Family-centered developmentally supportive care in the neonatal intensive care unit: Exploring the role and training of child life specialists

Children's Health Care

Volumn 43, Issue 4, 2014, Pages 345-368

  Smith, Jessica G ^a   Desai, Priti P ^b   Sira, Natalia ^b   Engelke, Stephen C ^c  

^a CHILDREN S HOSPITAL OF PITTSBURGH   (United States)

^b EAST CAROLINA UNIVERSITY   (United States)

^c EAST CAROLINA UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BEREAVEMENT; EDUCATION; FAMILY CENTERED CARE; FEMALE; FOLLOW UP; HIGH RISK INFANT; HUMAN; MALE; MEDICAL SPECIALIST; NEWBORN INTENSIVE CARE; NORMAL HUMAN; PALLIATIVE THERAPY; PERCEPTION; PERSONAL EXPERIENCE; TRAINING;

EID: 84908468806     PISSN: 02739615     EISSN: 15326888     Source Type: Journal    
DOI: 10.1080/02739615.2014.880917     Document Type: Article

References (60)

1. Aagaard, H., & Hall, E. O. C. (2008). Mothers' experiences of having a preterm infant in the neonatal intensive care unit: A meta-synthesis. Journal of Pediatric Nursing, 23, e26-e36.
2. Allen, M. C. (2008). Neurodevelopmental outcomes of preterm infants. Current Opinion in Neurology, 21, 123-128.
3. Als, H., & Gilkerson, L. (1995). Developmentally supportive care in the neonatal intensive care unit. Zero to Three, 15, 2-10.
4. Als, H., Lawhorn, G., Duffy, F. H., McAnulty, G., Gibes-Grossman, R., & Blickman, J. G. (1994). Individualized behavioral and environmental care for the very low birth weight pre-term infant at high risk for bronchopulmonary dysplasia and intraventricular hemorrhage. Journal for the American Medical Association, 272, 853-858.
5. Als, H., Lester, B. M., Tronick, E. Z., & Brazelton, T. B. (1982). Towards a research instrument for the assessment of preterm infants' behavior (APIB) and manual for the assessment of preterm infants' behavior (APIB). In H. E. Fitzgerald, B. M. Lester, & M. W. Yogman (Eds.), Theory and research in behavioral pediatrics (pp. 35-132). New York, NY: Plenum Press.
6. American Academy of Pediatrics, Committee on Fetus and Newborn. (2008). Hospital discharge of the high-risk neonate. Pediatrics, 122, 1119-1126.
7. American Academy of Pediatrics, Committee on Fetus and Newborn and Section on Surgery, Section on Anesthesiology and Pain Medicine, Canadian Paediatric Society and Fetus and Newborn Committee. (2006). Prevention and pain in the neonate: An update. Pediatrics, 118, 2231-2241.
8. American Academy of Pediatrics, Committee on Hospital Care & Child Life Council. (2006). Child life services. Pediatrics, 118, 1757-1763.
9. American Occupational Therapy Association. (2006). Specialized knowledge and skills for occupational therapy practice in the neonatal intensive care unit. American Journal of Occupational Therapy, 60, 659-668.
10. Anand, K. J. S., & Hall, R. W. (2008). Love, pain, and intensive care. Pediatrics, 121, 825-827.
11. Bachman, D. H., & Lind, R. F. (1997). Perinatal social work and the family of the newborn intensive care infant. Social Work in Health Care, 24, 21-37.
12. Bell, J. L., Johnson, B. H., Desai, P. P., & McLeod, S. M. (2009). Family-centered care and the implications for child life practice. In R. H. Thompson (Ed.). The Handbook of Child Life: A Guide for Pediatric Psychosocial Care (pp. 95-115). Springfield, IL: Charles C. Thomas.
13. Bellieni, C. V., Cordelli, D. M., Marchi, S., Ceccarelli, S., Perrone, S., & Buonocore, G. (2007). Sensorial saturation for neonatal analgesia. Clinical Journal of Pain, 23, 219-221.
14. Bornstein, M. (2002). Parenting infants. In M. H. Bornstein (Ed.), Handbook of parenting: Vol. 1. Children and parenting (2nd ed., pp. 3-43). Mahwah, NJ: Erlbaum.
15. Brazelton, T. B. (1973). Brazelton Neonatal Assessment Scale. London, UK: Spastics International Medical Publications.
16. Carter, J. D., Mulder, R. T., Bartram, A. F., & Darlow, B. A. (2005). Infants in a neonatal intensive care unit: Parental response. Archives of Disease in Childhood-Fetal Neonatal Edition, 90, F109-F113.
