Parents' experiences with a home-based upper limb training program using a video coaching approach for infants and toddlers with unilateral cerebral palsy: a qualitative interview study

Anke Pm Verhaegh, Nienke B Nuijen, Pauline Bm Aarts, Maria W G Nijhuis-van der Sanden, Michèl Aap Willemsen, Brenda E Groen, Johanna E Vriezekolk, Anke Pm Verhaegh, Nienke B Nuijen, Pauline Bm Aarts, Maria W G Nijhuis-van der Sanden, Michèl Aap Willemsen, Brenda E Groen, Johanna E Vriezekolk

Abstract

Background: Although early home-based upper limb training programs are promising, in-depth understanding of parents' experiences with these programs is still limited. We developed an early home-based upper limb training program for infants and toddlers (8-36 months) with or at risk of unilateral cerebral palsy using video coaching for parents. The aim of this qualitative study was to evaluate parents' experiences with the home-based training program using a video coaching approach in order to optimize implementation strategies.

Methods: We held semi-structured interviews with parents of 13 children with unilateral cerebral palsy, who participated in our program in the period from 2014 - 2017. On average, parents had delivered two training periods of the program at the time of the interviews. Interviews were analyzed using inductive thematic content analysis.

Results: We identified three overarching interacting themes that shaped the experiences of parents with the program: 1) Parental learning comprising the subthemes parents' training competencies and the facilitative and reinforcing role of video coaching, 2) Parental load comprising the subthemes flexibility of the program, supportive network, competing demands, and child's mood and functional capacities, and 3) Parental perseverance comprising the subthemes beliefs and expectancies and seeing child's functional improvements.

Conclusions: For successful implementation of an early home-based upper limb training program using video coaching, support in delivering home-training from a therapist or from others within parents' social network, is needed to relieve parental load. Seeing functional improvements of their child on the videos increased parents' motivation to continue with the training. Positively phrased feedback from an occupational therapist stimulated parents' perseverance and training competency.

Keywords: Early intervention; Home training program; Occupational therapy; Unilateral cerebral palsy; Video coaching.

Conflict of interest statement

The authors have declared that no competing interests exist.

© 2022. The Author(s).

Figures

Fig. 1
Fig. 1
Conceptual model reflecting the interrelatedness between themes identified relevant for implementation of an early home-based upper limb training program using video coaching

