Mothers' experience of having a child with cerebral palsy. A systematic review

Smith, M. W.; Blamires, Julie

doi:10.1016/j.pedn.2022.01.014

Cited by 27 publications

(18 citation statements)

References 41 publications

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“…It is not surprising therefore that ACC has such a rigorous process for accepting cases, especially given that the etiology of brain trauma is not always clear, and the costs involved with a lifelong condition such as cerebral palsy are high. This process can take many years to resolve which can have a significant additional impact on the health and well-being of parents (Smith & Blamires, 2022).…”

Section: Challenges and Barriersmentioning

confidence: 99%

“…Māori children living with cerebral palsy have a greater level of disability, are more likely to live in poverty, and more likely to be admitted to hospital with a respiratory illness than their non-Māori counterparts (Sorhage et al, 2022). This adds further layers of inequity to these children and their whānau (families) as well as the additional stress when faced with cultural barriers, financial constraints, potentially lower levels of education, and the stigma of having a child with a disability (Smith & Blamires, 2022).…”

Section: Introductionmentioning

confidence: 99%

“…Māori, and Pacific, whānau face additional challenges and barriers to comprehensive care based on the limited culturally specific services within these two pathways (Ratima & Ratima, 2007). Learning to understand how to navigate these two complex systems creates additional anxiety and stress for whānau who are already living a complex life (Smith & Blamires, 2022). Service gaps and inequity are evident in the current model of service delivery, and it is timely to highlight these, given the recent establishment of Te Whatu Ora, Te Aka Whai Ora, and Whaikaha -Ministry for Disabled People in July 2022.…”

Section: Introductionmentioning

confidence: 99%

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The Impact of Policies and Legislation on the Structure and Delivery of Support Services for Children With Cerebral Palsy and Their Families in Aotearoa New Zealand: A Professional Perspective

Smith

Blamires

Foster

2022

Nursing Praxis in Aotearoa New Zealand

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The Aotearoa New Zealand health system in Aotearoa New Zealand currently provides disability support services to children living with cerebral palsy and their families built on key policy and legislation which has created two distinct disability support pathways. One pathway is provided through the Accident Compensation Corporation and the other through Te Whatu Ora (Health New Zealand) districts. There is consensus that these pathways result in significant inequities in terms of support service delivery. Māori and Pacific People are particularly impacted by this inequity. In the absence of literature that critically analyses this situation, the purpose of this paper is to examine, understand and critique how disability support services are structured and delivered to children living with cerebral palsy and their families in Aotearoa New Zealand. Two clinical vignettes illustrate the challenges and inequities faced by families and demonstrates how the two separate pathways impact service delivery, opportunities to thrive and health outcomes. This paper will highlight that there is a need for a review of the current system which is timely considering the recent establishment of Te Whatu Ora - Health New Zealand, Te Aka Whai Ora - Māori Health Authority, and Whaikaha - the Ministry for Disabled Peoples. TE REO MĀORI TRANSLATION Te pānga o ngā kaupapa here me ngā ture ki te hanganga me te horanga o ngā ratonga tautoko mō ngā tamariki kua pāngia e te mate whakatīmohea, me ō rātou whānau i Aotearoa: He tirohanga ngaio Ngā Ariā Matua Ko tā te pūnaha Hauora o Aotearoa o tēnei wā he hora ratonga tautoko ki ngā tamariki kua pāngia e te mate whakatīmohea me ō rātou whānau. E rua ngā ara tautoko hauātanga motuhake kua waihangatia, i roto i ngā whakatau kaupapa here me ngā ture matua. Ko tētahi ara he mea whāngai ki te pūtea, he mea hora hoki mā roto i te Kāporeihana Āwhina Hunga Whara, he Whakahaere Karauna; ko tētahi ka horaina mā ngā rohe o Te Whatu Ora (Health New Zealand). Ko te whakaaro o te nuinga, nā ēnei ara e rua he maha ngā korenga e ōrite o ngā horanga ratonga tautoko. Ko ngāi Māori me Ngā Iwi o Te Moana-nui-a-Kiwa te hunga ka tino pāngia e ēnei korenga e ōrite. Mā ētahi pūrākau poto taurima tūroro e rua, kotahi pūrākau mō tētahi, mō tētahi, e whakaahua ngā rerekētanga o te wātea me te horanga i ngā ratonga hauora, tautoko hoki. E anga ana tēnei pepa ki te whakaahua he pēhea te waihanga o ngā ratonga tautoko hauātanga ki ngā tamariki kua pāngia e te mate whakatīmohea me ō rātou whānau i Aotearoa, me te whakakite i ngā taumahatanga me ngā korenga e ōrite kei mua i ngā whānau, e pēhi nei i ō rātou whāinga wāhi kia puāwai, me ō rātou pūtanga hauora. E akiaki ana tēnei pepa kia whakahoutia wawetia te pūnaha o nāianei, ā, he mea tika mō tēnei wā, i muri i te whakatūranga i tēnei tau o Te Whatu Ora, o Te Aka Whai Ora (Māori Health Authority) me Whaikaha (Ministry of Disabled People). Ngā kupu matua: te mate whakatīmohea, tamariki, ngā whānau, ture, kaupapa here

