Статті в журналах: "Cancer caregiving"

1

Sitaraman, Kartick. "Caregiving." Cancer Research, Statistics, and Treatment 5, no. 2 (2022): 265. http://dx.doi.org/10.4103/crst.crst_56_22.

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Nassar, Nadia Al, and Kristin Litzelman. "Partner Effects on Depressed Mood in Caregiving Dyads Are Most Pronounced in Cancer Caregiving, Partner Caregiving." Innovation in Aging 4, Supplement_1 (December 1, 2020): 352. http://dx.doi.org/10.1093/geroni/igaa057.1132.

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Abstract Theory and empirical evidence indicate that the well-being of caregivers and their care recipients is interrelated, although conflicting evidence has emerged across different caregiving populations. To establish a more nuanced understanding of this phenomenon, we used data from the National Health and Aging Trends Survey and the National Survey on Caregivers (2015 and 2017, n=759 dyads with complete longitudinal data) to construct actor-partner interdependence models assessing how spillover of depression varies by care recipient health condition (cancer, dementia, stroke, diabetes, or other conditions) and relationship type (spouse/partner, child, or other). Across condition types, the largest magnitude partner effects were observed in dyads with cancer, in which a one-point increase in caregiver depressed mood was associated with a 0.23-point increase in subsequent care recipient depressed mood (p=0.02) and a one-point increase in care recipient depressed mood was associated with a 0.33-point increase in subsequent caregiver depressed mood (p<0.01). Moderation by cancer status was statistically significant (pinteraction=0.03). Among spouse/partner caregivers, caregivers’ depressed mood was associated with subsequent depressed mood in the care recipient (p<0.05) but there was no evidence of spillover from the care recipient to the caregiver. Conversely, in both adult child caregivers and other caregivers, there was evidence for spillover from the care recipient to the caregiver (p<0.05) but not the reverse. The findings show that the interrelationship in the well-being of caregivers and care recipients varies by key caregiving characteristics, with implications for the development, dissemination, and implementation of interventions targeting caregiver, care recipient, and dyadic well-being.

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Opsomer, Sophie, Jan De Lepeleire, Emelien Lauwerier, and Peter Pype. "Resilience in advanced cancer caregiving." British Journal of General Practice 70, suppl 1 (June 2020): bjgp20X711041. http://dx.doi.org/10.3399/bjgp20x711041.

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BackgroundFamily caregivers of advanced cancer patients are at risk for developing mental disorders. Despite this risk, the majority seem to adapt well, and throughout the caregiving period, their trajectory is characterised by healthy functioning. However, GPs struggle with making timely assessments of caregivers at risk for mental dysfunction, since they often fail to seek medical help for themselves and the appropriate research about resilience in cancer caregivers is scarce. Moreover, research is hampered by the lack of a universal definition or theoretical framework.AimTo propose a comprehensive definition and framework for further research in family caregiving for advanced cancer patients.MethodInspired by the hermeneutic methodology, reviews and concept analyses on resilience following a potentially traumatic event were searched and analysed. Conforming to the hermeneutic methodology, article collection from PubMed, EMBASE, CINAHL, and PsycInfo was followed by analysis and was stopped when saturation was reached. Elements consistently arising from the definitions of resilience were listed and the theoretical frameworks were compared.ResultsThe APA definition: ‘resilience is the process of adapting well in the face of adversity, trauma or threats’ and Bonanno’s framework ‘temporal elements of resilience’ are proposed.ConclusionThere is a need for studies on resilience in caregivers of advanced cancer patients. Resilience is context-dependent, hence, study results cannot be transferred as such from one clinical situation to another. Furthermore, conceptual ambiguities hinder the interpretation and comparison of study results. For further research on resilience in caregivers of advanced cancer patients, we suggest the APA definition of resilience and Bonanno’s framework.

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Stetz, Kathleen M. "Caregiving demands during advanced cancer." Cancer Nursing 10, no. 5 (October 1987): 260???268. http://dx.doi.org/10.1097/00002820-198710000-00004.

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5

Romito, Francesca, Gil Goldzweig, Claudia Cormio, Mariët Hagedoorn, and Barbara L. Andersen. "Informal caregiving for cancer patients." Cancer 119 (May 20, 2013): 2160–69. http://dx.doi.org/10.1002/cncr.28057.

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6

Teo, Irene, Drishti Baid, Semra Ozdemir, Chetna Malhotra, Ratna Singh, Richard Harding, Rahul Malhotra, et al. "Family caregivers of advanced cancer patients: self-perceived competency and meaning-making." BMJ Supportive & Palliative Care 10, no. 4 (December 5, 2019): 435–42. http://dx.doi.org/10.1136/bmjspcare-2019-001979.

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BackgroundFamily caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.AimWe examined the relationship between caregivers’ time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.Design/participantsCross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.ResultsTime spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.ConclusionGreater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.

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W N, Sachintha Dilhani, Sivayogan S, Jayamal De Silva, Thushari Hapuarachchi, Kandapolaarachchi P, and Suraj Perera. "Primary caregivers of children with cancer, Sri Lanka; A journey through their Psychological distress, Psychosocial needs, and Knowledge on caregiving." Asian Journal of Interdisciplinary Research 5, no. 4 (December 30, 2022): 1–13. http://dx.doi.org/10.54392/ajir2241.

