Research Papers
2024
Feeley N, Kabajaasi O, Kenya-Mugisha N, Tagoola A, O’Brien K, Duby J., Benefits and Challenges of Implementing an Adaptation of Family Integrated Care in a Ugandan Setting, Advances in Neonatal Care, 2024; (2): 172–180
Franck LS, Magaña J, Bisgaard R, Lothe B, Sun Y, Morton CH. Mobile-enhanced Family Integrated Care for preterm infants: A qualitative study of parents’ views. PEC Innov. 2024 Apr 30;4:100284.
Hoeben H, Obermann-Borst SA, Stelwagen MA, van Kempen AAMW, van Goudoever JB, van der Schoor SRD, van Veenendaal NR. ‘Not a goal, but a given’: Neonatal care participation through parents’ perspective, a cross-sectional study. Acta Paediatr. 2024 Jun;113(6):1246-1256.
Kabajassi O, Reiter A, Tagoola A, Kenya-Mugisha N, O’Brien K, Wiens MO, Feeley N, Duby J,. Facilitators and constraints to family integrated care in low-resource settings informed the adaptation in Uganda. Acta Paediatr. 2024 Feb 27. Online ahead of print.
Moreno-Sanz B, Alferink MT, O’Brien K, Franck LS. Family integrated care: State of art and future perspectives. Acta Paediatr. 2024 May. Online ahead of print. Review.
Shen F, Wu X, Chen X-L, Rong H, Yang Y., Family Integrated Care Shortens the Duration of Home Oxygen Therapy in Infants With Bronchopulmonary Dysplasia. Advances in Neonatal Care, 2024(1):p 27-34.
van Veenendaal NR, Obermann-Borst SA, van Kempen AAMW, Labrie NHM,. The devil is in the details—Using empowering language for parents in the neonatal intensive care unit. Acta Paediatrica. 2024;00:1–2.
Weber A, Bakas T, Schulman-Green D, et. al. Family Management Skills Reported by Parents of Preterm Infants in the NICU Using the Self- and Family Management Framework (SFMF). Advances in Neonatal Care, 2024; (2): 119–131.
Zhang Y, Jiang M, Wang S, Xiang X, He W, Du J, Hei M., Effect of family integrated care on stress in mothers of preterm infants: A multicenter cluster randomized controlled trial. J Affect Disord. 2024; (1): 350:304-312
2023
Ansari, N.S.; Franck, L.S.; Tomlinson, C.; Colucci, A.; O’Brien, K. A Pilot Study of Family-Integrated Care (FICare) in Critically Ill Preterm and Term Infants in the NICU: FICare Plus. Children 2023, 10, 1337.
Bacchini F., Family reflections: prematurity and the power of parent involvement in research Pediatr Res. 2023 Oct;94(4):1579-1580.
Bracht M, Franck LS, O’Brien K, Bacchini F Parents Are Not Visiting. Parents Are Parenting. Adv Neonatal Care. 2023 Apr 1;23(2):105-106. Editorial
Bracht M, Franck LS, O’Brien K, Bacchini F., Opinion-Words Matter: The Implications of COVID-19 on Family-Centered Care in the NICU Neonatal Netw. 2022 Nov 11;41(6):317-318. Editorial
Duby J, Kabajaasi O, Muteteri J, Kisooka E, Barth D, Feeley N, O’Brien K, Nathan KM, Tagoola A, Wiens MO. Family Integrated Care in Uganda: a feasibility study. Arch Dis Child. 2023 Mar;108(3):180-184.
Franck, LS., Christine Hodgson C., Mobile-Enhanced Family-Integrated Care for Preterm Infants Nurse and Physician Views About Implementation. Adv Neonatal Care. 2023 Dec 1;23(6):565-574
Franck, LS., Caryl L. Gay CL., et al.,Maternal mental health after infant discharge: a quasi-experimental clinical trial of family integrated care versus family-centered care for preterm infants in U.S. NICUs. BMC Pediatrics. 2023, 23:396
Franck LS, Axelin A, Van Veenendaal NR, Improvinng Neonatal Intensive Care unit quality and safety with Family-centered Care. Bacchini F. Clin Perinatol. 2023 Jun;50(2):449-472.
Kim THM, Campbell-Yeo M, Disher T, et al. Caregiver Presence and Involvement in a Canadian Neonatal Intensive Care Unit: An Observational Cohort Study. J Pediatr Nurs. 2021;60:123-129.
