pp 1–15 | Cite as

Patients’ Perspectives on What Makes a Better Care Experience While Undergoing Treatment for Oropharyngeal Dysphagia Secondary to Head and Neck Cancer

  • Martin ChecklinEmail author
  • Jessica Bain
  • Lucy Bath
  • Kate Lethbridge
Original Article


Patients’ perceptions on what makes a better care experience for head and neck cancer (HNca) have not been widely sought. Patients’ perceptions can play a crucial role in shaping quality care and client involvement. To investigate patients’ perspectives on what makes a better care experience while undergoing rehabilitation for oropharyngeal dysphagia secondary to HNca. Qualitative data were collected in the form of semi-structured interviews from eight patients after they had undergone rehabilitation for HNca. The data were thematically analysed by two researchers independently. Six themes, plus subthemes, were identified. These themes were Supportive network is essential; Reassurance from staff professionalism; Access to service; Using own motivation and resilience; Receiving the right information and Ongoing shock and adjustment. Results are discussed in context of the literature and clinical implications and future research are recommended. Collation of patients’ perspectives is valuable to increase insight into what makes a better rehabilitative journey for patients with HNca. Rehabilitation that is holistic, specialised and patient-specific is highly valued by patients with HNca.


Patients’ perspectives Rehabilitation Dysphagia Head and neck cancer Oncology Deglutition and deglutition disorders 



This research was supported by a clinician research grant awarded by Speech Pathology Australia in 2016 (award title: Clinician Research Grant, 2016). Thank you to our participants for sharing their experiences. We would also like to thank Margaret Mealings for sharing her interviewing expertise.

Compliance with Ethical Standards

Conflict of interest

Authors Martin Checklin, Jessica Bain and Lucy Bath report no conflict of interests. Kate Lethbridge received a research grant from Speech Pathology Australia to conduct this work (Award Title: Clinician Research Grant, 2016) and has no further conflicts of interest. The authors alone are responsible for producing this paper.

Ethical Approval

The study was completed in accordance with the ethical standards of the local institutional ethics committee (Epworth Healthcare, Ethics Number EH2017-189) and with the 1964 Helsinki declaration. This research was supported by a clinician research grant awarded by Speech Pathology Australia in 2016 (Award Title: Clinician Research Grant, 2016) to Ms Kate Lethbridge.

Informed Consent

Informed consent was obtained from all participants.


