ABSTRACT

Background

Quality of Life (QoL) may be a factor in physicians’ decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD.

Method

We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL.

Results

Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way.

Conclusions

The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making.

中文翻译：

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医师对智力和多重残疾严重者的生活质量的看法：定性研究

摘要

背景

生活质量（QoL）可能是医生决定治疗智障和多发性智障人士（PIMD）的因素。我们探讨了医师对PIMD患者的QoL的看法。

方法

我们对七位治疗PIMD的经验丰富的医生进行了半结构化访谈，对其进行了主题化分析，并确定了QoL相关元素的类别。

结果

发现了元素的情感，身体和关系簇。医师主要命名情感元素来描述良好的QoL，物理元素来描述较差的QoL，并且他们强调关系语境对QoL的作用。此外，他们还提到好和坏元素之间的平衡是好的QoL。关系方面的身体下降，不良预后和问题增加对生活质量产生负面影响。

结论

关系情境对良好和较差的生活质量的影响需要进一步调查，因为这会对道德决策产生影响。