This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies (N = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse–patient interactions. Family engagement is distinguished by a mutually beneficial partnership of families with health care team members and care organizations. Future research in the area of family engagement in pediatric nursing should focus on determining the core engaging health professional behaviors and engaged parent outcomes; extending the knowledge base related to mutually beneficial partnerships between families and health care teams; developing effectiveness studies to determine the optimal engaging actions by teams to achieve parent engagement; and measuring the influence of engagement on parent and infant/child outcomes.
AbdelkaderR.ArabiatD.H.HolmesS.L.Hamdan-MansourA. (2016). Socio-demographic correlates of parents’ participation in care of a hospitalized child: A perspective from a developing country. Journal of Child Health Care: For Professionals Working with Children in the Hospital and Community, 20(3), 374–383. https://doi.org/10/1177/1367493515598650
2.
Abdel-LatifM. E.BoswellD.BroomM.SmithJ.DavisD. (2015). Parental presence on neonatal intensive care unit clinical bedside rounds: Randomised trial and focus group discussion. Archives of Disease in Childhood: Fetal and Neonatal Edition, 100(3), F203–F209. https://doi.org/10.1136/archdischild-2014-306724
3.
AeinF.AlhaniF.MohammadiE.KazemnejadA. (2011). Struggling to create new boundaries: A grounded theory study of collaboration between nurses and parents in the care process in Iran. Journal of Advanced Nursing, 67(4), 841–853. https://doi.org/10.1111/j.1365-2648.2010.05515.x
American Academy of Pediatrics. (2012). Patient and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. http://doi.org/10.1542/peds.2011-3084
7.
ArkseyH.O’MalleyL. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. http://doi.org/10.1080/1364557032000119616
8.
AshcraftL. E.AsatoM.HoutrowA. J.KavalieratosD.MillerE.RayK. N. (2019). Parent empowerment in pediatric healthcare settings: A systematic review of observational studies. The Patient—Patient-Centered Outcomes Research, 12(2), 199–212. https://doi.org/10.1007/s40271-018-0336-2
9.
BastaniF.AbadiT. A.HaghaniH. (2015). Effect of family-centered care on improving parental satisfaction and reducing readmission among premature infants: A randomized controlled trial. Journal of Clinical and Diagnostic Research, 9(1), SC04–SC08. https://doi.org/10.7860/jcdr/2015/10356.5444
10.
BavareA. C.ThomasJ. K.ElliottE. P.MorganA. C.GrafJ. M. (2018). Family-initiated pediatric rapid response: Characteristics, impetus, and outcomes. Journal for Healthcare Quality: Promoting Excellence in Healthcare, 40(2), 103–109. https://doi.org/10.1097/jhq.0000000000000096
11.
BenziesK. M. (2016). Relational communications strategies to support family-centered neonatal intensive care. The Journal of Perinatal & Neonatal Nursing, 30(3), 233–236. https://doi.org/10.1097/jpn.0000000000000195
12.
BourdieuP. (1990). The logic of practice. Stanford University Press.
13.
BrachtM.O’LearyL.LeeS. K.O’BrienK. (2013). Implementing family-integrated care in the NICU: A parent education and support program. Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses, 13(2), 115–126. https://doi.org/10.1097/ANC.0b013e318285fb5b
14.
BrosseauM.GagnonD.RohdeK.SchellinckJ. (2017). Integrating engagement and improvement work in a pediatric hospital. Healthcare Quarterly, 20(1), 67–72. https://doi.org/10.12927/hcq.2017.25071
15.
CarmanK. L.DardessP.MaurerM.SofaerS.AdamsK.BechtelC.SweeneyJ. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs, 32(2), 223–231. https://doi.org/10.1377/hlthaff.2012.1133
16.
CelenzaJ. F.ZayackD.Buus-FrankM.HorbarJ. D. (2017). Family involvement in quality improvement: From bedside advocate to system advisor. Clinics in Perinatology, 44(3), 553–566. https://doi.org/10.1016/j.clp.2017.05.008
17.
CenéC. W.JohnsonB. H.WellsN.BakerB.DavisR.TurchiR. (2016). A narrative review of patient and family engagement: The “foundation” of the medical “home.”Medical Care, 54(7), 697–705. https://doi.org/10.1097/MLR.0000000000000548
18.
ChadwickS.MillerD. (2019). The impact of patient and family advisors in one hospital system. Pediatric Nursing, 45(1), 42–46.
19.
