ABSTRACT

Background

The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns.

Method

We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents’ concerns about being outlived by their child.

Results

Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents’ concerns and sometimes resulted in feelings of despair.

Conclusions

Our study provides insight into the nature and gravity of parents’ concerns. The division of parents’ concerns into roles helps to address future care and support gaps for people with PIMD.

中文翻译：

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“我希望我能活得比他长”：一项关于父母担心被患有严重智力和多重残疾的孩子活得更久的定性研究

摘要

背景

患有严重智力和多重残疾 (PIMD) 的人的预期寿命正在增加，父母们担心他们的孩子可能比患有 PIMD 的孩子活得更久。然而，人们对这些担忧的性质知之甚少。

方法

我们采访了 27 位 PIMD 患者的父母，并按主题分析了数据，以探讨父母对被孩子活得更久的担忧。

结果

大多数父母希望他们的孩子患有 PIMD 的寿命更长，并将这与他们的孩子的生活质量 (QoL) 下降的预期联系起来，当他们会去世时。未来谁将担任父母角色的不确定性加剧了父母的担忧，有时会导致绝望的感觉。

结论

我们的研究提供了对父母担忧的性质和严重性的洞察。将父母的关注点划分为角色有助于解决 PIMD 患者未来的护理和支持差距。