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Identifying and addressing the psychosocial needs and psychological distress of primary caregivers of children and adolescents with cancers is emerging globally as a component that should be incorporated into quality cancer care. The objective of this study was to describe the psychosocial needs, psychological distress, knowledge of caregiving, and associated factors among the primary caregivers of children and adolescents with cancers attending the leading cancer treatment center in Sri Lanka. A descriptive cross-sectional study was conducted among childhood cancer caregivers in the early post-diagnosis stage using a needs and knowledge assessment questionnaire and General Health Questionnaire-30. Associations were sought between variables by bivariate analysis and further multivariate analysis. Consecutively, emotional needs, financial needs, informational needs, practical needs, and need for family and social support were at the top of the unmet needs list. All study participants had at least one item of unmet psychosocial needs. A lower education level was significantly associated with higher unmet psychosocial needs (OR=4.990; CI=1.96-12.72). Almost all the primary caregivers were psychologically distressed (97.6 %; CI = 95.3% - 99.9%) during the early post-diagnosis period. Only 18% of caregivers had a good overall knowledge of childhood cancer caregiving. Good overall knowledge of childhood cancer caregiving was associated with low distress levels (OR =2.46; 95% CI= 1.04 – 5.83). Almost all primary caregivers of children and adolescents with cancers at the early stages of diagnosis were highly distressed and had multiple unmet psychosocial needs with poor awareness of caregiving.

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8

Petricone-Westwood, Danielle, Jacqueline Galica, Sarah Hales, Elisa Stragapede, and Sophie Lebel. "An Investigation of the Effect of Attachment on Distress among Partners of Patients with Ovarian Cancer and Their Relationship with the Cancer Care Providers." Current Oncology 28, no. 4 (August 4, 2021): 2950–60. http://dx.doi.org/10.3390/curroncol28040258.

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Caregivers of patients with ovarian cancer experience distress related to caregiving difficulties within cancer care. Attachment insecurity is a well-known protector of distress, particularly as it relates to support from others. Using multivariate analyses, this study sought to determine the contribution of attachment insecurity and experiences with cancer care on symptoms of depression and anxiety, and investigated whether attachment insecurity moderated the relationship between caregiving experiences and distress. Multiple hierarchical regression analyses were conducted as part of a larger cross-sectional questionnaire study of distress among partners of patients with ovarian cancer. Participants (n = 82) were predominantly male, white, had household incomes over $100,000 and postsecondary education. Caregiving experiences explained 56% of the variance in depression, and 28% of the variance in anxiety. Specifically, lack of time for social relations as a result of caregiving significantly predicted depression and anxiety. Attachment anxiety correlated with both depression and anxiety, but attachment avoidance did not. Neither attachment anxiety nor attachment avoidance significantly contributed to distress variance, and neither moderated any of the relationships between caregiving experiences and distress outcomes. This study highlights the importance for cancer care to recognize the effect of caregiving responsibilities upon caregivers’ mental health, regardless of vulnerability to distress.

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9

Braun, Michal, Mario Mikulincer, Anne Rydall, Andrew Walsh, and Gary Rodin. "Hidden Morbidity in Cancer: Spouse Caregivers." Journal of Clinical Oncology 25, no. 30 (October 20, 2007): 4829–34. http://dx.doi.org/10.1200/jco.2006.10.0909.

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Purpose This study assesses psychological distress among advanced cancer patients and their spouse caregivers, while examining the relative contribution of caregiving burden and relational variables (attachment orientation and marital satisfaction) to depressive symptoms in the spouse caregivers. Methods A total of 101 patients with advanced GI or lung cancer and their spouse caregivers were recruited for the study. Measures included Beck Depression Inventory–II (BDI-II), Caregiving Burden scale, Experiences in Close Relationships scale, and ENRICH Marital Satisfaction scale. Results A total of 38.9% of the caregivers reported significant symptoms of depression (BDI-II ≥ 15) compared with 23.0% of their ill spouses (P < .0001). In a hierarchical regression predicting caregiver's depression, spouse caregiver's age and patient's cancer site were entered in the first step, objective caregiving burden was entered in the second step, subjective caregiving burden was entered in the third step, caregiver's attachment scores were entered in the fourth step, and caregiver's marital satisfaction score was entered in the fifth step. The final model accounted for 37% of the variance of caregiver depression, with subjective caregiving burden (β = .38; P < .01), caregiver's anxious attachment (β = .21; P < .05), caregiver's avoidant attachment (β = .20; P < .05), and caregiver's marital satisfaction (β = −.18; P < .05) making significant contributions to the model. Conclusion Spouse caregivers of patients with advanced cancer are a high-risk population for depression. Subjective caregiving burden and relational variables, such as caregivers' attachment orientations and marital dissatisfaction, are important predictors of caregiver depression.

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10

Liu, Zhu. "Caregiving Burden among Family Caregivers of People with Advanced Cancer: A Literature Review." Nursing & Healthcare International Journal 5, no. 3 (2021): 1–8. http://dx.doi.org/10.23880/nhij-16000240.

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This literature review focus on the research methods, levels, influencing factors and types of family caregiver burden caring patients with advanced cancer, aiming to improve medical worker’s understanding of caregiver burden, provide a basis for building their support system, and produce new insights for nursing practice and research in the future.

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11

Ferrell, Betty R., Marcia Grant, Tami Borneman, Gloria Juarez, and Anna Ter Veer. "Family Caregiving in Cancer Pain Management." Journal of Palliative Medicine 2, no. 2 (June 1999): 185–95. http://dx.doi.org/10.1089/jpm.1999.2.185.

