Participatory design in the development of an early therapy intervention for perinatal stroke

Abstract

BackgroundPerinatal stroke is the leading cause of unilateral (hemiparetic) cerebral palsy, with life-long personal, social and financial consequences. Translational research findings indicate that early therapy intervention has the potential for significant improvements in long-term outcome in terms of motor function. By involving families and health professionals in the development and design stage, we aimed to produce a therapy intervention which they would engage with.MethodsNine parents of children with hemiparesis and fourteen health professionals involved in the care of infants with perinatal stroke took part in peer review and focus groups to discuss evolving therapy materials, with revisions made iteratively. The materials and approach were also discussed at a meeting of the London Child Stroke Research Reference Group. Focus group data were coded using Normalisation Process Theory constructs to explore potential barriers and facilitators to routine uptake of the intervention.ResultsWe developed the Early Therapy in Perinatal Stroke (eTIPS) program - a parent-delivered, home-based complex intervention addressing a current gap in practice for infants in the first 6 months of life after unilateral perinatal stroke and with the aim of improving motor outcome. Parents and health professionals saw the intervention as different from usual practice, and valuable (high coherence). They were keen to engage (high cognitive participation). They considered the tasks for parents to be achievable (high collective action). They demonstrated trust in the approach and felt that parents would undertake the recommended activities (high collective action). They saw the approach as flexible and adaptable (high reflexive monitoring). Following suggestions made, we added a section on involving the extended family, and obtained funding for a website and videos to supplement written materials.ConclusionsFocus groups with parents and health professionals provided meaningful feedback to iteratively improve the intervention materials prior to embarking on a pilot study. The intervention has a high potential to normalize and become a routine part of parents’ interactions with their child following unilateral perinatal stroke.

Early intervention programmes for infants at high risk of atypical neurodevelopmental outcome

“…the effect of having an early intervention team on child and family outcomes). Plans for development, evaluation, and implementation must be made in partnership with parents . We are currently exploring parent views of their involvement in early intervention, barriers, and facilitators to parent involvement, and the influence of the parent–therapist partnership, before formal evaluation of the EI SMART approach.…”

Diagnosing cerebral palsy in full‐term infants

“…However, the asymmetry can also present later, after 6–9 months following cortical pruning and maladaptive response to injury – thus, early intervention is critical for the preservation and reorganisation of motor function. Single or multiple disabilities, such as hemiplegic CP, epilepsy, cognitive or behavioural disorders, may be present following perinatal stroke depending on the location of the lesion …”

“…Single or multiple disabilities, such as hemiplegic CP, epilepsy, cognitive or behavioural disorders, may be present following perinatal stroke depending on the location of the lesion. [14][15][16] Infants at the highest risk of CP are increasingly diagnosed early using the new international early diagnosis clinical practice guideline. 17 Moderate risk for CP Full-term infants at moderate risk of CP include those with congenital disabilities, septicaemia, meningitis, small for gestational age or growth-restricted infants and those who cannot sit by 9 months or who demonstrate early motor asymmetry.…”

Towards Reliable, Automated General Movement Assessment for Perinatal Stroke Screening in Infants Using Wearable Accelerometers

“…Early therapy intervention in unilateral PS is under investigation [6,7] and may improve motor outcomes [5]. However, early intervention requires early detection of affected infants.…”