CoombsM.PuntilloK. A.FranckL. S.ScruthE. A.HarveyM. A.SwobodaS. M.DavidsonJ. E. (2017). Implementing the SCCM family-centered care guidelines in critical care nursing practice. AACN Advanced Critical Care, 28(2), 138–147. https://doi.org/10.4037/aacnacc2017766
20.
CoxE. D.JacobsohnG. C.RajamanickamV. P.CarayonP.KellyM. M.WetterneckT. B.RathouzP. J.BrownR. L. (2017). A family-centered rounds checklist, family engagement, and patient safety: A randomized trial. Pediatrics, 139(5), Article e20161688. https://doi.org/10.1542/peds.2016-1688
21.
CraigJ.W.GlickC.PhillipsR.HallS.L.SmithJ.BrowneJ. (2015). Recommendations for involving the family in developmental care of the NICU baby. Journal of Perinatology: Official Journal of the California Perinatal Association, 35(Supp1), S5–S8. https://doi.org/10.1038/jp.2015.142
22.
DavidsonJ. E.AslaksonR.LongA. C.PuntilloK. A.KrossE. K.HartJ.CoxC. E.WunschH.WicklineM. A.NunnallyM. E.NetzerG.Kentish-BarnesN.SprungC. L.HartogC. S.CoombsM.GerritsenR. T.HopkinsR. O.FranckL. S.SkrobikY.. . . CurtisJ. R. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. https://doi.org/10.1097/CCM.0000000000002169
23.
DaviesB.SteeleR.KruegerG.AlbersheimS.BairdJ.BifirieM.CadellS.DoaneG.GargaD.SidenH.StrahlendorfC.ZhaoY. (2017). Best practice in provider/parent interaction. Qualitative Health Research, 27(3), 406–420. https://doi.org/10.1177/1049732316664712
24.
De BernardoG.SveltoM.GiordanoM.SordinoD.RiccitelliM. (2017). Supporting parents in taking care of their infants admitted to a neonatal intensive care unit: A prospective cohort pilot study. Italian Journal of Pediatrics, 43(1), Article 36. https://doi.org/10.1186/s13052-017-0352-1
25.
de Oliveira AlvesJ. M. N.AmendoeiraJ. J. P.CharepeZ. B. (2017). The parental care partnership in the view of parents of children with special health needs. Revista Gaucha de Enfermagem, 38(4), e2016–e2070. https://doi.org/10.1590/1983-1447.2017.04.2016-0070
26.
EverhartJ. L.HaskellH.KhanA. (2019). Patient- and family-centered care: Leveraging best practices to improve the care of hospitalized children. Pediatric Clinics of North America, 66(4), 775–789. https://doi.org/10.1016/j.pcl.2019.03.005
27.
FosterM.WhiteheadL.ArabiatD.FrostL. (2018). Parents’ and staff perceptions of parental needs during a child’s hospital admission: An Australian study. Journal of Pediatric Nursing, 43, e2–e9. https://doi.org/10.1016/j.pedn.2018.06.013
28.
FranckL. S.O’BrienK. (2019). The evolution of family-centered care: From supporting parent-delivered interventions to a model of family integrated care. Birth Defects Research, 111(15), 1044–1059. https://doi.org/10.1002/bdr2.1521
GrumanJ.RovnerM.H.FrenchM.E.JeffressD.SofaerS.ShallerD.PragerD.J. (2010). From patient education to patient engagement: Implications for the field of patient education. Patient Education and Counseling, 78(3). 350–356. https://doi.org/10.1016/j.pec.2010.02.002
31.
HeS. W.XiongY. E.ZhuL. H.LvB.GaoX. R.XiongH.WangH.ShiH. R.LatourJ. M. (2018). Impact of family integrated care on infants’ clinical outcomes in two children’s hospitals in China: A pre-post intervention study. Italian Journal of Pediatrics, 44(1), 65. https://doi.org/10.1186/s13052-018-0506-9
32.
HeoY. J.OhW. O. (2019). The effectiveness of a parent participation improvement program for parents on partnership, attachment infant growth in a neonatal intensive care unit: A randomized controlled trial. International Journal of Nursing Studies, 95, 19–27. https://doi.org/10.1016/j.ijnurstu.2019.03.018
33.
HernandezN. L.Rubio GrilloM. H.LoveraA. (2016). Estrategias para el cuidado del desarrollo neonatal y el cuidado neonatal centrado en la familia [Strategies for neonatal developmental care and family-centered neonatal care]. Investigacion y Educacion en Enfermeria, 34(1), 104–112. https://doi.org/10.17533/udea.iee.v34n1a12
34.
HigginsT.LarsonE.SchnallR. (2017). Unraveling the meaning of patient engagement: A concept analysis. Patient Education and Counseling, 100(1), 30–36. https://doi.org/10.1016/j.pec.2016.09.002
35.
