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A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals' Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer

Mayland, CR; Doughty, HC; Rogers, SN; Gola, A; Mason, S; Hubbert, C; Macareavy, D; (2020) A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals' Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer. Journal of Palliative Care 10.1177/0825859720957817. (In press). Green open access

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Abstract

OBJECTIVES: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care. METHODS: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi's framework, was used to analyze the data. RESULTS: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: "lack of consensus about timing of Specialist Palliative Care engagement" and "high stake decisions with uncertainty about treatment outcome." The main barrier identified by patients and family carers was "lack of preparedness when transitioning from curable to incurable disease." There were 2 overlapping themes from both groups: "uncertainty about meeting psychological needs" and "misconceptions of palliative care." CONCLUSIONS: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.

Type: Article
Title: A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals' Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/0825859720957817
Publisher version: https://doi.org/10.1177/0825859720957817
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: end-of-life care, head and neck cancer, integrated care, palliative care, qualitative research
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10110505
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