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BMC Pediatrics
Published in: BMC Pediatrics 1/2017

Open Access 01-12-2017 | Research article

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

Authors: Anna Purna Basu, Janice Elizabeth Pearse, Jessica Baggaley, Rose Mary Watson, Tim Rapley

Published in: BMC Pediatrics | Issue 1/2017

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Abstract

Background

Perinatal 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.

Methods

Nine 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.

Results

We 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.

Conclusions

Focus 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.
Literature
1.
Raju TN, Nelson KB, Ferriero D, Lynch JK. Ischemic perinatal stroke: summary of a workshop sponsored by the National Institute of Child Health and Human Development and the National Institute of Neurological Disorders and Stroke. Pediatrics. 2007;120(3):609–16.CrossRefPubMed
2.
Berfelo FJ, Kersbergen KJ, van Ommen CH, Govaert P, van Straaten HL, Poll-The BT, van Wezel-Meijler G, Vermeulen RJ, Groenendaal F, de Vries LS, et al. Neonatal cerebral sinovenous thrombosis from symptom to outcome. Stroke. 2010;41(7):1382–8.CrossRefPubMed
3.
Armstrong-Wells J, Johnston SC, Wu YW, Sidney S, Fullerton HJ. Prevalence and predictors of perinatal hemorrhagic stroke: results from the kaiser pediatric stroke study. Pediatrics. 2009;123(3):823–8.CrossRefPubMed
4.
de Vries LS, Roelants-van Rijn AM, Rademaker KJ, Van Haastert IC, Beek FJ, Groenendaal F. Unilateral parenchymal haemorrhagic infarction in the preterm infant. Eur J Paediatr Neurol. 2001;5(4):139–49.CrossRefPubMed
5.
Schulzke S, Weber P, Luetschg J, Fahnenstich H. Incidence and diagnosis of unilateral arterial cerebral infarction in newborn infants. J Perinat Med. 2005;33(2):170–5.CrossRefPubMed
6.
Benders MJ, Groenendaal F, Uiterwaal CS, de Vries LS. Perinatal arterial stroke in the preterm infant. Semin Perinatol. 2008;32(5):344–9.CrossRefPubMed
7.
Sreenan C, Bhargava R, Robertson CM. Cerebral infarction in the term newborn: clinical presentation and long-term outcome. J Pediatr. 2000;137(3):351–5.CrossRefPubMed
8.
De Veber GA, MacGregor D, Curtis R, Mayank S. Neurologic outcome in survivors of childhood arterial ischemic stroke and sinovenous thrombosis. J Child Neurol. 2000;15(5):316–24.CrossRef
9.
10.
Trauner DA, Chase C, Walker P, Wulfeck B. Neurologic profiles of infants and children after perinatal stroke. Pediatr Neurol. 1993;9(5):383–6.CrossRefPubMed
11.
Lee J, Croen LA, Lindan C, Nash KB, Yoshida CK, Ferriero DM, Barkovich AJ, Wu YW. Predictors of outcome in perinatal arterial stroke: a population-based study. Ann Neurol. 2005;58(2):303–8.CrossRefPubMed
12.
Mercuri E, Barnett A, Rutherford M, Guzzetta A, Haataja L, Cioni G, Cowan F, Dubowitz L. Neonatal cerebral infarction and neuromotor outcome at school age. Pediatrics. 2004;113(1 Pt 1):95–100.CrossRefPubMed
13.
Chabrier S, Husson B, Dinomais M, Landrieu P, Nguyen The Tich S. New insights (and new interrogations) in perinatal arterial ischemic stroke. Thromb Res. 2011;127(1):13–22.CrossRefPubMed
14.
O’Brien G, Bass A, Rosenbloom L. Cerebral palsy and ageing. In: Developmental disability and ageing. London: MacKeith Press; 2009. p. 39–52.
15.
Russo RN, Goodwin EJ, Miller MD, Haan EA, Connell TM, Crotty M. Self-esteem, self-concept, and quality of life in children with hemiplegic cerebral palsy. J Pediatr. 2008;153(4):473–7.CrossRefPubMed
16.
Kirton A, Armstrong-Wells J, Chang T, Deveber G, Rivkin MJ, Hernandez M, Carpenter J, Yager JY, Lynch JK, Ferriero DM. Symptomatic neonatal arterial ischemic stroke: the International Pediatric Stroke Study. Pediatrics. 2011;128(6):e1402–10.CrossRefPubMed
17.
18.
Levy SR, Abroms IF, Marshall PC, Rosquete EE. Seizures and cerebral infarction in the full-term newborn. Ann Neurol. 1985;17(4):366–70.CrossRefPubMed
19.
Lee J, Croen LA, Backstrand KH, Yoshida CK, Henning LH, Lindan C, Ferriero DM, Fullerton HJ, Barkovich AJ, Wu YW. Maternal and infant characteristics associated with perinatal arterial stroke in the infant. JAMA. 2005;293(6):723–9.CrossRefPubMed
