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1.
CA Cancer J Clin ; 69(1): 35-49, 2019 01.
Article in English | MEDLINE | ID: mdl-30376182

ABSTRACT

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.


Subject(s)
Cancer Survivors , Caregivers , Health Policy , Health Services Accessibility/organization & administration , Healthcare Disparities/organization & administration , Quality Improvement/organization & administration , Adolescent , Adult , Aged , Aged, 80 and over , Biomedical Research/methods , Biomedical Research/organization & administration , Cancer Survivors/statistics & numerical data , Child , Child, Preschool , Evidence-Based Medicine/methods , Evidence-Based Medicine/organization & administration , Female , Health Status Disparities , Humans , Infant , Infant, Newborn , Male , Medically Underserved Area , Middle Aged , Needs Assessment , Outcome and Process Assessment, Health Care , Patient-Centered Care/methods , Patient-Centered Care/organization & administration , Referral and Consultation/organization & administration , Social Support , United States , Young Adult
2.
CA Cancer J Clin ; 66(1): 43-73, 2016.
Article in English | MEDLINE | ID: mdl-26641959

ABSTRACT

Answer questions and earn CME/CNE The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. A systematic review of the literature was conducted using PubMed through April 2015. A multidisciplinary expert workgroup with expertise in primary care, gynecology, surgical oncology, medical oncology, radiation oncology, and nursing was formed and tasked with drafting the Breast Cancer Survivorship Care Guideline. A total of 1073 articles met inclusion criteria; and, after full text review, 237 were included as the evidence base. Patients should undergo regular surveillance for breast cancer recurrence, including evaluation with a cancer-related history and physical examination, and should be screened for new primary breast cancer. Data do not support performing routine laboratory tests or imaging tests in asymptomatic patients to evaluate for breast cancer recurrence. Primary care clinicians should counsel patients about the importance of maintaining a healthy lifestyle, monitor for post-treatment symptoms that can adversely affect quality of life, and monitor for adherence to endocrine therapy. Recommendations provided in this guideline are based on current evidence in the literature and expert consensus opinion. Most of the evidence is not sufficient to warrant a strong evidence-based recommendation. Recommendations on surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and its treatment, health promotion, and care coordination/practice implications are made.


Subject(s)
Breast Neoplasms/therapy , Survivors , Adult , Aged , American Cancer Society , Body Image , Breast Neoplasms/complications , Breast Neoplasms/psychology , Early Detection of Cancer , Female , Genetic Counseling , Humans , Medical History Taking , Middle Aged , Neoplasm Recurrence, Local/diagnosis , Neoplasms, Second Primary/diagnosis , Physical Examination , Quality of Life , Risk Assessment , Survivors/psychology , United States , Young Adult
3.
CA Cancer J Clin ; 65(6): 428-55, 2015.
Article in English | MEDLINE | ID: mdl-26348643

ABSTRACT

Colorectal cancer (CRC) is the third most common cancer and third leading cause of cancer death in both men and women and second leading cause of cancer death when men and women are combined in the United States (US). Almost two-thirds of CRC survivors are living 5 years after diagnosis. Considering the recent decline in both incidence and mortality, the prevalence of CRC survivors is likely to increase dramatically over the coming decades with the increase in rates of CRC screening, further advances in early detection and treatment and the aging and growth of the US population. Survivors are at risk for a CRC recurrence, a new primary CRC, other cancers, as well as both short-term and long-term adverse effects of the CRC and the modalities used to treat it. CRC survivors may also have psychological, reproductive, genetic, social, and employment concerns after treatment. Communication and coordination of care between the treating oncologist and the primary care clinician is critical to effectively and efficiently manage the long-term care of CRC survivors. The guidelines in this article are intended to assist primary care clinicians in delivering risk-based health care for CRC survivors who have completed active therapy.


