背景 / 癌症是導致兒童死亡的主要原因。癌症對孩子和他們的父母帶來破壞性的影響。文獻指出心理教育有助減輕家長照顧兒童癌症病人的壓力，以及提高家長適應壓力的能力。隨著互聯網急速的發展，互聯網有可能成為提供心理教育干預的一個平台。 / 研究目的 / 此項研究之總體目的在於開發一個針對香港兒童癌症病人的家人而設的網上心理教育計劃 (PWEBI) ，並測驗其可行性和有效性。 / 研究方法 / 本研究包括三個階段。 / 第一階段中使用的半結構式訪談的方法，探討兒童癌症病人的家長的支援性護理需求。PWEBI的制定是基於第一階段研究結果、文獻綜述產生的證據，並採用Transactional model of stress and coping（TMSC） 作為理論框架 。 PEWBI由兩部分組成，包括資訊網站和網上支援小組，為期八週。 / 第二階段為翻譯及漢化「應付壓力測量表」(Brief COPE-C)和「主要照顧者生活品質量表」(CQOLC-C)，並檢測其在香港適用人群中的信效度。以上兩個量表會在研究的第三階段使用。 / 第三階段是採用了非等效控制組,時間系列研究設計,以測試PEWBI的可行性，可接受性，以及PEWBI對兒童癌症病人的家長在壓力，應對壓力和生活質量的效用。研究的兒童癌病人的症家長來自兩個地區醫院。干預組同時接受PEWBI和常規護理治療，對照組則只接受醫院常規護理治療。本階段對同意率，失訪率，干預服從性，干預劑量和對PEWBI的滿意度進行了評估。兒童癌症家長的壓力指數，應對能力和生活質量會在干預前(基線資料,T0)八週(T1)和12週(T2)進行測量。PEWBI的效用採用了廣義估計方程模型進行分析。 / 研究結果 / 第一階段研究共邀請了14位兒童癌症病人的家長參與。家長的支援性護理需求分為三個主題，即信息的需求，心理和精神需求，以及資源需求。 / 第二階段向125名慢性病兒童的照顧者進行問卷調查。BriefCOPE-C和CQOLC-C均具有良好的內容效度（量表水平內容效度指標：0.97，項目水平內容效度指標為0.83-1.00）。Brief COPE-C與Ways of Coping Questionnaire中文版之間的顯著的相關性(r=0.24-0.69，p<0.01）驗証了BriefCOPE-C的收歛效度。BriefCOPE-C也表現出足夠的內部一致性（克隆巴赫（信度）系數：0.886）和為期兩週的重測信度（組內相關係數：0.876） / 第三階段研究招募44名兒童癌症病人的家長參加，28名和16名分別分配到干預組到對照組。同意率和失訪率分別為60.9％和29.5％。28名家長中,半數家長曾使用PEWBI至少一次，並且對於PEWBI感到滿意。雖然有干預組和對照組在壓力指數，應對能力和生活質量的結果沒有顯著差異，但是干預組在所有變量上保持穩定，相反對照組中則觀察到變量在時間上出現波動。 / 結論 / 是次研究在納入，保留，干預服從性，接受性和滿意度的結果顯示了PEWBI在香港兒童癌症家長是可行的。初步的研究結果亦顯示PEWBI對兒童癌症病人的家長在壓力，應對壓力和生活質量有正面的改善，表明PEWBI可能具有臨床意義。另外，本研究提供了兒科癌症病人的家長對實施PEWBI的可行性和可接受性的證據，增加目前的知識體系。 / Background / Cancer is the leading cause of death in children, worldwide and locally. A diagnosis of cancer has a devastating impact on both child and parents. Psychoeducational interventions (PEI) have been implemented to relieve caregiving stress and promote parents’ coping abilities and quality of life, and the recent rapid development of the internet has made it a possible platform for delivering PEI. / Aims / The overall aim of the study was to develop and pilot-test a psychoeducational web-based intervention (PEWBI) for parents of pediatric cancer patients. / Methods / The study consists of three phases. With the guidance of the Medical Research Council (MRC) framework, the development of PEWBI starts with a meta-analysis to identify the best available evidence for the effects of PEIs on caregivers of pediatric canc / As guided by the TMSC, PEWBI is believed to enhance parents’ coping and improve their quality of life (QoL). To measure these two constructs, a coping instrument, Brief COPE, was translated, and a QoL instrument, Caregiver Quality of Life Index-Cancer / The feasibility, acceptability and effects of PEWBI in stress, coping and QoL were examined in Phase Three, which adopted a non-equivalent control group time series design. The study was carried out in two regional hospitals. Subjects in both interven / Results / The semi-structured interviews were conducted with 14 parents in Phase One and revealed the supportive care needs of the parents, classified into three categories of needs: informational, psychosocial and spiritual, and resources. / In Phase Two, a total of 125 caregivers of children with a chronic illness were recruited. Both the Chinese version of Brief COPE (Brief COPE –C) and the Cantonese version of CQOLC (CQOLC-C) possessed good content validity with a scale content validit / A total of 44 parents of pediatric cancer patients participated in Phase Three, 28 and 16 in intervention and control groups, with consent and attrition rates of 60.9% and 29.5%, respectively. Half the parents used PEWBI at least once and were satisfi / Conclusion / The findings in the area of recruitment, retention, adherence and acceptance indicate that implementing PEWBI in this specific population is feasible in Hong Kong. The preliminary effects of PEWBI showed positive improvement in all outcomes, suggestin / Tang, Pui Yin. / Thesis Ph.D. Chinese University of Hong Kong 2016. / Includes bibliographical references (leaves ). / Abstracts also in Chinese. / Title from PDF title page (viewed on …). / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only.
| Identifer | oai:union.ndltd.org:cuhk.edu.hk/oai:cuhk-dr:cuhk_1292217 |
| Date | January 2016 |
| Contributors | Tang, Pui Yin (author.), (thesis advisor.), Chinese University of Hong Kong Graduate School. Division of Nursing. (degree granting institution.) |
| Source Sets | The Chinese University of Hong Kong |
| Language | English, Chinese |
| Detected Language | English |
| Type | Text, bibliography, text |
| Format | electronic resource, remote, 1 online resource ( leaves) : illustrations, computer, online resource |
| Rights | Use of this resource is governed by the terms and conditions of the Creative Commons "Attribution-NonCommercial-NoDerivatives 4.0 International" License (http://creativecommons.org/licenses/by-nc-nd/4.0/) |
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