Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress.

PURPOSE: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability. METHODS: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child's therapy. RESULTS: The proposed definition of therapy-related parental stress is "the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)". A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives. CONCLUSIONS: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.Indications for rehabilitationIt is imperative to recognise paramedical therapies (i.e., physical, occupational, and speech and language therapy) as a potential stressor for parents of children with a physical disability, both in paediatric rehabilitation practice and research.A definition and theoretical model of therapy-related parental stress is proposed and the need for measures to evaluate this phenomenon is argued.The authors provide a starting point for the evidence base of the concept of therapy-related parental stress.

Feasibility and effectiveness of home-based therapy programmes for children with cerebral palsy: a systematic review.

OBJECTIVE: To assess the feasibility and effectiveness of home-based occupational therapy and physiotherapy programmes in children with cerebral palsy (CP), focusing on the upper extremity and reporting on child-related and/or parent-related outcomes. DESIGN: Systematic review. DATA SOURCES: Electronic searches were performed in MEDLINE, EMBASE, CINAHL, PsycINFO, OTseeker and PEDro, and in ICTRP and CENTRAL trial registers, from inception to 6 June 2019. ELIGIBLE CRITERIA: The review included all types of original studies concerning feasibility or effectiveness of home-based therapy in children aged <18 years with any type of CP. No language, publication status or publication date restrictions were applied. DATA EXTRACTION AND SYNTHESIS: Study and intervention characteristics and the demographics of participating children and their parents were extracted. Feasibility was assessed by outcomes related to acceptability, demand, implementation, practicality, adaptation, expansion or integration. Regarding effectiveness, child-related outcome measures related to any level of the International Classification of Functioning, Disability and Health, or parent-related outcomes were investigated. Two authors independently extracted the data. Risk of bias was assessed using the Downs and Black checklist and the Joanna Briggs Institute Critical Appraisal Checklist. RESULTS: The search resulted in a total of 92 records: 61 studies and 31 conference abstracts. Feasibility studies reported mainly on acceptability and implementation. Overall compliance to home-based training programmes (implementation) was moderate to high, ranging from 56% to 99%. In the effectiveness studies, >40 different child-related outcome measures were found. Overall, an improvement in arm-hand performance within group across time was shown. Only two studies reported on a parent-related outcome measure. No increase in parental stress was found during the intervention. CONCLUSIONS: Based on the results of the included studies, home-based training programmes seem to be feasible. However, conclusions about the effectiveness of home programmes cannot be made due to the large variability in the study, patient and intervention characteristics, comparators, and outcome measures used in the included studies. PROSPERO REGISTRATION NUMBER: CRD42016043743.

Single-case Design Studies in Children with Cerebral Palsy: A Scoping Review.

Aim: To critically evaluate single-case design (SCD) studies performed within the population of children/adolescents with cerebral palsy (CP).Methods: A scoping review of SCD studies of children/adolescents with CP. Demographic, methodological, and statistical data were extracted. Articles were evaluated using the Risk of Bias in N-of-1 Trials (RoBiNT) Scale and the Consolidated Standards of Reporting Trials (CONSORT) extension for N-of-1 trials (CENT 2015). Comments regarding strengths and limitations were analyzed.Results: Studies investigated the effects of a wide range of interventions on various outcomes. Most SCD types were adopted in multiple studies. All studies used visual inspection rather than visual analysis, often complemented with basic statistical descriptives. Risk of bias was high, particularly concerning internal validity. Many CENT items were insufficiently reported. Several benefits and limitations of SCD were identified.Conclusions: The quality of evidence from results of SCD studies needs to be increased through risk of bias reduction.

Application of the Gross Motor Function Measure-66 (GMFM-66) in Dutch clinical practice: a survey study.

BACKGROUND: The Gross Motor Function Measure-66 (GMFM-66) is an observational clinical measure designed to evaluate gross motor function in children with Cerebral Palsy (CP). It is a shortened version of the GMFM-88. A free computer program, the Gross Motor Ability Estimator (GMAE), is required to calculate the interval level total score of the GMFM-66. The aim of this study was to explore pediatric physiotherapists' experiences with the GMFM-66 and application of the measure in Dutch clinical practice. METHODS: An explorative cross-sectional survey study was performed. Dutch pediatric physiotherapists were invited to complete an online survey. Data-analysis merely consisted of frequency tables, cross-tabulations and data-driven qualitative analysis. RESULTS: Fifty-six respondents were included in the analysis. In general, the therapists expressed a positive opinion on the GMFM-66, in particular regarding its user-friendly administration and benefits of the GMAE. The majority of questions revealed that therapists deviate from the guidelines provided by the manual to a greater or lesser extent though. The most worrisome finding was that 28.8% (15/52) of the therapists calculate the total score of the GMFM-66 using the score form of the GMFM-88 instead of the GMAE. DISCUSSION: The consequences of the high number of therapists who stated that they calculate the total score of the GMFM-66 with the GMFM-88 score form are far-reaching; it has a misleading impact on the opinion of rehabilitation teams and parents on the development of the child, on decision-making in rehabilitation, and ultimately on the development of the child. CONCLUSIONS: Information currently available on psychometric properties, motor growth curves and percentiles cannot be generalized to clinical practice in the Netherlands, as they were generated in highly controlled testing conditions, which do not hold in clinical practice.