On a pathway to resigned acceptance: Patients’ experiences of living with symptom clusters in oral cancer

• Published in: European journal of oncology nursing : the official journal of European Oncology Nursing Society 2023-02, Vol.62, p.102263-102263, Article 102263
• Main Authors: Mathew, Asha, Tirkey, Amit Jiwan, Pavamani, Simon P., Steffen, Alana, Lockwood, Mark B., Patil, Crystal L., Doorenbos, Ardith Z.
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Co-occurring symptoms; Humans; Lived experience; Mouth Neoplasms; Oral cancer; Outpatients; Patient experiences; Phenomenology; Qualitative; Qualitative Research; Symptom cluster; Syndrome; Xerostomia
• ISSN: 1462-3889; 1532-2122
• DOI: 10.1016/j.ejon.2022.102263

Patients treated for oral cancer experience multiple concurrent symptoms. A larger mixed-methods study was conducted among patients who were treated with surgery alone or in combination with other modalities. The aim of the qualitative strand was to explore the experiences of living with symptom clusters. A phenomenological design was used to explore the lived experiences. Participants were recruited for the larger study from two outpatient units of a tertiary teaching hospital (N = 300). After completion of a survey, a maximum variation purposive subsample of 20 participants was drawn from the larger sample and were interviewed in-depth about their experiences. Thematic analysis was conducted. All participants experienced multiple concurrent symptoms, commonly including chewing difficulties + dry mouth + speech difficulties; chewing difficulties + dry mouth + diminished taste; and chewing difficulties + dry mouth + speech difficulties + trismus. Analysis of their experiences of living with these symptom clusters revealed six themes: Acknowledged Disruptions, Inner Dialogue, Shifting Expectations, Floods of Emotions, Exercising Control over Life, and Resigned Acceptance. These themes portrayed that time and living with symptom clusters lead to what we describe as a pathway to resigned acceptance. This pathway is intermingled with disruptions, self-reflections on ‘why me’ and karma, negative emotions, and failed expectations regarding symptom recovery. Attempts to exercise control over their lives were also revealed through coping strategies, watchful living, future planning, and being health advocates. On realizing with time that further symptom alleviation is unlikely, and considering symptom-cluster experiences as being written in their fate, they move towards a state of resigned acceptance. However, unlike passive acceptance, their belief in fate was accompanied with resilience, evidenced by their ongoing efforts to explore pragmatic ways to live with symptom clusters. Findings provide key insights into patient perspectives which most often remain unexpressed in clinical settings. Further research is required to explore watchful living, fate as a coping strategy, and intertwining of faith, fate, and karma. •Experience of persons living with symptom clusters post-treatment for oral cancer could be described as being on a pathway to resigned acceptance.•The pathway is intermingled with disruptions to life, self-reflections, negative emotions, and failed e