Using Q methodology in research with head and neck cancer patients as an ethical procedure

Introduction

Head and neck cancer (HNC) encompasses several anatomical areas, but the highest incidence (2.0%) is the lip and oral cavity, with a mortality rate of 1.9%. ¹ Alcohol and tobacco are the higher risk factors and have an additive effect, however other factors should be taken into consideration, such as human papillomavirus (HPV) infection, exposure to a carcinogen, oral hygiene deficit, family history, mild irritation and chronic lining of the mouth, or occupational activity.^2,3

Considering the changes in upper aerodigestive tract functions, HNC can affect overall health, mental and physical health, family, social and professional life, with important implications on the quality of life. ³

As a result of head and neck cancer surgery, patients may often lead to compromised communication, suddenly speechless or disability. When some anatomical structures are removed, such as the larynx,^4,5 the phonation, pronunciation, and articulation of words can be altered. ⁴ Oral surgery also causes some communication difficulties due to the presence of temporary tracheostomy or tracheal intubation.

When interacting with others in society the oral communication is an essential tool, ⁶ but HNC faces major challenges in trying to communicate their needs.

A patient-reported outcome (PRO) is defined as a good strategy in reporting the status of patient’s health condition directly from the patient, without any other interference, such as the family. ⁷ As so, patient-reported-communication seems essential to catch and incorporate patient’s perspectives into clinical outcomes research. ⁸

Research provides the base for high-quality evidence-based nursing care, ⁹ aiming to improve patients health outcomes. ¹⁰ Further policies and procedures to provide quality care and patient safety are critical, and nurses should be encouraged to integrate nursing research findings into clinical practice, as this is a valuable source of scientific evidence for procedures, decisions, and guidelines.

Nurses’ focus of interest concerns the human responses to life and health transitions, and these comprise subjective phenomena, which are sometimes difficult to measure or to understand. In fact, in many clinical settings the patients’ answers towards health conditions are mainly subjective and complex. Faced with the complex phenomena that patients may experience, nursing research should look after a deeper understanding and accurate measurement, which mixed methods offers when integrating the qualitative and quantitative approach into the development of new knowledge. ¹¹

Q methodology in nursing research

William Stephenson described the first time Q methodology in 1935. ¹² This method combines qualitative and quantitative procedures,^13,14 allows qualitative understanding of the phenomena in study in a more systematic perspective, and has increased use in nursing research. ¹⁵ Since 1986, this methodology was considered useful in studying subjective phenomena in nursing, such as attitudes, feelings, values, perceptions, life experience (coping, stress, living with chronic illness), intra-individual concerns (self-esteem, body image) and roles (nurse- image, role transition in students). ¹⁶ The developments in specific computer software have also allowed improvements in this methodology. ¹⁷

Q methodology has been described as a great promise to improve the study of the subjective phenomenon in clinical and non-clinical topics in nursing, by providing an objective dimension for the analysis of ideas, attitudes, and perceptions.^18,19 Subjectivity “refers to ideas that are based on personal opinions, life experiences and feelings”. ²⁰

Q methodology englobes five distinct stages, as follows: (1) Development of a concourse (collection of all the possible statements respondents about the subject); (2) Development of a Q-sample (or Q set) (Group of statements to be rank-ordered by the test participants); (3) Selection of a P-sample (Q participants); (4) Q – sorting (participants order the statements according to their agreement); (5) Analysis and interpretation (factorial analysis grouping together those with similar points of view). ²⁰

Each participant sorts the statements (in their Q sort) by considering their level of agreement with each statement, which represents their position on the topic under study. ²¹

Factor analysis is used to analyze participants’ responses, and the variables are the individuals and not traits. ²¹ As so, the researcher may analyze similarities and differences between groups. ²¹

Inclusion and integration of head and neck cancers patients in research

Data analysis is performed through statistical analysis of patients' experiences, from a qualitative and quantitative point of view. ²² One of the most common major functional changes in HNC is impaired verbal communication, and patients with severe communication disabilities have been considered a vulnerable group at this point.^23,24 Any investigation must include people from different populations, and the researcher must ensure that the research populations are selected in a proportionate and equitable way. ²⁵

Communication is a core element in research, for example when using interviews for data collection, and also comprises both verbal and non-verbal dimensions. During the treatment or in post-surgery (laryngectomy, tracheostomy, glossectomy), HNC patients can have temporary or permanent speech impairment. ²⁶ When looking over publication including this population, some participants´ inclusion criteria stated that patients must have the ability to communicate verbally.^27,28 Other studies use data collection methods that are not possible to perform by these patients, such as interviews,^29,30 telephone, ³¹ or focus group, ³² that require functional communication skills or functioning. These situations disclose some questions concerning evidence-based care: if patients are excluded from research, then a gap may exist in the knowledge that is needed to inform nursing care. Researchers need to select methods that could include these participants, keeping both, respect for patients’ condition and scientific integrity in study clarity.

Additionally, in the context of treating HNC, ethical considerations are a poorly explored area. The principle of justice relates to the guarantee of fairness and equality, Beauchamp and Childress ³³ refers that “…persons equal in whichever respects are deemed relevant should be treated equally” and patients with impaired verbal communication should not be excluded for having this vulnerable condition. Q Methodology uses a card sorting technique, which requires participants to order statements written on cards, according to their preference, in the research.^22,34 Participants should initially divide the items into three categories: agree, disagree and neutral. ³⁵ Subsequently, each participant should sort the statements according to an instruction (which usually represents the point of view, attitude, opinion, in short, the phenomenon under study) (Figure 1). And because of that, this methodology is very sympathetic to patients who have impaired verbal communication. For example, used it to study experiences of percutaneous endoscopic gastrostomy tube feeding, in head and neck cancer patients undergoing radical treatment. ²²

OPEN IN VIEWER

Figure 1.

Example of a Q sorting distribution model.

Using this research approach, researchers can study HNC patients and confirm its potential value of this research approach in this specific population.^22,34

By identifying individual needs and preferences, rather than studying the disease, researchers are focusing on the care of that individual person. ³⁶ Q methodology seems to be an adequate, inclusive, and quite an innovative method for research with people who have impaired verbal communication.

To study the perspectives of participants, Q methodology uses a qualitative approach in defining the problem, developing statements, and selecting participants. ³⁷ Quantitative analysis is used to examine the perspectives of participants who represent different viewpoints on a topic. ²¹

Conclusion

Q method seems to offer a quite novel approach to include patients with HNC who have impaired verbal communication in research, as the card sorting technique is, at the same time, inclusive and might decrease the subjectivity of communication.

The localization of cancer, size, extension, stage, and treatment caused different changes in physicals, mental, social, and family aspects. Q sorting offered patients the opportunity to decide what issue or phenomenon is more important for them, improving nursing knowledge about the person singularly.

This research method has much to offer to nurse researchers, particularly those interested in the study of patients’ perspectives in a reliable way. Thus, it has the potential to help nurses in providing evidence-based care in response to patients’ needs.