Skip to main content
Top
Published in: Dysphagia 4/2020

01-08-2020 | Care | Original Article

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

Authors: Martin Checklin, Jessica Bain, Lucy Bath, Kate Lethbridge

Published in: Dysphagia | Issue 4/2020

Login to get access

Abstract

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.
Appendix
Available only for authorised users
Literature
1.
go back to reference 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.CrossRef 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.CrossRef
2.
go back to reference 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.CrossRef 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.CrossRef
3.
go back to reference 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.CrossRef 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.CrossRef
4.
go back to reference 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.CrossRef 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.CrossRef
5.
go back to reference 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.CrossRef 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.CrossRef
6.
go back to reference 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.CrossRef 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.CrossRef
7.
go back to reference Sasaki CT, Leder SB. Comments on selected recent dysphagia literature. Dysphagia. 2015;30(4):482–7.CrossRef Sasaki CT, Leder SB. Comments on selected recent dysphagia literature. Dysphagia. 2015;30(4):482–7.CrossRef
8.
go back to reference 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.CrossRef 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.CrossRef
9.
go back to reference 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.CrossRef 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.CrossRef
10.
go back to reference Hanefeld J, Powell-Jackson T, Balabanova D. Understanding and measuring quality of care: dealing with complexity. Bull World Health Organ. 2017;95(5):368.CrossRef Hanefeld J, Powell-Jackson T, Balabanova D. Understanding and measuring quality of care: dealing with complexity. Bull World Health Organ. 2017;95(5):368.CrossRef
11.
go back to reference 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.CrossRef 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.CrossRef
12.
go back to reference 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.CrossRef 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.CrossRef
13.
go back to reference Chaplin JM, Morton RP. A prospective, longitudinal study of pain in head and neck cancer patients. Head Neck. 1999;21(6):531–7.CrossRef Chaplin JM, Morton RP. A prospective, longitudinal study of pain in head and neck cancer patients. Head Neck. 1999;21(6):531–7.CrossRef
14.
go back to reference 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.CrossRef 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.CrossRef
15.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
16.
go back to reference 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.CrossRef 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.CrossRef
17.
go back to reference 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.CrossRef 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.CrossRef
18.
go back to reference 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.CrossRef 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.CrossRef
19.
go back to reference 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.CrossRef 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.CrossRef
20.
go back to reference Simpson GK, et al. Does resilience mediate carer distress after head and neck cancer? Cancer Nurs. 2015;38(6):E30–E3636.CrossRef Simpson GK, et al. Does resilience mediate carer distress after head and neck cancer? Cancer Nurs. 2015;38(6):E30–E3636.CrossRef
21.
go back to reference 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.CrossRef 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.CrossRef
22.
go back to reference 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.CrossRef 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.CrossRef
23.
go back to reference McEwen SE, et al. Evaluation of a rehabilitation planning consult for survivors of head and neck cancer. Head Neck. 2018;40(7):1415–24.CrossRef McEwen SE, et al. Evaluation of a rehabilitation planning consult for survivors of head and neck cancer. Head Neck. 2018;40(7):1415–24.CrossRef
24.
go back to reference 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.CrossRef 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.CrossRef
25.
go back to reference 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.CrossRef 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.CrossRef
26.
go back to reference 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.CrossRef 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.CrossRef
Metadata
Title
Patients’ Perspectives on What Makes a Better Care Experience While Undergoing Treatment for Oropharyngeal Dysphagia Secondary to Head and Neck Cancer
Authors
Martin Checklin
Jessica Bain
Lucy Bath
Kate Lethbridge
Publication date
01-08-2020
Publisher
Springer US
Published in
Dysphagia / Issue 4/2020
Print ISSN: 0179-051X
Electronic ISSN: 1432-0460
DOI
https://doi.org/10.1007/s00455-019-10077-y

Other articles of this Issue 4/2020

Dysphagia 4/2020 Go to the issue