Patient and Carer Experience of Nutrition Care Throughout and Beyond Treatment for Head and Neck Cancer: a Qualitative Longitudinal Study

Hiatt, Joanne; Young, Adrienne; Brown, Teresa; Banks, Merrilyn; Bauer, Judy

doi:10.21203/rs.3.rs-556570/v1

Cited by 4 publications

(4 citation statements)

References 5 publications

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“…This study identified that an online resource should offer information and support through a biopsychosocial lens. The biopsychosocial impact of oral cancer has previously been recognised (11,36,37,51), with evidence that being unprepared for some of the side-effects or challenges during and following treatment can exacerbate feelings of depression and anxiety (52). This is particularly evident in relation to key survivorship areas, such as social eating and drinking (36), speech (53) and intimacy (54).…”

Section: Discussionmentioning

confidence: 99%

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

Semple¹,

Kelly²,

Thompson³

et al. 2023

Front Oral Maxillofac Med

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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.

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Section: Discussionmentioning

confidence: 99%

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

Semple¹,

Kelly²,

Thompson³

et al. 2023

Front Oral Maxillofac Med

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“…However, it is acknowledged there are some limitations to this study. First, this study explored dyadic management based on individual patient and carer experiences as part of a larger study (Hiatt et al, 2021) and did not specifically recruit patient–carer dyads. While it is recognised that studies exploring separate patient and carer experiences contribute to dyadic science literature, they are not recognised as true dyadic studies as they can be limited in their ability to address the needs of both members of a dyad (Lyons & Lee, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…This study design was a qualitative longitudinal study using a deductive approach to qualitative analysis. It was undertaken as separate analysis of data collected as part of a larger study exploring patient and carer experiences of nutrition care throughout and beyond treatment for HNC using narrative interview methods (Hiatt et al, 2021). Interviews were conducted at four time points (prior to treatment commencing, and then at 2 weeks, 3 months and 12 months post‐treatment completion).…”

Section: Methodsmentioning

confidence: 99%

Exploring dyadic management of nutrition care throughout and beyond head and neck cancer treatment

Hiatt

Young

Brown

et al. 2021

Journal of Clinical Nursing

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Aims and Objectives:To identify how patients and carers collaborate to manage nutrition care throughout and beyond head and neck cancer (HNC) treatment as a step towards identifying changes to service delivery that are inclusive of the needs of the patient-carer dyad.Background: Research in the field of dyadic interventions in cancer care is emerging, and there has been little work exploring patient-carer dyad needs in the provision of nutrition care in HNC.Design: A qualitative study design was used.Methods: Narrative interviews were completed with 13 patients and 15 carers over a 12-month period (prior to treatment commencing, and 2 weeks, 3 months and 12 months post-treatment completion). Deductive analysis of interview transcripts was performed using directed content analysis guided by the Theory of Dyadic Illness Management (TDIM). COREQ guidelines were used.Results: Seven themes across four TDIM constructs were identified: (1) understanding and adapting to physical challenges impacting nutrition intake, (2) adjusting to emotional impact of changes to eating and drinking, (3) providing practical support, (4) intrapersonal characteristics, (5) interpersonal characteristics, (6) healthcare culture and (7) managing carer burnout. Conclusion:This study highlights the importance of healthcare professionals recognising the patient and carer dyad as a team to enhance engagement in nutrition care and to ensure that their physical and psychological support needs across the cancer continuum are met. Relevance to clinical practice:It is important that healthcare professionals understand information and support needs and preferences within patient-carer dyads prior to HNC treatment commencing and adapt care and interventions based on their changing needs throughout and beyond the treatment period.

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“…A qualitative inductive approach was adopted to explore carer experience of nutrition care following HNC treatment. This study is part of a larger qualitative study using narrative interviews to explore patient and carer experience of nutrition care at four time points from diagnosis through to 1-year post-treatment completion [15]. Interviews were conducted by the principal investigator (JH), a female clinical dietitian with 4 years of experience working in HNC.…”

Section: Methodsmentioning

confidence: 99%

A qualitative comparison of the nutrition care experiences of carers supporting patients with head and neck cancer throughout surgery and radiation treatment and survivorship

Hiatt

Young

Brown

et al. 2022

Support Care Cancer

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Purpose To understand and compare the nutrition care experiences of carers supporting patients throughout surgery and radiation treatment for head and neck cancer (HNC) to inform changes to service delivery in the inpatient and outpatient setting to ensure carers needs in their supportive role throughout the treatment and survivorship period are met. Methods As part of a larger study, narrative interviews were completed with fourteen carers of patients diagnosed with HNC at 2 weeks, 3 months and 12 months post-treatment completion. Reflexive thematic analysis was used to interpret and understand differences in carer experiences of nutrition care between surgery and radiation treatment. Results Two main themes across each treatment modality were identified: (1) access to information and support from healthcare professionals and (2) adjustment to the physical and psychological impact of treatment. Conclusion This study highlights the increasing need to ensure carers are included in the provision of nutrition information and support to patients throughout and beyond their treatment trajectory. Having structured support available to patients and carers throughout radiation treatment meant that carer needs were reduced. However, without the opportunity for structured support in the inpatient setting, many carers expressed high care needs in supporting patients in the post-surgical phase. Implications for cancer survivors Providing carers with access to structured support for nutrition care in the inpatient and outpatient setting can reduce their supportive care needs throughout the treatment and survivorship period.

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Patient and Carer Experience of Nutrition Care Throughout and Beyond Treatment for Head and Neck Cancer: a Qualitative Longitudinal Study

Cited by 4 publications

References 5 publications

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

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

Exploring dyadic management of nutrition care throughout and beyond head and neck cancer treatment

A qualitative comparison of the nutrition care experiences of carers supporting patients with head and neck cancer throughout surgery and radiation treatment and survivorship

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