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12

Ferrell, Betty R. "Family Caregiving and Cancer Pain Management." Anesthesia & Analgesia 129, no. 5 (November 2019): 1408–13. http://dx.doi.org/10.1213/ane.0000000000003937.

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13

Mazanec, Polly. "Distance Caregiving a Parent With Cancer." Seminars in Oncology Nursing 28, no. 4 (November 2012): 271–78. http://dx.doi.org/10.1016/j.soncn.2012.09.010.

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14

Bradley, Cathy J. "Economic Burden Associated with Cancer Caregiving." Seminars in Oncology Nursing 35, no. 4 (August 2019): 333–36. http://dx.doi.org/10.1016/j.soncn.2019.06.003.

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15

Halls, Amy. "Towards a Sociology of Cancer Caregiving." Sociology of Health & Illness 39, no. 3 (March 26, 2016): 489–90. http://dx.doi.org/10.1111/1467-9566.12425.

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16

Printz, Carrie. "Substantial time associated with cancer caregiving." Cancer 117, no. 7 (March 18, 2011): 1332. http://dx.doi.org/10.1002/cncr.26076.

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17

de Moor, Janet S., Emily C. Dowling, Donatus U. Ekwueme, Gery P. Guy, Juan Rodriguez, Katherine S. Virgo, Xuesong Han, et al. "Employment implications of informal cancer caregiving." Journal of Cancer Survivorship 11, no. 1 (July 16, 2016): 48–57. http://dx.doi.org/10.1007/s11764-016-0560-5.

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18

Kent, Erin E., and J. Nicholas Dionne-Odom. "Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer." Journal of Oncology Practice 15, no. 2 (February 2019): e122-e131. http://dx.doi.org/10.1200/jop.18.00522.

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PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs ( P < .05), with a significant interaction ( P = .02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.

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Ling, Gigi C. C., and Amy Y. M. Chow. "When Cancer Meets Dementia: The End-of-Life Caregiving Experience for Older Adults With Comorbid Dementia and Cancer." Innovation in Aging 4, Supplement_1 (December 1, 2020): 472. http://dx.doi.org/10.1093/geroni/igaa057.1529.

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Abstract Older adults with comorbid dementia and cancer is an increasing phenomenon with the aging population worldwide. Caregivers of these older adults might have a totally different and unique end-of-life caregiving experience. This is because all physical and behavioral signs and symptoms of dementia and cancer may interact with each other and complicate the caregiving experience. The aims of this study was to understand and examine the end-of-life caregiving experiences for older adults with comorbid dementia and terminal cancer from the perspective of family caregivers. Twenty-one caregivers were invited to participate in a semi-structured interview that examined the end-of-life caregiving experiences, its impact and how they coped with the challenges they faced. The interviews were transcribed and analyzed using interpretative phenomenological analysis. The essential meaning of the phenomenon is understood as “grieving thrice, suffering dually and becoming one”, characterized by how caregivers understood the meaning of togetherness after going through the time of recurring losses from dementia through cancer to death and experiencing ambiguous sufferings dually with their loved one. Ambiguous sufferings were not “there” before the diagnosis of cancer but emerge in the context of comorbid dementia and cancer and in the connection with the caregivers making interpretation and appraisal of their internal and external resources. These important findings fill in the knowledge gap in the literature related to end-of-life caregiving experience for older adults with comorbid dementia and cancer; and may guide the development of appropriate interventions to support the older adults and their caregivers in a holistic approach.

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Hayman, James A., Kenneth M. Langa, Mohammed U. Kabeto, Steven J. Katz, Sonya M. DeMonner, Michael E. Chernew, Mitchell B. Slavin, and A. Mark Fendrick. "Estimating the Cost of Informal Caregiving for Elderly Patients With Cancer." Journal of Clinical Oncology 19, no. 13 (July 1, 2001): 3219–25. http://dx.doi.org/10.1200/jco.2001.19.13.3219.

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PURPOSE: As the United States population ages, the increasing prevalence of cancer is likely to result in higher direct medical and nonmedical costs. Although estimates of the associated direct medical costs exist, very little information is available regarding the prevalence, time, and cost associated with informal caregiving for elderly cancer patients. MATERIALS AND METHODS: To estimate these costs, we used data from the first wave (1993) of the Asset and Health Dynamics (AHEAD) Study, a nationally representative longitudinal survey of people aged 70 or older. Using a multivariable, two-part regression model to control for differences in health and functional status, social support, and sociodemographics, we estimated the probability of receiving informal care, the average weekly number of caregiving hours, and the average annual caregiving cost per case (assuming an average hourly wage of $8.17) for subjects who reported no history of cancer (NC), having a diagnosis of cancer but not receiving treatment for their cancer in the last year (CNT), and having a diagnosis of cancer and receiving treatment in the last year (CT). RESULTS: Of the 7,443 subjects surveyed, 6,422 (86%) reported NC, 718 (10%) reported CNT, and 303 (4%) reported CT. Whereas the adjusted probability of informal caregiving for those respondents reporting NC and CNT was 26%, it was 34% for those reporting CT (P < .05). Those subjects reporting CT received an average of 10.0 hours of informal caregiving per week, as compared with 6.9 and 6.8 hours for those who reported NC and CNT, respectively (P < .05). Accordingly, cancer treatment was associated with an incremental increase of 3.1 hours per week, which translates into an additional average yearly cost of $1,200 per patient and just over $1 billion nationally. CONCLUSION: Informal caregiving costs are substantial and should be considered when estimating the cost of cancer treatment in the elderly.

