Process evaluation of two home-based bimanual training programs in children with unilateral cerebral palsy (the COAD-study): protocol for a mixed methods study
Tóm tắt
As part of the COAD-study two home-based bimanual training programs for young children with unilateral Cerebral Palsy (uCP) have been developed, both consisting of a preparation phase and a home-based training phase. Parents are coached to use either an explicit or implicit motor learning approach while teaching bimanual activities to their child. A process evaluation of these complex interventions is crucial in order to draw accurate conclusions and provide recommendations for implementation in clinical practice and further research. The aim of the process evaluation is to systematically assess fidelity of the home-based training programs, to examine the mechanisms that contribute to their effects on child-related and parent-related outcomes, and to explore the influence of contextual factors. A mixed methods embedded design is used that emerges from a pragmatism paradigm. The qualitative strand involves a generic qualitative approach. The process evaluation components fidelity (quality), dose delivered (completeness), dose received (exposure and satisfaction), recruitment and context will be investigated. Data collection includes registration of attendance of therapists and remedial educationalists to a course regarding the home-based training programs; a questionnaire to evaluate this course by the instructor; a report form concerning the preparation phase to be completed by the therapist; registration and video analyses of the home-based training; interviews with parents and questionnaires to be filled out by the therapist and remedial educationalist regarding the process of training; and focus groups with therapists and remedial educationalists as well as registration of drop-out rates and reasons, to evaluate the overall home-based training programs. Inductive thematic analysis will be used to analyse qualitative data. Qualitative and quantitative findings are merged through meta-inference. So far, effects of home-based training programs in paediatric rehabilitation have been studied without an extensive process evaluation. The findings of this process evaluation will have implications for clinical practice and further research regarding development and application of home-based bimanual training programs, executed by parents and aimed at improving activity performance and participation of children with uCP.
Tài liệu tham khảo
Rosenbaum P. Cerebral palsy: what parents and doctors want to know. BMJ. 2003;326(7396):970–4.
Lemmens RJ, Janssen-Potten YJ, Timmermans AA, Defesche A, Smeets RJ, Seelen HA. Arm hand skilled performance in cerebral palsy: activity preferences and their movement components. BMC Neurol. 2014;14:52.
Imms C. Children with cerebral palsy participate: a review of the literature. Disabil Rehabil. 2008;30(24):1867–84.
Novak I, Cusick A. Home programmes in paediatric occupational therapy for children with cerebral palsy: where to start? Aust Occup Ther J. 2006;53(4):251–64.
An M, Palisano RJ. Family-professional collaboration in pediatric rehabilitation: a practice model. Disabil Rehabil. 2014;36(5):434–40.
Shumway-Cook A, Woollacott MH. Motor learning and recovery of function. In: Shumway-Cook A, Woollacott MH, editors. Motor control: translating research into clinical practice. Philadelphia: Lippincott Williams & Wilkins; 2007.
Ferre CL, Brandão M, Surana B, Dew AP, Moreau NG, Gordon AM. Caregiver-directed home-based intensive bimanual training in young children with unilateral spastic cerebral palsy: a randomized trial. Dev Med Child Neurol. 2016;59(5):497–504.
Novak I, Cusick A, Lannin N. Occupational therapy home programs for cerebral palsy: double-blind, randomized, controlled trial. Pediatrics. 2009;124(4):e606–14.
Peplow UC, Carpenter C. Perceptions of parents of children with cerebral palsy about the relevance of, and adherence to, exercise programs: a qualitative study. Phys Occup Ther Pediatr. 2013;33(3):285–99.
Lin KC, Wang TN, Wu CY, Chen CL, Chang KC, Lin YC, Chen YJ. Effects of home-based constraint-induced therapy versus dose-matched control intervention on functional outcomes and caregiver well-being in children with cerebral palsy. Res Dev Disabil. 2011;32(5):1483–91.
Başaran A, Karadavut KI, Üneri SO, Balbaloğlu O, Atasoy N. Adherence to home exercise program among caregivers of children with cerebral palsy. Turk J Phys Med Rehab. 2014;60:85–91.
Schnackers M, Beckers L, Janssen-Potten Y, Aarts P, Rameckers E, van der Burg J, et al. Home-based bimanual training based on motor learning principles in children with unilateral cerebral palsy and their parents (the COAD-study): rationale and protocols. Submitted to BMC Pediatr. 2018;18:139.
Kleynen M, Braun SM, Rasquin SM, Bleijlevens MH, Lexis MA, Halfens J, Wilson MR, Masters RS, Beurskens AJ. Multidisciplinary views on applying explicit and implicit motor learning in practice: an international survey. PLoS One. 2015;10(8):e0135522.
Jenks KM, de Moor J, van Lieshout EC. Arithmetic difficulties in children with cerebral palsy are related to executive function and working memory. J Child Psychol Psychiatry. 2009;50(7):824–33.
Medical Research Council. Developing and evaluating complex interventions: new guidance. 2006. https://www.mrc.ac.uk/documents/pdf/complex-interventions-guidance/. Accessed 22 May 2017.
Tashakkori A, Creswell JW. Editorial: exploring the nature of research questions in mixed methods research. J Mix Methods Res. 2007;1(3):207–11.
Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung E, Arner M, Ohrvall AM, Rosenbaum P. The manual ability classification system (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006;48(7):549–54.
Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. The Canadian occupational performance measure: an outcome measure for occupational therapy. Can J Occup Ther. 1990;57(2):82–7.
Creswell JW, Plano Clark VL. Designing and Conducting mixed methods research. Thousand Oaks: SAGE Publications; 2011.
Merriam SB, Tisdell EJ. Six common qualitative research designs. In: Merriam SB, Tisdell EJ, editors. Qualitative research: a guide to design and implementation. San Francisco: Jossey-Bass; 2015. p. 22–42.
Nott MT, Chapparo C, Heard R. Reliability of the perceive, recall, plan and perform system of task analysis: a criterion-referenced assessment. Aust Occup Ther J. 2009;56(5):307–14.
Krumlinde-sundholm L, Eliasson A-c. Development of the assisting hand assessment: a Rasch-built measure intended for children with unilateral upper limb impairments. Scand J Occup Ther. 2003;10(1):16–26.
Speth L, Janssen-Potten Y, Leffers P, Rameckers E, Defesche A, Geers R, Smeets R, Vles H. Observational skills assessment score: reliability in measuring amount and quality of use of the affected hand in unilateral cerebral palsy. BMC Neurol. 2013;13:152.
Quli. Wat is Quli? 2017. https://www.quli.nl/wat-is-quli/. Accesssed 8 Feb 2018.
De Nederlandse Vereniging van Revalidatieartsen. Richtlijn Spastische cerebrale parese bij kinderen. 2015. https://revalidatiegeneeskunde.nl/sites/default/files/attachments/Kwaliteit/Richtlijnen/richtlijn_cerebrale_parese_revisie_2015_-_def.pdf. Accessed 22 May 2017.
Saunders RP, Evans MH, Joshi P. Developing a process-evaluation plan for assessing health promotion program implementation: a how-to guide. Health Promot Pract. 2005;6(2):134–47.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Braun V, Clarke V. What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9:26152.