Journal for Specialists in Pediatric Nursing最新文献

Purpose: The purpose of this article is to review literature for neurocognitive, neuropsychiatric, neurological complications associated with phenylalanine hydroxylase (PAH) deficiency. The goal is to familiarize nurse practitioners with treatment and monitoring guidelines for persons living with the disorder.

Conclusions: Appropriate treatment can maximize neurocognitive and neuropsychiatric outcomes.

Practice implications: Nurse practitioners can help persons with PAH deficiency through education and providing appropriate referrals and by supporting disease-specific treatment.

Purpose: The purpose of this study was to examine the feasibility and preliminary effectiveness of using wearable activity tracker technology, integrated with altruistic motivation in children to increase physical activity (PA), fitness, and prosocial behavior.

Design and methods: A quasiexperimental design was employed in two 4th grade classrooms in a rural southern state. The intervention was a wearable PA tracker and a web-based curriculum with activities to earn power points redeemable to provide life-saving food to undernourished kids internationally. Seventeen children in the intervention group participated in the 10-week PA program and 18 children were in the wait listed control group. Three measures were assessed in both groups at baseline and postintervention: (a) PA measured with accelerometers, (b) fitness levels measured with shuttle run, and (c) prosocial behavior measured with Strengths and Difficulties questionnaire.

Results: Of the 35 children enrolled, the majority were nine years old (n = 28), black (n = 31) and female (n = 23). An overall enrollment rate of 88%, attrition rate of 9%, and an accelerometer noncompliance rate of 25% was determined to assess feasibility. There was no statistical significance between the control and intervention group outcome variables. The average minutes of PA in the control group decreased 8 min from baseline to postintervention (p = .05). In the intervention group, PA decreased by 10 min from baseline to postintervention (p = .12). In both the control and intervention groups, prosocial behavior scores decreased (p = .09 control; p = .62 intervention). The fitness scores, VO₂ max, did not significantly change (intervention p = .21; control p = .35).

Practice implications: Developing effective interventions that foster PA and dissuade sedentary behaviors are essential to enhancing PA and fitness levels. The recruitment, retention, and accelerometer wear adherence suggest this setting, with this population is feasible. The intervention is deliverable, however, the potential of wearable activity trackers and the effect of prosocial behavior that benefits others in increasing PA and improving cardiorespiratory fitness, should be further researched by building on the successful elements of this study.

Purpose: Child participation in type 1 diabetes (T1D) self-care is needed in developing countries due to a lack of resources, especially during the school day. This pilot study evaluated the feasibility of a therapeutic play intervention (ITP) versus standard education (SE) on the ability of children with T1D to correctly perform insulin injection technique.

Design and methods: Children with T1D (7-12 years) were recruited at two diabetes clinics in Brazil and randomized to ITP or SE. Registered nurses received protocol training to deliver the intervention and perform data collection. ITP group received an education that included a story about a child with T1D who self-injects insulin at school; SE group received routine clinic-based education. Preintervention, children were video-recorded giving insulin injections to a doll; postintervention, children were rerecorded giving the doll an injection. The research team reviewed the videos and assessed the injection technique using validated checklists. Parents reported children's self-injection practices at baseline and 30 days.

Results: Children (N = 20, 40% male) were 9.6 ± 1.3 years old and had T1D for 3.6 ± 2.3 years; HbA1c was 9.1 ± 2.0%; 20% of ITP and 50% of SE children used syringes (vs. pens) for injections. At baseline, 80% of both groups knew how to self-inject; most were taught by a parent/relative. Injection technique scores were low in both groups; ITP group increased their scores significantly postintervention. Practices of self-injection did not change in either group after 30 days.

Practice implications: The play-based intervention appeared to improve the injection technique in the short-term. Pilot findings support the development of a larger trial to evaluate the effectiveness of ITP on educating children on insulin injections.

Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild.

Design and methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis.

Results: Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child.

Practice implications: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.

Purpose: The purpose of this study was to obtain feedback on communication, care coordination, and transitions in care for hospitalized children with medical complexity (CMC).

Design and methods: This descriptive, mixed-methods study used online surveys with forced-choice and open-ended questions to obtain stakeholder feedback. Stakeholders included parents, healthcare providers, and nurses. Participants over 18 years of age were recruited from a Midwest children's hospital inpatient unit dedicated to care of CMC. Quantitative data were analyzed using t-tests and one-way analysis of variance. Qualitative description was used to analyze responses to open-ended questions.

Results: Parents' ratings of communication, care coordination, and transitions in care were generally high. Transitions from other facilities to the emergency department and unit received lower ratings. Providers and nurses gave high ratings to overall care, communication among providers and nurses on the patient unit, and experiences with discharge; however, between unit communication and unit-based coordination received lower ratings. Providers and nurses had higher ratings for discharge preparation than parents (p ≤ .001). Three themes were identified in responses to the open-ended questions: establishing balanced and collaborative relationships between the care team and families, taking a proactive approach to care coordination, and the importance of an inclusive, interdisciplinary, and centralized approach to care coordination and communication.

Practice implications: Collaboration among all stakeholders is needed to achieve coordinated care, inclusive communication, and transitions with positive outcomes during hospitalization. Parents identified a need for consistent communication from care teams, with the primary inpatient team taking a lead role. Including parents in care coordination and transitions in care is key, as they are the experts in their children's health and well-being.