This study investigates parental experiences and perceptions of the care received during their child’s prolonged hospitalization. It relates this care to the Beanstalk Program (BP), a develop-mentally focused care program provided to these families within an acute care hospital setting. A total of 20 parents (of children hospitalized between 1-15 months) completed the Measures of Processes of Care (MPOC-20) with additional questions regarding the BP. Scores rate the extent of the health-care provider’s behaviour as perceived by the family, ranging from ‘to a great extent’ (7) to ‘never’ (1). Parents rated Respectful and Supportive Care (6.33) as highest, while Providing General Information (5.65) was rated lowest. Eleven parents participated in a follow-up, qualitative, semi-structured interview. Interview data generated key themes: (a) parents strive for positive and normal experiences for their child within the hospital environment; (b) parents value the focus on child development in the midst of their child’s complex medical care; and (c) appropriate developmentally focused education helps parents shift from feeling overwhelmed with a medically ill child to instilling feelings of confidence and empowerment to care for their child and transition home. These results emphasize the importance of enhancing child development for hospitalized infants and young children through programs such as the BP.
ArnadottirUEgilsonST (2012) Evaluation of therapy services with the measure of processes of care (MPOC-20): The perspectives of Icelandic parents of children with physical disability. Journal of Child Health Care16: 62–74.
2.
AucottSDonohuePKAtkinsE (2002) Neurodevelopmental care in the NICU. Mental Retardation and Developmental Disabilities Research Reviews8: 298–308.
3.
BallwegDD (2001) Implementing developmentally supportive family-centered care in the newborn intensive care unit as a quality improvement initiative. Journal of Perinatal and Neonatal Nursing15: 58–73.
4.
BarbaLAKingDJWalkerCL (1992) Infant definitive care unit: Developmental care for the hospitalized NICU graduate. Neonatal Network11: 35–42.
5.
BaumMFreierMCChinnockRE (2003) Neurodevelopmental outcome of solid organ transplantation in children. Pediatric Clinics of North America50: 1493–1503.
6.
BergerSPHolt-TurnerICupoliJM (1998) Caring for the graduate from the neonatal intensive care unit: At home, in the office, and in the community. Pediatric Clinics of North America45: 701–712.
7.
ButlerSAlsH (2008) Individualized developmental care improves the lives of infants born preterm. Acta Paediatrica97: 1173–1175.
8.
CatlinA (2006) Extremely long hospitalizations of newborns in the United States: Data, descriptions, dilemmas. Journal of Perinatology26: 742–748.
9.
CostelloABrachtMVan CampK (1996) Parent information binder: Individualizing education for parents of preterm infants. Neonatal Network15: 43–46.
10.
DenzinNKLincolnYS (1994) Handbook of Qualitative Research. London, UK: SAGE Publications.
11.
DickensKMatthewsLRThompsonJ (2010) Parents and service providers' perceptions regarding the delivery of family-centred paediatric rehabilitation services in a children's hospital. Child: Care, Health and Development37: 64–73.
12.
DudleySKCarrJM (2004) Vigilance: The experience of parents staying at the bedside of hospitalized children. Journal of Pediatric Nursing19: 267–275.
13.
GarroLC (1994) Narrative representations of chronic illness experience. Social Science and Medicine38: 775–788.
14.
GoldbergSSimmonsRJ (1988) Chronic illness and early development: The parent’s perspective. Pediatrician15: 13–20.
15.
GoldbergerJ (1988a) Infants and toddlers in hospital: Addressing developmental risks. National Centre of Clinical Infant Programs8: 1–6.
16.
GoldbergerJ (1988b) Issue-specific play with infants and toddlers in hospitals: Rationale and intervention. Child Health Care16: 134–141.
17.
GoodingJSCooperLGBlaineAI (2011) Family support and family-centered care in the neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology35: 20–28.
18.
GreenN (1995) Qualitative research: Qualitative interviews in medical research. British Medical Journal311: 251–253.
19.
