Boie, E.T, Moore, G.P., Brummett, C., & Nelson, D.R. (1999). Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents. Annuals of Emergency Medicine, 34, 70-74.
Parents overwhelmingly reported they would want to be present when invasive procedures are performed on their children. Although as procedures became more invasive, this desire to be present decreased. Most parents reported they would want to be present if their child were likely to die, and nearly all parents wanted to participate in the decision about their presence.
Chernoff, R., Ireys, H., DeVet, K. A., & Kim, K. (2002). A randomized controlled trial of a community-based support program for families of children with chronic illnesses: Pediatric outcomes Archives of Pediatric and Adolescent Medicine, 156(6), 533-539.
Children with chronic illnesses achieved positive psychosocial outcomes after participating in a 15-month community support program compared to children who did not participate. The support program for children and their mothers was provided by veteran parents and child-life specialists.
Harbaugh, B. L., Tomlinson, P. S., Kirschbaum, M. (2004). Parents' perceptions of nurses' caregiving behaviors in the pediatric intensive care unit. Issues in Comprehensive Pediatric Nursing, 27(3), 163-178.
Parents of children admitted to a pediatric intensive care unit reported that the most supportive nursing behaviors are those that facilitate and complement their parenting role. Specific behaviors that were found to be helpful were offering access and proximity to their child, providing accurate and timely information, offering competent and coordinated care, and respecting the individuality of the patient. Several behaviors reported by parents to be unhelpful included restricting access, not fully informing parents, and delivering nursing care without showing affection or protection of the child.
MacKean, G. L., Thurston, W. E., Scott, C. M. (2005). Bridging the divide between families and health professionals' perspectives on family-centered care. Health Expectations, 8, 74-85.
Parents of children with special health care needs and health care providers participated in interviews and focus groups to develop a conceptual framework for family-centered care. The researchers found that both groups believed a key aspect of family-centered care is the relationship between families and providers. Families desired true collaborative relationships with health care providers but these partnerships are often not part of actual practice. The article includes a discussion of health system reforms that will support family-centered practice and meaningful partnerships.
Singer, G. H. S., Marquis, J., Powers, L. K., et al. (1999). A multi-site evaluation of parent to parent programs for parents of children with disabilities. Journal of Early Intervention, 22(3), 217-229.
This large, multi-site study of the efficacy of parent-to-parent support for parents of children with special needs found that peer support was associated with significantly higher parental scores on attitude, coping, and problem solving capacity compared to the scores of parents who did not receive parent-to-parent support. Respondents reported that this type of support could not be provided through any other means.
Wertlieb, D. (2003). Converging trends in family research and pediatrics: Recent findings for the American academy of pediatrics task force on the family. Pediatrics. 111(6), 1572-1587.
This article provides a comprehensive review of trends in the fields of pediatrics and social and behavioral sciences. The importance of viewing the pediatric patient within the context of the family and the community is highlighted. Examples of successful programs that build partnerships between families, communities, and health care providers to promote child health outcomes are presented.