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Hastert, Theresa A., Julie J. Ruterbusch, Mrudula Nair, Mirza Ishrat Noor, Jennifer L. Beebe-Dimmer, Kendra Schwartz, Tara E. Baird, Felicity W. K. Harper, Hayley Thompson, and Ann G. Schwartz. "Employment Outcomes, Financial Burden, Anxiety, and Depression Among Caregivers of African American Cancer Survivors." JCO Oncology Practice 16, no. 3 (March 2020): e221-e233. http://dx.doi.org/10.1200/jop.19.00410.

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PURPOSE: Caregivers of cancer survivors may need to take time off work or make other employment changes to handle caregiving demands. Work impacts of caregiving, financial burden, and psychosocial outcomes of caregivers are not well understood. METHODS: Results include information from surveys completed by 202 employed caregivers of participants in the Detroit Research on Cancer Survivors cohort, a population-based cohort of African American survivors of breast, colorectal, lung, or prostate cancer. Relationships between work outcomes, financial burden, and anxiety and depression were assessed using logistic regression models controlling for demographic and cancer-related factors. RESULTS: Most (73.8%) caregivers made some employment change. Sixty percent changed their schedule, hours, duties, or employment status; 15.3% took at least 1 month off to provide care, and 38% reported difficulty balancing work and caregiving. Employment changes were strongly associated with difficulty balancing work and caregiving (odds ratio [OR], 5.83; 95% CI, 2.38 to 14.0) and financial burden (OR, 2.12; 95% CI, 1.05 to 4.27). Difficulty balancing work and caregiving was associated with symptoms of anxiety (OR, 1.86; 95% CI, 1.01 to 3.43) and depression (OR, 2.40; 95% CI, 1.16 to 4.96). High ( v low) financial burden was associated with symptoms of anxiety (OR, 2.85; 95% CI, 1.01 to 8.06). CONCLUSION: Difficulty balancing work and caregiving is common among caregivers of African American cancer survivors and is associated with symptoms of depression and anxiety. Supports for caregivers facing employment challenges may improve their psychosocial well-being.

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Stamataki, Z., J. E. Ellis, J. Costello, J. Fielding, M. Burns, and A. Molassiotis. "Chronicles of informal caregiving in cancer: using ‘The Cancer Family Caregiving Experience’ model as an explanatory framework." Supportive Care in Cancer 22, no. 2 (October 4, 2013): 435–44. http://dx.doi.org/10.1007/s00520-013-1994-1.

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23

Balfe, M., K. M. O'Brien, A. Timmons, P. Butow, E. O'Sullivan, R. Gooberman-Hill, and L. Sharp. "Informal caregiving in head and neck cancer: caregiving activities and psychological well-being." European Journal of Cancer Care 27, no. 2 (June 7, 2016): e12520. http://dx.doi.org/10.1111/ecc.12520.

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Balfe, M., KM O’Brien, A. Timmons, E. O’Sullivan, P. Butow, R. Gooberman-Hill, and L. Sharp. "PP52 Informal caregiving in head and neck cancer: caregiving activities and psychological wellbeing." Journal of Epidemiology and Community Health 69, Suppl 1 (August 31, 2015): A75.2—A75. http://dx.doi.org/10.1136/jech-2015-206256.149.

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Theodoropoulos, Nicholas, Hui Xie, Qian Wang, Yannan Li, and Chi Wen. "Financial stress and burden among caregivers of cancer survivors in the United States." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): 12027. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.12027.

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12027 Background: United States caregivers perform annual services equating to nearly $500 billion, with three-quarters of family caregivers utilizing personal funds. Nearly a third of all caregivers of cancer survivors report using all or most of their savings to contribute to the cost of cancer care. Prior studies indicate the duration of caregiving is associated with an increase in caregiving burden. This study aims to further describe the financial stress and burden in relation to caregiving duration for people who provide care to cancer survivors. Methods: A retrospective cross-sectional study was conducted using the 2015 and 2020 National Alliance for Caregiving and American Association of Retired Persons survey data. Multivariable logistic regressions were used to examine differences in reporting financial stress between various racial/ethnic groups while adjusting for education, income, and employment. Results: A total of 2,998 caregivers were included, where 208 of them were caring for cancer patients. Caregivers of cancer patients who provided care > 21 hours/week were statistically more likely to be less educated, lower income, single, and unemployed compared to those who provided < 21 hours/week. Caregiving for > 21 hours/week compared to < 21 hours/week is associated with being more likely to report communicating with healthcare professionals about a recipient's care (87.7% vs. 75.9%; p = 0.038). It is borderline significant that caregivers who provided care for > 21 hours/week were more likely to advocate for recipients (68.7% vs. 56.8%; p = 0.086) and monitor condition severity to adjust care needs (84.9% vs. 70.7%; p = 0.100). After controlling for confounders (education, income, and employment), Non-Hispanic Black (odds ratio (OR) = 1.30; 95% CI: 1.02-1.65), Hispanic (OR = 1.39; 95% CI: 1.02-1.89), and Asian (OR = 1.51; 95% CI: 1.02-2.24) cancer caregivers had increased odds of reporting increased financial stress compared to Non-Hispanic White caregivers. Conclusions: Longer duration of caregiving to cancer survivors is associated with a greater burden for caregivers. Financial stress disparities related to caregiving exist between racial/ethnic groups, with non-white caregivers being more likely to report increased financial strain. Special financial programs are needed to assist caregivers of cancer survivors, a growing but understudied population.

