Mothers and Fathers of Children with Cerebral Palsy: Differences in Future Expectations

Barak, Shlomo; Elad, Dina; Silberg, Tamar; Brezner, Amichai

doi:10.1007/s10882-016-9521-1

Cited by 10 publications

(13 citation statements)

References 38 publications

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“…Recently, several studies have indicated the importance of putting more of an emphasis on non-disease dimensions of chronic illnesses in children when addressing the impact of an illness on children and their families (Barak et al, 2017;Mokkink et al, 2008;van der Lee et al, 2007). This idea is based on the argument that greater diversity exists within, than across, diagnostic groups, and that clinical diagnosis of a specific disease category is not particularly helpful in predicting social and psychological outcomes (Stein and Jessop, 1989).…”

Section: Introductionmentioning

confidence: 99%

The mediating role of parental satisfaction between marital satisfaction and perceived family burden among parents of children with psychiatric disorders

Hasson‐Ohayon

Ben-Pazi

Silberg

et al. 2019

Psychiatry Research

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Section: Introductionmentioning

confidence: 99%

The mediating role of parental satisfaction between marital satisfaction and perceived family burden among parents of children with psychiatric disorders

Hasson‐Ohayon

Ben-Pazi

Silberg

et al. 2019

Psychiatry Research

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“…Despite this, parents' expectations of their children's development are not well known, as published information on parental expectations is scarce. The scientific literature available indicates that the parents of children with this condition have low expectations in relation to their future independence and success [52,53]. In relation to the services that can improve the lives of families with children with cerebral palsy, the families feel dissatisfaction and frustration [54].…”

Section: Discussionmentioning

confidence: 99%

Orthopaedic Disorders in Cerebral Palsy in International Cooperation Projects: A Descriptive Cross-Sectional Study

Garrido-Ardila

Caro-Puértolas

Jiménez-Palomares

et al. 2021

IJERPH

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Background: In international cooperation projects that are carried out in less developed and developing countries, a large number of children with disabilities present cerebral palsy (CP). Orthopaedic disorders are frequent complications associated with this disorder. Their prevention and early intervention are essential to achieve an appropriate therapeutic approach for children with PC and to improve their quality of life. Objective: To describe the treatment approach that is currently used in international cooperation projects for the rehabilitation management of the orthopaedic disorders in children with cerebral palsy. Methods: This is an observational, descriptive, cross-sectional study, carried out by means of an online questionnaire to professionals in the field of Physiotherapy and Rehabilitation working in international cooperation projects. The inclusion criteria were professionals working in the rehabilitation field in development aid, humanitarian action or emergency projects that provided rehabilitation services, working with children with cerebral palsy from 0 to 18 years old. Results: Ninety-eight questionnaires were analysed. The average age of the participants was 33.2 years, they were mainly working in development cooperation projects (83.33%) that were implemented in rehabilitation centres and through community-based rehabilitation services (60%). The projects were located in countries all over the world but mainly on the Asian continent (71.4%). Physiotherapists and orthopaedic technicians (72.22%) were the main professionals working in these projects, followed by occupational therapists and social workers (55.56%). The results indicated that the orthopaedic disorders were very frequent in the sample (66.67%), with hip subluxation (50%), scoliosis (77.78%), kyphosis (61.1%), clubfoot (88.7%) and varus foot (61.11%) standing out. The most commonly used treatment approaches were positioning (88.89%) and the Bobath concept (83.33%). The technical aids that were used by the professionals were ankle foot orthosis (AFO) (94.44%), bracing (66.67%), standing frames (83.33%), moulded seats (100%), corner seats (93.75%) and adapted seats (92.85%). Conclusions: In international cooperation projects, the rehabilitation treatment of children with cerebral palsy is based on a holistic approach. This is reflected in the interventions that are carried out to treat their orthopaedic disorders and in locally produced devices, awareness raising and community education. However, the professionals surveyed considered that the aids or orthoses used are insufficient in the treatment and prevention of orthopaedic disorders in cerebral palsy.

