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家庭和个体因素在有残疾兄弟姐妹的青少年成长过程中的作用——对一个健康儿童功能的分析。一项病例对照研究方案。

The role of family and individual factors in going through adolescence having a disabled sibling - analysis of a healthy child's functioning. A case-control study protocol.

作者信息

Łada-Maśko Ariadna B, Sajewicz-Radtke Urszula, Radtke Bartosz M, Lipowska Małgorzata

机构信息

Institute of Psychology, University of Gdansk, Gdansk, Poland.

Laboratory of Psychological and Educational Tests, Gdansk, Poland.

出版信息

Health Psychol Rep. 2024 Mar 5;12(2):173-181. doi: 10.5114/hpr/183546. eCollection 2024.

DOI:10.5114/hpr/183546
PMID:38628281
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11016945/
Abstract

BACKGROUND

Having a disabled sibling can be a source of extremely important and enriching experiences that foster the development of social and emotional competences, as well as broadening the child's perspective and knowledge. On the other hand, it also poses many challenges for the siblings, especially in adolescence. Thus, the aim of the proposed project is to investigate the specificity of the growing up process in young people with disabled siblings.

PARTICIPANTS AND PROCEDURE

A total of 160 dyads (320 participants) - an adolescent and one of his/her parents - will take part in this cross-sectional case-control study. Participants will be assigned to four groups, having a sibling with: 1) intellectual disability, 2) motor disability, 3) chronic somatic disease, and 4) the control group - having a sibling without any disability. Both the healthy adolescent and one of the parents will fill out a set of questionnaires regarding the study variables: Questionnaire of Relationships with Siblings, Parental Attitude Scale-2, KidScreen-27, Parentification Questionnaire for Youth, Teenage Rebellion Questionnaire, Child Behavior Checklist 6-18.

RESULTS

The primary outcomes include investigating the healthy adolescent functioning in three environments: family, peers and school. The proposed research model focuses both on the difficulties associated with having a disabled sibling (e.g. possible occurrence of disorders) and resources (e.g. higher quality of relationships in the family, especially in the sibling subsystem).

CONCLUSIONS

The proposed comprehensive approach to the issue of disability in the family from the perspective of a healthy child will allow for a better understanding of the mechanisms underlying the process of growing up with disabled siblings.

摘要

背景

有一个残疾兄弟姐妹可能是极其重要且丰富的经历来源,有助于培养社交和情感能力,拓宽孩子的视野和知识面。另一方面,这也给兄弟姐妹带来诸多挑战,尤其是在青春期。因此,本项目的目的是研究有残疾兄弟姐妹的年轻人成长过程的特殊性。

参与者与程序

共有160对(320名参与者)——一名青少年及其父母之一——将参与这项横断面病例对照研究。参与者将被分为四组,其兄弟姐妹分别患有:1)智力残疾;2)运动残疾;3)慢性躯体疾病;4)对照组——有一个无任何残疾的兄弟姐妹。健康的青少年及其父母之一都要填写一套关于研究变量的问卷:《与兄弟姐妹关系问卷》《父母态度量表 -2》《儿童生活质量量表 -27》《青少年亲职化问卷》《青少年叛逆问卷》《儿童行为检查表(6 - 18岁)》。

结果

主要结果包括调查健康青少年在家庭、同伴和学校这三种环境中的功能状况。所提出的研究模型既关注与有残疾兄弟姐妹相关的困难(如可能出现的障碍),也关注资源(如家庭中更高质量的关系,尤其是在兄弟姐妹子系统中)。

结论

从健康孩子的角度对家庭中残疾问题提出的综合方法,将有助于更好地理解与有残疾兄弟姐妹一起成长过程背后的机制。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1ce/11016945/2006c6c6e027/HPR-12-183546-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1ce/11016945/daa7aa786799/HPR-12-183546-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1ce/11016945/2006c6c6e027/HPR-12-183546-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1ce/11016945/daa7aa786799/HPR-12-183546-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1ce/11016945/2006c6c6e027/HPR-12-183546-g002.jpg

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