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mothers’ fears that their own actions would negatively impact the quality of care their infants received. They also reported that their attempts to develop a partnership were either not recognized or were misunderstood as questioning the competence of the professional staff. Parents’ needs related to the parent-nurse relationship when their child was hospitalized in a pediatric intensive care unit (PICU) were examined in two studies. In the first, ambiguity of health-related family boundaries (i.e., uncertainty about responsibilities for caregiving), was explored (Tomlinson, Swiggum, & Harbaugh, 1999). Parents experiencing high levels of family boundary ambiguity were interviewed to elicit nursing interventions most supportive of maintaining family integrity. Interventions deemed useful were those that: (a) supported family normalcy, (b) respected the rights of families, (3) employed open, honest communication, and (d) included families in daily planning. In the second study of parents Harrison Page 5 J Pediatr Nurs. Author manuscript; available in PMC 2011 October 1. NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript with children hospitalized in PICU, parents were asked to share their perceptions of nurses’ caregiving behaviors (Harbaugh, Tomlinson, & Kirschbaum, 2004). Nursing behaviors supportive of family integrity and family functioning were seen by parents as those that complemented and facilitated the critical parental behaviors of nurturance and vigilance: “giving affection and caring, and watching and protecting” (p. 170). Two studies went beyond measuring parental perceptions to measuring the effect on the parent of the parent-health professional relationship. The FCC element of acknowledging and respecting the pivotal role of the family in the life of the infant was examined with mothers of infants with Down syndrome (Van Riper, 1999) and mothers of infants in the NICU (Van Riper, 2001). Mothers who reported positive relationships with health professionals also reported higher levels of well being and more satisfaction with care than mothers not reporting positive relationships with health professionals. Perception of the value and provision of FCC—Several investigators examined the value caregivers placed on the elements of FCC and the extent to which caregivers perceived that they actually received FCC. Galvin et al. (2000) surveyed 193 parents of hospitalized children to determine the importance placed on the elements of FCC and the frequency of observing these elements of care. Survey items were grouped conceptually into three areas of FCC: respect, collaboration, and support. Items ranking highest in importance included feeling like a parent rather than a visitor (respect), knowing who to call for help after discharge (collaboration), and believing staff is familiar with the care needs of the patient (support). Items ranked highest in occurrence included feeling welcomed (respect), feeling prepared for discharge (collaboration), and feeling staff understood the parent’s need to stay hopeful (support). The item ranked lowest in both importance and occurrence was staff willingness to understand cultural or religious beliefs (respect). Hispanics rated the importance of collaboration and support items lower than other racial groups (African-American, Caucasian, and other), and parents who had been in the United States less than five years ranked the importance of all three conceptual areas as lower. Perceptions of family caregivers that aspects of FCC were provided differentially based on race were found in two studies examining urban families of American Indian descent. In both studies, families thought they were not respected or understood and believed they were treated less well because of their cultural background (Garwick, Jennings, & Theisen, 2002; Rose & Garwick, 2003). Differences in perceived provision of FCC were also found in a study of parents of hospitalized children (Young et al., 2006b). Parents of toddlers and preschoolers reported significantly less satisfaction with communication and were less likely to perceive the nurses as being sensitive to parents’ needs when compared with parents of infants and parents of children over age 5 years. In one study, the adequacy of providing FCC was examined by asking 63 culturally diverse family caregivers of school-aged children with chronic physical health conditions to identify how health care services could be improved (Garwick, Kohrman, Wolman, & Blum, 1998). The recommendations, which did not differ between cultural groups, revealed major gaps in provision of this type of care. Family caregivers reported a need to: (a) improve accessibility and availability of health care services, (b) improve training of health care professionals, families, and the general public in caring for children with chronic conditions, and (c) decrease barriers to available services and programs. Interventions—Four studies were found in which interventions to implement specific aspects of FCC were tested. Two focused on outcomes of family involvement in care. In one study, incorporating the family into the care of their premature infant through the provision of family-centered, developmentally supportive care was examined in a sample of 114 infants Harrison Page 6 J Pediatr Nurs. Author manuscript; available in PMC 2011 October 1. NIH-PA
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