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Theodoropoulos, Nicholas, Hui Xie, Qian Wang, Yannan Li, and Chi Wen. "Financial stress and burden among caregivers of cancer survivors in the United States." Journal of Clinical Oncology 40, no. 16_suppl (June 1, 2022): 12027. http://dx.doi.org/10.1200/jco.2022.40.16_suppl.12027.

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12027 Background: United States caregivers perform annual services equating to nearly $500 billion, with three-quarters of family caregivers utilizing personal funds. Nearly a third of all caregivers of cancer survivors report using all or most of their savings to contribute to the cost of cancer care. Prior studies indicate the duration of caregiving is associated with an increase in caregiving burden. This study aims to further describe the financial stress and burden in relation to caregiving duration for people who provide care to cancer survivors. Methods: A retrospective cross-sectional study was conducted using the 2015 and 2020 National Alliance for Caregiving and American Association of Retired Persons survey data. Multivariable logistic regressions were used to examine differences in reporting financial stress between various racial/ethnic groups while adjusting for education, income, and employment. Results: A total of 2,998 caregivers were included, where 208 of them were caring for cancer patients. Caregivers of cancer patients who provided care > 21 hours/week were statistically more likely to be less educated, lower income, single, and unemployed compared to those who provided < 21 hours/week. Caregiving for > 21 hours/week compared to < 21 hours/week is associated with being more likely to report communicating with healthcare professionals about a recipient's care (87.7% vs. 75.9%; p = 0.038). It is borderline significant that caregivers who provided care for > 21 hours/week were more likely to advocate for recipients (68.7% vs. 56.8%; p = 0.086) and monitor condition severity to adjust care needs (84.9% vs. 70.7%; p = 0.100). After controlling for confounders (education, income, and employment), Non-Hispanic Black (odds ratio (OR) = 1.30; 95% CI: 1.02-1.65), Hispanic (OR = 1.39; 95% CI: 1.02-1.89), and Asian (OR = 1.51; 95% CI: 1.02-2.24) cancer caregivers had increased odds of reporting increased financial stress compared to Non-Hispanic White caregivers. Conclusions: Longer duration of caregiving to cancer survivors is associated with a greater burden for caregivers. Financial stress disparities related to caregiving exist between racial/ethnic groups, with non-white caregivers being more likely to report increased financial strain. Special financial programs are needed to assist caregivers of cancer survivors, a growing but understudied population.

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Fisher, Carla L., Kevin B. Wright, Chelsea N. Hampton, Taylor S. Vasquez, Amanda Kastrinos, Allison J. Applebaum, Maria Sae-Hau, Elisa S. Weiss, Greg Lincoln, and Carma L. Bylund. "Blood cancer caregiving during COVID-19: understanding caregivers’ needs." Translational Behavioral Medicine 11, no. 5 (May 1, 2021): 1187–97. http://dx.doi.org/10.1093/tbm/ibab021.

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Abstract The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers’ uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers’ experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers’ needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.

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Leung, D. Y. P. "13 Caregiving Burden and Unmet Support Needs in Chinese Caregivers and Cancer Patients." Age and Ageing 50, Supplement_1 (March 2021): i1—i6. http://dx.doi.org/10.1093/ageing/afab028.13.

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Abstract Introduction Cancer burden continues to rise globally and locally. Due to the shift of the cancer care from the hospital to the community, many cancer patients requiring needs in palliative care from their informal caregivers. Many caregivers often taking up the important roles and responsibilities but their own needs are largely neglected, and hence may induce caregiving burden. This study aims to explore the relationships of caregiving burden with unmet support needs in both cancer patients and their caregivers. Method A convenience sample of 280 patient-caregiver dyads was recruited from the oncology outpatient clinic of two hospitals in Hong Kong between April and June 2018. Among them, 258 (92.1%) patient-caregiver dyads provided complete information on unmet supportive care needs (Patient: the 34-item SCNS-SF34-C, Caregivers: the 26-item SPUNS-SF), and caregiving burden (Caregiver Strain Index). Results Among the patients, their mean age was 60.8 (SD = 13.6) and 66% were female. Among the caregivers, their mean age was 49.3 (SD = 14.6), 67.2% were female, and 38.2% were children of the patient. Mean level caregiving burden in caregivers was 4.87 (SD = 3.75) out of a range 0–13. Regression analysis showed that higher caregiving burden was associated significantly with higher caregiver’s unmet support in personal and emotional needs (βstd = 0.348) and future concerns (βstd = 0.204), and patient’s unmet support in physical and daily living needs (βstd = 0.201), but lower caregiver’s unmet support in information needs (βstd = −0.233) after controlling for age, gender, and education level of both patients and caregivers. Conclusions The findings shed lights in designing interventions aim at reducing caregiving burden by targeting caregiver’s unmet support in personal and emotional need and those caregivers are taking care of cancer patients with unmet support in physical and daily living needs. However, the finding on caregiver’s unmet support in information needs was a protective factor of caregiving burden warrants further exploration.

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Kerba, Marc, Shireen Kassam, Crystal Beaumont, Patricia Biondo, Madalene Earp, Patricia A. Tang, Jessica Simon, Sharon Watanabe, and Aynharan Sinnarajah. "Living with advanced colorectal cancer: How prepared are informal caregivers to care for their loved ones?" Journal of Clinical Oncology 37, no. 27_suppl (September 20, 2019): 179. http://dx.doi.org/10.1200/jco.2019.37.27_suppl.179.

