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  • Title: Parents' lived experience of early risk assessment for cerebral palsy in their young child using a mobile application after discharge from hospital in the newborn period.
    Author: Brown A, Tornberg ÅB, Kristensson Hallström I.
    Journal: Ann Med; 2024 Dec; 56(1):2309606. PubMed ID: 38300887.
    Abstract:
    INTRODUCTION: General Movement assessment (GMA) is considered the golden standard for early identification of infants with a high risk of developing cerebral palsy (CP). The aim of this study was to explore parents' lived experience of early risk assessment for CP using a mobile application for home video recording after discharge from hospital stay in the newborn period. METHODS: An inductive qualitative design using a hermeneutical phenomenological approach was chosen, and fourteen parents with children at risk of CP were interviewed at home. The hermeneutical phenomenological approach describes humans' lived experiences of a specific phenomenon with a possibility of deeper understanding of the expressed statements. The interviews were analyzed using the fundamental lifeworld existential dimensions as guidelines for describing the parents' lived experience. RESULTS: The overall understanding of the parents' experience was 'Finding control in an uncontrolled life situation'. During the often-long hospitalizations, the parents struggled with loss of control and difficulty in understanding what was going on. The use of the mobile application followed by a swift result made them feel in control and have a brighter view of the future. CONCLUSIONS: The findings suggest that the mobile application did not seem to worry the parents. Instead, it provided the parents with a sense of active participation in the care and treatment of their child. The mobile application should be accompanied with clear instructions and guidelines for the parents and details about how and when the result is given. For the first time, parents’ experiences concerning early assessment for cerebral palsy using a mobile application are profoundly explored.Early risk assessment for cerebral palsy performed by parents at home using a mobile application did not seem to increase the parents’ worry; instead, it gave them a sense of control.Involving parents in the care and treatment of their child is vital to increase parental participation and control.
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