HillC.KnaflK. A.SantacroceS. J. (2018). Family-centered care from the perspective of parents of children cared for in a pediatric intensive care unit: An integrative review. Journal of Pediatric Nursing, 41, 22–33. https://doi.org/10.1016/j.pedn.2017.11.007
JacksonG.O.RobinsonJ.R.IngramE.MastermanM.IvoryC.HollowayD.AndersS.CroninR.M. (2018). A technology-based patient and family engagement consult service for the pediatric hospital setting. Journal of the American Medical Informatics Association: JAMIA, 25(2), 167–174.
39.
Jerofke-OwenT. A.Garnier-VillarealM.FialA.TobianoG. (2020). Systematic review of psychometric properties of instruments measuring patient preferences for engagement in healthcare. Journal of Advanced Nursing, 76(8), 1988–2004. https://doi.org/10.1111/jan.14402
40.
JohnsonB. H.AbrahamM. R. (2012). Partnering with patients, residents, and families: A resource for leaders of hospitals, ambulatory care settings, and long-term care communities. Institute for Patient and Family-Centered Care.
KellyM. M.DeanS. M.CarayonP.WetterneckT. B.HoonakkerP. L. (2017). Healthcare team perceptions of a portal for parents of hospitalized children before and after implementation. Applied Clinical Informatics, 8(1), 265–278. https://doi.org/10.4338/ACI-2016-11-RA-0194
43.
KellyM. M.HoonakkerP. L.DeanS. M. (2017). Using an inpatient portal to engage families in pediatric hospital care. Journal of the American Medical Informatics Association, 24(1), 153–161. https://doi.org/10.1093/jamia/ocw070
44.
KhanA.SpectorN. D.BairdJ. D.AshlandM.StarmerA. J.RosenbluthG.GarciaB. M.LittererK. P.RogersJ. E.DalalA. K.LipsitzS.YoonC. S.ZigmontK. R.GuiotA.O’TooleJ. K.PatelA.BismillaZ.CoffeyM.LangrishK.. . . LandriganC. P. (2018). Patient safety after implementation of a coproduced family centered communication programme: Multicenter before and after intervention study. British Medical Journal, 363, Article k4764. https://doi.org/10.1136/bmj.k4764
45.
KleinpellR.HeylandD. K.LipmanJ.SprungC. L.LevyM.MerM.KohY.DavidsonJ.TahaA.CurtisJ. R. (2018). Patient and family engagement in the ICU: Report from the task force of the World Federation of Societies of Intensive and Critical Care Medicine. Journal of Critical Care, 48, 251–256. https://doi.org/10.1016/j.jcrc.2018.09.006
46.
KokoreliasK. M.GignacM. A. M.NaglieG.CameronJ. I. (2019). Towards a universal model of family centered care: A scoping review. BMC Health Services Research, 19, Article 564. https://doi.org/10.1186/s12913-019-4394-5
47.
KrisnanaI.SulistyariniH.RachmawatiP.D.AriefY.S.KurniaI.D. (2019). Reducing acute stress disorders in mothers of leukemic children by means of the family centered empowerment module (face). Central European Journal of Nursing& Midwifery, 10(2), 1035–1040. https://doi.org/10.15452/CEJNM.2019.10.0011
48.
KuoD.Z.SisterhenL.L.SigrestT.E.BiazoJ.M.AitkenM.E.SmithC.E. (2012). Family experiences and pediatric health services use associated with family-centered rounds. Pediatrics, 130(2), 299–305. https://doi.org/10.1542/peds.2011-2623
49.
LadakL. A.PremjiS. S.AmanullahM. M.HaqueA.AjaniK.SiddiquiF. J. (2013). Family-centered rounds in Pakistani pediatric intensive care settings: Non-randomized pre- and post-study design. International Journal of Nursing Studies, 50(6), 717–726. https://doi.org/10.1016/j.ijnurstu.2012.05.009
50.
LeeT. Y.WangM. M.LinK. C.KaoC. H. (2013). The effectiveness of early intervention on paternal stress for fathers of premature infants admitted to a neonatal intensive care unit. Journal of Advanced Nursing, 69(5), 1085–1095. https://doi.org/10.1111/j.1365-2648.2012.06097.x
51.
LeGrowK.HodnettE.StremlerR.CohenE. (2014). Evaluating the feasibility of a parent-briefing intervention in a pediatric acute care setting. Journal for Specialists in Pediatric Nursing: JSPN, 19(3), 219–228. https://doi.org/10.1111/jspn.12073
52.
