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

被引:0
作者
Semple, Cherith J. [1 ,2 ,3 ]
Kelly, Rosemary [1 ]
Thompson, Ruth [2 ]
Gordon, Peter [2 ]
机构
[1] Ulster Univ, Inst Nursing & Hlth Res, Sch Nursing, Belfast, North Ireland
[2] Ulster Hosp, Canc Serv, South Eastern Hlth & Social Care Trust, Belfast, North Ireland
[3] Ulster Univ, South Eastern Hlth & Social Care Trust, York St, Belfast BT15 1ED, North Ireland
来源
FRONTIERS OF ORAL AND MAXILLOFACIAL MEDICINE | 2023年 / 5卷
关键词
Head and neck cancer (HNC); qualitative research; online resource; shared decision-making; patient experience narrative; HEAD; INFORMATION; INTERVIEWS; TELEPHONE; DISTRESS; CRITERIA;
D O I
10.21037/fomm-22-1
中图分类号
R78 [口腔科学];
学科分类号
1003 ;
摘要
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.
引用
收藏
页数:15
相关论文
共 63 条
  • [1] Literacy disparities in patient access and health-related use of Internet and mobile technologies
    Bailey, Stacy C.
    O'Conor, Rachel
    Bojarski, Elizabeth A.
    Mullen, Rebecca
    Patzer, Rachel E.
    Vicencio, Daniel
    Jacobson, Kara L.
    Parker, Ruth M.
    Wolf, Michael S.
    [J]. HEALTH EXPECTATIONS, 2015, 18 (06) : 3079 - 3087
  • [2] Quality of online otolaryngology health information
    Biggs, T. C.
    Jayakody, N.
    Best, K.
    King, E. V.
    [J]. JOURNAL OF LARYNGOLOGY AND OTOLOGY, 2018, 132 (06) : 560 - 563
  • [3] Adapting and usability testing of an eLearning resource to enhance healthcare professional provision of sexual support across cancer care
    Bingham, Sharon Linsey
    Semple, Cherith Jane
    Flannagan, Carrie
    Dunwoody, Lynn
    [J]. SUPPORTIVE CARE IN CANCER, 2022, 30 (04) : 3541 - 3551
  • [4] Initial psychometric testing of the Head and Neck Cancer Patient Self-Management Inventory (HNC-PSMI)
    Bond, Stewart M.
    Schumacher, Karen
    Dietrich, Mary S.
    Wells, Nancy
    Militsakh, Oleg
    Murphy, Barbara A.
    [J]. EUROPEAN JOURNAL OF ONCOLOGY NURSING, 2020, 47
  • [5] Using experience-based co-design to improve the pre-treatment care pathway for people diagnosed with head and neck cancer
    Brady, Grainne C.
    Goodrich, Joanna
    Roe, Justin W. G.
    [J]. SUPPORTIVE CARE IN CANCER, 2020, 28 (02) : 739 - 745
  • [6] One size fits all? What counts as quality practice in (reflexive) thematic analysis?
    Braun, Virginia
    Clarke, Victoria
    [J]. QUALITATIVE RESEARCH IN PSYCHOLOGY, 2021, 18 (03) : 328 - 352
  • [7] Brebach R, 2016, PSYCHO-ONCOLOGY, V25, P882, DOI 10.1002/pon.4099
  • [8] Pretreatment Information on Dysphagia: Exploring the Views of Head and Neck Cancer Patients
    Brockbank, Sally
    Miller, Nicholas
    Owen, Sarah
    Patterson, Joanne M.
    [J]. JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2015, 49 (01) : 90 - 98
  • [9] Effectiveness of Two Web-Based Interventions for Chronic Cancer-Related Fatigue Compared to an Active Control Condition: Results of the "Fitter na kanker" Randomized Controlled Trial
    Bruggeman-Everts, Fieke Z.
    Wolvers, Marije D. J.
    van de Schoot, Rens
    Vollenbroek-Hutten, Miriam M. R.
    Van der Lee, Marije L.
    [J]. JOURNAL OF MEDICAL INTERNET RESEARCH, 2017, 19 (10)
  • [10] AN ANALYSIS OF THE QUALITY OF THYROID CANCER WEBSITES
    Chang, Kimberley L.
    Grubbs, Elizabeth G.
    Ingledew, Paris-Ann
    [J]. ENDOCRINE PRACTICE, 2019, 25 (10) : 1003 - 1011