  1. 1.
    Larsson M, Hedelin B, Athlin E. Lived experiences of eating problems for patients with head and neck cancer during radiotherapy. J Clin Nurs. 2003;12(4):562–70.CrossRefGoogle Scholar
  2. 2.
    Ganzer H, et al. The eating experience after treatment for head and neck cancer: a review of the literature. Oral Oncol. 2015;51(7):634–42.CrossRefGoogle Scholar
  3. 3.
    Lang H, et al. The psychological experience of living with head and neck cancer: a systematic review and meta-synthesis. Psycho Oncol. 2013;22(12):2648–63.CrossRefGoogle Scholar
  4. 4.
    Nund RL, et al. Communication changes following non-glottic head and neck cancer management: The perspectives of survivors and carers. Int J Speech Lang Pathol. 2015;17(3):263–72.CrossRefGoogle Scholar
  5. 5.
    Ottosson S, Laurell G, Olsson C. The experience of food, eating and meals following radiotherapy for head and neck cancer: a qualitative study. J Clin Nurs. 2013;22(7–8):1034–43.CrossRefGoogle Scholar
  6. 6.
    McQuestion M, Fitch M, Howell D. 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(2):145–51.CrossRefGoogle Scholar
  7. 7.
    Sasaki CT, Leder SB. Comments on selected recent dysphagia literature. Dysphagia. 2015;30(4):482–7.CrossRefGoogle Scholar
  8. 8.
    Messing BP, et al. Establishing a multidisciplinary head and neck clinical pathway: an implementation evaluation and audit of dysphagia-related services and outcomes. Dysphagia. 2019;34(1):89–104.CrossRefGoogle Scholar
  9. 9.
    Cousins N, et al. A systematic review of interventions for eating and drinking problems following treatment for head and neck cancer suggests a need to look beyond swallowing and trismus. Oral Oncol. 2013;49(5):387–400.CrossRefGoogle Scholar
  10. 10.
    Hanefeld J, Powell-Jackson T, Balabanova D. Understanding and measuring quality of care: dealing with complexity. Bull World Health Organ. 2017;95(5):368.CrossRefGoogle Scholar
  11. 11.
    Lebel S, et al. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho Oncol. 2013;22(1):140–52.CrossRefGoogle Scholar
  12. 12.
    Hadjieva T, et al. Treatment of oral mucositis pain following radiation therapy for head-and-neck cancer using a bioadhesive barrier-forming lipid solution. Support Care Cancer. 2014;22(6):1557–622.CrossRefGoogle Scholar
  13. 13.
    Chaplin JM, Morton RP. A prospective, longitudinal study of pain in head and neck cancer patients. Head Neck. 1999;21(6):531–7.CrossRefGoogle Scholar
  14. 14.
    De Boer MF, et al. Physical and psychosocial correlates of head and neck cancer: a review of the literature. Otolaryngol Head Neck Surg. 1999;120(3):427–36.CrossRefGoogle Scholar
  15. 15.
    Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRefGoogle Scholar
  16. 16.
    Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.CrossRefGoogle Scholar
  17. 17.
    Jacobson MC. The experience of head and neck cancer survivorship (including laryngectomy): an integrated biopsychosocial model. Curr Opin Supp Palliat Care. 2018;12(1):65–73.CrossRefGoogle Scholar
  18. 18.
    Bressan V, et al. The life experience of nutrition impact symptoms during treatment for head and neck cancer patients: a systematic review and meta-synthesis. Support Care Cancer. 2017;25(5):1699–712.CrossRefGoogle Scholar
  19. 19.
    Vakharia KT, Ali MJ, Wang SJ. Quality-of-life impact of participation in a head and neck cancer support group. Otolaryngol Head Neck Surg. 2007;136(3):405–10.CrossRefGoogle Scholar
  20. 20.
    Simpson GK, et al. Does resilience mediate carer distress after head and neck cancer? Cancer Nurs. 2015;38(6):E30–E3636.CrossRefGoogle Scholar
  21. 21.
    Brockbank S, et al. Pretreatment information on dysphagia: exploring the views of head and neck cancer patients. J Pain Symptom Manag. 2015;49(1):89–97.CrossRefGoogle Scholar
  22. 22.
    Nund RL, et al. The lived experience of dysphagia following non-surgical treatment for head and neck cancer. Int J Speech Lang Pathol. 2014;16(3):282–9.CrossRefGoogle Scholar
  23. 23.
    McEwen SE, et al. Evaluation of a rehabilitation planning consult for survivors of head and neck cancer. Head Neck. 2018;40(7):1415–24.CrossRefGoogle Scholar
  24. 24.
    Schmidt KN, et al. Validation of the head and neck patient symptom checklist as a nutrition impact symptom assessment tool for head and neck cancer patients. Support Care Cancer. 2013;21(1):27–34.CrossRefGoogle Scholar
  25. 25.
    Constantinescu G, et al. Patient perception of speech outcomes: the relationship between clinical measures and self-perception of speech function following surgical treatment for oral cancer. Am J Speech Lang Pathol. 2017;26(2):241–7.CrossRefGoogle Scholar
  26. 26.
    Kubrak C, Olson K, Baracos VE. The head and neck symptom checklist©: an instrument to evaluate nutrition impact symptoms effect on energy intake and weight loss. Support Care Cancer. 2013;21(11):3127–36.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Speech Pathology and Dietetics, Epworth Rehabilitation and Mental HealthEpworth HealthcareRichmondAustralia

Personalised recommendations