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Parental engagement in early intervention for infants with cerebral palsy-A realist synthesis.

ABSTRACT:

Background

Emphasis on parental engagement strategies within occupational therapy and physiotherapy early intervention (EI) programmes for infants at high risk of cerebral palsy (CP) has increased. This reflects consensus that increasing parent participation enhances treatment efficacy, potentially improving infant and parent outcomes. However, evaluation of parental engagement in EI is complex. Despite the growing application of parental engagement strategies, aligned with family-centred care practice, theoretical evaluation is currently lacking within the literature. This realist synthesis aimed to identify component theories underlying EI strategies to support parental engagement and to use empirical findings to evaluate how these work in practice.

Methods

Realist synthesis: Databases Medline, Embase, Amed, CINAHL and PsychInfo were searched (from February 1985 - February 2020); further articles were sourced from reference lists. A data extraction form was used, and a Critical Appraisal Skills Programme tool was used to assess study rigour.

Results

Twenty-six articles were included. Quality of relationships, parent education and intervention co-design were the key themes related to parental engagement strategies. Findings indicate that constructive parent reasoning mechanisms of trust, belief, sense of control, perceived feasibility of home programme delivery and ultimately motivation are linked to the underlying intervention resources afforded by specific strategies (e.g., coaching pedagogy). These responses are precursors to engagement outcomes that include increased parental self-efficacy and adherence. Importantly, parental self-efficacy can initiate a process of change leading to improved parental confidence and anxiety.

Conclusions

Sensitively designed programme strategies, centred on relational quality between parent, infant and therapist, are fundamental for effective parent connection, involvement and investment within EI for infants with CP.

SUBMITTER: Harniess PA

PROVIDER: S-EPMC9298289 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:AimTo perform an overview of systematic reviews and more recent randomized controlled trials (RCTs) on early motor interventions in infants aged 0 to 3 years with or at risk of cerebral palsy to inform current clinical and research efforts and provide a benchmark to assess future interventions ideally initiated within the first 6 months.MethodStandardized searches of the PubMed, Embase, Scopus, and Web of Science databases were conducted for systematic reviews (2009-2020) and RCTs (2015-2020).ResultsFrom 840 unique records, 31 full texts were reviewed, yielding three systematic reviews encompassing 46 studies, 16 with comparison groups, and six additional RCTs that met the criteria. Two enrichment- and activity-based approaches had medium effect sizes on motor development, only one with low risk of bias; two others had large task-specific effect sizes but some bias concerns; and three enriched environment studies with some bias concerns had medium effect sizes on cognitive development. Most had small or no effect sizes, bias concerns, and uncertain diagnostic determinations.InterpretationData synthesis revealed limited data quantity and quality, and suggest, although not yet confirmed, greater benefit from early versus later intervention. Research efforts with greater early diagnostic precision and earlier intervention are accelerating, which may transform future outcomes and practices. What this paper adds For over 50% of trials within the reviews, the intervention was compared to standard care with only two showing efficacy. Similar to results in older children, constraint-induced movement therapy (CIMT) emerged as efficacious with high effect sizes. CIMT was not superior to similarly intense bimanual training or occupational therapy. Goals-Activity-Motor Enrichment intervention initiated before 5 months of age was superior to equally intense standard care. Several other enriched environment strategies promoted cognitive and/or motor development.

Project description:IntroductionCerebral palsy (CP) is the most common childhood physical disability with rates approximately 50% higher in First Nations Australian children. This study aims to evaluate a culturally-adapted parent-delivered early intervention programme for First Nations Australian infants at high risk of CP (Learning through Everyday Activities with Parents for infants with CP; LEAP-CP).Methods and analysisThis study is a randomised assessor masked controlled trial. Infants with birth/postnatal risk factors will be eligible for screening. Infants at high risk of CP ('absent fidgety' on General Movements Assessment, and/or 'suboptimal score' on the Hammersmith Infant Neurological Examination) aged 12-52 weeks corrected age will be recruited. Infants and their caregivers will be randomised to receive LEAP-CP (intervention) or health advice (comparator). LEAP-CP is a culturally-adapted programme of 30 home visits delivered by a peer trainer (First Nations Community Health Worker); and includes goal-directed active motor/cognitive strategies, CP learning games and caregiver educational modules. The control arm receives a monthly health advice visit, based on the Key Family Practices, WHO. All infants continue to receive standard (mainstream) Care as Usual. Dual child primary outcomes are Peabody Developmental Motor Scales-2 (PDMS-2) and Bayley Scales of Infant Development-III. The primary caregiver outcome is the Depression, Anxiety and Stress Scale. Secondary outcomes include function, goal attainment, vision, nutritional status and emotional availability.Sample sizetotal of 86 children (43/group) will enable an effect size of 0.65 on the PDMS-2 to be detected (80% power, α=0.05; 10% attrition).Ethics and disseminationEthics approval through Queensland ethics committees and Aboriginal Controlled Community Health Organisation Research Governance Groups, with families providing written informed consent. Findings will be disseminated with guidance from the Participatory Action Research, in collaboration with First Nations communities; peer-reviewed journal publications and national/international conference presentations.Trial registration numberACTRN12619000969167p.

