Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Cherith Semple, Rosie Kelly, Ruth Thompson, Peter Gordon

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Abstract

Background: The traditional, paternalistic, paradigm of healthcare delivery is no longer acceptable; with
transformation placing greater emphasis on shared-care and decision-making, centred on patients’ values,
needs and preferences. In this process, patients with cancer often assume a more active role in healthcare.
The internet has acted as a likely catalyst and, or facilitator in this process, with proliferation during the
global pandemic. Consequently, there has been an expansion of health information being accessed online by
patients. A recent scoping review indicated a lack of high-quality evidence-based online resources for head
and neck patients, with a paucity of end-user involvement during development. To inform the development
and co-design of a high-quality, acceptable online resource for oral cancer patients, aimed at facilitating
shared decision-making and treatment preparedness, patients’ and healthcare professionals’ (HCPs)
preferences have been elucidated in this study.
Methods: Qualitative research design using semi-structured interviews was employed with patients (n=10)
and three focus groups with HCPs (n=21) to understand their perceptions and preference on content, issues
to be addressed and key design elements of an online resource to promote decision-making and coping with
oral cancer and its treatment effects. Reflexive thematic analysis (TA) was used to analyse both data sets,
which were then triangulated.
Results: Three key themes were identified from triangulated TA: (I) key objectives and constructs to
underpin the online resource; (II) important content to incorporate within the online resource; and (III)
design preferences for the online resource. Participants indicated a preference for online content to be
mapped across the key landmarks of the cancer trajectory (at diagnosis, during and after treatment); with
tailoring and layering of information; presented through a biopsychosocial lens and incorporating patient
experience narratives, to aid contextualising of information.
Conclusions: This research highlights the need to co-produce online resources with key expert stakeholders,
integrating factual information alongside patients experience narratives. Incorporating patients’ narrative would
appear to be a beneficial source of information to contextualise patient experience, whilst empowering and educating
patients to become more proactive in decision-making, self-management and improving health outcomes.
Original languageEnglish
Pages (from-to)1-15
Number of pages15
JournalFrontiers of Oral and Maxillofacial Medicine
Early online date31 Oct 2022
DOIs
Publication statusPublished online - 31 Oct 2022

Bibliographical note

Funding: Macmillan Cancer Support, NI R&D Office,
South Eastern Health & Social Care

Keywords

  • Head and neck cancer
  • qualitative research
  • online resource
  • shared decision making
  • patient experience
  • patient narrative
  • patient experience narrative

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