Abstract
Introduction:
Multi-modality treatments for HNC (head and neck cancer) result in survivors experiencing life-altering, long-term biopsychosocial issues affecting quality of life (1). Availability of the internet has enabled HNC patients and family members (FMs) to increasingly access more information, exploring it at their own time and pace; promoting understanding and coping (2). Current websites provide minimal patient and family-centred information to promote shared decision-making and ensure preparedness for HNC treatments (3). FMs are pivotal support providers; playing an integral role in delivering care, support and guidance for HNC patients. This study aims to explore FMs perceptions surrounding the development of an online resource to inform decision-making and provide post-treatment support for patients with HNC and their relatives.
Methods:
A qualitative research design was adopted using semi-structured, one-to-one interviews in one healthcare trust. Reflexive thematic analysis (4) was applied to interpret FMs perceptions of developing an online resource.
Results:
Thirteen FMs were interviewed. Findings emerging from the data were developed into four themes: (1). Information needed to improve understanding of journey ahead, promote decision-making and coping; (2). FMs need information, knowledge and support to equip them for a new role as care provider; (3). FMs need information to enhance their coping and (4). FMs perceptions of important components to be included within an online resource.
Conclusion:
HNC FMs and patients require detailed information from reliable sources, to promote self-management, and coping from diagnosis to living with and beyond cancer. A blended approach is favourable to receiving information, enabling patients and FMs to access information when appropriate; reducing feelings of bombardment and isolation. FMs envisaged the use of patient narratives within an online resource would ultimately provide a clear and insightful real life picture. These findings have moved the body of evidence forward to support the co-design of a HNC online resource.
References:
1) 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.
2) 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
3) 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. Available at: https://doi.org/10.1007/s11764-022-01168-1 (Accessed 29th January 2022).
4) Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2020;18(3):328-352. https://doi.org/10.1080/14780887.2020.1769238
Multi-modality treatments for HNC (head and neck cancer) result in survivors experiencing life-altering, long-term biopsychosocial issues affecting quality of life (1). Availability of the internet has enabled HNC patients and family members (FMs) to increasingly access more information, exploring it at their own time and pace; promoting understanding and coping (2). Current websites provide minimal patient and family-centred information to promote shared decision-making and ensure preparedness for HNC treatments (3). FMs are pivotal support providers; playing an integral role in delivering care, support and guidance for HNC patients. This study aims to explore FMs perceptions surrounding the development of an online resource to inform decision-making and provide post-treatment support for patients with HNC and their relatives.
Methods:
A qualitative research design was adopted using semi-structured, one-to-one interviews in one healthcare trust. Reflexive thematic analysis (4) was applied to interpret FMs perceptions of developing an online resource.
Results:
Thirteen FMs were interviewed. Findings emerging from the data were developed into four themes: (1). Information needed to improve understanding of journey ahead, promote decision-making and coping; (2). FMs need information, knowledge and support to equip them for a new role as care provider; (3). FMs need information to enhance their coping and (4). FMs perceptions of important components to be included within an online resource.
Conclusion:
HNC FMs and patients require detailed information from reliable sources, to promote self-management, and coping from diagnosis to living with and beyond cancer. A blended approach is favourable to receiving information, enabling patients and FMs to access information when appropriate; reducing feelings of bombardment and isolation. FMs envisaged the use of patient narratives within an online resource would ultimately provide a clear and insightful real life picture. These findings have moved the body of evidence forward to support the co-design of a HNC online resource.
References:
1) 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.
2) 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
3) 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. Available at: https://doi.org/10.1007/s11764-022-01168-1 (Accessed 29th January 2022).
4) Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol. 2020;18(3):328-352. https://doi.org/10.1080/14780887.2020.1769238
| Original language | English |
|---|---|
| Publication status | Published (in print/issue) - 11 Nov 2022 |
Keywords
- head and neck cancer
- family members
- carers
- qualitative research
- online resource