Subject(s)
Colorectal Neoplasms/therapy , Primary Health Care , Survivors , Aftercare , Colorectal Neoplasms/complications , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/psychology , Early Detection of Cancer/methods , Female , Health Promotion , Humans , Interdisciplinary Communication , Male , Neoplasm Recurrence, Local/diagnosis , Neoplasms, Second Primary/diagnosis , Patient Care Team , Quality of Life , Survivors/psychology
4.
Cancer ; 126(20): 4593-4601, 2020 10 15.
Article in English | MEDLINE | ID: mdl-32770755

ABSTRACT

BACKGROUND: Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long-term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated. METHODS: Family cancer caregivers completed prospective, longitudinal surveys 2, 5, and 8 years after diagnosis (n = 633). Early caregiving characteristics and demographics were measured at 2 years. Caregiver status (former caregivers-remission, current caregivers, and bereaved caregivers) and unmet needs were measured at 3 assessments. RESULTS: Caregivers' unmet needs at 8 years were attributable to the passages of the caregiving status as their patients' illness trajectory diverged from the initial state of receiving care. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during long-term survivorship was related to various domains of unmet needs at 8 years (t > 2.35, P < .02). Early perceived caregiving stress also predicted all domains of unmet needs at 8 years (t > 2.50, P < .02). Unmet needs at 8 years were the highest across the 3 assessment time points (F > 37.51, P < .001). CONCLUSIONS: The caregiving status trajectory over 8 years was a substantial predictor of family caregivers' unmet needs at the 8-year mark. Findings provide guidance for the development of evidence-based programs and patient/caregiver-centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their patients.


Subject(s)
Caregivers/psychology , Health Services Needs and Demand/standards , Neoplasms/therapy , Quality of Life/psychology , Adolescent , Female , Humans , Longitudinal Studies , Male , Prospective Studies , Time Factors , Young Adult
5.
Cancer ; 126(8): 1784-1792, 2020 04 15.
Article in English | MEDLINE | ID: mdl-31913499

ABSTRACT

BACKGROUND: Fear of cancer recurrence (FCR) has been associated with cancer screening behaviors among cancer survivors, but to the authors' knowledge, the question of whether the same is true for caregivers is unknown. The current study investigated the extent to which FCR among caregivers predicted their cancer screening behaviors years after their relatives' cancer diagnosis. METHODS: A total of 813 caregivers (67% of whom were female, mean age of 56 years, and 92% non-Hispanic white) completed surveys 2 years (T1) and 8 years (T2) after their patients' cancer diagnosis. FCR, anxiety (Profile of Mood States-Short Form [POMS-SF]), and general mental health (Medical Outcomes Study 36-Item Short-Form Health Survey [MOS SF-36]) were reported at T1; caregivers' engagement in screening for colorectal, breast, and prostate cancers because of the patients' diagnoses were reported at T2. RESULTS: Caregivers were found to engage in cancer screening at rates similar to those of the national average. Controlling for covariates, hierarchical logistic regression modeling for each type of cancer screening demonstrated that greater FCR was linearly related to a higher likelihood of undergoing colorectal cancer screening (odds ratio [OR], 1.15) and maintaining prostate cancer screening (OR, 1.34), but a lower likelihood of maintaining breast cancer screening in an age-appropriate manner (OR, 0.27). Examining curvilinear effects demonstrated that moderate levels of FCR were associated with a higher likelihood of maintaining age-appropriate colorectal cancer screening (OR, 1.48). CONCLUSIONS: The overall FCR among caregivers uniquely promotes their engagement in cancer screening behaviors. The role of caregivers' FCR in other types of cancer preventive behaviors and ways to channel FCR concerns into promoting healthy lifestyle behaviors should be investigated.


Subject(s)
Cancer Survivors/psychology , Caregivers/psychology , Early Detection of Cancer/psychology , Fear/psychology , Neoplasm Recurrence, Local/psychology , Neoplasms/diagnosis , Neoplasms/psychology , Anxiety/psychology , Female , Humans , Male , Middle Aged
6.
Ann Behav Med ; 54(3): 164-175, 2020 02 21.
Article in English | MEDLINE | ID: mdl-31602463

ABSTRACT

PURPOSE/BACKGROUND: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers. METHOD: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed. RESULTS: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics. CONCLUSION: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.