Kubicka Z, Fiascone J , et al., Implementing modified family integrated care in a U.S. neonatal intensive care unit: nursing perspectives and effects on parents. Journal of Perinatology, 2023 Apr;43(4):503-509.
Kunneman M, Griffioen IPM, Labrie NHM, Kristiansen M, Montori VM, van Beusekom MM; Making Care Fit Working Group.BMJ Evid Based Med. 2023 Feb;28(1):5-6. doi: 10.1136/bmjebm-2021-111871. Epub 2021 Nov 23.
Pellikka HK, Axelin A, Sankilampi U, Kangasniemi M., Shared responsibility for decision-making in NICU: A scoping review, Nurs Ethics, 2023 May;30(3):462-476.
van Veenendaal NR, van der Schoor SRD, Broekman BFP, de Groof F, van Laerhoven H, van den Heuvel MEN, Rijnhart JJM, van Goudoever JHB, van Kempen AAMW. Association of a Family Integrated Care Model With Paternal Mental Health Outcomes During Neonatal Hospitalization, JAMA 2022 Jan 4;5(1):e2144720. Free PMC article.
Zanoni P, Karen M. Benzies Karen M, McNeil Deborah A, Application of Kern’s framework to development of a family integrated care curriculum for neonatal intensive care units,
International Journal of Medical Education. 2023;14:197-200
2022
Mclean M A. et al. Lower maternal Chronic Physiological Stress and Better Child Behaviour at 18 months: Follow up of a Cluster Randomized Trail of neonatal Intensive care unit Family Integrated Care, Journal of paediatrics 2022;243:107-15.
North K, MD, Whelan R, Folger LV, Lawford H, Olson I, Driker S, Bass MB, Edmond K, Lee ACC, Family Involvement in the Routine Care of Hospitalized Preterm or Low Birth Weight Infants: A Systematic Review and Meta-analysis, PEDIATRICS Volume 150, number S1, August 2022 S7
Ringham C, McNeil D, Benzies KM. The Work of Mothering in the NICU: A Critical Analysis of Alberta Family Integrated Care Parent Journals. Adv Neonatal Care. 2022 Aug 1;22(4):E112-E119.
Synnes AR et al. Family Integrated care: very preterm neurodevelopmental outcomes at 18 months. Arch Dis Child Fetal Neonatal Ed. 2022;107, F76-F81.
Xiaoli Tang, Sha Sha, Qian Jin, Hong Lu. NICU Staff’s Perceptions and Attitudes Toward the Family Integrated Care (FICare) Model: A Chinese Cross-sectional Study Adv Neonatal Care. 2022 Oct 1;22(5):456-466.
2021
Cheng C, Franck LS, Ye Xiang Y ,Hutchinson SA, Lee SK, O’Brien K. Evaluating the effect of family integrated care on maternal stress and anxiety in neonatal intensive care units. J Reprod Infant Psychol. 2021 Apr;39(2):166-179.
King BC, Mowitz ME, Zupancic JAF. The Financial Burdon on Families of Infants requiring neonatal Intensive care. Semin Perinatol , 2021 Apr;45(3).
Kostenzer J, Hoffmann J, von Rosenstiel-Pulver C, Walsh A, Zimmermann L, Mader S. Neonatal care during the COVID-19 pandemic – a global survey of parents’ experiences regarding infant and family-centred developmental care. EClinMed. 2021;39:101056.
McNeil D.A, Benzies K. M, Zanoni P, Kurilova J. Alberta Family Integrated Care (FICare)™: From engaged clinicians in a cluster randomized controlled trial to health system partnership in scale and spread across a province. In: McCutcheon C, Reszel J, Kothari A, Graham ID, editors. How We Work Together: The Integrated Knowledge Translation Research Network Casebook. 2021, Volume 4, 16-19. Ottawa, ON: Integrated Knowledge Translation Research Network.
Murphy M, Shah V, Benzies K. Effectiveness of Alberta Family-integrated care on neonatal outcomes: a cluster randomized controlled trial. J Clin Med. 2021;10:5871.
Newnam KM, Muñoz LRPurposeful Language Exposure by Neonatal Nurses and Caregivers in the NICU Adv Neonatal Care2021 Oct 1;21(5):407-417
van Veenendaal NR, Deierl A, Bacchini F, O’Brien K, Franck LS. Supporting parents as essential care partners in neonatal units during the SARS-CoV-2 pandemic. Acta Paediatr. 2021;110:2008-2022.
van Veenendaal NR, Auxier JN, van der Schoor S, Franck LS, Stelwagen MA, de Groof F, et al. Development and psychometric evaluation of the CO-PARTNER tool for collaboration and parent participation in neonatal care. PLoS One. 2021;16:e0252074.