GretebeckRJShafferDBishop-KuryloD (1998) Clinical pathways for family-oriented developmental care in the intensive care nursery. Journal of Perinatal and Neonatal Nursing12: 70–80.
20.
KingSKingGRosenbaumP (2004) Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC-20). Children's Health Care33: 35–37.
21.
KingSRosenbaumPKingG (1995) The Measure of Processes of Care: A Means to Assess Family-centred Behaviours of Health Care Providers. Hamilton, ON: McMaster University, Neurodevelopmental Clinical Research Unit.
22.
KinneerMDBrowneJV (1997) Developmental care in advanced practice neonatal nursing education. Journal of Nursing Education36: 79–82.
23.
KlassenAFDixDCanoSJ (2009) Evaluating family-centred service in paediatric oncology with the measure of processes of care (MPOC-20). Child: Care, Health and Development35: 16–22.
24.
KleinmanA (1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York, NY: Basic Books.
25.
KrebsTL (1998) Clinical pathway for enhanced parent and preterm infant interaction through parent education. Journal of Perinatal and Neonatal Nursing12: 38–49.
26.
KuhlthauKABloomSVan CleaveJ (2011) Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatric Association11: 136–143.
27.
MelnykBM (1995) Parental coping with childhood hospitalization: A theoretical framework to guide research and clinical interventions. Maternal Child Nursing Journal23: 123–131.
28.
MelnykBMAlpert-GillisLFeinsteinNF (2004a) Creating opportunities for parent empowerment: Program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics113: e597–e607.
29.
MelnykBMSmallLCarnoMA (2004b) The effectiveness of parent-focused interventions in improving coping/mental health outcomes of critically ill children and their parents: An evidence base to guide clinical practice. Pediatric Nursing30: 143–148.
30.
MontgomeryLA (1999) Making a multidisciplinary neonatal developmental care team a reality. Neonatal Network18: 47–49.
31.
PaoMBallardEDRosensteinDL (2007) Growing up in the hospital. Journal of the American Medical Association297: 2752–2755.
32.
PearsonJAndersenK (2001) Evaluation of a program to promote positive parenting in the neonatal intensive care unit. Neonatal Network20: 43–48.
33.
PloofDLFeldmanHM (1992) Organizing early intervention services in a hospital setting: The developmental support project as a parallel organization. Infants and Young Children5: 28–39.
34.
PopeCMaysN (1995) Reaching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. British Medical Journal311: 42–45.
35.
PowerNFranckL (2008) Parent participation in the care of hospitalized children: A systematic review. Journal of Advanced Nursing62: 622–641.
36.
RaghavendraPMurchlandSBentleyM (2007) Parents’ and service providers’ perceptions of family-centred practice in a community-based, paediatric disability service in Australia. Child: Care, Health and Development33: 586–592.
37.
RobertsCA (2010) Unaccompanied hospitalized children: A review of the literature and incidence study. Journal of Pediatric Nursing25: 470–476.
38.
RobinsonJRRankinJLDrotarD (1996) Quality of attachment as a predictor of maternal visitation to young hospitalized children. Journal of Pediatric Psychology21: 401–417.
39.
SaundersRPAbrahamMRCrosbyMJ (2003) Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units. Pediatrics111: e437–e449.
40.
VandenBergKA (1997) Basic principles of developmental caregiving. Neonatal Network16: 69–71.
41.
WebbC (1999) Analysing qualitative data: Computerized and other approaches. Journal of Advanced Nursing29: 323–330.
42.
WellsPWDeBoard-BurnsMBCookRC (1994) Growing up in the hospital, Part I: Let's focus on the child. Journal of Pediatric Nursing9: 66–73.
43.
WilsonLJPasseroVAKingW (1994) An educational program for neonatal intensive care unit developmental care. Neonatal Network13: 27–33.
44.
Wilson-CostelloDFriedmanHMinichN (2005) Improved survival rates with increased neurodevelopmental disability for extremely low birth weight infants in the 1990s. Pediatrics115: 997–1003.