20.
Kirton A, Deveber G, Pontigon AM, Macgregor D, Shroff M. Presumed perinatal ischemic stroke: vascular classification predicts outcomes. Ann Neurol. 2008;63(4):436–43.CrossRefPubMed
21.
Chen CY, Tafone S, Lo W, Heathcock JC. Perinatal stroke causes abnormal trajectory and laterality in reaching during early infancy. Res Dev Disabil. 2015;38:301–8.CrossRefPubMed
22.
Chen CY, Lo WD, Heathcock JC. Neonatal stroke causes poor midline motor behaviors and poor fine and gross motor skills during early infancy. Res Dev Disabil. 2013;34(3):1011–7.CrossRefPubMed
23.
24.
Hamilton W, Huang H, Seiber E, Lo W. Cost and outcome in pediatric ischemic stroke. J Child Neurol. 2015.
25.
Basu A, Baggaley J, Simpson K. Case notes review of perinatal stroke in term and preterm infants in the northern region over A 10 year period. Arch Dis Child. 2016;101(S1):A60.
26.
27.
Nordstrand L, Holmefur M, Kits A, Eliasson AC. Improvements in bimanual hand function after baby-CIMT in two-year old children with unilateral cerebral palsy: a retrospective study. Res Dev Disabil. 2015;41–42:86–93.CrossRefPubMed
28.
Burzi V, Tealdi G, Boyd RN, Guzzetta A. Action observation in infancy: implications for neuro-rehabilitation. Dev Med Child Neurol. 2016;58 Suppl 4:74–7.CrossRefPubMed
29.
Guzzetta A, Boyd RN, Perez M, Ziviani J, Burzi V, Slaughter V, Rose S, Provan K, Findlay L, Fisher I, et al. UP-BEAT (Upper Limb Baby Early Action-observation Training): protocol of two parallel randomised controlled trials of action-observation training for typically developing infants and infants with asymmetric brain lesions. BMJ Open. 2013;3:e002512. doi:10.1136/bmjopen-2012-002512.CrossRefPubMedPubMedCentral
30.
Eyre J, Taylor J, Villagra F, Smith M, Miller S. Evidence of activity-dependent withdrawal of corticospinal projections during human development. Neurology. 2001;57:1543–54.CrossRefPubMed
31.
Eyre JA. Corticospinal tract development and its plasticity after perinatal injury. Neurosci Biobehav Rev. 2007;31(8):1136–49.CrossRefPubMed
32.
Martin JH, Chakrabarty S, Friel KM. Harnessing activity-dependent plasticity to repair the damaged corticospinal tract in an animal model of cerebral palsy. Dev Med Child Neurol. 2011;53 Suppl 4:9–13.CrossRefPubMedPubMedCentral
33.
Bhat AN, Galloway JC. Toy-oriented changes during early arm movements: hand kinematics. Infant Behav Dev. 2006;29(3):358–72.CrossRefPubMed
34.
Eyre JA, Smith M, Dabydeen L, Clowry GJ, Petacchi E, Battini R, Guzzetta A, Cioni G. Is hemiplegic cerebral palsy equivalent to amblyopia of the corticospinal system? Ann Neurol. 2007;62(5):493–503.CrossRefPubMed
35.
Salimi I, Friel KM, Martin JH. Pyramidal tract stimulation restores normal corticospinal tract connections and visuomotor skill after early postnatal motor cortex activity blockade. J Neurosci. 2008;28(29):7426–34.CrossRefPubMedPubMedCentral
36.
Martin JH, Lee SJ. Activity-dependent competition between developing corticospinal terminations. NeuroReport. 1999;10:2277–82.CrossRefPubMed
37.
Eyre JA, Taylor JP, Villagra F, Smith M, Miller S. Evidence of activity-dependent withdrawal of corticospinal projections during human development. Neurology. 2001;57(9):1543–54.CrossRefPubMed
38.
Basu A, Graziadio S, Smith M, Clowry GJ, Cioni G, Eyre JA. Developmental plasticity connects visual cortex to motoneurons after stroke. Ann Neurol. 2010;67(1):132–6.CrossRefPubMed
39.
Martin JH, Donarummo L, Hacking A. Impairments in prehension produced by early postnatal sensory motor cortex activity blockade. J Neurophysiol. 2000;83(2):895–906.PubMed
40.
Tan AM, Chakrabarty S, Kimura H, Martin JH. Selective corticospinal tract injury in the rat induces primary afferent fiber sprouting in the spinal cord and hyperreflexia. J Neurosci. 2012;32(37):12896–908.CrossRefPubMedPubMedCentral
41.
Chakrabarty S, Shulman B, Martin JH. Activity-dependent codevelopment of the corticospinal system and target interneurons in the cervical spinal cord. J Neurosci. 2009;29(27):8816–27.CrossRefPubMedPubMedCentral
