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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.
KEY MESSAGES
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.
Acknowledgement
The authors wish to thank the parents for participating in interviews in their own home as well as nurses and physicians at the neonatal ward at Nordsjællands Hospital for recruiting families for the study.
Consent to publish
The parents have given their written consent to publish the information obtained. Consent to publish details has been obtained from both parents, and all efforts have been made to anonymize the participants.
Authors contributions
The corresponding author, physiotherapist and PhD student Annemette Brown, had primary responsibility for the protocol development, patient screening, enrollment, interviewing the parents, preliminary data analysis and writing the manuscript.
The second author associated professor Åsa B. Tornberg and the third author, Professor Inger Kristensson Hallström, participated in development of the protocol, supervised the design and execution of the study, and participated in the analytical framework of the study, and contributed to writing of the manuscript and the final data analysis. All authors reviewed and approved the final manuscript and agree to be held accountable for all aspects of the work.
Dislcosure statement
The authors declare no conflict of interest. Nor had the funders any role in the design of the study; in collection, analyses, or interpretation of the data; in writing of the manuscript; or in the decision to publish results.
Data availability statement
The data are not publicly available due to the nature thereof: the interviews are very personal, and access is therefore restricted due to confidentiality. We summarized the data of the participants in the manuscript text. The data of the findings in this study can be provided from PhD student Annemette Brown on reasonable request.