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Section: Challenges and Barriersmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The Impact of Policies and Legislation on the Structure and Delivery of Support Services for Children With Cerebral Palsy and Their Families in Aotearoa New Zealand: A Professional Perspective

Smith

Blamires

Foster

2022

Nursing Praxis in Aotearoa New Zealand

Self Cite

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“…У них нет уверенности, что ребенок найдет свое место в мире и сможет обеспечивать себя. Все это приводит к сильному чувству безнадежности и беспомощности, которое сопровождает родителя на протяжении всего воспитания ребенка [81].…”

Section: стресс связанный с ролью родителяunclassified

Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review

Kim

Kadyrov

2022

Клиническая И Специальная Психология

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<p style="text-align: justify;">Raising a child with cerebral palsy contains difficult stress, which negatively affects everyone who is involved in this process. In native psychology, this problem is described by I.U. Levchenko, V.V. Tkacheva, V.A. Vishnevsky, T.N. Volkovskaya. However, there is a lack of research on stress for people, who are raising a child with cerebral palsy. The purpose of this review is to learn about foreign studies on stress for people, who are raising children with cerebral palsy. The article describes R. Abidin's current leading model for parental stress. The connection between raising a child with cerebral palsy and parental stress is considered based on R. Abidin's model. Particularly, the results of studies describe specific aspects of parental stress: lack of knowledge on special child care, not an equal assignment for parental responsibilities, separation anxiety, parent's health problems, social isolation, and guilt. Based on the analysis, we can conclude that raising a child with cerebral palsy is associated with a higher level of stress than raising children without disabilities. This information can be used both in similar studies for a domestic sample and in active programs to reduce parental stress.</p>

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“…Most patients with CP are dependent on caregivers or parents to meet their daily needs (Smith & Blamires, 2022).…”

mentioning

confidence: 99%

The relationship of spiritual orientation and caregiver burden of caregiver mothers with a child with cerebral palsy in Turkey

Tuncay

Sarman

2023

Child

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IntroductionThis study aims to examine the association between spiritual orientation and the caregiving burden experienced by mothers of children with cerebral palsy.MethodsParents of 181 children with cerebral palsy, aged 0–18, participated in this cross‐sectional‐descriptive study. “Sociodemographic Form,” “Spiritual Orientation Scale,” “Zarit Caregiver Burden Scale,” and “Gross Motor Function Classification System” were used to collect data.ResultsThe mothers who participated in the study had a mean age of 35.74 ± 5.94 years. The study showed that 17.1% of children with cerebral palsy did not receive special education, and 92.8% of them were born with a disability. Additionally, 62.4% of the children were found to be undernourished, 48.6% had irregular oral care, 43.1% had semi‐active activity, 65.7% had irregular sleeping patterns, and 50.8% only partially understood what was stated.The study discovered that as mothers' ages increased, their spiritual orientation decreased, and their burden of caring increased. Furthermore, the mothers of children with severe disabilities had an increasing burden of care, as indicated by the gross motor classification.ConclusionsThe study found that mothers with higher spiritual orientation scores perceived less care burden. These findings suggest the need for implementing activities to provide moral support to mothers.

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Mothers' experience of having a child with cerebral palsy. A systematic review

Cited by 27 publications

References 41 publications

The Impact of Policies and Legislation on the Structure and Delivery of Support Services for Children With Cerebral Palsy and Their Families in Aotearoa New Zealand: A Professional Perspective

The Impact of Policies and Legislation on the Structure and Delivery of Support Services for Children With Cerebral Palsy and Their Families in Aotearoa New Zealand: A Professional Perspective

Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review

The relationship of spiritual orientation and caregiver burden of caregiver mothers with a child with cerebral palsy in Turkey

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