Addition of an educational programme for primary caregivers to rehabilitation improves self-care and mobility in children with cerebral palsy: a randomized controlled trial

Saquetto, Micheli Bernardone; Bispo, Adriana de Santana; Barreto, Camila da Silva; Gonçalves, Katiuce Almeida; Queiroz, Rodrigo Santos de; Silva, Cássio Magalhães da; Neto, Mansueto Gomes

doi:10.1177/0269215518757051

Cited by 19 publications

(46 citation statements)

References 25 publications

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“…In this review, family‐centred care was mapped as an ingredient to be considered as a potential determinant of intervention engagement and success of several interventions. The findings support this as a practice desired by families 34–39 and with potential to promote relevant changes in several areas 40 . However, often families are not sufficiently informed or cannot understand the information they are given 34,41,42 .…”

Section: Discussionsupporting

confidence: 62%

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

Campos

Hidalgo‐Robles

Longo

et al. 2023

Develop Med Child Neuro

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AimTo explore the ingredients of early interventions provided to young children with cerebral palsy (CP) who are classified in Gross Motor Function Classification System (GMFCS) levels IV and V, and to identify the ‘F‐words’ addressed by the interventions.MethodSearches were completed in four electronic databases. Inclusion criteria were the original experimental studies that fitted the following PCC components: population, young children (aged 0–5 years, at least 30% of the sample) with CP and significant motor impairment (GMFCS levels IV or V, at least 30% of the sample); concept, non‐surgical and non‐pharmacological early intervention services measuring outcomes from any of the International Classification of Functioning, Disability and Health domains; and context, studies published from 2001 to 2021, from all settings and not limited to any specific geographical location.ResultsEighty‐seven papers were included for review, with qualitative (n = 3), mixed‐methods (n = 4), quantitative descriptive (n = 22), quantitative non‐randomized (n = 39), and quantitative randomized (n = 19) designs. Fitness (n = 59), family (n = 46), and functioning (n = 33) ingredients were addressed by most experimental studies, whereas studies on fun (n = 6), friends (n = 5), and future (n = 14) were scarce. Several other factors (n = 55) related to the environment, for example, service provision, professional training, therapy dose, and environmental modifications, were also relevant.InterpretationMany studies positively supported formal parent training and use of assistive technology to promote several F‐words. A menu of intervention ingredients was provided, with suggestions for future research, to incorporate them into a real context within the family and clinical practice.

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Section: Discussionsupporting

confidence: 62%

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

Campos

Hidalgo‐Robles

Longo

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

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“…En esta revisión, la atención centrada en la familia se identificó como un ingrendiente a tener en cuenta como potencial determinante del involucramiento en la intervención y del éxito de varias intervenciones. Los hallazgos apoyan que se trata de una práctica deseada por las familias 34–39 y con potencial para promover cambios relevantes en varias áreas 40 . Sin embargo, a menudo las familias no están suficientemente informadas o no pueden entender la información que se les ofrece 34,41,42 .…”

Section: Discussionunclassified

F‐words e ingredientes de las intervenciones tempranas dirigidas a niños no ambulantes con parálisis cerebral: Una revisión exploratoria

