Feasibility study of the psychosocial effects of an online mindfulness intervention in children and adolescents with achondroplasia and their parents

IF 1.6 4区 医学 Q3 GENETICS & HEREDITY European journal of medical genetics Pub Date : 2024-11-25 DOI:10.1016/j.ejmg.2024.104984
Àngel Casellas , Anna Casellas-Grau , Àngel Serra , Ester Busquets-Alibés
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Abstract

Introduction

Achondroplasia is a common skeletal dysplasia caused by a mutation in the FGFR3 gene, leading to disproportionate short stature and various clinical features. Despite the absence of definitive pharmacological treatments, mindfulness-based interventions may offer psychosocial benefits for affected individuals and their families.

Objectives

This study aimed to assess the feasibility and psychosocial effects of an online mindfulness intervention for children and adolescents with achondroplasia and their parents.

Methodology

The intervention was an eight-week, synchronous online program with 15 participants: seven children and adolescents with achondroplasia and eight parents. Quantitative outcomes were assessed pre-and post-intervention using the State-Trait Anxiety Inventory for Children (STAIC) and the Multifactorial Self-Assessment Child Adaptation Test (TAMAI) for the younger participants, along with the Brief Symptom Inventory (BSI-18) for parents. Participant satisfaction was assessed using a customized survey, and qualitative data were collected through semi-structured interviews.

Results

The study demonstrated high feasibility, with 84.61% adherence and 93.75% participant satisfaction. Average anxiety levels decreased in children and adolescents (30.60 ± 5.12 to 26.80 ± 6.94, p = .285) and parents (3.67 ± 3.98 to 1.00 ± .89, p = .066). Emotional regulation was the most reported improvement category by children and adolescents (31.4%), while general well-being was the most noted by parents (29.63%).

Conclusions

The results support the feasibility of this online mindfulness intervention for individuals with achondroplasia and their parents, indicating benefits for psychosocial well-being. Future studies should address these limitations by expanding sample sizes, exploring hybrid intervention models, and ensuring data anonymity. Integrating mindfulness into comprehensive psychosocial care strategies could enhance the quality of life for these populations.
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在线正念干预对软骨发育不良儿童和青少年及其父母的社会心理影响的可行性研究
导言软骨发育不良是一种常见的骨骼发育不良,由表皮生长因子受体 3 基因突变引起,导致身材矮小不成比例和各种临床特征。本研究旨在评估针对软骨发育不全儿童和青少年及其父母的在线正念干预的可行性和心理社会效果。方法干预是一个为期八周的同步在线项目,共有 15 名参与者:七名软骨发育不全儿童和青少年以及八名父母。在干预前和干预后,使用儿童状态-特质焦虑量表(STAIC)和多因素自我评估儿童适应测试(TAMAI)对年轻参与者进行定量结果评估,并使用简明症状量表(BSI-18)对家长进行评估。通过定制的调查问卷对参与者的满意度进行了评估,并通过半结构化访谈收集了定性数据。结果该研究的可行性很高,坚持率为 84.61%,参与者满意度为 93.75%。儿童和青少年(从 30.60 ± 5.12 到 26.80 ± 6.94,p = .285)以及家长(从 3.67 ± 3.98 到 1.00 ± .89,p = .066)的平均焦虑水平均有所下降。情绪调节是儿童和青少年报告改善最多的类别(31.4%),而一般幸福感则是父母注意最多的类别(29.63%)。未来的研究应通过扩大样本量、探索混合干预模式和确保数据匿名性来解决这些局限性。将正念纳入全面的社会心理护理策略可提高这些人群的生活质量。
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来源期刊
CiteScore
4.10
自引率
0.00%
发文量
193
审稿时长
66 days
期刊介绍: The European Journal of Medical Genetics (EJMG) is a peer-reviewed journal that publishes articles in English on various aspects of human and medical genetics and of the genetics of experimental models. Original clinical and experimental research articles, short clinical reports, review articles and letters to the editor are welcome on topics such as : • Dysmorphology and syndrome delineation • Molecular genetics and molecular cytogenetics of inherited disorders • Clinical applications of genomics and nextgen sequencing technologies • Syndromal cancer genetics • Behavioral genetics • Community genetics • Fetal pathology and prenatal diagnosis • Genetic counseling.
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