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.

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.

In-Motion-App for remote General Movement Assessment: a multi-site observational study.

OBJECTIVES: To determine whether videos taken by parents of their infants' spontaneous movements were in accordance with required standards in the In-Motion-App, and whether the videos could be remotely scored by a trained General Movement Assessment (GMA) observer. Additionally, to assess the feasibility of using home-based video recordings for automated tracking of spontaneous movements, and to examine parents' perceptions and experiences of taking videos in their homes. DESIGN: The study was a multi-centre prospective observational study. SETTING: Parents/families of high-risk infants in tertiary care follow-up programmes in Norway, Denmark and Belgium. METHODS: Parents/families were asked to video record their baby in accordance with the In-Motion standards which were based on published GMA criteria and criteria covering lighting and stability of smartphone. Videos were evaluated as GMA 'scorable' or 'non-scorable' based on predefined criteria. The accuracy of a 7-point body tracker software was compared with manually annotated body key points. Parents were surveyed about the In-Motion-App information and clarity. PARTICIPANTS: The sample comprised 86 parents/families of high-risk infants. RESULTS: The 86 parent/families returned 130 videos, and 121 (96%) of them were in accordance with the requirements for GMA assessment. The 7-point body tracker software detected more than 80% of body key point positions correctly. Most families found the instructions for filming their baby easy to follow, and more than 90% reported that they did not become more worried about their child's development through using the instructions. CONCLUSIONS: This study reveals that a short instructional video enabled parents to video record their infant's spontaneous movements in compliance with the standards required for remote GMA. Further, an accurate automated body point software detecting infant body landmarks in smartphone videos will facilitate clinical and research use soon. Home-based video recordings could be performed without worrying parents about their child's development. TRIALS REGISTRATION NUMBER: NCT03409978.

Formal training in general movement assessment is required to effectively evaluate infants with perinatal asphyxia in outpatient settings.

AIM: General movement assessment (GMA) can help to identify children with a high risk of developing neurological dysfunction, such as cerebral palsy, and certified training is provided in this specialism. The aim of this study was to investigate the feasibility and reliability of using video recordings to assess GMA, in a busy Danish outpatient clinic. METHODS: The study comprised 30-term infants born with perinatal asphyxia, who were video recorded at three months. They were assessed by two certified GMA observers and re-assessed two weeks later. Interobserver and intra-observer agreements were analysed using proportional agreement, and nominal kappa statistics were used to calculate 95% confidence intervals (95% CI). RESULTS: We found substantial and almost perfect interobserver and intra-observer reliability. Intra-observer agreement was 0.85 (95% CI: 0.65-1.00; p < 0.0001) and 0.85 (95% CI: 0.62-1.00; p < 0.0001), and interobserver agreement was 0.71 (95% CI: 0.45-0.96; p < 0.0001) at time point one and 0.85 (95% CI: 0.63-1.00; p < 0.0001) two weeks later. All video recordings were completed within our multidisciplinary outpatient clinic without delay. CONCLUSION: This study demonstrated the reliability of the GMA method in a busy multidisciplinary Danish paediatric outpatient setting, when assessors had been formally trained in the method and used it regularly.

[Pain among children with cerebral palsy]. / Smerter hos børn og unge med cerebral parese.

Although children diagnosed with cerebral palsy have a number of pain triggers (directly from the cerebral palsy, from sequelae and iatrogenic), pain is underdiagnosed. The gap between research and clinical practice is well-known as this group of patients demand special knowledge regarding monitoring of pain. This article presents various pain-monitoring methods. Combining different methods may improve pain assessment and thereby improve quality of life for children with cerebral palsy.