17. Catlin, A., & Carter, B. (2002). Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 22, 184-195.
18. Child Life Council. (2002). Official documents of the Child Life Council. Rockville, MD: Child Life Council.
19. Child Life Council. (2013). CLC board to review academic preparation task force recommendation for advanced degree requirement effective in 2022. Child Life Council. Retrieved June 12, 2013 from http://www.childlife.org/files/AcademicTFRecommendations-Website.pdf
20. Child Life Council Clinical Supervision Task Force. (2008). Clinical supervision position statement of the Child Life Council. Child Life Council. Retrieved August 1, 2013 from http://www.childlife.org/files/ClinicalSupervisionPS08.pdf
21. Cooper, L. G., Gooding, J. S., Gallagher, J., Sternesky, L., Ledsky, R., & Berns, S. D. (2007). Impact of a family-centered care initiative on NICU care, staff, and families. Journal of Perinatology, 27, S32-S37.
22. Crockenberg, S., & Leerkes, E. (2000). Infant social and emotional development in family context. In C. H. Zeenah, Jr. (Ed.). Handbook of Infant Mental Health (2nd ed., pp. 60-90). New York, NY: Guilford Press.
23. Erikson, E. H. (1963). Childhood and society. New York, NY: Norton.
24. Ferrari, F., Bertoncelli, N., Gallo, C., Roversi, M. F., Guerra, M. P., Ranzi, A., & Hadders-Algra, M. (2007). Posture and movement in healthy preterm infants in supine position in and outside the nest. Archives of Disease in Childhood: Fetal and Neonatal Edition, 92, F386-F390. doi:10.1136/adc.2006.101154
25. Field, T., Diego, M., & Hernandez-Reif, M. (2010). Preterm infant massage therapy research: A review. Infant Behavior & Development, 33, 115-124.
26. Flegel, J., & Kolobe, T. H. A. (2002). Predictive face validity of the Test of Infant Motor Performance as measured by the Bruininks-OOseretsky Test of Motor Proficiency at school age. Physical Therapy, 82, 762-771.
27. Fowlie, P. W., & McHaffie, H. (2004). ABC of preterm birth: Supporting parents in the neonatal unit. British Medical Journal, 329, 1336-1338.
28. Gooding, L. F. (2010). Using music therapy protocols in the treatment of premature infants: An introduction to current practices. The Arts in Psychotherapy, 37, 211-214.
29. Gooding, J. S., Cooper, L. G., Blaine, A. I., Franck, L. S., Howse, J. L., & Berns, S. D. (2011). Family support and family-centered care in the neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology, 35, 20-28.
30. Griffin, T., & Abraham, M. (2006). Transition to home from the newborn intensive care unit: Applying the principles of family-centered care to the discharge process. Journal of Neonatal Nursing, 20, 243-249.
31. Gursky, B. (2007). The effect of educational interventions with siblings of hospitalized children. Journal of Developmental and Behavioral Pediatrics, 28, 392-398.
32. Holditch-Davis, D., & Miles, M. S. (2000). Mothers' stories about their experiences in the neonatal intensive care unit. Neonatal Network, 19, 13-21.
33. Jessee, P. O. (1990). Necessary but not sufficient components: Training issues in child life. Children's Health Care, 19, 251-253.
34. Jonkey, B. W., & Solava, D. J. (1990). Model for physical therapy in the NICU. Journal of Perinatology, 10, 185-187.
35. Kuschel, C. A., & Kent, A. (2011). Improved neonatal survival and outcomes at borderline viability brings increasing ethical dilemmas. Journal of Paediatrics and Child Health, 47, 585-589.
36. Lasky, R. E., & Williams, A. L. (2009). Noise and light exposures for extremely low birth weight newborns during their stay in the neonatal intensive care unit. Pediatrics, 123, 540-546.
37. Leimberger, A. (2008). A most rewarding day. Nursing for Women's Health, 12, 536-540.
38. Levin, A. (1999). Humane neonatal care initiative. Acta Paediatrica, 88, 353-355.
39. Liu, W. F., Laudert, S., Perkins, B., MacMillan-York, E., Martin, S., Graven, S. for the NIC/Q 2005 Physical Environment Exploratory Group. (2007). The development of potentially better practices to support neurodevelopment of infants in the NICU. Journal of Perinatology, 27, S48-S74.
