Investigation of raising burden of children with autism, physical disability and mental disability in China

Xiong, Nina; Yang, Li; Yu, Yang; Hou, Jiaxun; Li, Jia; Li, Yuanyuan; Liu, Hairong; Zhang, Ying; Jiao, Zhengang

doi:10.1016/j.ridd.2010.10.003

Cited by 80 publications

(51 citation statements)

References 7 publications

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“…It is believed that many children with an intellectual disability in China are not formally diagnosed, receive very few services and their families experience financial stress in caring for their child [13]. Information about the daily lives and support services available for those with an intellectual disability is limited.…”

Section: Introductionmentioning

confidence: 99%

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Lim

Downs

et al. 2012

Disability and Rehabilitation

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Implications for rehabilitation Little is known about the lives of girls with Rett syndrome in China, a genetic condition associated with severe disability.  Most girls experienced home-based care with limited access to appropriate equipment, education and rehabilitation.  Limited information and discrimination and stigma from some community members reduced families' abilities to meet their child's needs.  Greater access to health, education and information services in China should be supported.

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Section: Introductionmentioning

confidence: 99%

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Lim

Downs

et al. 2012

Disability and Rehabilitation

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“…Moreover, autism has been found to cause more stress to caregivers compared to other diagnosis such as Down syndrome (Blacher & McIntyre, 2006). Regarding economical costs, children without disabilities and children with autism, physical disabilities and mental disabilities have been compared (Xiong et al, 2011), finding Q1 significant differences in raisings expenses. Differences in burden associated with mental health disorders, burden associated with ID, or the interaction of both (MH-ID) should also be expected, highlighting which models of services should be designed to address the needs of families and therefore pursue a better communitarian framework of services.…”

mentioning

confidence: 99%

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Martorell

Gutiérrez-Recacha

Irazábal

et al. 2011

Research in Developmental Disabilities

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“…A meeting at CYCD was carried out during January [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20]2012 to present information about the study to the parents, to receive written and verbal consents and to enable them to meet with the researcher following the determination of the addresses of the disabled children registered in the home care service of CYCD. All home visits were made by a single researcher.…”

Section: Interventionmentioning

confidence: 99%

“…3,4 In addition to the emotional problems the family must confront, families with disabled children have also various needs in other dimensions including economic, knowledge, care, medical, social life and homecare due to the intense parenting responsibilities. [5][6][7] Published descriptive studies of parents of disabled children have generally focused on their sense of self, depression levels, styles of coping with stress, perceived social support levels and intra-familial harmony, family load, homecare need as well as the difficulties faced. 2,4,12 However, nursing care is only mentioned in a few studies even though its important role in health care.…”

Section: Introductionmentioning

confidence: 99%

Investigation of the Effect of Level of Family Needs Coverage that Nursing Care Given to Family with Disabled Children

Bılsın¹,

Başbakkal²

2017

Turkish Journal of Family Medicine and Primary Care

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ÖZETAmaç: Bu araştırma, engelli çocukların ailesine verilen hemşirelik bakımının aile gereksinimini karşılama düzeyine etkisini incelemek amacıyla yapılmıştır. Yöntem: Yarı deneysel olarak planlanmıştır. Araştırmanın evrenini Ocak-Nisan 2012 tarihleri arasında Gaziantep ilinde bulunan Sosyal Hizmet ve Rehabilitasyon Merkezinin evde bakım hizmetine kayıtlı 0-18 yaş arasındaki engelli çocuklar ve aileleri oluşturmuştur. Araştırmanın örneklemini ise basit rastgele örnekleme yöntemiyle seçilen 30 zihinsel/fiziksel/işitme/görme engelli çocuk ve aileleri oluşturmuştur. Çalışmada ailelerin gereksinimlerini belirlemek ve belirlenen gereksinimlere göre hemşirelik girişimleri planlamak, uygulamak ve değerlendirmek için her aileye ziyaretler arasında en az bir ay süre bırakılarak, en az üç kez ev ziyaretleri yapılmıştır. Araştırmada "Çocuk Tanıtım Formu", "Aile Tanıtım Formu", "Aile Gereksinimlerini Belirleme Aracı (AGBA)" ve "Hasta Çocuk Tanılama Formu" kullanılmıştır. Bulgular: Hemşirelik bakımı öncesi ailelerin AGBA toplam puan ortalaması 64.13±9.79 iken hemşirelik bakımı sonrası 51.23±7.27 olduğu saptanmıştır. Sonuç: Bu sonuçlar, engelli çocuklar ve ailelerine ev ziyaretleri ile verilen hemşirelik bakımının ailelerin gereksinimlerini azaltmada etkili olduğunu göstermektedir.Anahtar kelimeler: Engelli çocuklar, hemşirelik bakımı, aile gereksinimi ABSTRACT Objective: The purposes of this study are to evaluate disabled children and their parents in an integrated manner, to determine the needs and to examine the effect of nursing care services on meeting the family needs. Method: The study was planned as quasi-experimental. The target population of the study consisted of disabled children between 0 and 18 years of age and their parents who have been registered to the homecare service provided by the Child and Youth Center Directorate in Gaziantep during January to April 2012. The sample group of the study consists of 30 mentally/physically/hearing/visually disabled children who were selected by the simple random sampling method. At least three home visits were made to each family during the study in order to determine the needs of the family and to determine the nursing needs related with these needs, to plan the approaches, apply and evaluate them with at least one month between each visit. Child Description Form, Caregiver and Family Description Form, Family Needs Assessment Tool (FNAT) and Child Diagnosis Form were used during the study. Results: The FNAT total mean score of family was found to be 64.13 ± 9.79 before nursing care and 51.23±7.27 after nursing care. Conclusion: These results demonstrate the effect of nursing care with home visit in reducing the needs of families with disabled children.

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Investigation of raising burden of children with autism, physical disability and mental disability in China

Cited by 80 publications

References 7 publications

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Investigation of the Effect of Level of Family Needs Coverage that Nursing Care Given to Family with Disabled Children

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