References

    1. Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T. An update on the prevalence of cerebral palsy: A systematic review and meta-analysis. Dev Med Child Neurol. 2013;55:509–19. doi: 10.1111/dmcn.12080.
    1. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. A report: The definition and classification of cerebral palsy April 2006. Dev Med Child Neur. 2007;109:8–14.
    1. Wu YW, Croen LA, Shah SJ, Newman TB, Najjar DV. Cerebral palsy in a term population: Risk factors and neuroimaging findings. Pediatrics. 2006 doi: 10.1542/peds.2006-0278.
    1. Surveillance of Cerebral Palsy in Europe Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers Surveillance of Cerebral Palsy in Europe (SCPE) Dev Med Child Neurol. 2000 doi: 10.1017/s0012162200001511.
    1. Hoare BJ, Wallen MA, Thorley MN, Jackman ML, Carey LM, Imms C. Constraint-induced movement therapy in children with unilateral cerebral palsy. Cochrane Database Syst Rev. 2019 doi: 10.1002/14651858.CD004149.pub3.
    1. Zielinski IM, Jongsma MLA, Baas CM, Aarts PBM, Steenbergen B. Unravelling developmental disregard in children with unilateral cerebral palsy by measuring event-related potentials during a simple and complex task. BMC Neurol. 2014 doi: 10.1186/1471-2377-14-6.
    1. Hoare B, Greaves S. Unimanual versus bimanual therapy in children with unilateral cerebral palsy: Same, same, but different. J Pediatr Rehabil Med. 2017 doi: 10.3233/PRM-170410.
    1. McIntyre S, Morgan C, Walker K, Novak I. Cerebral palsy-Don’t delay. Dev Disabil Res Rev. 2011 doi: 10.1002/ddrr.1106.
    1. Novak I, Berry J. Home program intervention effectiveness evidence. Phys Occup Ther Pediatr. 2014 doi: 10.3109/01942638.2014.964020.
    1. Eliasson AC, Nordstrand L, Ek L, Lennartsson F, Sjöstrand L, Tedroff K, et al. The effectiveness of Baby-CIMT in infants younger than 12 months with clinical signs of unilateral-cerebral palsy; an explorative study with randomized design. Res Dev Disabil. 2018 doi: 10.1016/j.ridd.2017.11.006.
    1. Chamudot R, Parush S, Rigbi A, Horovitz R, Gross-Tsur V. Effectiveness of modified constraint-induced movement therapy compared with bimanual therapy home programs for infants with hemiplegia: A randomized controlled trial. Am J Occup Ther. 2018 doi: 10.5014/ajot.2018.025981.
    1. Novak I. Parent experience of implementing effective home programs. Phys Occup Ther Pediatr. 2011 doi: 10.3109/01942638.2010.533746.
    1. Beckers LWME, Geijen MME, Kleijnen J, Rameckers EAA, Schnackers MLAP, Smeets RJEM, et al. Feasibility and effectiveness of home-based therapy programmes for children with cerebral palsy: A systematic review. BMJ Open. 2020 doi: 10.1136/bmjopen-2019-035454.
    1. Smidt KB, Klevberg GL, Oftedal BF. Home Programme to Improve Hand Function for Children with Bilateral Cerebral Palsy: Beneficial but Challenging. Phys Occup Ther Pediatr. 2020 doi: 10.1080/01942638.2020.1711842.
    1. Robinson OC. Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide. Qual Res Psychol. 2014;11(1):25–41. doi: 10.1080/14780887.2013.801543.
    1. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: A synthesis of recommendations. Acad Med. 2014 doi: 10.1097/ACM.0000000000000388.
    1. Kallio H, Pietilä AM, Johnson M, Kangasniemi M. Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs. 2016 doi: 10.1111/jan.13031.
    1. Turner DW. Qualitative interview design: A practical guide for novice investigators. Qual Rep. 2010 doi: 10.46743/2160-3715/2010.1178.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006 doi: 10.1191/1478088706qp063oa.
    1. Medina-Mirapeix F, Lillo-Navarro C, Montilla-Herrador J, Gacto-Sánchez M, Franco-Sierra MA, Escolar-Reina P. Predictors of parents’ adherence to home exercise programs for children with developmental disabilities, regarding both exercise frequency and duration: A survey design. Eur J Phys Rehabil Med. 2017 doi: 10.23736/S1973-9087.17.04464-1.
    1. Beckers LWME, Smeets RJEM, de Mooij MAC, Piškur B, van der Burg JJW, Rameckers EAA, et al. Process Evaluation of Home-based Bimanual Training in Children with Unilateral Cerebral Palsy (The COAD-study): A Mixed Methods Study. Dev Neurorehabil. 2022 doi: 10.1080/17518423.2021.2011459.
    1. Hanna K, Rodger S. Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Aust Occup Ther J. 2002 doi: 10.1046/j.0045-0766.2001.00273.
    1. Lillo-Navarro C, Medina-Mirapeix F, Escolar-Reina P, Montilla-Herrador J, Gomez-Arnaldos F, Oliveira-Sousa SL. Parents of children with physical disabilities perceive that characteristics of home exercise programs and physiotherapists’ teaching styles influence adherence: A qualitative study. J Physiother. 2015 doi: 10.1016/j.jphys.2015.02.014.
    1. Beckers LWME, Smeets RJEM, van der Burg JJW. Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress. Disabil Rehabil. 2021 doi: 10.1080/09638288.2019.1646815.
    1. Stockwell K, Alabdulqader E, Jackson D, Basu A, Olivier P, Pennington L. Feasibility of parent communication training with remote coaching using smartphone apps. Int J Lang Commun Disord. 2019 doi: 10.1111/1460-6984.12468.
    1. Lord C, Rapley T, Marcroft C, Pearse J, Basu A. Determinants of parent-delivered therapy interventions in children with cerebral palsy: A qualitative synthesis and checklist. Child Care Health Dev. 2018 doi: 10.1111/cch.12592.
    1. Phoenix M, Jack SM, Rosenbaum PL, Missiuna C. A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness. Disabil Rehabil. 2018 doi: 10.1080/09638288.2018.1555618.

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