Distress in long‐term head and neck cancer carers: a qualitative study of carers' perspectives

Balfe, Myles; Maguire, Rebecca; Hanly, Paul; Butow, Phyllis; O’Sullivan, Eleanor; Timmons, Aileen; Gooberman‐Hill, Rachael; Sharp, Linda

doi:10.1111/jocn.13242

Cited by 21 publications

(43 citation statements)

References 44 publications

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“…Therefore, large-scale studies are needed to ensure sufficient power for subgroup analysis. The involvement of family or significant others, as occurred in this study, is important because they also suffer from distress (Balfe et al, 2016). In addition, their support is important to the recovery of patients (Taneja, 2013).…”

Section: Implications For Researchmentioning

confidence: 76%

A Distress Thermometer Intervention for Patients With Head and Neck Cancer

Meulen

May

Koole

et al. 2018

ONF

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Section: Implications For Researchmentioning

confidence: 76%

A Distress Thermometer Intervention for Patients With Head and Neck Cancer

Meulen

May

Koole

et al. 2018

ONF

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“…Psychological distress has previously been noted to increase during the course of radiation therapy and to correlate with patient symptom burden. Patient behavior such as alcohol or tobacco use, as well as financial distress, may also negatively affect caregiver well‐being . The role of caregiving tasks, however, has been underexplored.…”

Section: Introductionmentioning

confidence: 99%

Impact of patient symptoms and caregiving tasks on psychological distress in caregivers for head and neck cancer (HNC)

et al. 2019

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Objective To determine the association of caregiving task burden and patient symptom burden with psychological distress among caregivers of head and neck cancer (HNC) patients. Methods Adults with HNC and their primary caregivers were included. Patient symptom burden was assessed with the Vanderbilt Head and Neck Symptom Survey‐2.0. Caregiving task burden was quantified as task number and task difficulty/distress using the HNC Caregiving Task Inventory. Psychological distress was measured with the Profile of Mood States—Short Form. Two‐step clustering analysis was conducted for patient symptom burden, caregiving task burden, and psychological distress. Associations of the resultant clusters of task burden and patient symptoms with caregiver distress were tested using logistic regressions. Results Eighty‐nine HNC caregivers and 84 patients were included. Among patients, two clusters of symptom burden were found (51% mod‐high, 49% low). Among caregivers, two clusters of caregiving task burden (40% mod‐high, 60% low) and caregiver psychological distress (40% mod‐high, 60% low) were found. Caregivers with mod‐high task numbers and task difficulty/distress reported higher levels of psychological distress. After controlling for caregiver number of tasks, respective difficulty/distress, and patient symptom burden, caregiver perceived task difficulty/distress had the strongest association with caregiver psychological distress (adjusted OR = 3.83; 95% CI, 1.0‐14.64; P = 0.049). Conclusions Psychological distress in HNC caregivers is associated with caregiving task burden, with caregivers experiencing high task difficulty/distress at greatest risk. Further study of the caregiver and task characteristics leading to psychological distress should inform supportive interventions for HNC patients and caregivers.

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“…Loss of self is often posited in relation to chronic illness and relates to an erosion of self‐identity stemming from restrictions in function related to the illness (Balfe et al., ).…”

Section: Introductionmentioning

confidence: 99%