评论:Pirola等人(2019)“巴西版头颈癌患者羞耻和耻辱量表(SSS-Br)的验证”

Susana S A Miguel, S. Caldeira
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As so, validation studies are more than welcome to provide valid and reliable tools. But, the authors (Pirola et al., 2019) seem to have difficulties in totally assessing some scale’s items and domains due to subjectivity when saying that “statements that may be interpreted in a broad manner by patients.”We totally agree with authors and congratulate the rigor and clarity in describing and interpreting the results. This is a common feeling when studying these patients and when studying subjective topics. This was critical when we selected the method to validate nursing diagnoses in this patients. We are using mixed-method research that merges quantitative and qualitative procedures and is widely known to be adequate to study subjectivity: Q methodology (Akhtar-Danesh et al., 2008; Simons, 2013; Watts and Stenner, 2013; Ramlo, 2015). A defining principle is that the different points of vieware amenable to systematic analysis (Simons, 2013). 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The inclusive nature of the research method could be positive in reducing the stigma and shame for not being select for research, as sometimes not being able to verbally communicate or having impaired communication is an exclusion criterion in studies with head and neck patients (Barichello et al., 2009; D’Souza et al., 2018; Formigosa et al., 2018; Grattan et al., 2018). In this regard, the use of the Q methodology provides a new approach for research with head and neck patients, by using a card classification technique that is appropriate to impaired communication often present in this vulnerable group (Merrick and Farrell, 2012). Additionally, no need to recruit large samples when using the Q methodology because it is not the number of participants that is important but their viewpoints (Stone and Turale, 2015). 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The inclusive nature of the research method could be positive in reducing the stigma and shame for not being select for research, as sometimes not being able to verbally communicate or having impaired communication is an exclusion criterion in studies with head and neck patients (Barichello et al., 2009; D’Souza et al., 2018; Formigosa et al., 2018; Grattan et al., 2018). In this regard, the use of the Q methodology provides a new approach for research with head and neck patients, by using a card classification technique that is appropriate to impaired communication often present in this vulnerable group (Merrick and Farrell, 2012). Additionally, no need to recruit large samples when using the Q methodology because it is not the number of participants that is important but their viewpoints (Stone and Turale, 2015). 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引用次数: 0