LesterB. M.HawesK.AbarB.SullivanM.MillerR.BigsbyR.LaptookA.SalisburyA.TaubM.LagasseL. L.PadburyJ. F. (2014). Single-family room care and neurobehavioral and medical outcomes in preterm infants. Pediatrics, 134(4), 754–760. https://doi.org/10.1542/peds.2013-4252
53.
LvB.GaoX. R.SunJ.LiT. T.LiuZ. Y.ZhuL. H.LatourJ. M. (2019). Family-centered care improves clinical outcomes of very-low-birth-weight infants: A quasi-experimental study. Frontiers in Pediatrics, 7, Article 138. https://doi.org/10.3389/fped.2019.00138
54.
MannD. (2016). Design, implementation, and early outcome indicators of a new family-integrated neonatal unit. Nursing for Women’s Health, 20(2), 158–166. https://doi.org/10.1016/j.nwh.2016.01.007
55.
MannixT.ParryY.RoderickA. (2017). Improving clinical handover in a paediatric ward: Implications for nursing management. Journal of Nursing Management, 25(3), 215–222. https://doi.org/10.1111/jonm.12462
56.
MastroK. A.FlynnL.PreusterC. (2014). Patient- and family-centered care: A call to action for new knowledge and innovation. The Journal of Nursing Administration, 44(9), 446–451. https://doi.org/10.1097/NNA.0000000000000099
57.
MaurerM.DardessP.CarmanK. L.FrazierK.SmeedingL. (2012). Guide to patient and family engagement: Environmental scan report (Agency for Healthcare Research and Quality Publication No. 12-0042-EF). Agency for Healthcare Research and Quality.
58.
MikkelsenG.FrederiksenK. (2011). Family-centred care of children in hospital—A concept analysis. Journal of Advanced Nursing, 67(5), 1152–1162. https://doi.org/10.1111/j.1365-2648.2010.05574.x
59.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G., & The PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLOS Medicine, 6(7), Article e1000097. https://doi.org/10.1371/journal.pmed1000097
60.
MoreliusE.BrostromE.B.WestrupB.SarmanI.OrtenstrandA. (2012). The stockholm neonatal family-centered care study: Effects on salivary cortisol in infants and their mothers. Early Human Development, 88(7), 575–581. https://doi.org/10.1016/j.earlhumdev.2011.12.033
61.
MunnZ.PetersM. D. J.SternC.TufanaruC.McArthurA.AromatarisE. (2018). Systematic review of scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18, Article 143. https://doi.org/10.1186/s12874-018-0611-x
62.
O’BrienK.RobsonK.BrachtM.CruzM.LuiK.AlvaroR.da SilvaO.MonterrosaL.NarveyM.NgE.SoraishamA.YeX. Y.MireaL.Tarnow-MordiW.LeeS. K.FICare Study Group | FICare Parent Advisory Board. (2018). Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: A multicentre, multinational, cluster-randomised controlled trial. The Lancet Child & Adolescent Health, 2(4), 245–254. https://doi.org/10.1016/S2352-4642(18)30039-7
63.
OldingM.McMillanS. E.ReevesS.SchmittM. H.PuntilloK.KittoS. (2016). Patient and family involvement in adult critical and intensive care settings: A scoping review. Health Expectations, 19(6), 1183–1202. https://doi.org/10.1111/”hex.12402
64.
OrtenstrandA.WestrupB.BroströmE. B.SarmanI.ÅkerströmS.BruneT.LindbergL.WaldenströmU. (2010). The Stockholm Neonatal Family Centered Care Study: Effects on length of stay and infant morbidity. Pediatrics, 125(2), e278–e285. https://doi.org/10.1542/peds.2009-1511
65.
PalmaJ.P.KellerH.GodinM.WaymanK.CohenR.S.RhineW.D.LonghurtsC.A. (2012). Impact of an EMR-based daily patient update letter on communication and parent engagement in a neonatal intensive care unit. Journal of Participatory Medicine, 4, e33.
PelletierL. R.StichlerJ. F. (2013). Action brief: Patient engagement and activation: A health reform imperative and improvement opportunity for nursing. Nursing Outlook, 61(1), 51–54. https://doi.org/10.1016/j.outlook.2012.11.003
68.
PetersM.MarnieC.TriccoA. C.PollockD.MunnZ.AlexanderL.McInerneyP.GodfreyC. M.KhalilH. (2020). Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis, 18(10), 2119–2126. https://doi.org/10.11124/JBIES-20-00167
69.
