Head and neck cancer (HNC) caregivers are especially vulnerable to poor outcomes because the HNC patients are at high risk for physical and functional impairments. This study examines contextual and stress process variables potentially associated with HNC caregivers' physical and psychological well-being. Patient-caregiver variables included socio-demographics, primary stressors (caregiving, patient clinical characteristics, HNC-related symptoms/dysfunction), secondary stressors (caregiver employment, childcare responsibilities and sleep duration <7 hr), appraisal, and response (physical activity). General linear models modeled caregiver well-being, along with depression and anxiety. A total of 33 patient-caregiver dyads were included. Most caregivers were female (81.8%) and patient spouses/partners (72.7%). Factors significantly associated with better caregiver physical well-being included caregiver older age, <2 comorbidities, ≥7 hr of sleep, ≥3 days/week physical activity, and patient swallowing and speech dysfunction. Factors significantly associated with better caregiver mental health functioning were less patient social dysfunction and less perceived caregiving burden. Short nighttime sleep, higher caregiver burden, and <3 days/week physical activity were also significantly related to caregivers' depression and anxiety. Results suggested caregiver behaviors and perceived burden, along with patient HNC concerns are linked with caregiver well-being. These behavioral, cognitive, and patient factors should be incorporated into caregiver screening tools or targeted with behavioral interventions to improve caregiver well-being.
Objective The purpose of this pilot study was to (1) obtain preliminary data on changes in burden and quality of life in head and neck cancer caregivers during and shortly following patient radiotherapy, (2) assess the relationship between perceived social support and burden as well as perceived social support and quality of life in caregivers during radiotherapy, and (3) identify preferences for sources of support among caregivers during radiotherapy. Methods Caregivers completed burden and quality of life instruments at the start of patient radiotherapy (T1), 5 weeks into radiotherapy (T2), and 1 month post-radiotherapy (T3) and instruments for perceived social support and support preferences at T2 only. Results Caregivers showed a trend toward increased burden and worsened quality of life for the majority of subscales at T2 or T3 than at T1. Caregivers reported significantly lower esteem and significantly greater disruption at T2 than at T1 and significantly worse health at T3 than at T2. Higher perceived social support was typically associated with lower burden and higher quality of life at T2. Spouses/partners were the most commonly preferred source of support. Discussion These pilot findings suggest that caregivers experience psychosocial impairments during and shortly after patient radiotherapy, but more research using larger samples is warranted.
Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/ exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.
Background Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. Methods In‐depth concept elicitation interviews were conducted with a purposive‐selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Results Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost “ripple effects”; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long‐lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Conclusions Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient‐reported measure of financial burden among AYA cancer survivors.
The meta-analytic results failed to demonstrate a positive effect on anxiety among adult cancer patients in treatment but may in part be attributed to the small sample size. These findings are in contrast to a prior meta-analysis that analyzed all studies regardless of methodological rigor. More research is needed to ascertain the most optimal intervention methodology and which cancer populations or treatment modalities are appropriate for such an intervention.
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