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基于医院的 ALL 患儿及其家庭的心理社会支持方案:从全面三方视角看。

Hospital Based Psychosocial Support Program for Children with ALL and their Families: A Comprehensive Triad's Perspective.

机构信息

Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, 110029, India.

Dr. B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India.

出版信息

Indian J Pediatr. 2019 Feb;86(2):118-125. doi: 10.1007/s12098-018-2679-z. Epub 2018 Apr 21.

Abstract

OBJECTIVES

To elucidate potential target areas of intervention and mechanisms for implementation of intervention for children with cancer during the treatment phase.

METHODS

Focused group discussion (FGDs) served as a primary source of providing phenomenal perspectives to explore the key objective. Eight focus groups of 45-60 min each were held with 5-9 members in each discussion. The participants were either patients, their caregivers or health care providers. The focus group audio recordings were professionally transcribed after all identifiers were removed. Employing a constructivist paradigm with a phenomenological approach, also known as emergent-systematic focus group design the study reported on families' experiences of childhood cancer as construction of objective reality. Investigator triangulation method was adopted to ensure trustworthiness.

RESULTS

Using constant comparison analysis, multistage process analysis was done which resulted in 849 codes, 32 subthemes, 20 themes and 5 domains. A total of 64 participants participated: 4 FGDs with parents of children with ALL (n = 31); 1 FGD with professionals working in the field of cancer (n = 10) and 3 FGDs with children with ALL (n = 23). Participant's mean age at the time of study was 10 y (+3.3) for children; 37 y (+4.93) for caregivers and 35 y (+3.5) for professionals. The number of participants and their age range at study varied slightly between the eight focus groups.

CONCLUSIONS

Caregivers presented care burden and compromised aspects of Quality of life (QOL). An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.

摘要

目的

阐明儿童癌症治疗阶段干预的潜在目标领域和实施干预的机制。

方法

焦点小组讨论(FGD)作为提供现象学观点的主要来源,以探索关键目标。共进行了 8 个焦点小组讨论,每个小组讨论时长为 45-60 分钟,每组 5-9 人。参与者为患者、其照顾者或医疗保健提供者。在去除所有标识符后,专业人员对焦点小组的音频记录进行了转录。采用建构主义范式和现象学方法,也称为新兴系统焦点小组设计,本研究报告了家庭对儿童癌症的体验,即客观现实的构建。采用调查员三角测量方法确保可信度。

结果

使用恒定性比较分析,进行多阶段过程分析,得出 849 个代码、32 个子主题、20 个主题和 5 个领域。共有 64 名参与者参与:4 个 ALL 患儿父母的焦点小组(n=31);1 个癌症领域专业人员的焦点小组(n=10)和 3 个 ALL 患儿的焦点小组(n=23)。研究时患儿的平均年龄为 10 岁(+3.3);照顾者的平均年龄为 37 岁(+4.93);专业人员的平均年龄为 35 岁(+3.5)。在这 8 个焦点小组中,参与者的数量及其年龄范围略有不同。

结论

照顾者表现出护理负担和生活质量(QOL)受损的情况。强烈建议在治疗期间和治疗后,除了医疗治疗外,为患者及其家庭提供有效且文化敏感的社会心理支持。

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