摘要

亲爱的编辑,我们写这封信是关于最近发表在《姑息治疗和支持性护理》杂志上的论文《巴西版头颈癌患者羞耻和耻辱量表(SSS-Br)的验证》(pi罗拉等人,2019)。本文报告了一项方法学研究,旨在验证头颈癌患者样本中的量表。这个标题对我们来说特别有趣。首先,因为我们的研究集中在同一病人的护理诊断的验证。其次,因为我们正在验证的诊断也涉及主观现象,但不同于羞耻和耻辱。我们正在研究“身体形象紊乱”和“情境性低自尊”。在医疗保健中,工具在促进评估和精确诊断方面非常重要。因此,验证研究非常受欢迎,可以提供有效和可靠的工具。但是,作者(pi罗拉等人,2019)在说“患者可能以广泛的方式解释的陈述”时,由于主观性,似乎很难完全评估一些量表的项目和领域。我们完全同意作者的观点,并祝贺他们在描述和解释结果方面的严谨和清晰。在研究这些病人和研究主观话题时,这是一种常见的感觉。当我们选择方法来验证该患者的护理诊断时,这是至关重要的。我们正在使用混合方法研究,将定量和定性程序结合起来,并被广泛认为足以研究主观性:Q方法(Akhtar-Danesh等人,2008;西蒙斯,2013;Watts and Stenner, 2013;Ramlo, 2015)。一个定义原则是,不同的观点是可以进行系统分析的(西蒙斯,2013)。Qmethodology不同于定性研究,因为它使用相关性和因子分析来分析数据,这与定量方法更具可比性(Simons, 2013)。这种方法被认为适合研究主观概念,如价值观、信仰和态度,并且可以客观、科学地进行评估,以产生假设或发展理论(Lee et al., 2008)。Q方法论已在护理中使用,与患者及其家属,在研究被照顾的经验,态度,观念,感情和价值观的观点,旨在有效地探索和比较主观性和捕捉人类经验(Simons, 2013;Ho and Gross, 2015)。头颈癌患者往往因语言交流障碍而被排除在研究之外。我们祝贺Pirola et al.(2019)将这些患者纳入本研究,关注如此重要的现象。研究方法的包容性可以积极减少因未被选择进行研究而产生的耻辱感和羞耻感,因为有时无法口头交流或有沟通障碍是头颈部患者研究的排除标准(Barichello et al., 2009;D 'Souza et al., 2018;Formigosa et al., 2018;Grattan等人,2018)。在这方面,Q方法的使用为头颈部患者的研究提供了一种新的方法,通过使用卡片分类技术,适用于这一弱势群体中经常出现的沟通障碍(Merrick and Farrell, 2012)。此外,在使用Q方法时不需要招募大样本,因为重要的不是参与者的数量,而是他们的观点(Stone和Turale, 2015)。我们深信,羞耻和耻辱也可以使用Q方法进行研究,特别是当作者(Pirola et al., 2019)报告样本量和颊颌面假体的制造是研究的局限性时。研究对改善护理至关重要,因此,讨论程序,限制和机会是对翻译的丰富过程,主要是患者的福祉和尊严保护护理。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
A commentary on: Pirola et al. (2019) “Validation of the Brazilian version of the Shame and Stigma Scale (SSS-Br) for patients with head and neck cancers”
Dear Editor, We are writing this letter concerning the paper “Validation of the Brazilian version of the Shame and Stigma Scale (SSS-Br) for patients with head and neck cancers” (Pirola et al., 2019) recently published ahead of print in Palliative and Supportive Care. This paper reports a methodological study aiming to validate a scale in a sample of head and neck cancer patients. The title was particularly interesting for us. First, because our research is focused on the validation of nursing diagnoses in the same patients. Second, because the diagnoses we are validating also concern subjective phenomena, but different from shame and stigma. We are studying “disturbed body image” and “situational low self-esteem”. Tools are very important in facilitating the assessment and precise diagnosis in healthcare. As so, validation studies are more than welcome to provide valid and reliable tools. But, the authors (Pirola et al., 2019) seem to have difficulties in totally assessing some scale’s items and domains due to subjectivity when saying that “statements that may be interpreted in a broad manner by patients.”We totally agree with authors and congratulate the rigor and clarity in describing and interpreting the results. This is a common feeling when studying these patients and when studying subjective topics. This was critical when we selected the method to validate nursing diagnoses in this patients. We are using mixed-method research that merges quantitative and qualitative procedures and is widely known to be adequate to study subjectivity: Q methodology (Akhtar-Danesh et al., 2008; Simons, 2013; Watts and Stenner, 2013; Ramlo, 2015). A defining principle is that the different points of vieware amenable to systematic analysis (Simons, 2013). Qmethodology differs from qualitative research because it analyses data using correlation and factor analysis, which is more comparable to quantitative methods (Simons, 2013). Thismethod is seen to be as adequate for research about subjective concepts such as values, beliefs, and attitudes, and can be assessed objectively and scientifically to generate hypotheses or develop theories (Lee et al., 2008). The Q methodology has been used in nursing care, with patients and their families, in studying perspectives on the experiences of being cared, attitudes, perceptions, feelings, and values, aiming to effectively explore and compare the subjectivity and capture the human experience (Simons, 2013; Ho and Gross, 2015). Head and neck cancer patients are often excluded from research due to impaired verbal communication. We congratulate Pirola et al. (2019) for including these patients in this study concerning such important phenomena. The inclusive nature of the research method could be positive in reducing the stigma and shame for not being select for research, as sometimes not being able to verbally communicate or having impaired communication is an exclusion criterion in studies with head and neck patients (Barichello et al., 2009; D’Souza et al., 2018; Formigosa et al., 2018; Grattan et al., 2018). In this regard, the use of the Q methodology provides a new approach for research with head and neck patients, by using a card classification technique that is appropriate to impaired communication often present in this vulnerable group (Merrick and Farrell, 2012). Additionally, no need to recruit large samples when using the Q methodology because it is not the number of participants that is important but their viewpoints (Stone and Turale, 2015). We deeply believe that shame and stigma could be also studied using the Q methodology, particularly when authors (Pirola et al., 2019) report sample size and the manufacture of buccal–maxillofacial prostheses as limitations of the study. Research is critical in care improvement and so, discussing procedures, limitations, and opportunities is an enrichment process towards translation and, mainly, patients’ well-being and dignity-preserving care.
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