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Parents in the Driver's Seat-Experiences of Parent-Delivered Baby-mCIMT Coached Remotely
Linköping University, Department of Biomedical and Clinical Sciences, Division of Children's and Women's Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
Karolinska Inst, Sweden; Astrid Lindgren Childrens Hosp, Sweden.
Linköping University, Department of Biomedical and Clinical Sciences, Division of Children's and Women's Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus. Karolinska Inst, Sweden; Astrid Lindgren Childrens Hosp, Sweden.ORCID iD: 0000-0002-8189-4098
Orebro Univ, Sweden.
2024 (English)In: Journal of Clinical Medicine, E-ISSN 2077-0383, Vol. 13, no 16, article id 4864Article in journal (Refereed) Published
Abstract [en]

Background/Objectives: Recent guidelines on early intervention in children at high risk of cerebral palsy (CP) recommend parental involvement and family-centered home-based interventions with parents as primary trainers. Therapist coaching by home visitation is resource demanding, and telerehabilitation is a viable option for remote intervention and coaching. This study aims to describe parents' experiences of engaging in Baby-mCIMT coached remotely. Their infants are at high risk of unilateral cerebral palsy and the parents have been the primary trainers in regard to home-based intervention, optimizing the use of the affected hand. Methods: A qualitative approach involving semi-structured interviews with eight parents was employed. Data were analyzed using qualitative content analysis. Results: The overarching theme "Parents in the driver's seat-learning through remote coaching to create conditions to enhance the child's motor skills" describes parents' experiences as primary training providers. The following three underlying categories with subcategories were identified: (1) Baby-mCIMT coached remotely in an everyday context-practical and technical prerequisites; (2) the child's response and the therapists' coaching supports active parental learning; (3) capability and sense of control-strengthening and demanding aspects. Conclusions: Our findings revealed that Baby-mCIMT coached remotely empowered the parents as primary trainers, which provided them with opportunities for understanding and learning about their child and their development. The findings underscore the importance of responsive professional guidance and a strong therapist-parent relationship to succeed with the Baby-mCIMT program coached remotely and to manage the digital coaching format.

Place, publisher, year, edition, pages
MDPI , 2024. Vol. 13, no 16, article id 4864
Keywords [en]
early intervention; remote Baby-mCIMT; telerehabilitation; unilateral cerebral palsy; home-training; parent experience
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:liu:diva-208008DOI: 10.3390/jcm13164864ISI: 001305659700001PubMedID: 39201006OAI: oai:DiVA.org:liu-208008DiVA, id: diva2:1903461
Note

Funding Agencies|Linnea and Josef Carlsson Foundation; Stiftelsen for Barnmedicinsk forskning, Linkoping, Queen Silvia's Jubilee Fund; Joanna Cocozza Foundation; Region Stockholm, clinical postdoctoral [2019-1138]

Available from: 2024-10-04 Created: 2024-10-04 Last updated: 2024-10-09
In thesis
1. Pediatric ischemic stroke and Cerebral Palsy: Early Identification and Intervention
Open this publication in new window or tab >>Pediatric ischemic stroke and Cerebral Palsy: Early Identification and Intervention
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Pediatric ischemic stroke can affect children of all ages often leading to motor impairment. Early identification of children at risk of permanent motor impairments such as cerebral palsy (CP) or hemiparesis is crucial to enable timely interventions optimizing their functional outcomes. One method for early assessment in infants is Prechtl’s qualitative assessment of General movements (GMA), along with an early motor intervention applied before 12 months of age: Baby-mCIMT.  The aim of the thesis was to identify adverse motor outcomes after pediatric ischemic stroke, assess potential risk factors and explore the feasibility of early identification and intervention in infants at high risk of CP using remote eHealth approaches.  

Study I is an epidemiological study using a national register-based cohort of individuals with pediatric ischemic stroke and matched controls, investigating the risk and contributing factors for adverse motor outcomes. The study found that in children affected by ischemic stroke, 32% were diagnosed with adverse motor outcomes, with a higher risk in childhood stroke compared to perinatal stroke. No other significant risk factors such as gestational age, sex or parental age were identified.  

Study II evaluates remote GMA in a neonatal risk group, focusing on inter-rater reliability and smartphone app usability, as part of the methodological approach in an ongoing nationwide study. Caregivers filmed their infants’ spontaneous movements with a smartphone app. The films were analyzed by certified assessors blinded to the infants’ medical history. Inter-rater reliability was moderate between assessors but substantial when the assessors’ final group consensus was compared to a GMA expert’s assessment. The app was rated highly for usability according to film quality and parental satisfaction.  

Study III examines early intervention in infants at risk of unilateral CP using the Baby-mCIMT program comparing two groups with different parental coaching approaches: remote and in-person. The outcome was evaluated based on the infants’ development of hand function, assessed before and after the intervention. The result showed that the infants’ hand function developed equally, regardless of the coaching approach used.  

Study IV describes parental experiences of implementing training according to the Baby-mCIMT program with remote coaching. The findings highlighted that the remote approach offered parents as primary trainers opportunities for learning and empowerment. The responsive professional guidance and a strong therapist-parent relationship were found to be important for implementing the intervention.  

This thesis highlights the substantial risk of motor impairment following pediatric ischemic stroke, emphasizing the need of targeted actions, regardless of the child’s age at the time of the ischemic stroke. Parents can effectively engage in remote assessment and early intervention with professional support, even at a geographical distance.   

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2024. p. 89
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1919
Keywords
Pediatric ischemic stroke, Adverse motor outcome, Cerebral palsy, General movements assessment, Baby-mCIMT, eHealth
National Category
Pediatrics
Identifiers
urn:nbn:se:liu:diva-208347 (URN)10.3384/9789180756587 (DOI)9789180756570 (ISBN)9789180756587 (ISBN)
Public defence
2024-10-25, Hasselquistsalen, building 511, Campus US, Linköping, 13:00 (English)
Opponent
Supervisors
Available from: 2024-10-09 Created: 2024-10-09 Last updated: 2024-10-09Bibliographically approved

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Svensson, KatarinaSundelin, Heléne
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