Support for Rural Families of Hospitalized Infants: The Parents' Perspective

Abstract

The provision of family-centered care in the hospital arena has become a national commitment. Recognizing and supporting the family's role means evaluating whether attitudes, policies, and practices address the immediate and the long-term needs of the total family rather than just the current needs of the child. Results of a study to determine parents' perceptions of supportive services available in the hospital immediately following the birth of their child with special health care needs are reported. In-depth interviews with mothers living in rural areas were conducted. Mothers emphasized the importance of access to their child; the need for timely, honest, straightforward information about their child's condition and progress; the intense emotional reaction to the intensive care environment; and the importance of an early link to community-based early intervention services. Overall, parents conveyed the importance of recognizing the family as an integral part of the child. Implications and recommendations for family-centered services are discussed.

Parent’s Perceptions of Health Care Providers Actions Around Child ICU Death

“…6,10–13 Conflicting information among physicians was stressful for parents. Parents value nonjudgmental care, empathy, prayer, and bereavement support.…”

The Impact of Severe Respiratory Syncytial Virus on the Child, Caregiver, and Family During Hospitalization and Recovery

“…There is empirical evidence suggesting that parents of hospitalized infants and children experience distress as well, marked by intense emotional reactions as they observe their young child's physical illness and behavioral and emotional responses in an acute care or intensive care environment. [23][24][25][26][27][28] Parental anxiety, role alterations, missed work days, emotional and behavioral concerns of siblings, and upheaval in the family routine may also lead to family instability and a reduction in family functioning during a child's hospitalization. 29 It is likely that the impact of RSV-related hospitalization on children, parents, and family does not stop at hospital discharge.…”

Assessment of patient and caregiver needs in fragile X-associated tremor/ataxia syndrome by utilizing Q-sort methodology

“…Q-sort items were compiled from an extensive review of the literature on needs of families of children with disabilities (Bailey, Blasco, & Simeonsson, 1992; Flynn & McCollum, 1993; Park et al, 2003). These items had been used in previous research with families of children with fragile X syndrome (FXS) (Staley-Gane et al, 1996) and were adapted to address priorities of families with FXTAS.…”