42.
43.
Friel K, Chakrabarty S, Kuo HC, Martin J. Using motor behavior during an early critical period to restore skilled limb movement after damage to the corticospinal system during development. J Neurosci. 2012;32(27):9265–76.CrossRefPubMedPubMedCentral
44.
Kozlowski DA, James DC, Schallert T. Use-dependent exaggeration of neuronal injury after unilateral sensorimotor cortex lesions. J Neurosci. 1996;16(15):4776–86.PubMed
45.
Humm JL, Kozlowski DA, Bland ST, James DC, Schallert T. Use-dependent exaggeration of brain injury: is glutamate involved? Exp Neurol. 1999;157(2):349–58.CrossRefPubMed
46.
Bland ST, Schallert T, Strong R, Aronowski J, Grotta JC, Feeney DM. Early exclusive use of the affected forelimb after moderate transient focal ischemia in rats : functional and anatomic outcome. Stroke. 2000;31(5):1144–52.CrossRefPubMed
47.
Basu A, Eyre J. A plea for consideration of the less affected hand in therapeutic approaches to hemiplegia. Dev Med Child Neurol. 2012;54(4):380.CrossRefPubMed
48.
Coq JO, Strata F, Russier M, Safadi FF, Merzenich MM, Byl NN, Barbe MF. Impact of neonatal asphyxia and hind limb immobilization on musculoskeletal tissues and S1 map organization: implications for cerebral palsy. Exp Neurol. 2008;210(1):95–108.CrossRefPubMed
49.
Al-Whaibi RM. Effect of environmental cues on upper limb movement of healthy neonates: implication for rehabilitation following perinatal stroke. Newcastle: PhD. PhD thesis; 2009.
50.
Dirks T, Hadders-Algra M. The role of the family in intervention of infants at high risk of cerebral palsy: a systematic analysis. Dev Med Child Neurol. 2011;53 Suppl 4:62–7.CrossRefPubMed
51.
Stieber NA, Gilmour S, Morra A, Rainbow J, Robitaille S, Van Arsdell G, McCrindle BW, Gibson BE, Longmuir PE. Feasibility of improving the motor development of toddlers with congenital heart defects using a home-based intervention. Pediatr Cardiol. 2012;33(4):521–32.CrossRefPubMed
52.
Novak I, Cusick A, Lannin N. Occupational therapy home programs for cerebral palsy: double-blind, randomized, controlled trial. Pediatrics. 2009;124(4):e606–14.CrossRefPubMed
53.
Papavasiliou AS. Management of motor problems in cerebral palsy: a critical update for the clinician. Eur J Paediatr Neurol. 2009;13(5):387–96.CrossRefPubMed
54.
Guzzetta A, Pizzardi A, Belmonti V, Boldrini A, Carotenuto M, D’Acunto G, Ferrari F, Fiori S, Gallo C, Ghirri P, et al. Hand movements at 3 months predict later hemiplegia in term infants with neonatal cerebral infarction. Dev Med Child Neurol. 2010;52(8):767–72.CrossRefPubMed
55.
Mercuri E, Rutherford M, Cowan F, Pennock J, Counsell S, Papadimitriou M, Azzopardi D, Bydder G, Dubowitz L. Early prognostic indicators of outcome in infants with neonatal cerebral infarction: a clinical, electroencephalogram, and magnetic resonance imaging study. Pediatrics. 1999;103(1):39–46.CrossRefPubMed
56.
Husson B, Hertz-Pannier L, Renaud C, Allard D, Presles E, Landrieu P, Chabrier S. Motor outcomes after neonatal arterial ischemic stroke related to early MRI data in a prospective study. Pediatrics. 2010;126(4):912–8.CrossRefPubMed
57.
Boardman JP, Ganesan V, Rutherford MA, Saunders DE, Mercuri E, Cowan F. Magnetic resonance image correlates of hemiparesis after neonatal and childhood middle cerebral artery stroke. Pediatrics. 2005;115(2):321–6.CrossRefPubMed
58.
De Vries LS, Groenendaal F, van Haastert IC, Eken P, Rademaker KJ, Meiners LC. Asymmetrical myelination of the posterior limb of the internal capsule in infants with periventricular haemorrhagic infarction: an early predictor of hemiplegia. Neuropediatrics. 1999;30(6):314–9.CrossRefPubMed
59.
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: new guidance. London: Medical Research Council; 2008.
60.
Bronfenbernner U. The bioecological theory of human development. In: Bronfenbrenner U, editor. Making human beings human: bioecological perspectives on human development. CA: Sage; 2005. p. 3–15.
61.