Waddington C, van Veenendaal NR, O’Brien K, Patel N. Family integrated care: Supporting parents as primary caregivers in the neonatal intensive care unit. Pediatr Investig. 2021;5:148-154.
Zanoni, P, Scime, NV, Benzies, KM, McNeil DA, Mrklas, K. Facilitators and barriers to implementation of Alberta Family Integrated Care (FICare) in Level II Neonatal Intensive Care Units (NICU): a qualitative process evaluation sub-study of a multi-centre cluster randomized controlled trial (cRCT) using the Consolidated Framework for Implementation Research (CFIR). BMJ, 2021 Oct 18;11(10):e054938.
2020
Benzies, K. M., Aziz, K., Shah, V., Isaranuwatchai, W., Scotland, J. Larocque, J., Mrklas, K. J., Naugler, C., Stelfox, H. T., Chari, R., Soraisham, A., Akierman, A. R., Phillipos, E., Amin, H., Hoch, J., Zanoni, P., Kurilova, J., Lodha, A., and the Alberta Family Integrated Care Team. (2020, November 20). Effectiveness of Alberta Family Integrated Care in Level II Neonatal Intensive Care Units (NICU) on infant and maternal outcomes: a provincial, pragmatic, cluster randomized controlled trial. BMC Pediatrics, 20:535.
Church PT at al. Family Integrated Care (FICare) : positive impact on behavioral outcomes at 18 months. Early Human development: 2020, 151:105196.
GLANCE Chair Committee. Zero separation. Together for better care!
Oude Maatman SM, Bohlin K, Lilliesköld S, Garberg HT, Uitewaal-Poslawky I, Kars MC, et al. Factors influencing implementation of Family-centered care in a neonatal intensive care unit. Front Pediatr. 2020;8:222.
Stelwagen M, van Kempen A, Westmaas A, Vet E, Scheele F. Parents’ experiences with a model of integrated maternity and neonatal care designed to empower parents. J Obstet Gynecol Neonatal Nurs. 2021;50:181-192.
2019
Aija A, Toome L, Axelin A, Raiskila S, Lehtonen L. Parents’ presence and participation in medical rounds in 11 European neonatal units. Early Hum Dev. 2019;130:10-16.
Benzies KM, Shah V, Aziz K, Lodha A, Misfeldt R. The health care system is making ‘too much noise’ to provide family-centred care in neonatal intensive care units: Perspectives of health care providers and hospital administrators. Intensive and Critical Care Nursing. Intensive Crit Care Nurs. 2019 Feb;50:44-53.
de Salaberry J, Hait V, Thornton K, Bolton M, Abrams M, Shivananda S, et al. Journey to mother baby care: Implementation of a combined care/couplet model in a Level 2 neonatal intensive care unit. Birth Defects Res. 2019;111:1060-1072.
Franck LS, O’Brien K. The evolution of family-centered care: From supporting parent-delivered interventions to a model of family integrated care. Birth Defects Res. 2019 Sep 1;111(15):1044-1059. Review.
Klawetter S, Neu M, Roybal KL, Greenfield JC, Scott J, Hwang S. Mothering in the NICU: A qualitative exploration of maternal engagement Soc Work Health Care2019 Sep;58(8):746-763.
Stelwagen MA, van Kempen A, Westmaas A, Blees YJ, Scheele F. Integration of maternity and neonatal care to empower parents. J Obstet Gynecol Neonatal Nurs. 2020;49:65-77.
2018
Patel N, Ballantyne A, Bowker G, Weightman J, Weightman S; Helping Us Grow Group (HUGG). Family Integrated Care: changing the culture in the neonatal unit. Arch Dis Child. 2018 May;103(5):415-419.
Platonos K, Aloysius A, Banerjee J, Deier A. Integrated family delivered care project: Parent education programme, IFDC Core Group, Neonatal Unit, Imperial College Healthcare NHS Trust, Du Cane Road, London, W12 0HS, UK Journal of Neonatal Nursing 24 (2018) 29e34
2017
Benzies KM, Shah V, Aziz K, Isaranuwatchai W, Palacio-Derflingher L, Scotland J, Larocque J, Mrklas K, Suter E, Naugler C, Stelfox HT, Chari R, Lodha A; Alberta FICare Level II NICU Study Team.Trials. 2017 Oct 10;18(1):467. doi: 10.1186/s13063-017-2181-3.PMID: 29017578 Free PMC article. Clinical Trial.