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179 Background: The ‘Living with Colorectal Cancer’ prospective cohort study seeks to characterize the experiences of patients diagnosed with advanced colorectal cancer and their caregivers, in order to inform care improvements. Here we describe informal caregivers’ perceived preparedness for caregiving. Methods: Eligible patients were identified by oncologists in Alberta, Canada’s two tertiary cancer centers. Consenting patients were given the option to invite a caregiver to participate. Caregivers’ preparedness for caregiving was assessed at enrollment and every 3 months thereafter using the Preparedness for Caregiving survey. This survey assesses levels of preparedness using 5-point Likert scales for 8 caregiving domains (e.g. caring for the patient’s physical and emotional needs, finding and setting up services, stress of caregiving, responding to emergencies), and one open-ended question. Results: In one year of recruitment, 55 caregivers in Calgary and Edmonton were enrolled, of which 65% were female, and 80% lived with the patient. Caregiver preparedness decreased over time from months 1 to 7 of follow-up, across all categories. Caregivers were least prepared for the stress of caregiving and caring for the patient’s emotional needs. They were most prepared for taking care of the patient’s physical needs at enrollment. Open-ended comments on specific preparedness needs were numerous and extensive. A range of topics were reported, the top three being: caregiver health (physical, mental, self-care), emotional aspects (preparing children and family, feeling alone) and end of life (hospice, palliative care, transitioning). Conclusions: Our data suggest that in the advanced cancer setting, caregiver perceived preparedness declines, with increasing stress and emotional distress over time. This may be related to patient illness progression. The open-ended qualitative comments on the Preparedness for Caregiving survey were particularly useful in understanding specific caregiver concerns. Caregiver experience, including sense of preparedness, is often under evaluated and this study suggests more attention is needed. Clinical trial information: NCT03572101.

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Werdani, Yesiana Dwi Wahyu. "Pengaruh caregiving pada pasien kanker terhadap tingkat caregiver burden." Jurnal Ners dan Kebidanan (Journal of Ners and Midwifery) 5, no. 3 (December 31, 2018): 249–56. http://dx.doi.org/10.26699/jnk.v5i3.art.p249-256.

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Abstrak : Kompleksitas perawatan pasien kanker menyebabkan tingginya tingkat ketergantungan pasien kepada caregiver baik ketergantungan fisik maupun psikologis, yang berdampak terhadap timbulnya caregiver burden. Tujuan penelitian membuktikan adanya pengaruh caregiving pada pasien kanker terhadap tingkat caregiver burden. Desain yang digunakan cross sectional. Populasinya adalah caregiver pasien kanker di wilayah kerja puskesmas Kedungdoro dan Pacarkeling Surabaya yang jumlah 60 orang, yang diambil dengan teknik total sampling. Instrumen yang digunakan yaitu kuesioner caregiving dan caregiver burden scale yang telah diuji validitas dan reliabilitasnya. Uji statistik dengan regresi ordinal didapatkan p = 0.000, dengan nilai R = 0.699 yang berarti ada pengaruh caregiving terhadap terhadap tingkat caregiver burden dengan besarnya pengaruh adalah 69.9%. Semakin kompleks keluhan pasien kanker, menyebabkan semakin lamanya durasi perawatan yang diberikan caregiver kepada pasien, hal ini berdampak terhadap ketidaseimbangan waktu kerja pribadi dengan waktu luang yang dimiliki caregiver untuk berelaksasi, hal ini menjadi stresor yang memicu stres, dan dalam jangka waktu yang lama dapat menyebabkan caregiver burden.Kata Kunci : Caregiving, caregiver burden, kankerAbstract : The complexity caring of cancer patients causes the high levels of patient dependences physic and psychology on caregivers, it impact on the the caregiver burden. The purpose was determine the effect of caregiving in cancer patients on the caregiver burden level. The design used cross sectional. The population were caregivers of cancer patients in the working area of Kedungdoro Health Center Surabaya and Pacarkeling Health Center Surabaya amounted 60 people, the total sampling method is taken. The instruments used were caregiving and caregiver burden scale questionnaires that have been tested for validity and reliability. Statistical test with ordinal regression p = 0.000, R = 0.699, it means that there was effect of caregiving in cancer patients on the caregiver burden level with the influence was 69.9%. The more complex complaints of cancer patients cause the longer caring duration provided by the caregiver to the patient, it impact on the imbalance of personal work time and free time of caregiver to relax, it becomes a stressor that triggers stress, and in the long term can cause the caregiver burden.Kata Kunci : Caregiving, caregiver burden, kanker

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Warner, Echo L., Andrew R. Wilson, Jessica G. Rainbow, Lee Ellington, and Anne C. Kirchhoff. "Employment of Young Adult Cancer Caregivers, Other Disease Caregivers, and Non-Caregiving Adults." International Journal of Environmental Research and Public Health 18, no. 14 (July 13, 2021): 7452. http://dx.doi.org/10.3390/ijerph18147452.

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Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents’ ages varied between 18 and 39, and they were categorized as non-caregivers (n = 16,009), other caregivers (n = 3512), and cancer caregivers (n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88–2.10, all p< 0.015). Female cancer caregivers who were 25–29 (aIRR = 0.71, 95% CI = 0.51–1.00) and single (aIRR = 0.70, 95% CI = 0.52–0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68–0.98). Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually.

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Gonçalves, M., J. Teixeira Silva, A. Cabral, and Z. Santos. "Caregiving Experience of Multiple Myeloma Patients." European Psychiatry 33, S1 (March 2016): S498. http://dx.doi.org/10.1016/j.eurpsy.2016.01.1832.

