Caregiver Burden, Psychological Distress and Quality of Life among Informal Caregivers of Patients with Head and Neck Cancer: A Longitudinal Study

Hof, Kira S. van; Hoesseini, Arta; Dorr, Maarten C.; Leeuw, Irma M. Verdonck‐de; Jansen, Femke; Leemans, C. René; Takes, Robert P.; Terhaard, Chris H.J.; Jong, Robert J. Baatenburg de; Sewnaik, Aniel; Offerman, Marinella P. J.

doi:10.3390/ijerph192316304

Cited by 9 publications

(9 citation statements)

References 57 publications

(96 reference statements)

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“…When addressing self-efficacy and coping style, special attention should be given to caregivers with higher age, females, and/or lower education, as these factors were associated with less self-efficacy and "active tackling." Providing psychological interventions is not only important for the caregivers themselves, but also for the HNC patients, as in a prior study we found that reduced functioning of informal caregivers was associated with reduced functioning of patients related to them [10]. In a review of Cheng et al, short-term effects of psychoeducational interventions were found on caregivers' psychological distress, quality of life, caregiver burden, and self-efficacy [49].…”

Section: Clinical Implications and Future Perspectivesmentioning

confidence: 57%

“…Also, high depression levels of caregivers may negatively influence patients quality of life (QoL) during long-term follow-up [10].To provide optimal support, insight into the way people deal with a certain situation is needed which can be divided in skills of self-efficacy and coping mechanisms. Self-efficacy has been defined as the confidence in your own ability to influence successful outcomes in challenging or stressful situations [11].…”

Section: Highlightsmentioning

confidence: 99%

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Self-efficacy and coping style in relation to psychological distress and quality of life in informal caregivers of patients with head and neck cancer: a longitudinal study

Hof

Hoesseini

Leeuw

et al. 2023

Support Care Cancer

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Objective In order to understand how informal caregivers of head and neck cancer (HNC) patients deal with the consequences of the disease, we investigated their self-efficacy and coping style in relation to symptoms of anxiety and depression (distress) and quality of life (QoL) over time. In addition, factors associated with self-efficacy and coping style were investigated. Methods A total of 222 informal caregivers and their related HNC patients were prospectively followed as part from the multicenter cohort NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). Self-efficacy and coping style were measured at baseline, and distress and QoL at baseline and 3, 6, 12, and 24 months after treatment. Results Informal caregivers had a high level of self-efficacy comparable with patients. Caregivers used “seeking social support,” “passive reacting,” and “expression of emotions” more often than patients. Factors associated with self-efficacy and coping were higher age and lower education. Higher self-efficacy was related with better QoL and “active tackling” was associated with less depression symptoms. “Passive reacting” and “expression of emotions” were associated with higher psychological distress and reduced QoL. Conclusion Among informal caregivers of HNC patients, higher self-efficacy and “active tackling” were associated with better functioning over time, while “passive reacting” and “expression of negative emotions” were associated with worse functioning. Awareness of the differences in self-efficacy skills and coping and their relationship with QoL and psychological distress will help clinicians to identify caregivers that may benefit from additional support that improve self-efficacy and “active tackling” and reduce negative coping styles.

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Section: Clinical Implications and Future Perspectivesmentioning

confidence: 57%

Section: Highlightsmentioning

confidence: 99%

Self-efficacy and coping style in relation to psychological distress and quality of life in informal caregivers of patients with head and neck cancer: a longitudinal study

Hof

Hoesseini

Leeuw

et al. 2023

Support Care Cancer

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“…Previous cross-sectional studies indicate that the unmet supportive care needs of caregivers of HNC patients can lead to an increased caregiver burden, emotional distress, and a reduced QoL [13,17]. The psychological distress felt by informal caregivers is related to the HNC patient's QoL and psychological distress [8,18]. Caregivers' unmet needs can undermine the support they can provide to the patient and may even lead to psychological or medical problems in the caregivers themselves [17].…”

Section: Introductionmentioning

confidence: 99%

“…Caregivers' unmet needs can undermine the support they can provide to the patient and may even lead to psychological or medical problems in the caregivers themselves [17]. The fact that unmet supportive care needs are related to psychological distress, and that informal caregivers' psychological distress is related to patients' functioning, underlines the importance of offering supportive care to caregivers [8,18]. Despite this, there is a lack of longitudinal long-term follow-up studies regarding the unmet needs of HNC caregivers [19,20].…”

Section: Introductionmentioning

confidence: 99%

Unmet supportive care needs among informal caregivers of patients with head and neck cancer in the first 2 years after diagnosis and treatment: a prospective cohort study