Subject(s)
Bereavement , Caregivers/psychology , Family/psychology , Needs Assessment , Neoplasms/nursing , Psychological Distress , Psychometrics/standards , Quality of Life/psychology , Adult , Aged , Female , Humans , Longitudinal Studies , Male , Middle Aged
7.
J Psychosoc Oncol ; 38(6): 782-798, 2020.
Article in English | MEDLINE | ID: mdl-32781919

ABSTRACT

PROBLEM IDENTIFICATION: Approximately 2.8 million Americans care for an individual with cancer. Because the literature typically describes caregiving experiences within patient age-groups (e.g., pediatrics, geriatrics), the purpose of this narrative review was to describe common and unique burdens and distress among caregivers of cancer-patients of different ages. LITERATURE SEARCH: We identified representative peer-reviewed manuscripts related to caregivers of pediatric, adolescent, young-, middle-, and late-adult oncology patients. We combined search terms "caregiver" and "cancer" with "burden," "distress," and/or age-related terms ("pediatric" or "geriatric"). Included studies focused on factors of caregiver-burden and distress. DATA EVALUATION/SYNTHESIS: Universal cancer-caregiving experiences include negative impacts on work-productivity, finances, social-/family-dynamics, and physical/emotional health. Age-related life experiences shape outcomes; pediatric caregivers may have fewer financial resources, whereas concurrent comorbidities create challenges for geriatric caregivers. CONCLUSIONS: Caregiving for cancer patients has universal, shared, and patient age-specific burdens. IMPLICATIONS FOR PRACTICE: Supportive care based on patient-age may improve caregiver well-being.


Subject(s)
Caregiver Burden/psychology , Neoplasms/therapy , Age Distribution , Humans
8.
Ann Behav Med ; 53(2): 150-157, 2019 02 01.
Article in English | MEDLINE | ID: mdl-30052710

ABSTRACT

Background: Although spirituality has been identified as a psychological resource relevant to coping with caregiving stress, little is known about the differential roles of spirituality's facets in bereaved caregivers' adjustment. Purpose: This study examined this question with regard to bereavement-specific and general distress in cancer caregivers. Methods: Cancer caregivers provided data at 2 years after their relative's diagnosis when all the patients were alive (Time 1, preloss) and 3 years later, after the patient had died (Time 2, postloss: N = 128). Demographics and three facets of spirituality (meaning, peace, and faith) were measured at Time 1. Psychological distress and time since the death were measured at Time 2. Results: Younger age, less education, and being a spousal caregiver of the patient related to greater bereavement-specific and general distress (ts ≥ 2.02, ps < .05, partial η2 ≥ .15). Above and beyond these demographic factors, two preloss spirituality facets related to postloss distress. Specifically, a greater sense of inner peace at preloss was prospectively associated with less bereavement-specific distress (both intrusive thoughts and hyperarousal, ts ≥ 2.24, ps < .05, partial η2 ≥ .41). Greater reliance on faith at preloss was also prospectively associated with lower intrusive thoughts (t = 2.24, p < .05, partial η2 = .34). Conclusion: Findings highlight the importance of preloss sense of peace as a predictor of psychological distress during bereavement. Programs and interventions might be designed to help caregivers find inner peace while caregiving, in an effort to augment their resiliency against psychological distress when facing the loss of the patient.