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IntroductionMultiple Myeloma (MM) is a cancer formed by malignant plasma cells. On a worldwide scale, it is estimated that about 86,000 incident cases occur annually. The aim of this report is to investigate the experience among multiple myeloma caregivers, assessing the mental adjustment to cancer diagnosis and the most prevalent psychopathology in the caregivers. This paper also attempts to establish the influence of the symptoms has in the caregiving experience.MethodsAll eligible caregivers will be approached during a regularly scheduled patient clinic visit and informed consent will be obtained prior to study participation. Data will be collected using the Mental Adjustment Scale to the Cancer Scale Partner (EAMC-F), Memorial Symptom Assessment Scale – Short Form, and Depression, Anxiety and Stress Scale (DASS-21).ResultsAccording to the literature caring for patients with MM can be different comparing with another form of cancer. It is an incurable form of cancer, although treatments improve life expectancy and quality of life. The authors are expecting to find high rates of depression, anxiety, unmet needs, and burden of care. The symptoms of the patients will probably influence the caregiving experience.ConclusionMM accounts for about 14% of all newly diagnosed hematological cancer, and it is estimated that its incidence will rise. The importance of psychiatric intervention in the multidimensional approach is becoming a recognized reality. This is essential in the treatment of psychiatric disorders, to improve prognosis and quality of life but also to reduce side effects of treatments and symptoms related to cancer.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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Ferrario, Silvia Rossi, Venerando Cardillo, Franco Vicario, Elena Balzarini, and Anna Maria Zotti. "Advanced cancer at home: caregiving and bereavement." Palliative Medicine 18, no. 2 (March 2004): 129–36. http://dx.doi.org/10.1191/0269216304pm870oa.

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Aranda, Sanchia, and Anita Peerson. "Caregiving in Advanced Cancer: Lay Decision Making." Journal of Palliative Care 17, no. 4 (December 2001): 270–76. http://dx.doi.org/10.1177/082585970101700409.

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Sivakumar, C. "Role change as breadwinner in cancer caregiving." Indian Journal of Cancer 54, no. 2 (2017): 467. http://dx.doi.org/10.4103/ijc.ijc_211_17.

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Gaugler, Joseph E., Alejandra Eppinger, Jamie King, Tracey Sandberg, and William F. Regine. "Coping and its effects on cancer caregiving." Supportive Care in Cancer 21, no. 2 (June 21, 2012): 385–95. http://dx.doi.org/10.1007/s00520-012-1525-5.

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Washington, Karla T., Kenneth C. Pike, George Demiris, and Debra Parker Oliver. "Unique characteristics of informal hospice cancer caregiving." Supportive Care in Cancer 23, no. 7 (December 30, 2014): 2121–28. http://dx.doi.org/10.1007/s00520-014-2570-z.

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Sherrod, Amanda M., Barbara A. Murphy, Nancy L. Wells, Stewart M. Bond, Melody Hertzog, Jill Gilbert, Melissa Adair, et al. "Caregiving burden in head and neck cancer." Journal of Clinical Oncology 32, no. 15_suppl (May 20, 2014): e20678-e20678. http://dx.doi.org/10.1200/jco.2014.32.15_suppl.e20678.

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Kim, Youngmee, Richard Schulz, and Charles S. Carver. "Benefit Finding in the Cancer Caregiving Experience." Psychosomatic Medicine 69, no. 3 (April 2007): 283–91. http://dx.doi.org/10.1097/psy.0b013e3180417cf4.

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Martin, Michelle Y., Sara Sanders, Joan M. Griffin, Robert A. Oster, Christine Ritchie, Sean M. Phelan, Audie A. Atienza, Katherine Kahn, and Michelle van Ryn. "Racial Variation in the Cancer Caregiving Experience." Cancer Nursing 35, no. 4 (2012): 249–56. http://dx.doi.org/10.1097/ncc.0b013e3182330850.

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Surbone, Antonella. "Ethics of caregiving for elderly cancer patients." Journal of Geriatric Oncology 3 (October 2012): S15. http://dx.doi.org/10.1016/j.jgo.2012.10.148.

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Coristine, Marjorie, Dauna Crooks, Eva Grunfeld, Carole Stonebridge, and Anne Christie. "Caregiving for women with advanced breast cancer." Psycho-Oncology 12, no. 7 (2003): 709–19. http://dx.doi.org/10.1002/pon.696.

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Burton, Allison M., William E. Haley, Brent J. Small, Margaret R. Finley, Marie Dillinger-Vasille, and Ronald Schonwetter. "Predictors of well-being in bereaved former hospice caregivers: The role of caregiving stressors, appraisals, and social resources." Palliative and Supportive Care 6, no. 2 (May 23, 2008): 149–58. http://dx.doi.org/10.1017/s1478951508000230.

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ABSTRACTObjective:The current literature on caregiving and bereavement indicates that the relationship between these two common life events is complex and needs to be further studied in order to gain a more comprehensive understanding of their interaction.Methods:In the current project, 50 spouses of hospice patients with end-stage lung cancer or dementia were assessed while caregiving and at an average of 4 months after the death on a variety of measures, including caregiving stressors, appraisals, social resources, and well-being. A stress process model was utilized in order to examine which preloss factors were associated with postloss depression, life satisfaction, and grief.Results:Our results indicated that patient diagnosis (cancer or dementia) and caregiver appraisals (stressfulness of functional impairment and positive aspects of caregiving) were not predictors on any of our well-being outcomes. However, fewer months caregiving was a significant predictor of both higher depression and grief postloss. Additionally, lower levels of social activities, smaller social networks, and lower satisfaction with social support were significantly associated with higher postloss depression.Significance of results:Results support both the resource depletion and anticipatory grief hypotheses and suggest that short-term bereavement outcomes are different than factors that predict well-being while caregiving. Future studies should address whether long-term bereavement outcomes differ by baseline caregiving characteristics to guide intervention research.

