.
47.
AldridgeMDHasselaarJGarraldaE, et al.Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliat Med. 2016;30(3):224-239. doi:10.1177/0269216315606645
48.
O’MaraAMGermainSDFerrellBBornemannT. Challenges to and lessons learned from conducting palliative care research. J Pain Symptom Manage. 2009;37(3):387-394. doi:10.1016/j.jpainsymman.2008.03.014
49.
NorthouseLLKatapodiMCSongLZhangLMoodDW. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010;60(5):317-339. doi:10.3322/caac.20081
50.
BeneschTDMooreJEBreyreAM, et al.Primary palliative care education in emergency medicine residency: A mixed-methods analysis of a yearlong, multimodal intervention. AEM Educ Train. 2022;6(6):e10823. doi:10.1002/aet2.10823
51.
CasselJBBowmanBRogersMSpragensLHMeierDE. Palliative care leadership centers. Palliative care leadership centers are key to the diffusion of palliative care innovation. Health Aff. 2018;37(2):231-239. doi:10.1377/hlthaff.2017.1122
52.
BeckerCLArnoldRMParkSY, et al.A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations. Contemp Clin Trials. 2017;54:98-104. doi:10.1016/j.cct.2017.01.005
53.
FrendakLSWrightSMWuDS. The effect of a standardized triage process on efficiency and productivity of an inpatient palliative care team. Am J Hosp Palliat Care. 2020;37(6):413-417. doi:10.1177/1049909119876928
54.
DiMartinoLDWeinerBJHansonLC, et al.The impact of two triggered palliative care consultation approaches on consult implementation in oncology. Healthc (Amst). 2019;7(1):38-43. doi:10.1016/j.hjdsi.2017.12.001
55.
KamalAHKirklandKBMeierDEMorganTSNelsonECPantilatSZ. A person-centered, registry-based learning health system for palliative care: A path to coproducing better outcomes, experience, value, and science. J Palliat Med. 2018;21(S2):S61-S67. doi:10.1089/jpm.2017.0354
56.
Kataoka-YahiroMRMcFarlaneSKoijaneJLiD. Culturally competent palliative and hospice care training for ethnically diverse staff in long-term care facilities. Am J Hosp Palliat Care. 2017;34(4):335-346. doi:10.1177/1049909116638347
57.
KayeECRubensteinJLevineDBakerJNDabbsDFriebertSE. Pediatric palliative care in the community: Community pediatric palliative care. CA Cancer J Clin. 2015;65(4):316-333. doi:10.3322/caac.21280
58.
KoblerKLimboR. Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. J Perinat Neonatal Nurs. 2011;25(1):32-41. doi:10.1097/JPN.0b013e3181fb592e
59.
MaxwellTLHanlonALNaylorMD. A systematized approach to advancing the quality of community-based palliative care. Am J Hosp Palliat Care. 2022;39(8):951-955. doi:10.1177/10499091211065173
60.
McAndrewNSGuttormsonJMarksSRhodesMPatelJMcCrackenC. Intensive care unit nurse: could we call a palliative care consult? Intensive care unit provider: It’s too early. Palliative care integration in the intensive care unit: The struggle to translate evidence into practice. Dimens Crit Care Nurs. 2021;40(1):51-58. doi:10.1097/DCC.0000000000000451
61.
LafondDABowlingSFortkiewiczJMReggioCHindsPS. Integrating the Comfort TheoryTM into pediatric primary palliative care to improve access to care. J Hosp Palliat Nurs. 2019;21(5):382-389. doi:10.1097/NJH.0000000000000538
62.
PfeiferMPRitchieCScharfenbergerJ, et al.The caring connections project: Providing palliative care to Medicaid patients with advanced cancer. Lippincott’s Case Manag. 2006;11(6):318-326. doi:10.1097/00129234-200611000-00007
63.
RequenaMLAveryMFeracoAMUzalLGWolfeJDusselV. Normalization of symptoms in advanced child cancer: The PediQUEST-response case study. J Pain Symptom Manage. 2022;63(4):548-562. doi:10.1016/j.jpainsymman.2021.12.009
64.
RushtonCH. A framework for integrated pediatric palliative care: Being with dying. J Pediatr Nurs. 2005;20(5):311-325. doi:10.1016/j.pedn.2005.03.003
65.
SalekMWoodsCGattasM, et al.Multidisciplinary clinician perspectives on embedded palliative care models in pediatric cancer. J Pain Symptom Manage. 2022;64(3):222-233. doi:10.1016/j.jpainsymman.2022.05.019
66.
SilerSMamierIWinslowB. The perceived facilitators and challenges of translating a lung cancer palliative care intervention into community-based settings. J Hosp Palliat Nurs. 2018;20(4):407-415. doi:10.1097/njh.0000000000000470
67.
ZubkoffLDionne-OdomJNPisuM, et al.Developing a “toolkit” to measure implementation of concurrent palliative care in rural community cancer centers. Palliat Support Care. 2018;16(1):60-72. doi:10.1017/s1478951517000323
68.
WallingAMD’AmbruosoSFMalinJL, et al.Effect and efficiency of an embedded palliative care nurse practitioner in an oncology clinic. J Oncol Pract. 2017;13(9):e792-e799. doi:10.1200/jop.2017.020990
69.
WienerLShaw WeaverMSansom DalyUMBellCJ. Threading the cloak: Palliative care education for care providers of adolescents and young adults with cancer. Clin Oncol Adolesc Young Adults2015;5(5):1-18. doi:10.2147/coaya.s49176
70.
YabroffKRMandelblattJSInghamJ. The quality of medical care at the end-of-life in the USA: Existing barriers and examples of process and outcome measures. Palliat Med. 2004;18(3):202-216. doi:10.1191/0269216304pm880oa
71.
WengKShearerJGrangaard JohnsonL. Developing successful palliative care teams in rural communities: A facilitated process. J Palliat Med. 2022;25(5):734-741. doi:10.1089/jpm.2021.0287
72.
BakitasMChevilleALMulveyTMPeppercornJWattsKDionne-OdomJN. Telehealth strategies to support patients and families across the cancer trajectory. Am Soc Clin Oncol Educ Book. 2021;41(41):413-422. doi:10.1200/EDBK_320979
73.
FinlayERabowMWBussMK. Filling the gap: Creating an outpatient palliative care program in your institution. Am Soc Clin Oncol Educ Book. 2018;38(38):111-121. doi:10.1200/EDBK_200775
74.
LamDYSchererJSBrownMGrubbsVSchellJO. A conceptual framework of palliative care across the continuum of advanced kidney disease. Clin J Am Soc Nephrol. 2019;14(4):635-641. doi:10.2215/CJN.09330818
75.
HuangICWenPSRevickiDAShenkmanEA. Quality of life measurement for children with life-threatening conditions: Limitations and a new framework. Child Indic Res. 2011;4(1):145-160. doi:10.1007/s12187-010-9079-x
76.
FeudtnerC. Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision-making. Pediatr Clin North Am. 2007;54(5):583-607. doi:10.1016/j.pcl.2007.07.008
77.
IsaacsonMKarelBVarilekBMSteenstraWJTanis-HeyengaJPWagnerA. Insights from health care professionals regarding palliative care options on South Dakota reservations. J Transcult Nurs. 2015;26(5):473-479. doi:10.1177/1043659614527623
HuttEAlbrightKDischingerHWeberMJonesJO’TooleTP. Addressing the challenges of palliative care for homeless veterans. Am J Hosp Palliat Care. 2018;35(3):448-455. doi:10.1177/1049909117722383
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