Subject(s)
Bereavement , Caregivers/psychology , Neoplasms/nursing , Psychological Distress , Spirituality , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Protective Factors , Time Factors
9.
Cancer ; 123(21): 4277-4285, 2017 Nov 01.
Article in English | MEDLINE | ID: mdl-28661573

ABSTRACT

BACKGROUND: Cancer caregiving has been associated with worsening health among caregivers themselves, yet demographic and psychosocial predictors of their long-term health decline are less known. This study examines changes in caregivers' physical health 2 to 8 years after their family members' cancer diagnosis and prospective predictors of that change. METHODS: Caregivers (n = 664; mean age, 53.2 years) participated in a nationwide study at 2 (T1), 5 (T2), and 8 (T3) years after their family members' cancer diagnosis. Physical health (12-item Medical Outcomes Study Short Form Health Survey Physical Component Scale) was assessed T1 through T3 as outcome. Predictors were self-reported at T1, including caregiver demographics (age, sex, education, income, relationship to patient, and employment status), patient cancer severity (from medical records), and caregiver psychosocial factors (caregiving stress, caregiving esteem, social support, and depressive symptoms). Latent growth modeling tested predictors of caregivers' initial physical health and their physical health change across time. RESULTS: At T1, caregivers reported slightly better physical health than the US population (M = 51.22, P = .002), which declined over the following 6 years (Mslope = -0.27, P < .001). All demographic factors, patient cancer severity, and T1 caregiving stress were related to caregivers' initial physical health (P ≤ .03). Higher depressive symptoms were unrelated to caregivers' initial physical health, but were the only significant predictor of caregivers' more rapid physical health decline (B = -0.02, P = .004). CONCLUSION: Findings highlight the unique contribution of caregivers' depressive symptoms to their physical health decline. Assessing and addressing depressive symptoms among caregivers early in the cancer survivorship trajectory may help to prevent premature health decline among this important yet vulnerable population. Cancer 2017;123:4277-4285. © 2017 American Cancer Society.


Subject(s)
Caregivers/psychology , Depression/psychology , Family/psychology , Health Status , Neoplasms/nursing , Female , Humans , Male , Middle Aged , Neoplasms/diagnosis , Prospective Studies , Self Concept , Socioeconomic Factors , Stress, Psychological/etiology , Surveys and Questionnaires , Time Factors
10.
Psychooncology ; 26(4): 484-492, 2017 04.
Article in English | MEDLINE | ID: mdl-26661137

ABSTRACT

BACKGROUND: A substantial number of family caregivers go through bereavement because of cancer, but little is known about the bereaved caregivers' long-term adjustment. This study aimed to document levels of bereavement outcomes (prolonged grief symptoms, intense emotional reaction to the loss, depressive symptoms, and life satisfaction) among family cancer caregivers 3-5 years post-loss and to investigate how self-rated preparedness for the patient's death predicted those bereavement outcomes. METHODS: Family members participated in a nationwide survey for cancer caregivers 2 years after the relative's diagnosis (T1). Of those, 109 were identified as bereaved by 5 years post-diagnosis (T2). Of those, 88 continued to participate at 8-year follow-up (T3) and provided valid data for the study variables. Caregivers' distress risk factors were measured at T1, satisfaction with palliative care and preparedness for the death of the patient at T2, and time since death of the patient at T2 or T3. RESULTS: Substantial numbers of family members (18% to 48%) displayed heightened levels of bereavement-related psychological distress years after the loss. Hierarchical general linear modeling revealed that perceived preparedness for the death of the patient concurrently and prospectively predicted better adjustment to bereavement, independent of contributions of other factors studied. CONCLUSIONS: Findings underscore the high prevalence of long-lasting bereavement-related distress among family cancer caregivers and the role of preparedness for the relative's death in the level of that distress. Findings suggest that psychosocial programs among caregivers focus on not only caregiving skills per se but also preparedness for the death of the patient. Copyright © 2015 John Wiley & Sons, Ltd.