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Ochoa, Carol Y., Natasha Buchanan Lunsford, and Judith Lee Smith. "Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life." Palliative and Supportive Care 18, no. 2 (October 7, 2019): 220–40. http://dx.doi.org/10.1017/s1478951519000622.

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AbstractObjectiveInformal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.MethodsA systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).ResultsOf 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.Significance of ResultsAdditional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.

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Ramasamy, Thendral, Surendran Veeraiah, and Kalpana Balakrishnan. "Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer - A Mixed-method Study." Indian Journal of Palliative Care 27 (November 25, 2021): 503–12. http://dx.doi.org/10.25259/ijpc_76_21.

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Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver’s appraisal of caregiving and (4) caregiver’s perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver’s life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.

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Tan, Rebekah, Serena Koh, Min En Wong, Ma Rui, and Shefaly Shorey. "Caregiver Stress, Coping Strategies, and Support Needs of Mothers Caring for their Children Who Are Undergoing Active Cancer Treatments." Clinical Nursing Research 29, no. 7 (November 9, 2019): 460–68. http://dx.doi.org/10.1177/1054773819888099.

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The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.

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Hasson-Ohayon, Ilanit, Gil Goldzweig, Tal Sela-Oren, Noam Pizem, Gil Bar-Sela, and Ido Wolf. "Attachment style, social support and finding meaning among spouses of colorectal cancer patients: Gender differences." Palliative and Supportive Care 13, no. 3 (August 8, 2013): 527–35. http://dx.doi.org/10.1017/s1478951513000242.

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AbstractObjectives:The current study explores the relationship between attachment styles, social support, gender and finding meaning in caregiving among spousal caregivers of colorectal cancer patients.Methods:Sixty caregivers (30 men and 30 women) were administered questionnaires assessing attachment styles, social support and finding meaning in caregiving, using a cross-sectional design.Results:For male caregivers avoidance attachment is associated with their finding meaning, whereas for female caregivers social support is associated with their finding meaning.Significance of results:Psychological interventions for caregivers should take into consideration gender differences and might benefit from addressing the process of finding meaning in caregiving.

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Opsomer, Sophie, Emelien Lauwerier, Jan De Lepeleire, and Peter Pype. "Resilience in advanced cancer caregiving. A systematic review and meta-synthesis." Palliative Medicine 36, no. 1 (January 2022): 44–58. http://dx.doi.org/10.1177/02692163211057749.

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Background: Close relatives provide much of the care to people with cancer. As resilience can shield family caregivers from mental health problems, there has been a burgeoning interest in resilience-promoting interventions. However, the evidence necessary for the development of these interventions is scant and unsynthesized. Aim: To create an overall picture of evidence on resilience in cancer caregiving by a theory-driven meta-synthesis. Design: In this systematically constructed review a thematic synthesis approach has been applied. The original findings were coded and structured deductively according to the theoretical framework. Consequently, the codes were organized inductively into themes and subthemes. Data sources: Through September 2019, five electronic databases were searched for qualitative studies on resilience in cancer caregiving. The search was extended by a supplementary hand search. Seventeen studies met the eligibility criteria. Results: The elements of resilience, as described in the pre-defined theoretical framework of Bonanno, are reflected in the lived experiences of family caregivers. The resilience process starts with the diagnosis of advanced cancer and may result in mental wellbeing, benefit finding, and personal growth. The process is influenced by context elements such as individual history, sociocultural background, caregiver characteristics, and the behavior of the supportive network. A repertoire of coping strategies that caregivers use throughout the caregiving process moderates the resilience process. Conclusion: This review and theoretical synthesis reveal key elements of resilience in the process of cancer caregiving, including influencing factors and outcomes. Implications and avenues for further research are discussed.

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Kent, Erin E., Margaret Longacre, Lisa Weber-Raley, C. Grace Whiting, and Gail Hunt. "Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 4. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.4.

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4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

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Kent, Erin. "Caring for Older Patients With Cancer: Estimates of the Prevalence, Burden, and Unmet Needs of Caregivers in the United States." Innovation in Aging 4, Supplement_1 (December 1, 2020): 690. http://dx.doi.org/10.1093/geroni/igaa057.2412.

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Abstract In 2020, ~1.8 million Americans are expected to be newly diagnosed with cancer, with approximately 70% of cases diagnosed over the age of 65. Cancer can have a ripple effect, impacting not just patients themselves, but their family caregivers. This presentation will provide an overview of the estimates of the number of family caregivers caring for individuals with cancer in the US, focusing on older patients, from several population-based data sources: Caregiving in the US 2020, the Health Information National Trends Survey (HINTS, 2017-2019), the Behavioral Risk Factors Surveillance System (BRFSS, 2015-2019), and the National Health and Aging Trends (NHATS) Survey. The presentation will compare features of the data sources to give a comprehensive picture of the state of cancer caregiving. In addition, the presentation will highlight what is known about the experiences of cancer caregivers, including caregiving characteristics, burden, unmet needs, and ideas for improving support for family caregivers.

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