Chen HC, Chen CL, Kang LJ, Wu CY, Chen FC, Hong WH. Improvement of upper extremity motor control and function after home-based constraint induced therapy in children with unilateral cerebral palsy: immediate and long-term effects. Arch Phys Med Rehabil. 2014;95(8):1423–32.CrossRefPubMed
62.
Ferre CL, Brandao MB, Hung YC, Carmel JB, Gordon AM. Feasibility of caregiver-directed home-based hand-arm bimanual intensive training: a brief report. Dev Neurorehabil. 2015;18(1):69–74.CrossRefPubMed
63.
Kirkpatrick E, Pearse J, James P, Basu A. Effect of parent-delivered action observation therapy on upper limb function in unilateral cerebral palsy: a randomized controlled trial. Dev Med Child Neurol. 2016.
64.
Kellog WK. Using logic models to bring together planning, evaluation, and action: logic model development guide. Michigan: Kellog Foundation; 2004.
65.
Greenbaum J, Kyng M. Design at work: cooperative design of computer systems. Hillsday: Lawrence Erlbaum Associates; 1991.
66.
Murray E, Treweek S, Pope C, MacFarlane A, Ballini L, Dowrick C, Finch T, Kennedy A, Mair F, O’Donnell C, et al. Normalisation process theory: a framework for developing, evaluating and implementing complex interventions. BMC Med. 2010;8:63.CrossRefPubMedPubMedCentral
67.
Patton MQ. Qualitative evaluation and research methods. 3rd ed. Thousand Oaks: Sage; 2002.
68.
Tang KC, Davis A. Critical factors in the determination of focus group size. Fam Pract. 1995;12(4):474–5.CrossRefPubMed
69.
May CR, Mair F, Finch T, MacFarlane A, Dowrick C, Treweek S, Rapley T, Ballini L, Ong BN, Rogers A, et al. Development of a theory of implementation and integration: normalization process theory. Implement Sci. 2009;4:29.CrossRefPubMedPubMedCentral
70.
Rapley T. Some pragmatics of qualitative data analysis. In: Qualitative research: theory, method & practice. Sage Publications Ltd; 2010. p. 273–90.
71.
Glaser BG. The constant comparative method of qualitative analysis. Soc Probl. 1965;12:436–45.CrossRef
72.
Seale C. The quality of qualitative research. London: Sage Publications; 1999.CrossRef
73.
Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: Sage Publications; 2006.
74.
75.
76.
Hannay HJ, Ciaccia PJ, Kerr JW, Barrett D. Self-report of right-left confusion in college men and women. Percept Mot Skills. 1990;70(2):451–7.CrossRefPubMed
77.
Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, Altman DG, Barbour V, Macdonald H, Johnston M, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.CrossRefPubMed
78.
79.
Young B, Dixon-Woods M, Findlay M, Heney D. Parenting in a crisis: conceptualising mothers of children with cancer. Soc Sci Med. 2002;55(10):1835–47.CrossRefPubMed
80.
Tennant R, Hiller L, Fishwick R, Platt S, Joseph S, Weich S, Parkinson J, Secker J, Stewart-Brown S. The Warwick-Edinburgh Mental Well-being Scale (WEMWBS): development and UK validation. Health Qual Life Outcomes. 2007;5:63.CrossRefPubMedPubMedCentral
81.
Gibaud-Wallston J, Wandersman LP. Development and utility of the parenting sense of competence scale. Toronto: American Psychological Association; 1978.
82.
Ohan JL, Leung DW, Johnston C. The parenting sense of competence scale: evidence of a stable factor structure and validity. Canadian Journal of Behavioural Science-Revue Canadienne Des Sciences Du Comportement. 2000;32(4):251–61.CrossRef
83.
Glasgow RE, Vogt TM, Boles SM. Evaluating the public health impact of health promotion interventions: the RE-AIM framework. Am J Public Health. 1999;89(9):1322–7.CrossRefPubMedPubMedCentral
84.
Ramadas A, Quek KF, Chan CK, Oldenburg B. Web-based interventions for the management of type 2 diabetes mellitus: a systematic review of recent evidence. Int J Med Inform. 2011;80(6):389–4.CrossRefPubMed
Metadata
Title
Participatory design in the development of an early therapy intervention for perinatal stroke
Authors
Anna Purna Basu
Janice Elizabeth Pearse
Jessica Baggaley
Rose Mary Watson
Tim Rapley
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2017
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-017-0797-9

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