Subject(s)
Bereavement , Caregivers/psychology , Family/psychology , Neoplasms/psychology , Self Concept , Adult , Aged , Attitude to Death , Depression/psychology , Female , Humans , Male , Middle Aged , Risk Factors
11.
Psychooncology ; 25(3): 266-74, 2016 Mar.
Article in English | MEDLINE | ID: mdl-25976620

ABSTRACT

BACKGROUND: The long-term impact of cancer caregiving on the family caregivers' quality of life (QOL) is currently not known. This study aimed (a) to characterize family caregivers of cancer survivors at 8 years post-diagnosis in terms of multidimensional aspects of QOL and (b) to identify demographic and early caregiving experience characteristics that may play significant roles in predicting the caregivers' longer-term QOL. METHODS: A total of 1087 caregivers participated in the 8-year follow-up National Quality of Life Survey for Caregivers. Demographics and early caregiving experiences were measured 2 years post-diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at both 2-year and 8-year post-diagnosis. RESULTS: Approximately 90% of family caregivers ceased the caregiver role by 8 years. One-fourth of them were due to bereavement. Caregivers' demographic and early caregiving characteristics were significantly associated with QOL. In addition, being bereaved by the 8-year mark predicted poorer mental health and greater psychological distress independent of contributions of demographic and early caregiving characteristics. CONCLUSIONS: Findings provided the first evidence that 8 years after the initial cancer diagnosis in the family, family members who became bereaved suffer from poorer mental health and greater psychological distress. Findings have theoretical implications for better understanding bereavement to cancer and practical implications for developing integrative programs to improve QOL among family members in the various phases of caregivership.


Subject(s)
Caregivers/psychology , Family/psychology , Neoplasms/psychology , Quality of Life/psychology , Stress, Psychological/psychology , Adult , Bereavement , Female , Follow-Up Studies , Grief , Humans , Male , Mental Health , Middle Aged , Socioeconomic Factors , Spirituality , Surveys and Questionnaires , Survivors/psychology , Time Factors
12.
Cancer ; 121(2): 302-10, 2015 Jan 15.
Article in English | MEDLINE | ID: mdl-25209592

ABSTRACT

BACKGROUND: The objective of this study was to investigate associations between earlier caregiving experience and the development of physical impairments over the subsequent 6 years among family caregivers of patients with cancer. METHODS: Family caregivers of cancer survivors participated in a nationwide survey 2 years after their relative's cancer diagnosis (T1) (N=1517) with follow-up at 5 years (T2) and 8 years (T3) postdiagnosis. Caregivers self-reported their demographics and levels of caregiving stress at T1. Caregiving status ("former" for those whose patient was remission, "bereaved" for those whose patient had died, and "current") and the presence of 3 physical impairments (arthritis, chronic back pain, and heart-related diseases) at the time of assessment were measured at T1 through T3. RESULTS: Caregiving stress was significantly related to concurrent presence of the 3 impairment markers at T1. Stressed caregivers also were more likely to develop heart diseases, and spousal caregivers were more likely than other caregivers to develop arthritis and chronic back pain several years after the initial caregiving experience (at T2 and T3). These effects were independent of age, sex, education, and income at T1, and they were also independent of caregiving status at each assessment. CONCLUSIONS: The current findings suggest that the adverse long-term health effects of earlier caregiving stress and of being a spousal caregiver should be acknowledged and that caregiving-related stress management programs should be incorporated into routine health care for family caregivers of cancer patients.


Subject(s)
Arthritis/epidemiology , Back Pain/epidemiology , Caregivers/statistics & numerical data , Heart Diseases/epidemiology , Neoplasms/nursing , Stress, Psychological/complications , Adult , Aged , Arthritis/etiology , Back Pain/etiology , Caregivers/psychology , Chronic Disease , Female , Health Status , Heart Diseases/etiology , Humans , Logistic Models , Male , Middle Aged , Quality of Life , Risk Factors , Severity of Illness Index , Stress, Psychological/etiology , Stress, Psychological/prevention & control , Surveys and Questionnaires , Time Factors , United States/epidemiology
13.
Ann Behav Med ; 49(4): 500-9, 2015 Aug.
Article in English | MEDLINE | ID: mdl-25637107

