Representing disabling experiences: Rethinking quality of life when evaluating public health interventions
Representing disabling experiences: Rethinking quality of life when evaluating public health interventions
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代表残疾经历：评估公共卫生干预措施时重新思考生活质量
DOI：
10.1111/polp.12515
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发表时间：
2023
影响因子：
1.3
通讯作者：
Atkin K
中科院分区：
文献类型：
--
作者：
Atkin K
促进公共卫生的干预措施有可能改变生活，特别是对那些经历残疾的人来说，他们在整个生命过程中会发生明显的社会和物质不平等。在评估此类干预措施时，健康相关的生活质量被视为主要结局，并用于告知循证实践。然而，生活质量测量不是简单的启发式设备，而是表达知识力量的技术。如果将方法的确定性置于个人证词的可信度之上，残疾人可能会发现自己被排除在公共卫生干预措施所依据的证据基础之外。我们的研究探讨了如何通过工具来代表残疾，为评估性公共卫生研究提供信息，并建立了替代做法的可能性，包括更适合代表经验的更适当措施的可能性。最后，我们考虑了关于“繁荣”的讨论如何能够创造更具包容性和赋权性的做法，能够挑战不平等和歧视，符合对社会正义的承诺。2021.“公民身份是一种预期服从的形式？德国预防性卫生政策的影响。”Politics & Policy49（4）：891-912. https://doi.org/10.1111/polp.12421.Grijalva Maza，Luisa. 2012.“解构《哈利·波特》中的宏大叙事：小说和实践中的包容/排斥和歧视政策。Politics & Policy40（3）：424-43. https：//doi.org/10.1111/j.1747 - 1346.2012.00358.x.Winburn，Jonathan，and阿曼达Winburn. 2020.“政治意识形态在公众舆论中的作用，对公立学校列举的反欺凌政策。Politics & Policy48（3）：442-63. https://doi.org/10.1111/polp.12355.
Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life‐course. When evaluating such interventions, health‐related quality‐of‐life is regarded as a primary outcome and used to inform evidence‐based practice. Quality‐of‐life measures, however, are not straightforward heuristic devices but express technologies of epistemic power. By prioritizing methodological certainty over the credibility of personal testimonies, those experiencing disability can find themselves excluded from the evidence base on which public health interventions are based. Our study explores how disability is represented by tools informing evaluative public health research and establishes the possibility of alternate practices, including the potential for more appropriate measures better suited to representing experiences. We conclude by considering how discussions about “flourishing” can create more inclusive and empowering practices able to challenge inequalities and discrimination consistent with a commitment to social justice.Related ArticlesEwert, Benjamin. 2021. “Citizenship as a Form of Anticipatory Obedience? Implications of Preventive Health Policy in Germany.”Politics & Policy49(4): 891–912. https://doi.org/10.1111/polp.12421.Grijalva Maza, Luisa. 2012. “Deconstructing the Grand Narrative inHarry Potter: Inclusion/Exclusion and Discriminatory Policies in Fiction and Practice.”Politics & Policy40(3): 424–43. https://doi.org/10.1111/j.1747‐1346.2012.00358.x.Winburn, Jonathan, and Amanda Winburn. 2020. “The Role of Political Ideology in Public Opinion toward Enumerated Antibullying Policies in Public Schools.”Politics & Policy48(3): 442–63. https://doi.org/10.1111/polp.12355.
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