Authors

  1. Callister, Lynn Clark PhD, RN, FAAN

Article Content

Yearly over 15 million children are born prematurely, the most vulnerable population in the world. Such early births often constitute a family crisis superimposed on couples making the transition to parenthood. Fifty percent of births occur in South Asia and sub-Sahara Africa, with 60% of the world's preterm births and 80% of deaths due to complications of preterm birth (March of Dimes, Partnership for Maternal, Newborn, and Child Health, Save the Children, & World Health Organization, 2012).

 

Family-centered care (FCC) has been implemented in NICUs to support positive outcomes for these babies and their families. Attributes of FCC include family care taking, equal family participation, collaboration, maintaining families' respect and dignity, and knowledge transformation (Ramezani, Hadian Shirazi, Sabet Sarvestani, & Moattari, 2014). It has been documented that FCC in pediatric settings including NICUs is significantly associated with improving neonatal health outcomes, decreased length of hospitalization, and lower healthcare costs (Kuo et al., 2012).

 

According to Kuo et al. (2012), barriers to the provision of such care are lack of understanding of FCC, lack of staff support for FCC, and the need for quality research supporting FCC. Recommendations for transforming NICUs to FCC include the following: incorporating FCC principles into clinical practice guidelines and practicing those principles consistently; family presence at bedside rounds and during procedures; involving families in the planning and design of healthcare; evaluating FCC with valid tools in quality improvement initiatives; infusion of resources to improve FCC; and reimbursement policies that value the time required to engage in FCC (Kou et al., 2012).

 

Over 120 March of Dimes chapters in the United States have established NICU Family Support programs that often include diverse immigrant families from around the world. The philosophy of the March of Dimes NICU Family Support initiative is that families are an integral part of the healthcare team, promoting FCC. A recent case study provides rich qualitative documentation of one high-risk father's experiences in the NICU, with FCC providing "familial cohesion and an empowering sense of purpose" (Johnston, 2014, p. 319). This father said, "[This experience has changed] my attitude, my understanding, my impatience, learning to be more humble, and most of all my faith....cope, communicate, and ...not be afraid of my son being in NICU" (Johnston, 2014, p. 326).

 

There is a paucity in the global literature about FCC initiatives in the care of vulnerable preterm infants. Globally there is ambiguity about what constitutes FCC, with widely varying definitions depending on sociocultural context. In some cultures and countries, families may not expect or even desire to have a partnership with healthcare providers. In some cultures and countries, families are largely responsible for the provision of care even in acute care facilities. This means families provide food, healthcare, and medical supplies because of the lack of resources and time by overworked healthcare professionals. In such instances, family provision of care does not constitute FCC. In the Netherlands, the Maxima Medical Center opened an innovative family-centered Woman-Mother-Child Center, which is one of the first European centers providing an FCC across the childbearing years. This includes NICU care in private rooms with their parents rather than in traditional NICU units.

 

Examining innovative models of FCC, fully implementing principle-based FCC initiatives, and documenting outcomes are essential. Nurses can support FCC by advocating for changes in practice in the NICU and being active members of the design team when new NICUs are being planned.

 

References

 

Johnston D. A. (2014). Releasing the flood: A qualitative case study of one high-risk father's journey through the labor unit and neonatal intensive care unit. Journal of Perinatal and Neonatal Nursing, 28(4), 319-331. doi:10.1097/JPN.0000000000000064 [Context Link]

 

Kuo D. Z., Houtrow A. J., Arango P., Kuhlthau K. A., Simmons J. M., Neff J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal Child Health Journal, 16(2), 297-305. doi:10.1007/s10995-011-0751-7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3262132/[Context Link]

 

March of Dimes, Partnership for Maternal, Newborn, and Child Health, Save the Children, & World Health Organization. (2012). Born too soon: The global action report on preterm birth. Geneva: World Health Organization. http://www.marchofdimes.org/materials/born-too-soon-the-global-action-report-on-[Context Link]

 

Ramezani T., Hadian Shirazi Z., Sabet Sarvestani R., Moattari M. (2014). Family-centered care in neonatal intensive care unit: A concept analysis. International Journal of Community Based Nursing and Midwifery, 2(4), 268-278. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4201206/[Context Link]