PhiriP. G. M. C.KafulafulaU.Chorwe-SunganiG. (2019). Exploring paediatric nurses’ experiences on application of four core concepts of family centred nursing care in Malawi: Findings from a resource limited paediatric setting. International Journal of Caring Sciences, 12(1), 231–239.
70.
ReisM. D.RempelG. R.ScottS. D.Brady-FryerB. A.Van AerdeJ. (2010). Developing nurse/parent relationships in the NICU through negotiated partnership. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 39(6), 675–683. https://doi.org/10.1111/j.1552-6909.2010.01189.x
71.
RichardsC. A.StarksH.O’ConnorM. R.DoorenbosA. Z. (2017). Elements of family-centered care in the pediatric intensive care unit: An integrative review. Journal of Hospice and Palliative Nursing, 19(3), 238–246. https://doi.org/10.1097/NJH.0000000000000335
72.
RoaE.EttenbergerM. (2018). Music therapy self-care group for parents of preterm infants in the neonatal intensive care unit: A clinical pilot intervention. Medicines, 5(4), 134. https://doi.org/10.3390/medicines5040134
73.
RosenP.StengerE.BochkorisM.HannonM. J.KwohC. K. (2009). Family-centered multidisciplinary rounds enhance the team approach in pediatrics. Pediatrics, 123(4), e603–e608. https://doi.org/10.1542/peds.2008-2238
74.
RosenbergR. E.RosenfeldP.WilliamsE.SilberB.SchlucterJ.DengS.GeraghtyG.Sullivan-BolyaiS. (2016). Parents’ perspectives on “keeping their children safe” in the hospital. Journal of Nursing Care Quality, 31(4), 318–326. https://doi.org/10.1097/NCQ.0000000000000193
75.
RostamiF.HassanS.T.YaghmaiF.IsmaeilS.B.SuandiT.B. (2015). Effects of family-centered care on the satisfaction of parents of children hospitalized in pediatric wards in a pediatric ward in chaloos in 2012. Electronic Physician, 7(2), 1078–1084. https://doi.org/10.14661/2015.1078-1084
76.
SamraH. A.McGrathJ. M.FischerS.SchumacherB.DutcherJ.HansenJ. (2015). The NICU Parent Risk Evaluation and Engagement Model and Instrument (PREEMI) for neonates in intensive care units. Journal of Obstetric, Gynecologic & Neonatal Nursing, 44(1), 114–126. https://doi.org/10.1111/1552-6909.12535
77.
SegersE.OckhuijsenH.BaarendseP.van EerdenI.van den HoogenA. (2019). The impact of family centred care interventions in a neonatal or paediatric intensive care unit on parents’ satisfaction and length of stay: A systematic review. Intensive & Critical Care Nursing, 50, 63–70. https://doi.org/10.1016/j.iccn.2018.08.008
ShieldsL.ZhouH.PrattJ.TaylorM.HunterJ.PascoeE. (2012). Family-centred care for hospitalised children aged 0-12 years. Cochrane Database of Systematic Reviews, 10, CD004811. https://doi.org/10.1002/14651858.CD004811.pub3
80.
SilverG.TraubeC. (2019). A systematic approach to family engagement: Feasibility pilot of a pediatric delirium management and prevention toolkit. Palliative & Supportive Care, 17(1), 42–45. https://doi.org/10.1017/S1478951518000895
81.
TriccoA. C.LillieE.ZarinW.O’BrienK. K.ColquhounH.LevacD.MoherD.PetersM. D. J.HorsleyT.WeeksL.HempelS.AklE. A.ChangC.McGowanJ.StewartL.HartlingL.AldcroftA.WilsonM. G.GarrittyC.LewinS. (2018). PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473.
82.
ValizadehS.MirlashariJ.NavabE.HigmanW.GhorbaniF. (2018). Fathers: The lost ring in the chain of family-centered care: A phenomenological study in neonatal intensive care units of Iran. Advances in Neonatal Care, 18(1), E3–E11. https://doi.org/10.1097/ANC.0000000000000449
83.
YuX.ZhangJ. (2019). Family-centred care for hospitalized preterm infants: A systematic review and meta-analysis. International Journal of Nursing Practice, 25(3), Article e12705. https://doi.org/10.1111/ijn.12705
84.
ZhangR.HuangR. W.GaoX. R.PengX. M.ZhuL. H.RangasamyR.LatourJ. M. (2018). Involvement of parents in the care of preterm infants: A pilot study evaluating a family-centered care intervention in a Chinese neonatal ICU. Pediatric Critical Care Medicine, 19(8), 741–747. https://doi.org/10.1097/PCC.0000000000001586
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