A Q methodology study to investigate the experiences of head and neck cancer patients from diagnosis to 1 year

Abstract

The experiences of disease and treatment for patients diagnosed with head and neck cancer (H&NC) are known to be important indicators of the quality of care but are represented poorly in the literature. Survival is a major outcome measure to which health-related quality of life (HRQoL) adds detail but outcomes are not fully representative of the patients' experiences because quality of care and reality of treatment are overlooked. This study explored the HRQoL, quality of care and reality of treatment themes using a mixed-methods approach, Q Methodology. In total, 18 participants who were at least 12 months post-diagnosis rank-ordered 45 prepared statements to reflect their own experiences of H&NC. After the statements had been sorted, the participants reviewed the order in an interview to clarify experiences. The statements become a way of facilitating the discussion because the participant can explain the position of specific statements that are notable for them. The ranking was factor-analysed case-wise and five factors provided the best conceptual fit: meaning and attachment to illness; overwhelmed by the cancer; surviving or not; change and recovery; and keep control for the greater good of others. The findings suggest there are distinct ways that H&NC patients experience the disease and its treatment. The concept of the experience being different and defined for individuals has practical implications at a clinical level and is a way of ensuring care is truly patient-centred.

Undergoing head and neck cancer surgery: A grounded theory

“…Meanwhile, patients experience anxiety due to what is happening and, despite concerns about uncertainty over the post-surgical functional situation, delegate to the HCPs any decision. A similar phenomenon has already been described in the literature on the same population, defining it as resigned acceptance (Griffiths, Humphris, Skirrow, & Rogers, 2008), with being alive as the ultimate aim (Reid, Swift, & Mehanna, 2017).…”

A Qualitative Study Examining the Illness Narrative Master Plots of People with Head and Neck Cancer

“…This study presents results from the semi-structured interviews that followed a Q-sort study [30,31]. The purpose of the Q-methodology study was to capture and facilitate the interpretation of experiences by the arrangement of statements, and then subject the statements to inverted factor analysis.…”

“…The purpose of the Q-methodology study was to capture and facilitate the interpretation of experiences by the arrangement of statements, and then subject the statements to inverted factor analysis. Within a past study [30] participants with H&NC were required to rank 45 statements in order of most agreed with to least agreed with around their experiences from diagnosis through treatment and recovery of H&NC. The analysis identified the unity of participants’ voices across five themes; (1) meaning and attachment to illness; (2) overwhelmed by the cancer; (3) surviving or not; (4) change and recovery; and (5) keep control for the greater good of others.…”

“…The semi-structured interviews after the Q-sort acted as reflective time which allowed participants to reveal and explain their choices and perceptions of the Q-sort statements in relationship to their experience of diagnosis and treatment. Participants were able to explain and define those statements that they most represented this provided a natural vehicle to reveal their own story and identify whether the factors identified previously [30] do indeed represent a plot of a story. Master plots or common stories reveal a similarity in the experiences of illness.…”

“…Master plots or common stories reveal a similarity in the experiences of illness. The most common stories were focused on because the discussions would often revolve around the previously identified factors [30]. Participants were able to justify their choices by identifying how and why they agreed or disagreed with the statements made.…”