Highlights
- •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 expectations.
- •Attempts to exercise control over their lives include coping strategies, watchful living, planning for future, and being health advocates.
Abstract
Purpose
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.
Methods
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.
Findings
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.
Conclusions
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.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to European Journal of Oncology NursingAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Effects of health belief and cancer fatalism on the practice of breast cancer screening among Nigerian women.Mammogr. Rec. Adv. 2012; : 71-88
- Berlin: ATLAS.Ti Cloud, Version 9.0.2021 ([computer software])
- A Realist Theory of Science.Brighton, Harvester1978
- Using thematic analysis in psychology.Qual. Res. Psychol. 2006; 3: 77-101
- Long ago it was meant to be: the interplay between time, construal, and fate beliefs.Pers. Soc. Psychol. Bull. 2006; 32: 1050-1058
- The changing face of phenomenological research: traditional and American phenomenology in nursing.Qual. Health Res. 2000; 10: 366-377
- Transforming research: engaging patient advocates at all stages of cancer research.Ann. Transl. Med. 2018; 6
- Assessing symptom distress in cancer patients: the Md Anderson Symptom Inventory.Cancer: Interdiscip. Int. J. Am. Cancer Soc. 2000; 89: 1634-1646
- The changing epidemiology of oral cancer: definitions, trends, and risk factors.Br. Dent. J. 2018; 225: 867-873
- Qualitative Inquiry and Research Design: Choosing Among Five Approaches.Sage publications, 2016
- Evaluation of quality of life in patients with oral cancer after mandibular resection: comparing no reconstruction, reconstruction with plate, and reconstruction with flap.Medicine (Baltim.). 2019; 98e17431
- Perceived symptom experience in head and neck cancer patients with lymphedema.J. Palliat. Med. 2016; 19: 1267-1274
- Symptom clusters and their effect on the functional status of patients with cancer.Oncol. Nurs. Forum. 2001; 28: 465-470
- Patients' experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study.Support. Care Cancer. 2016; 24: 1373-1386
- Cancer incidence and mortality worldwide: sources, methods and major patterns in Globocan 2012.Int. J. Cancer. 2015; 136: E359-E386
- Hospital based quality of life in oral cancer surgery.Cancers. 2020; 12: 2152
- Status and strategies for the management of head and neck cancer during COVID‐19 pandemic: Indian Scenario.Head Neck. 2020; 42: 1460-1465
- Changing Trends in oral cancer-a global scenario.Nepal J. Epidemiol. 2016; 6: 613
- The Redcap consortium: building an international community of software platform partners.J. Biomed. Inf. 2019; 95103208
- Relationships among hope, psychological well-being and health-related quality of life in childhood cancer survivors.J. Health Psychol. 2021; 26: 1528-1537
- Peer support interventions for breast cancer patients: a systematic review.Breast Cancer Res. Treat. 2019; 174: 325-341
- Study on the effect of peer education on anxiety and depression of ostomy patients.in: Proceedings of the 4th International Conference on Medical and Health Informatics. 2020: 132-135
- Symptom clusters: concept analysis and clinical implications for cancer nursing.Cancer Nurs. 2005; 28: 270-282
- The psychological experience of living with head and neck cancer: a systematic review and meta‐synthesis.Psycho Oncol. 2013; 22: 2648-2663
- Lived experiences of eating problems for patients with head and neck cancer during radiotherapy.J. Clin. Nurs. 2003; 12: 562-570
- Social axioms: the search for universal dimensions of general beliefs about how the world functions.J. Cross Cult. Psychol. 2002; 33: 286-302
- Effects of social support, hope and resilience on quality of life among Chinese bladder cancer patients: a cross-sectional study.Health Qual. Life Outcome. 2016; 14: 1-9
- Naturalistic Inquiry.Sage Publications, Newbury Park, Calif1985
- Symptom Experience in Patients with Gynecological Cancers: the Development of Symptom Clusters through Patient Narratives.J. Support Oncol. 2011; 9: 64-71
- Harrison's Principles of Internal Medicine.Mcgraw-Hill Education, Newyork2015
- Use of active surveillance or watchful waiting for low-risk prostate cancer and management trends across risk groups in the United States, 2010-2015.JAMA. 2019; 321: 704-706
- Sample size in qualitative interview studies: guided by information power.Qual. Health Res. 2016; 26: 1753-1760
- Distinct Dysphagia Profiles in Patients with Oral Cancer after Surgery.Oncol. Nursing Forum. 2022; (in press)
- Symptom clusters in head and neck cancer: a systematic review and conceptual model.Semin. Oncol. Nurs. 2021; 37151215
- The changed meaning of food: physical, social and emotional loss for patients having received radiation treatment for head and neck cancer.Eur. J. Oncol. Nurs. 2011; 15: 145-151
- Advancing symptom science through symptom cluster research: expert panel proceedings and recommendations.J. Nat. Cancer Inst. 2017; 109: djw253
- Symptom experience and regaining normality in the first year following a diagnosis of head and neck cancer: a qualitative longitudinal study.Palliat. Support Care. 2012; 10: 197-204
- Critical analysis of strategies for determining rigor in qualitative inquiry.Qual. Health Res. 2015; 25: 1212-1222
- Standards for reporting qualitative research: a synthesis of recommendations.Acad. Med. 2014; 89: 1245-1251
- A qualitative study investigating chemotherapy-induced nausea as a symptom cluster.Support. Care Cancer. 2014; 22: 2749-2756
- Prayer and faith: spiritual coping among American Indian women cancer survivors.Health Soc. Work. 2018; 43: 185-192
- The uncanny mouth—a phenomenological approach to oral cancer.Patient Educ. Counsel. 2007; 67: 301-306
- Measuring head and neck cancer symptom burden: the development and validation of the Md Anderson symptom inventory, head and neck module.Head Neck. 2007; 29: 923-931
- The Md Anderson symptom inventory–head and neck module, a patient-reported outcome instrument, accurately predicts the severity of radiation-induced mucositis.Int. J. Radiat. Oncol. Biol. Phys. 2008; 72: 1355-1361
- The experience of symptom cluster and symptom alleviation self-care in patients with head and neck cancer: a qualitative study.Jurnal Keperawatan Padjadjaran. 2019; 7
- Epidemiologic Aspects of Oral Cancer.Disease-a-Month, 2020100988
- Saturation in qualitative research: exploring its conceptualization and operationalization.Qual. Quantity. 2018; 52: 1893-1907
- Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries.CA Cancer J. 2021; 71: 209-249
- Impact of oral cancer on quality of life.Oral Cancer Issue Dent. Clin. N. Am. 2017; 62: 143-154
- Does believing in fate facilitate active or avoidant coping? The effects of fate control on coping strategies and mental well-being.Int. J. Environ. Res. Publ. Health. 2020; 17: 6383
- Late systemic symptoms in head and neck cancer survivors.Support. Care Cancer. 2019; 27: 2893-2902
Article info
Publication history
Published online: December 19, 2022
Accepted:
December 15,
2022
Received in revised form:
December 8,
2022
Received:
July 23,
2022
Identification
Copyright
© 2022 Elsevier Ltd. All rights reserved.