Raiskila S, Axelin A, Toome L, Caballero S, Tandberg BS, Montirosso R, et al. Parents’ presence and parent-infant closeness in 11 neonatal intensive care units in six European countries vary between and within the countries. Acta Paediatr. 2017;106:878-888.
2016
Benzies, K. M. Relational communications strategies to support family-centered neonatal intensive care. Journal of Perinatal and Neonatal Nursing. 2016, 30(3), 233-236.
2015
O’Brien K, Bracht M, Robson K, Ye XY, Mirea L, Cruz M, Ng E, Monterrosa L, Soraisham A, Alvaro R, Narvey M, Da Silva O, Lui K, Tarnow-Mordi W, Lee SK.
BMC Pediatr 2015 Dec 15;15:210. doi: 10.1186/s12887-015-0527-0.
O’Brien K, Bracht M, Robson K, Ye XY, Mirea L, Cruz M, Ng E, Monterrosa L, Soraisham A, Alvaro R, Narvey M, Da Silva O, Lui K, Tarnow-Mordi W, Lee SK.BMC Pediatr. 2015 Dec 15;15:210. doi: 10.1186/s12887-015-0527-0.PMID: 26671340 Free PMC article. Clinical Trial.
2014
Parents as practitioners in preterm care.
Jiang S, Warre R, Qiu X, O’Brien K, Lee SK.Early Hum Dev. 2014 Nov;90(11):781-5. doi: 10.1016/j.earlhumdev.2014.08.019. Epub 2014 Sep 20.PMID: 25246323 Review.
Parents as primary caregivers in the neonatal intensive care unit.
Lee SK, O’Brien K.CMAJ. 2014 Aug 5;186(11):845-7. doi: 10.1503/cmaj.130818. Epub 2014 Apr 7.PMID: 24710910 Free PMC article.
2013
Implementing family-integrated care in the NICU: a parent education and support program.
Bracht M, OʼLeary L, Lee SK, OʼBrien K.Adv Neonatal Care. 2013 Apr;13(2):115-26. doi: 10.1097/ANC.0b013e318285fb5b.PMID: 23532031
Implementing family-integrated care in the NICU: educating nurses.
Galarza-Winton ME, Dicky T, OʼLeary L, Lee SK, OʼBrien K.Adv Neonatal Care. 2013 Oct;13(5):335-40. doi: 10.1097/ANC.0b013e3182a14cde.PMID: 24042139
Macdonell K, Christie K, Robson K, Pytlik K, Lee SK, OʼBrien K.Adv Neonatal Care. 2013 Aug;13(4):262-9, quiz 270-1. doi: 10.1097/ANC.0b013e31829d8319.PMID: 23912018
A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit.
O’Brien K, Bracht M, Macdonell K, McBride T, Robson K, O’Leary L, Christie K, Galarza M, Dicky T, Levin A, Lee SK.BMC Pregnancy Childbirth. 2013;13 Suppl 1(Suppl 1):S12. doi: 10.1186/1471-2393-13-S1-S12. Epub 2013 Jan 31.PMID: 23445639 Free PMC article.
2024
Feeley N, Kabajaasi O, Kenya-Mugisha N, Tagoola A, O’Brien K, Duby J., Benefits and Challenges of Implementing an Adaptation of Family Integrated Care in a Ugandan Setting, Advances in Neonatal Care, 2024; (2): 172–180
Franck LS, Magaña J, Bisgaard R, Lothe B, Sun Y, Morton CH. Mobile-enhanced Family Integrated Care for preterm infants: A qualitative study of parents’ views. PEC Innov. 2024 Apr 30;4:100284.
Hoeben H, Obermann-Borst SA, Stelwagen MA, van Kempen AAMW, van Goudoever JB, van der Schoor SRD, van Veenendaal NR. ‘Not a goal, but a given’: Neonatal care participation through parents’ perspective, a cross-sectional study. Acta Paediatr. 2024 Jun;113(6):1246-1256.
Kabajassi O, Reiter A, Tagoola A, Kenya-Mugisha N, O’Brien K, Wiens MO, Feeley N, Duby J,. Facilitators and constraints to family integrated care in low-resource settings informed the adaptation in Uganda. Acta Paediatr. 2024 Feb 27. Online ahead of print.
Moreno-Sanz B, Alferink MT, O’Brien K, Franck LS. Family integrated care: State of art and future perspectives. Acta Paediatr. 2024 May. Online ahead of print. Review.