40. March of Dimes. (2007). The NICU family support program. March of Dimes. Retrieved August 1, 2013 from https://www.marchofdimes.com/baby/the-nicu-family-support-program.aspx
41. Melnyk, B. M., Crean, H. F., Feinstein, N. F., & Fairbanks, E. (2008). Maternal anxiety and depression following a premature infants' discharge from the NICU: Explanatory effects of the COPE Program. Nursing Research, 57, 383-394.
42. Moore, K. A. C., Coker, K., DuBuisson, A. B., Swett, B., & Edwards, W. H. (2003). Implementing potentially better practices for improving family-centered care in neonatal intensive care units: Successes and challenges. Pediatrics, 111, e450-e460. DOI:10.1542/peds.111.4.SE1.450
43. Morgan, A. M., Koch, V., Lee, V., & Aldag, J. (1988). Neonatal Neurobehavioral Examination: A new instrument for quantitative analysis of neonatal neurological status. Physical Therapy, 68, 1352-1358.
44. Nightlinger, K. (2011). Developmentally supportive care in the neonatal intensive care unit: An occupational therapist's role. Neonatal Network, 30, 243-248
45. Nottage, S. L. (2005). Parents' use of nonmedical support services in the neonatal intensive care unit. Issues in Comprehensive Pediatric Nursing, 28, 257-273.
46. Olshtain-Mann, O., & Auslander, G. K. (2008). Parents of preterm infants two months after discharge from the hospital: Are they still at (parental) risk? Health and Social Work, 33, 299-308.
47. Ravn, I. H., Smith, L., Lendemann, R., Smeby, N. A., Kyno, N. M., Bunch, E. H., & Sandvik, L. (2011). Effect of early intervention on social interaction between mothers and preterm infants at 12 months of age: A randomized controlled trial. Infant Behavior and Development, 34, 215-225.
48. Robison, L. D. (2003). An organizational guide for an effective developmental program in the NICU. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 32, 379-386.
49. Rollins, J. A., Bolig, R., & Mahan, C. C. (2005). Meeting children's psychosocial needs across the health-care continuum. Austin, TX: Pro-Ed.
50. Simons, S. H. P., van Dijk, M., Anand, K. S., Roofthooft, D., van Lingen, R., & Tibboel, D. (2003). Do we still hurt newborn babies? Archives of Pediatric and Adolescent Medicine, 157, 1058-1064.
51. Sizun, J., Ansquer, H., Browne, J., Tordjman, S., & Morin, J. F. (2002). Developmental care decreases physiologic and behavioral pain expression in preterm neonates. The Journal of Pain, 3, 446-450.
52. Sneath, N. (2009). Discharge teaching in the NICU: Are parents prepared? An integrative review of parents' perceptions. Neonatal Network, 28, 237-246.
53. Standly, J. (2012). Music therapy research in the NICU: An updated meta-analysis. Neonatal Network, 31, 311-316.
54. Thompson, R. H. (2009). The handbook of child life: A guide for pediatric psychosocial care. Springfield, IL: Charles C. Thomas.
55. Turner, J. C., & Fralic, J. (2009). Making the implicit explicit: Child life specialists talk about their assessment process. Child Youth Care Forum, 38, 39-54.
56. van Sleuwen, B. E., Engelberts, A. C., Boere-Boonekamp, M. M., Kuis, W., Schulpen, T. W. J., & L'Hoir, M. P. (2007). Swaddling: A systematic review. Pediatrics, 120, e1097-e1106. doi:10.1542/peds.2006-2083
57. VandenBerg, K. A. (1993). Basic competencies to begin developmental care in the intensive care nursery. Infants and Young Children, 6, 52-59.
58. Ward, K. (2001). Perceived needs of parents of critically ill infants in a neonatal intensive care unit (NICU). Pediatric Nursing, 27, 281-286.
59. Whipple, J. (2000). The effect of parent training in music and multimodal stimulation on parentneonate interactions in the neonatal intensive care unit. Journal of Music Therapy, 37, 250-268.
60. Yamada, J., Sinson, J., Lamba, J., Dickson, A., McGrath, P., & Stevens, B. (2008). A review of systematic reviews on pain interventions in hospitalized infants. Pain Research and Management, 13, 413-420.