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Personal assistance for children and adolescents (0-18) with intellectual impairments

  • Review
  • Intervention

Authors


Abstract

Background

There is a high and increasing prevalence of intellectual impairments among children and adolescents in the West. Many countries offer personal assistance in the form of individualised support for people living in the community by a paid assistant other than a healthcare professional for at least 20 hours per week.

Objectives

To assess the effectiveness of personal assistance for children and adolescents with intellectual impairments, and the impacts of personal assistance on others, compared to other interventions.

Search methods

Electronic databases including CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, Dissertation Abstracts International and a variety of specialist Swedish databases were searched from 1980 to June 2005; reference lists were checked; 345 experts, organisations, government bodies and charities were contacted in an attempt to locate relevant research.

Selection criteria

Children and adolescents with intellectual impairments (0-18 years) living in the community who require assistance to perform tasks of daily living (e.g., bathing and eating) and participate in normal activities due to permanent impairments. Controlled studies of personal assistance in which participants were prospectively assigned to study groups and in which control group outcomes were measured concurrently with intervention group outcomes were included.

Data collection and analysis

Titles and abstracts were examined by two reviewers. Outcome data were extracted. Studies were assessed for the possibility of bias. Results and potential sources of bias are presented for included studies.

Main results

One included study randomised 1002 participants to personal assistance or usual care. Whilst personal assistance was generally preferred over other services, some people prefer other models of care. This review indicates that personal assistance may have some benefits for some recipients and may benefit caregivers. However, near complete dependence on proxy respondents raises concerns about the validity of these results. Paid assistance probably substitutes for informal care and may cost government more than alternatives; however, the total costs to recipients and society are currently unknown.

Authors' conclusions

Research in this field is limited. When implementing new programmes, recipients could be randomly assigned to different forms of assistance. While advocates may support personal assistance for myriad reasons, this review demonstrates that further studies are required to determine which models of personal assistance are most effective and efficient for particular people.

摘要

背景

對有智能障礙的孩童和青少年 (0 – 18歲) 的個人化協助

在西方,孩童和青少年智能障礙的盛行率逐漸增高。許多國家在社區中,會請付費看護而非專業照護人員,每星期至少20個小時,來給予個人化的協助。

目標

評估有智能障礙的孩童和青少年,個人化協助的效果,以及對其他人的的影響。和其他介入方式做比較。

搜尋策略

電子資料庫,搜尋範圍包括CENTRAL,MEDLINE,EMBASE,CINAHL,PsycINFO,ERIC,Dissertation Abstracts International和其他各式專業的瑞典資料庫,從1980年至2005年6月。檢視參考文獻。聯繫包括345位專家、組織、政府團體、慈善機構,以得知相關的文獻試驗。

選擇標準

居住在社區中,有智能障礙的孩童和青少年 (0 – 18歲) ,因為有永久性的障礙,而需要協助以執行日常生活事務 (例如,洗澡、進食) 和參與正常活動。在關於個人化協助的控制試驗中,參與者事先被分配到試驗組與控制組,並同時量測兩組的結果。

資料收集與分析

由兩位回顧者檢視標題和摘要,並擷取結果數據。評估試驗可能的誤差。對所選擇的試驗,呈現結果及可能的誤差來源。

主要結論

一個試驗把1002名參與者隨機分佈為接受個人化協助或一般照護。雖然和其他服務比起來,個人化協助是比較受歡迎,某些人仍比較喜歡其他模式的照護方式。這篇回顧指出,個人化協助對於某些參與者和照護者,可能有某種程度的益處。然而,對代理回應者幾近完全的依賴,使這些結果的效度令人質疑。付費看護可能會取代正式的健康照護,也可能造成政府更大的開銷。然而,對接受者和社會的總開銷仍是未知的。

作者結論

這個領域的試驗有限。當開始新的計畫前,接受者可以被隨機接受不同的協助模式。雖然個人化協助的擁護者可能舉出無數的理由,這篇回顧顯示,仍需更進一步的試驗決定。那種模式的個人化協助為最有效果、最有效率的治療方式。

翻譯人

本摘要由成功大學附設醫院紀美宏翻譯。

此翻譯計畫由臺灣國家衛生研究院 (National Health Research Institutes, Taiwan) 統籌。

總結

有一篇試驗支持對於智能障礙孩童和青少年的個人化協助,因此尚需要更多的試驗。個人化協助被定義為: 對障礙者每星期至少20個小時的付費照護。這篇回顧評估個人化協助和其他任何種類的照護,對於智能障礙孩童和青少年的效果比較。文獻搜尋找出一篇符合選擇標準的研究,共包括1002位參與者。結果建議,個人化協助和其他方式比起來,可能為較為偏好的;然而,某些人喜歡其他模式的照護方式。這篇回顧指出,個人化協助對於某些接受者及其非正式照護者,可能有某種程度的益處。付費看護可能會取代非正式的健康照護,也比其他替代方案可能造成政府更大的開銷。然而,對接受者和社會的總開銷仍是未知的。

Plain language summary

One study supports use of Personal Assistance for children and teens with intellectual impairments: more research is needed

Personal assistance is here defined as paid support of at least 20 hours per week for people with impairments. This review investigated the effectiveness of personal assistance versus any other form of care for children and adolescents with intellectual impairments. A literature search identified one study that met the inclusion criteria, which included 1002 participants. It suggested that personal assistance may be preferred over other services; however, some people prefer other models of care. This review indicates that personal assistance may have some benefits for some recipients and their informal caregivers. Paid assistance might substitute for informal care and cost government more than alternative arrangements; however, the relative total costs to recipients and society are unknown.