Shen F, Wu X, Chen X-L, Rong H, Yang Y., Family Integrated Care Shortens the Duration of Home Oxygen Therapy in Infants With Bronchopulmonary Dysplasia. Advances in Neonatal Care, 2024(1):p 27-34.
van Veenendaal NR, Obermann-Borst SA, van Kempen AAMW, Labrie NHM,. The devil is in the details—Using empowering language for parents in the neonatal intensive care unit. Acta Paediatrica. 2024;00:1–2.
Weber A, Bakas T, Schulman-Green D, et. al. Family Management Skills Reported by Parents of Preterm Infants in the NICU Using the Self- and Family Management Framework (SFMF). Advances in Neonatal Care, 2024; (2): 119–131.
Zhang Y, Jiang M, Wang S, Xiang X, He W, Du J, Hei M., Effect of family integrated care on stress in mothers of preterm infants: A multicenter cluster randomized controlled trial. J Affect Disord. 2024; (1): 350:304-312
Randomized Control Trial
Number of centers enrolled: 19 Canadian, 6 Australian, and 1 New Zealand NICUs randomized to FICare or current standard-of-care (13 intervention sites/13 control sites). Teams from the intervention sites received a 2-day workshop on how FICare was to be implemented at their sites.
Intervention sites:
- All intervention sites were expected to: train nursing staff to support FICare, provide an ongoing parent education program, develop and provide opportunities for veteran parent/peer-to-peer support, and develop environmental and policy supports for FICare
- Each site had a visit by research staff to support and assess the implementation of the model
Inclusion Criteria:
Infants born < 33 weeks gestation, on low level respiratory support, a primary caregiver parent, willing and able to commit to spending 6 hours per day with their baby between the hours of 0700 and 2000, parental consent.
Exclusion Criteria:
Palliative care, severe congenital anomaly, critical illness (unlikely to survive), on high level of respiratory support, parental request for early transfer, parental inability to participate.
Outcomes Being Measured:
The primary outcome is weight gain. Secondary outcomes include breastfeeding rates, clinical outcomes, safety, parental stress and anxiety, and resource use.
Key outcomes of the cRCT:
Improved weight gain, decreased parent stress and anxiety, improved breast feeding
Research paper:
Evaluation of the Family Integrated Care model of neonatal intensive care: a cluster randomized controlled trial in Canada and Australia.
O’Brien K, Bracht M, Robson K, Ye XY, Mirea L, Cruz M, Ng E, Monterrosa L, Soraisham A, Alvaro R, Narvey M, Da Silva O, Lui K, Tarnow-Mordi W, Lee SK.
BMC Pediatr 2015 Dec 15;15:210. doi: 10.1186/s12887-015-0527-0.
Pilot Study Details *
The FICare model was originally developed by a team of doctors, nurses, parents and other health professionals at Mount Sinai Hospital in Toronto.
Our group has conducted and published the results of a pilot study investigating the impact of FICare on infants and parents. The study is summarized below. We have also completed a cluster randomised controlled trial investigating outcomes observed under the FICare model in 19 Canadian, 6 Australian and 1 New Zealand NICUs (13 intervention sites, 13 control sites) also summarized below. Click here for a list of participating sites.
Pilot start date: March, 2011
Length of study: 12 months
Number of patients enrolled: 40 patients
Location: 4 bed spaces reserved in Level II FICare area
Time Commitment for Parents: Minimum 8 hours each day – during day
Inclusion Criteria:
< 35 weeks gestation, on low level respiratory support, a primary caregiver parent, willing and able to commit to spending 8 hours per day with their baby between the hours of 0700 and 2000, parental consent.
Exclusion criteria:
Palliative care, severe congenital anomaly, critical illness (unlikely to survive), parental request for early transfer, parental inability to participate.
Subjects:
The pilot study enrolled 42 mothers (4 sets of twins), 17 (40%) of whom had other children at home. The majority (22, 55%) were Canadian born; 11 lived in Canada >10 years. All subjects had at least grade 10 high school education; and 27 (71%) were employed outside the home. The subjects varied in age from 23-45 years (mean 33 years).
Key Outcomes of the Pilot Study:
Improved weight gain, fewer nosocomial infections, increased breastfeeding rates, less ROP, and fewer incident reports were filed. Parents also reported decreased parental stress.
* A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit. BMC Pregnancy Childbirth, Volume 13 Suppl 1:S12, 2013