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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”

Published online by Cambridge University Press:  26 September 2019

Susana Miguel*
Affiliation:
Centre for Interdisciplinary Research in Health, Institute of Health Sciences, Universidade Católica Portuguesa, Lisbon
*
Author for correspondence: Susana Miguel, Centre for Interdisciplinary Research in Health, Institute of Health Sciences, Universidade Católica Portuguesa, Lisbon. E-mail: [email protected]
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Abstract

Type
Letter to the Editor
Copyright
Copyright © Cambridge University Press 2019

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., Reference Pirola, Paiva and de Oliveira2019) 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., Reference Pirola, Paiva and de Oliveira2019) 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., Reference Akhtar-Danesh, Baumann and Cordingley2008; Simons, Reference Simons2013; Watts and Stenner, Reference Watts and Stenner2013; Ramlo, Reference Ramlo2015). A defining principle is that the different points of view are amenable to systematic analysis (Simons, Reference Simons2013). Q methodology differs from qualitative research because it analyses data using correlation and factor analysis, which is more comparable to quantitative methods (Simons, Reference Simons2013). This method 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., Reference Lee, Jo and Chee2008).

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, Reference Simons2013; Ho and Gross, Reference Ho and Gross2015).

Head and neck cancer patients are often excluded from research due to impaired verbal communication. We congratulate Pirola et al. (Reference Pirola, Paiva and de Oliveira2019) 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., Reference Barichello, Sawada and Sonobe2009; D'Souza et al., Reference D'Souza, Serrao and Watson2018; Formigosa et al., Reference Formigosa, Costa and Vasconcelos2018; Grattan et al., Reference Grattan, Kubrak and Caine2018). 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, Reference Merrick and Farrell2012). 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, Reference Stone and Turale2015).

We deeply believe that shame and stigma could be also studied using the Q methodology, particularly when authors (Pirola et al., Reference Pirola, Paiva and de Oliveira2019) 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.

References

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