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  • 1
    Online Resource
    Online Resource
    “The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia
    Wiley ; 2019
    In:  Journal for Specialists in Pediatric Nursing Vol. 24, No. 3 ( 2019-07)
    Details
    In: Journal for Specialists in Pediatric Nursing, Wiley, Vol. 24, No. 3 ( 2019-07)
    Abstract: Last decennia remarkable advances have been made in decreasing the mortality rate of children with congenital diaphragmatic hernia (CDH), resulting in a relatively growing patient group with long‐term complications and complex care needs. These consequences have a huge impact on the quality of life of both children and their families. To provide practical recommendations for improving the quality of care for this patient group, the present study sought to obtain insights into the experiences and needs of parents with a child with CDH. Design and Methods A qualitative study was conducted on the experiences and needs of parents with a child with CDH living in the Netherlands. Data was obtained by means of a discourse analyses of 17 weblogs written by parents and three online focus groups with 8–12 parents per group ( n  = 29). The data was analysed thematically and structured by using the model of Lawoko (2007) on parental satisfaction with care. Results Although parents were generally satisfied with the delivered care, they frequently encountered challenges in managing insecurities throughout the care process. Besides the unpredictable disease progress, insecurities were exacerbated by: (a) limited specialized knowledge of long‐term consequences, (b) logistical problems, and (c) nontransparent communication. Providing security through, for instance, a clear care plan and by engaging parents in the decision‐making process helped them feel more in control. Practice Implications This study showed that parents’ main challenge was to manage insecurities. Creating securities by providing a care plan and involving parents in the decision‐making process helped parents to feel more in control. To improve quality of care for children with CDH, future measures should, therefore, focus on reducing insecurities by managing expectations, improving transparency and stimulating engagement.
    Type of Medium: Online Resource
    ISSN: 1539-0136 , 1744-6155
    URL: Issue
    URL: Article
    DOI: 10.1111/jspn.2019.24.issue-3
    DOI: 10.1111/jspn.12247
    Language: English
    Publisher: Wiley
    Publication Date: 2019
    detail.hit.zdb_id: 2070374-0
    detail.hit.zdb_id: 2095309-4
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  • 2
    Online Resource
    Online Resource
    European Respiratory Society guideline on long-term management of children with bronchopulmonary dysplasia
    European Respiratory Society (ERS) ; 2020
    In:  European Respiratory Journal Vol. 55, No. 1 ( 2020-01), p. 1900788-
    Details
    In: European Respiratory Journal, European Respiratory Society (ERS), Vol. 55, No. 1 ( 2020-01), p. 1900788-
    Abstract: This document provides recommendations for monitoring and treatment of children in whom bronchopulmonary dysplasia (BPD) has been established and who have been discharged from the hospital, or who were 〉 36 weeks of postmenstrual age. The guideline was based on predefined Population, Intervention, Comparison and Outcomes (PICO) questions relevant for clinical care, a systematic review of the literature and assessment of the evidence using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach. After considering the balance of desirable (benefits) and undesirable (burden, adverse effects) consequences of the intervention, the certainty of the evidence, and values, the task force made conditional recommendations for monitoring and treatment of BPD based on very low to low quality of evidence. We suggest monitoring with lung imaging using ionising radiation in a subgroup only, for example severe BPD or recurrent hospitalisations, and monitoring with lung function in all children. We suggest to give individual advice to parents regarding daycare attendance. With regards to treatment, we suggest the use of bronchodilators in a subgroup only, for example asthma-like symptoms, or reversibility in lung function; no treatment with inhaled or systemic corticosteroids; natural weaning of diuretics by the relative decrease in dose with increasing weight gain if diuretics are started in the neonatal period; and treatment with supplemental oxygen with a saturation target range of 90–95%. A multidisciplinary approach for children with established severe BPD after the neonatal period into adulthood is preferable. These recommendations should be considered until new and urgently needed evidence becomes available.
    Type of Medium: Online Resource
    ISSN: 0903-1936 , 1399-3003
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1183/13993003.00788-2019
    DOI: 10.1183/13993003.00788-2019.Supp1
    DOI: 10.1183/13993003.00788-2019.Shareable1
    Language: English
    Publisher: European Respiratory Society (ERS)
    Publication Date: 2020
    detail.hit.zdb_id: 2834928-3
    detail.hit.zdb_id: 1499101-9
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