Journal of pediatric nursing
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Review Case Reports
A framework for integrated pediatric palliative care: being with dying.
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. ⋯ This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
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The purpose of this pilot study was to describe decision making and the decision support needs of parents, physicians, and nurses regarding life support decisions made over time prenatally and postnatally for extremely premature infants. Using the collective case study method, one prenatal, one postnatal, and one postdeath, if the infant had died, tape-recorded interviews were conducted with each parent. With parents' permission, prenatal interviews were done with the physicians and nurses who talked to them about life support decisions for their infants. ⋯ Physicians used parameters to offer options or involve parents in decisions and became very directive at certain gestational ages. Nurses reported that they believed that parents needed information from the physician first, then they would reinforce information. The results of this study offer an initial understanding of the decision support needs of parents.
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Continuity of care and caring: what matters to parents of children with life-threatening conditions.
This article presents parents' perceptions regarding continuity and coordination of care of children with life-threatening conditions as revealed through qualitative analysis of interviews with 36 bereaved parents of children who died after receiving care at three geographically dispersed teaching hospitals in the United States. Parental concerns about and experience of continuity of care were framed primarily in terms of the quality and continuity of relationships with healthcare providers throughout a child's illness and death and the continuity and consistency of information that they received about their child's condition and care. Continuity in relationships was perceived as key in ensuring that clinicians knew and cared about the child and parents, which in turn contributed to parents' confidence that their child would receive the best possible care. In the absence of continuous, caring relationships with staff, parents reported frustration, hypervigilance, and mistrust about the quality of care that their child received.
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This study examined changes in stress in 37 mothers/caregivers of children with chronic feeding problems. Stress was measured by the Parenting Stress Index-Short Form at three specific stages during pediatric hospitalization for treatment of chronic feeding problems. The relationship between caregiver stress and stage of hospitalization as well as that between stress and various child and family variables were investigated. ⋯ These results provide a more comprehensive picture of families of children with chronic feeding problems, a population that has received little attention in the research literature. Information regarding parent/caregiver stress during a child's hospitalization can enhance nurses' understanding of the experiences of these families, thereby contributing to more effective treatment planning. In addition, the results emphasize the need to examine a variety of child and family factors that may influence parenting stress as well as family involvement in intervention services.