McKeever, Angela

Semple, Cherith

English

Ulster University's Research Portal

                      Exploration of family members perceptions of an online resource to provideinformation and support for patients with head and neck cancer and their informalcarerSemple, C., & McKeever, A. (2024). Exploration of family members perceptions of an online resource to provideinformation and support for patients with head and neck cancer and their informal carer. Poster sessionpresented at 6th Nordic Conference in Family Health and Care, Odense, Denmark.Link to publication record in Ulster University Research PortalPublication Status:Published (in print/issue): 23/05/2024Document VersionOther versionGeneral rightsCopyright for the publications made accessible via Ulster University's Research Portal is retained by the author(s) and / or other copyrightowners and it is a condition of accessing these publications that users recognise and abide by the legal requirements associated with theserights.Take down policyThe Research Portal is Ulster University's institutional repository that provides access to Ulster's research outputs. Every effort has beenmade to ensure that content in the Research Portal does not infringe any person's rights, or applicable UK laws. If you discover content inthe Research Portal that you believe breaches copyright or violates any law, please contact pure-support@ulster.ac.uk.Download date: 14/07/2024DiscussionAt diagnosis, FMs desire realistic information on post-treatment expectations and prognosis to support patient decision-making. An online resource should include HNC specific information, addressing eating & drinking problems and body image.  Patient and FM video narratives were advocated to encapsulate real-life experience. FMs experience significant levels of distress and guilt, indicating a need for psychological support to be embedded within an online resource.ConclusionAn online resource should be co-designed with patients and FMs, informed through a biopsychosocial lens.  Integrating patient and FM video narratives would help contextualise information, enhance understanding, promote preparedness for treatment and encourage self-management.IntroductionMulti-modality treatment for head and neck cancer (HNC) results in survivors experiencing life-altering, long-term biopsychosocial issues affecting quality of life (Crowder et al 2021). Family members (FMs) are pivotal support providers; playing an integral role in delivering care, support and guidance for HNC patients. Availability of the internet has enabled HNC patients and FMs to increasingly access more information, exploring it at their own time and pace; promoting understanding and coping (Hesse et al 2016). Current websites provide minimal patient and family-centred information to promote shared decision-making and ensure preparedness for HNC treatments (Kelly et al 2022).Aims of the studyTo explore FMs’ perceptions of how an online resource could inform decision-making and provide post-treatment support for patients with HNC cancer and their relatives.MethodsResearch designA qualitative research design was employed, using semi-structured one-to-one interviews between March-May 2022. This study was underpinned by Engel’s (1977) biopsychosocial model.Data collection A topic guide informed by literature and developed by research steering group, guided one-to-one interviews (zoom n=3,  telephone n=10).  Interviews were digitally recorded and transcribed verbatim. Reflective notes were taken.Data analysisUsing reflexive thematic analysis (Braun and Clarke, 2020), data were initially coded.  Then utilising a mind mapping technique, themes were generated and refined during team discussion.ResultsA total of 13 participants were recruited, with the following sample characteristics:Age range = 36 - 73yrs oldGender = 10 female, 3 maleRelationship to patient = 9 spouses / 4 daughtersPrimary treatment = Surgery 12 / radiotherapy (XRT) 1Adjuvant treatment = Chemo/XRT 9Prof Cherith J. Semple & Angela McKeeverCan an online resource meet the unique needs of head and neck cancer patients and their relatives: the family members perspectiveReferences:Crowder, SL., Najam, M., Sarma, KP., Fiese, BH., and Arthur, AE. (2021) Quality of life, coping strategies, and supportive care needs in head and neck cancer survivors: a qualitative study. Support Care Cancer. 29 (8), 4349-4356. Hesse BW, Greenberg AJ, Rutten LJF (2016) The role of Internet resources in clinical oncology: promises and challenges. Nat Rev Clin Oncol 13:767–776 Kelly, R., Gordon, P., Thompson, R. and Semple, C. (2022) Availability and use of web-based interventions for patients with head and neck cancer: a scoping review. Journal of Cancer Survivorship. : https://doi.org/10.1007/s11764-022-01168-1Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2020;18(3):328-352.4 key findings from family members data:@cancer_care_uuc.semple@ulster.ac.ukNeed for psychological supportOften the forgotten voice BUT need information for caregiving rolePerceive information often inadequate & seeking information from internetFMs desire credible online resource to augment information received at face-to-face consultationsComponents within an online resourceBiopsychosocial contentPsychological support

Exploration of family members perceptions of an online resource to provide information and support for patients with head and neck cancer and their informal carer

https://pure.ulster.ac.uk/files/203431243/Nordic_Conference_Poster_HNC_Online_Resource.pdf

Exploration of family members perceptions of an online resource to provide information and support for patients with head and neck cancer and their informal carer

Abstract

Similar works

Full text

Available Versions

Ulster University's Research Portal