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Project description:AimThis study aimed to investigate whether children with cerebral palsy (CP) had equal access to timely physiotherapy. Additionally, to learn more about clinical characteristics of infants with CP, we explored differences in neonatal clinical history and CP profile between children referred by a neonatologist or enrolled in neonatal follow-up and those referred by other healthcare professionals as well as those referred before and after 5 months corrected age.MethodsWe conducted a retrospective chart review study including children born in Uppsala County, Sweden, from 2010 to 2016, who had received a CP diagnosis by July 2019. Entries by doctors and physiotherapists working at Uppsala University Children's Hospital were reviewed.ResultsThirty-eight children were included (21 girls, 55.3%) in the study. Twenty-two (57.9%) were born at term. Twenty-five children (66%) had their first visit to a physiotherapist before 5 months corrected age, and this included all children (n = 22, 57.9%) referred by a neonatologist or enrolled in neonatal follow-up. The latter group had significantly earlier access to physiotherapy compared to children referred by other healthcare professionals, with a median of 1.9 (min-max: -1-4) and 7.6 (min-max: 1-24) months, respectively (p < 0.0001). Referral source explained unique variance in predicting time of referral to physiotherapist (R2 0.550, B 4.213, p < 0.0001) when controlling for both number of risk factors and severity of motor impairment. However, number of risk factor was vital for early access to physiotherapy for children referred by other health care professionals. Children referred by a neonatologist or enrolled in neonatal follow-up or referred before 5 months corrected age differed on all measured variables concerning neonatal clinical history and CP profile, compared to children referred by other healthcare professionals or after 5 months corrected age. The latter groups had milder forms of CP. In total, twenty-eight children (73.7%) were ambulatory at 2 years of age. Bilateral spastic CP was most common among those referred by a neonatologist or enrolled in neonatal follow-up or referred before 5 months corrected age, while unilateral spastic CP was most common among those referred by other healthcare professionals or after 5 months corrected age.ConclusionInfants with CP have unequal access to timely physiotherapy, and children considered at low risk for CP receive therapy later. Neonatal follow-up of infants considered at high risk for CP that involves an assessment of motor performance using an evidence-based method during the first months of life corrected age seems to be effective in identifying CP early. Conversely, measuring milestone attainment seems to be a less reliable method for early identification. To provide safe and equal care, all professionals performing developmental surveillance should receive proper training and use evidence-based assessment methods. Physiotherapy should be available prior to formal medical diagnosis.

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Project description:BackgroundNeonatal cerebral stroke includes a range of focal and multifocal ischemic and hemorrhagic brain lesions, occurring in about one of 3000 live births. More than 50% of children with neonatal stroke develop adverse outcomes, mainly unilateral cerebral palsy. Asymmetries in segmental movements at three months have been proven to be an early sign of CP in infants with unilateral brain damage. Recognition of additional early signs could enhance prognostic assessment and enable an early and targeted intervention.AimThe aim of the study was to assess early signs of CP in infants with arterial cerebral stroke through the General Movements Assessment and the Motor Optimality Score-Revised (MOS-R).MethodTwenty-four infants born at term (12 females and 12 males) diagnosed with ACS, and 24 healthy infants (16 females and 8 males) were assessed. The GMs (fidgety movements) and MOS-R were assessed from videos recorded at 11-14 weeks of post-term age. Cognitive and motor outcomes were assessed at 24 months using the Griffiths III developmental quotient and Amiel-Tison neurological examination. The gross motor function classification system expanded and revised (GMFCS-E&R) was adopted to categorize CP.ResultsAmong infants with ACS, 21 (87.5%) developed unilateral CP. Most of them showed non-disabling CP (14 had GMFCS-E&R grade 1 [66.6%], 6 grade 2 [28.6%], and 1 grade 5 [4.8%]). Fidgety movements (FMs) were absent in 17 (70.8%), sporadic in 4 (16.7%) infants, and normal in 3 (12.5%). Segmental movement asymmetry was found in 22/24 (91.7%). According to the MOS-R, motor items (kicking, mouth movements), postural patterns (midline centered head, finger posture variability), and movement character (monotonous and stiff) were statistically different among infants with ACS and healthy infants. The MOS-R median global score was lower in the group with ACS compared to the control group (6 vs 26; p < 0.01). FMs, segmental movement asymmetry, and MOS-R global score were significantly correlated with abnormal outcome. MOS-R global scores less than or equal to 13 had 100% specificity and sensitivity in predicting GMFCS-E&R grade ≥ 2 CP in infants with ACS.ConclusionsThe rate of CP was high among infants with ACS, but in most cases it showed low GMFCS-E&R grades. The study highlighted a significant correlation between MOS-R, together with absent FMs and unilateral CP in infants with ACS. Moreover, the MOS-R showed high sensitivity and specificity in the prediction of CP. Combined assessment of FMs and MOS-R could help to better identify infants at high risk of developing UCP in a population of infants with ACS. Early identification of precocious signs of unilateral CP is fundamental to providing an early individualized intervention.