Quitmann Julia, Rohenkohl Anja, Sommer Rachel, Petzold Sophie, Bullinger-Naber Monika
Prax Kinderpsychol Kinderpsychiatr. 2014;63(8):635-48. doi: 10.13109/prkk.2014.63.8.635.
How do Affected Children and Adolescents Experience their Short Stature, and what is the Point of View of their Parents? Despite a large number of publications on the psychosocial situation of short statured children and their parents only a few qualitative studies focus on the perspective of the affected families. Within the European QoLISSY study ("Quality of Life in Short Stature Youth") an instrument to assess the health related quality of life of short statured children was developed. The aim of this project was to examine the self-perceived quality of life of the children themselves in comparison to their parents' perspective. During the development of the QoLISSY instrument, focus groups were conducted as a first step of this study. A total of 23 short statured children and 31 parents participated and discussed their experiences in separate groups with trained moderators. The discussions were analyzed qualitatively und results were used to generate a first list of items for the questionnaire to be developed. While parents focused on socio-emotional problems, children talked much more about their growth hormone treatment and problems in their social environment. In comparison to other studies children rated their quality of life worse than their parents. Not only medical treatment but also a psychological and socio-emotional intervention seems to be indicated.
受影响的儿童和青少年如何看待自己的身材矮小，他们父母的观点又是什么？尽管有大量关于身材矮小儿童及其父母心理社会状况的出版物，但只有少数定性研究关注受影响家庭的观点。在欧洲QoLISSY研究（“身材矮小青少年的生活质量”）中，开发了一种评估身材矮小儿童健康相关生活质量的工具。该项目的目的是将儿童自身感知的生活质量与其父母的观点进行比较。在开发QoLISSY工具的过程中，焦点小组作为本研究的第一步进行。共有23名身材矮小的儿童和31名家长参与，他们在经过培训的主持人的主持下，分别在小组中讨论了自己的经历。对讨论进行了定性分析，并将结果用于生成待开发问卷的首批项目清单。父母关注的是社会情感问题，而孩子更多地谈论他们的生长激素治疗以及社会环境中的问题。与其他研究相比，孩子们对自己生活质量的评价比父母低。似乎不仅需要医疗治疗，还需要心理和社会情感干预。