Hof

Hoesseini

Dorr

et al. 2023

Support Care Cancer

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Objective Informal caregivers of head and neck cancer (HNC) patients have a high caregiver burden and often face complex practical caregiving tasks. This may result in unmet supportive care needs, which can impact their quality of life (QoL) and cause psychological distress. In this study, we identify caregivers’ unmet needs during long-term follow-up and identify caregivers prone to unmet supportive care needs. Methods Data were used from the multicenter prospective cohort study NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). The unmet supportive care needs, psychological distress, caregiver burden, and QoL were measured for 234 informal caregivers and their related patients at baseline, 3, 6, 12, and 24 months after. Mixed effect models for repeated measurements were used. Results At baseline, most caregivers (70.3%) reported at least one unmet supportive care need, with most of the identified needs in the “healthcare & illness” domain. During the follow-up period, caregivers’ unmet needs decreased significantly in all domains. Nevertheless, 2 years after treatment, 28.3% were still reporting at least one unmet need. Financial problems were increasingly associated with unmet needs over time. Furthermore, caring for a patient who themselves had many unmet needs, an advanced tumor stage, or severe comorbidity was associated with significantly more unmet needs in caregivers. Conclusions The current study shows the strong likelihood of caregivers of HNC patients facing unmet supportive care needs and the interaction between the needs of patients and caregivers. It is important to optimally support informal caregivers by involving them from the start when counseling patients, by providing them with relevant and understandable information, and by referring vulnerable caregivers for (psychosocial) support.

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“… 6 According to multisystem theory, patients are not independent individuals but are part of a system of interaction with their informal caregivers. 7 FCs are companions, children or close friends who have a significant personal relationship with the patient, all of whom provide a broad range of assistance for the person with a chronic or disabling condition, such as HNC. 8 Caregivers, as well as patients, may be adversely affected by cancer, and patients with cancer rely on the emotional, physical and financial support of their caregivers.…”

Section: Introductionmentioning

confidence: 99%

Psychological Burden of Patients with Head and Neck Cancer Undergoing Radiotherapy and Their Family Caregivers: A Cross-Sectional Survey

Tang¹,

Hua²,

Huang³

et al. 2023

JMDH

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The consequences of Head and neck cancer (HNC) affect both the person who receives the diagnosis and their family caregivers (FCs). Objective: To investigate the psychological status of patients and their FCs, and the burden of the FCs during radiotherapy. Methods: This cross-sectional study was conducted with a questionnaire survey by convenience sampling method. Patients with HNC and their caregivers (both N = 85) from the radiotherapy department of our hospital were recruited between March 2021 and March 2022. The Hospital Anxiety and Depression Scale (HADS), the Chinese version of the Connor and Davidson Resilience Scale (CD-RISC), and the Zarit Burden Interview (ZBI) were used to assess the symptoms of anxiety and depression, psychological resilience, and the impact of care work, emotions and social lives of participants. Pearson's correlation analysis and a Mann-Whitney test were used to analyse the association between the HADS and the CD-RISC scores of the patients. Results: About half of the patients (56.47%) and the caregivers (62.35%) have had anxiety. The average HADS-Anxiety scores, HADS-Depression scores, and CD-RISC scores of the patients with HNC were 7.4±1.9, 6.4±2.2, and 56.8±12.6. The "Strength" and "Resilience" scores of the patients were inversely related to their HADS anxiety scores (p < 0.05). The "Resilience" and "optimism" scores of them were inversely related to HADS depression scores (p < 0.05). The average ZBI score of the caregivers was 23.8±10.1; HADS anxiety scores and HADS depression scores of the caregivers were positively associated with total ZBI scores and individual burden scores (p < 0.05). Conclusion: More than half of patients with HNC undergoing radiotherapy have anxiety, and about a third have depression. The anxiety and depression status of the FCs of patients with HNC undergoing radiotherapy is related to caregiver burden, deserving the attention of clinical medical staff.

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Caregiver Burden, Psychological Distress and Quality of Life among Informal Caregivers of Patients with Head and Neck Cancer: A Longitudinal Study

Cited by 9 publications

References 57 publications

Self-efficacy and coping style in relation to psychological distress and quality of life in informal caregivers of patients with head and neck cancer: a longitudinal study

Self-efficacy and coping style in relation to psychological distress and quality of life in informal caregivers of patients with head and neck cancer: a longitudinal study

Unmet supportive care needs among informal caregivers of patients with head and neck cancer in the first 2 years after diagnosis and treatment: a prospective cohort study

Psychological Burden of Patients with Head and Neck Cancer Undergoing Radiotherapy and Their Family Caregivers: A Cross-Sectional Survey

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