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“…A condição especial da criança desperta na mãe insatisfações e sentimento de morte do filho sonhado, alterando o seu psíquico. Pensamentos depressivos, traumáticos, confusos, sofrimento, angústias e conflitos internos são vivenciados por estas mulheres, que experimentam a vivência de ter uma criança diferente da que esperavam (Barak et al, 2017). Research, Society and Development, v. 9, n. 11, e649119557, 2020 (CC BY 4.0) | ISSN 2525-3409 | DOI: http://dx.doi.org/10.33448/rsd-v9i11.9557…”

Section: Classe 5: Um Passado Marcado Por Dúvidas Medo E Incertezas unclassified

“…As mães de CRIANES, projetam seus sonhos, expectativas e projetos de vida para o filho, com quem se preocupam quase que exclusivamente, almejando um futuro onde haja uma independência funcional destes. Passam a projetar sua própria vida de mãe como um Research, Society and Development, v. 9, n. 11, e649119557, 2020 (CC BY 4.0) | ISSN 2525-3409 | DOI: http://dx.doi.org/10.33448/rsd-v9i11.9557 segundo plano, porém com um medo constante de adoecimento, envelhecimento ou até mesmo com a morte, de algo, que as impeça de realizar a manutenção de cuidados futuros e necessários a vida do filho (Barak et al, 2017). O apoio da equipe de multiprofissional de saúde mostra-se essencial no processo de habilitar, apoiar, capacitar e estabelecer um elo de confiança com os cuidadores de CRIANES, pois por meio desse elo entre equipe de saúde, principalmente o enfermeiro, e familiares, é possibilitado melhor enfrentamento da necessidade especial de saúde do filho, minimizando situações estressora, desestabilizadoras e conflitantes relacionados ao cuidar de uma criança com necessidades especiais de saúde (Dias et al, 2019).…”

Section: Segurança E Esperança De Um Futuro Diante Da Necessidade Espunclassified

Marcas do cotidiano: vivência da mulher-mãe e cuidadora de criança com necessidades especiais de saúde

Nobre

Sousa

Lima

et al. 2020

RSD

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Objetivo: compreender a vivência e o cotidiano da mulher-mãe e cuidadora de crianças com necessidades especiais de saúde e as implicações para a sua saúde. Metodologia: pesquisa qualitativa realizada com dez mães de crianças com necessidade especiais de saúde, através de entrevista semiestruturada. O tratamento dos dados aconteceu com o auxílio do software IRAMUTEQ. Os dados foram organizados em categorias temáticas com posterior analise de conteúdo. Resultados: analisou-se um corpus textual composto por 10 Unidades de Contexto Inicial ou entrevistas, em que se obteve 451 segmentos de texto ou Unidade de Contexto Elementar e 345 segmentos analisados, ou seja, 76,5% do corpus analisado. As mães experimentam o isolamento social, sobrecarga de atividades e desgaste físico, resultando na necessidade de terapias e cuidados para garantir sua saúde física, psicossocial e emocional. Considerações Finais: evidenciou-se que ser mãe de uma criança com necessidades especiais de saúde representa uma singularidade com o objeto do cuidado dessa mulher mãe, demonstrando também uma forte negligência no cuidado à saúde das mulheres-mães em prol dos seus filhos.

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Mothers and Fathers of Children with Cerebral Palsy: Differences in Future Expectations

Cited by 10 publications

References 38 publications

The mediating role of parental satisfaction between marital satisfaction and perceived family burden among parents of children with psychiatric disorders

The mediating role of parental satisfaction between marital satisfaction and perceived family burden among parents of children with psychiatric disorders

Orthopaedic Disorders in Cerebral Palsy in International Cooperation Projects: A Descriptive Cross-Sectional Study

Marcas do cotidiano: vivência da mulher-mãe e cuidadora de criança com necessidades especiais de saúde

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