ArticleRecovery of injured children: parent perspectives on family needs1☆,
Section snippets
Design, setting, and informants
Data presented here were collected as a follow-up to a larger, longitudinal cohort study that examined the acute care and rehabilitation experiences of families whose child had experienced a traumatic injury that required hospitalization at a large tertiary children’s hospital. Families in the cohort study completed a battery of health status assessments at discharge and at 1 and 6 months after hospital discharge. Quantitative results of the cohort study provoked the research team to seek an
Satisfaction with hospital experience
Most families were very satisfied with the hospital experience. There was a general sense of gratitude for clinical care received, and relief in the recovery of the children. The following dialogue among 3 parents (P1, P2, P3) supports this finding:
P1: “I brag on [the hospital] all the time.”
P2: “Yeah, I do too. We had a really good experience. Even though it was a terrible tragedy, we had a real good experience.”
P3: “They made it … it was a tragedy, but they [hospital staff] made it easier on
Discussion
Objective scales measuring health status and functional status in children are extremely valuable in determining the overall impact of injury and other conditions over time, especially because the few studies that have evaluated these impacts have shown considerable family burden and decreased quality of life (QOL) for patients. Such measures, however, can provide only part of the information needed to develop interventions appropriate to the needs of affected families. This focus group study
Conclusions
Parents provide valuable insight into their needs at different times after their child’s injury. Careful attention to constructive patient-provider communication, clarification of the system of care, continued emphasis on family-centered care, and development of peer support programs for families may help support caregivers and therefore facilitate improvement in pediatric injury recovery.
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2019, Archives of Physical Medicine and RehabilitationDysphagia and feeding difficulties post-pediatric ingestion injury: Perspectives of the primary caregiver
2017, International Journal of Pediatric OtorhinolaryngologyCitation Excerpt :Given the social nature of feeding, the wider family unit is also impacted, as participation in communal mealtime activities can be reduced [19]. Primary caregiver experiences of living with a child requiring extensive medical care post-injury have been explored within other medical populations, including acquired brain injury [2,22,23] and burn injury [24,25]. The challenges of caring for a child with dysphagia and alternative feeding requirements has also been explored [26,27].
Pediatric Traumatic Brain Injury: Families and Healthcare Team Interaction Trajectories During Acute Hospitalization
2017, Journal of Pediatric NursingCitation Excerpt :A study conducted by Aitkens and her team found that communication (or a lack thereof) with caregivers was reported as the most challenging unaddressed need during hospitalization (2004). Their study reported that caregivers struggled to understand the child's diagnosis as it pertained to making therapeutic decisions during the acute care phase of recovery (Aitken et al., 2004). Bond, Draeger, Mandleco, and Donnelly (2003) found in their study that a primary need for families of patients with severe brain injuries was information about the patients' condition and what to expect in the present and the future.
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2020, Journal of Pediatric NursingCitation Excerpt :As pediatric nurses interface with and support youth and their families following concussion, it is important they are aware of these challenges. Ensuring compassionate and constructive communication, care coordination, and family-centered care can support families and facilitate recovery following concussion (Aitken, Mele, & Barrett, 2004; Moore et al., 2015). Youth concussion is associated with limited parental distress and family burden (Ganesalingam et al., 2008); this study adds to the literature by describing economic hardships following youth concussion, ranging from missed work and school to costly healthcare bills.
Changes over time in family members of adults with mild traumatic brain injury
2019, Brain Impairment
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Supported by the Bureau of Maternal and Child Health (grant no. MCH 054003-01-0) and the Robert Wood Johnson Foundation (grant no. 033946).
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No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors(s) or upon any organization with which the author(s) is/are associated.