On a pathway to resigned acceptance: Patients' experiences of living with symptom clusters in oral cancer.
Asha Mathew, Amit Jiwan Tirkey, Simon P Pavamani and 4 others
PMID 36682140WHAT IT FOUND
After oral cancer treatment, patients described multiple co-occurring symptoms that changed eating, speech, work and social life.
Hope for recovery often turned to disappointment, then acceptance that symptoms had become part of daily life.
Key findings
01Common symptom clusters included chewing difficulty with dry mouth and speech difficulty, with some also reporting diminished taste or trismus.
02Participants described expectations shifting from hope for symptom recovery to disappointment, and over time to resigned acceptance that symptoms would continue.
03Participants described a changed lifestyle requiring daily adaptations, with altered appearance and speech contributing to social isolation.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPsWhat it means for RNs
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What it does not show
The interview findings are from a purposive subsample of 20 patients, not all 300 survey patients. Few women took part, so experiences of women may differ. All participants were disease-free, treated with curative intent, and had severe concurrent symptoms, so it does not describe palliative patients or milder symptom clusters. Patients with cognitive impairment, history of depression or sleep disorders were excluded, so the findings do not describe those patients. Interviews were cross-sectional, not repeated over time, so changes were based on participants' retrospective accounts. Only patients able to articulate in English or Hindi were included.
The easy way to misread this
Do not read these themes as evidence that a specific symptom assessment or supportive care intervention works. The study interviewed 20 patients, included few women, at one hospital and did not test any treatment.