Campos

Hidalgo‐Robles

Longo

et al. 2023

Develop Med Child Neuro

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ObjetivosExplorar los ingredientes de las intervenciones tempranas realizadas a niños pequeños con parálisis cerebral (PC) clasificados en el Sistema de Clasificación de la Función Motora Gruesa (GMFCS) niveles IV y V, e identificar las ‘F‐words’ abordadas por las intervenciones.MétodoSe realizaron búsquedas en cuatro bases de datos electrónicas. Los criterios de inclusión fueron estudios experimentales originales que cumplieran los siguientes componentes PCC: población: niños pequeños (edades 0–5 años, al menos el 30% de la muestra) con PC y alteraciones motoras significativas (niveles GMFCS IV o V, al menos 30% de la muestra); concepto: servicios de intervención temprana no quirúrgicos y no farmacológicos que midieran resultados de cualquier dominio de la Clasificación Internacional del Funcionamiento, Discapacidad y Salud; y contexto: estudios publicados de 2001 a 2021, en todos los entornos y sin limitaciones geográficas específicas.ResultadosOchenta y siete artículos fueron incluidos en la revisión, con diseños cualitativos (n = 3), de métodos mixtos (n = 4), cuantitativos descriptivos (n = 22), cuantitativos no aleatorizados (n = 39), y cuantitativos aleatorizados (n = 19). Los ingredientes de estado físico (n = 59), familia (n = 46) y funcionamiento (n = 33) fueron abordados por la mayoría de los estudios experimentales, mientras que los estudios sobre diversión (n = 6), amigos (n = 5) y futuro (n = 14) fueron escasos. Otros factores (n = 55) relacionados con el entorno, por ejemplo, la prestación de servicios, formación profesional, dosis de terapia y modificaciones del entorno, fueron también relevantes.InterpretaciónMuchos estudios respaldaron positivamente el entrenamiento formal de los padres y el uso de tecnología de apoyo para promover varias F‐words. Se proporcionó un menú de ingredientes de intervención, con sugerencias para investigaciones futuras, para incorporarlo en un contexto real dentro de la familia y la práctica clínica.

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“…The option of a service coordinator responsible for various small communities can provide timely guidance in the continuum of care by reiterating and clarifying specific and general information about individual child's condition (Darrah et al, 2012; Domenech et al, 2016). Improved knowledge shown to relieve the stress and anxiety of caregivers that arises from uncertainty and ignorance (Dyke et al, 2006; Saquetto et al, 2018). Appropriate information in the form of a written document from health care services received by the child and handouts about available services in the community reassures caregivers in planning of their child's future strategies (Almasri et al, 2018) and may eliminate false expectations or unrealistic goals about their child's progression.…”

Section: Discussionmentioning

confidence: 99%

Perceptions of family‐centred care among caregivers of children with cerebral palsy in South India: An exploratory study

Poojari

Umakanth

Maiya

et al. 2021

Child

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Background: Parental views and expectations about family-centred care (FCC) need to be understood for its successful implementation. Knowledge of caregiver's perceptions and needs, within their social and cultural context, forms the basis for effective health care partnerships with families. The purpose of this study was to explore perceptions about FCC among caregivers of children with cerebral palsy (CP) in South India.Method: Fourteen caregivers of children with CP (aged 4-12 years) living in rural areas of the coastal region of Karnataka, India, participated in this qualitative study.Face-to-face semi-structured interviews were recorded and transcribed for analysis using the framework and hybrid approaches. Thematic mapping of the categories and themes was done to explore relationships about perceptions of FCC.Results: Caregiver's life emerged inductively as a new theme highlighting caregiver's own physical and mental health, family roles and well-being, integrating the onus of care with household responsibilities, limited participation in personal activities and social isolation. The qualitative findings revealed the ubiquity of respectful and trusting relationships with health professionals while expressing paucity of coordinated comprehensive care, sporadic partnerships and opportunities for shared decision-making; desire for receiving specific information related to child's progress and prognosis; and general information on community resources and the need of empowerment and support groups. Conclusion:Our study has practical implications for the implementation of FCC within the South Indian context, by recognizing unique caregiver needs and expectations in sync with cultural perspectives towards childhood disability such as societal stigma, values and traditional beliefs; attitudes towards medical professionals; and life stressors and gender responsibilities.

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Addition of an educational programme for primary caregivers to rehabilitation improves self-care and mobility in children with cerebral palsy: a randomized controlled trial

Abstract: Self-care and mobility improved in children with cerebral palsy with the addition to conventional rehabilitation of an educational programme for primary caregivers.

Cited by 19 publications

References 25 publications

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

F‐words e ingredientes de las intervenciones tempranas dirigidas a niños no ambulantes con parálisis cerebral: Una revisión exploratoria

Perceptions of family‐centred care among caregivers of children with cerebral palsy in South India: An exploratory study

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