ABSTRACT

BACKGROUND: Studies have shown that caregivers report impaired quality of life (QOL). This study investigated how caregiving motives predict long-term spirituality and QOL among cancer caregivers and the role of gender in these associations. METHOD: Caregiving motives of family members (n = 369) were measured 2 years after their relative's cancer diagnosis (T1), and both spirituality and QOL (mental and physical health) were measured at 5 years postdiagnosis (T2). RESULTS: Structural equation modeling was used to test spirituality dimensions as potential mediators of links from caregiving motives to QOL. Among male caregivers, autonomous caregiving motives at T1 related to better mental health at T2, apparently because these motives led caregivers to find greater peace and meaning in life at T2. CONCLUSIONS: Findings suggest that caregivers may benefit from interventions that facilitate their ability to be autonomously motivated and find contentment in their caregiving experience, which may improve spiritual adjustment and QOL years later.


Subject(s)
Caregivers/psychology , Motivation , Neoplasms/nursing , Quality of Life/psychology , Spirituality , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Models, Psychological , Sex Characteristics , Young Adult
14.
Psychooncology ; 23(10): 1178-84, 2014 Oct.
Article in English | MEDLINE | ID: mdl-24839205

ABSTRACT

OBJECTIVE: Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. METHODS: Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. RESULTS: In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. CONCLUSIONS: Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being.


Subject(s)
Caregivers/psychology , Family/psychology , Neoplasms/psychology , Quality of Life , Spirituality , Adaptation, Psychological , Adult , Aged , Female , Follow-Up Studies , Humans , Male , Middle Aged , Multivariate Analysis , Self Concept , Social Support , Socioeconomic Factors , Stress, Psychological/psychology , Surveys and Questionnaires , United States
15.
Qual Life Res ; 22(6): 1265-72, 2013 Aug.
Article in English | MEDLINE | ID: mdl-22907603

ABSTRACT

PURPOSE: Informal care provided by family and friends of patients with chronic illness, such as cancer, makes an invaluable contribution to the medical system and to society, yet it also imposes challenges that result in increased morbidity and mortality of the caregivers. Researchers studying this topic confront major difficulties in acquiring information about caregivers' morbidity from medical records, a procedure that is costly and time consuming. METHODS: As an alternative, we developed a brief self-administered measure of morbid conditions for informal caregivers of persons with medical illness. We tested the measure, named the Morbidities Index for Caregivers of Chronic Illnesses (MICCI), using a large cancer caregiver sample (N = 774). RESULTS: The validity of the MICCI was supported by evidence that self-reports of the majority of morbidities were related to well-known demographic correlates of such morbidities, such as older age and being male, and that overall scores are related to widely used indicators of health status of medical populations as measured by the MOS SF. Caregivers reported an average of 4.5 morbid conditions. A higher number of morbidities were predicted by caregivers' poorer physical and mental health scores on the MOS. CONCLUSIONS: MICCI has the advantage of providing both an overall index of morbidities and information about specific diagnostic categories that are of potential interest to researchers.


Subject(s)
Caregivers/psychology , Chronic Disease/epidemiology , Morbidity , Neoplasms/psychology , Quality of Life , Surveys and Questionnaires , Adult , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Chronic Disease/psychology , Female , Health Status , Humans , Male , Mental Health , Middle Aged , Neoplasms/complications , Predictive Value of Tests , Prevalence , Reproducibility of Results , Self Report , Socioeconomic Factors
16.
Health Psychol ; 36(8): 770-778, 2017 08.
Article in English | MEDLINE | ID: mdl-28639819

ABSTRACT

OBJECTIVE: Cancer caregiving burden is known to vary across the survivorship trajectory and has been linked with caregivers' subsequent health impairment. Little is known, however, regarding how risk factors during long-term survivorship relate to vulnerability to caregivers' health during that period. This study examined effects of caregiving status and depressive symptoms on development of physical morbidity by 5 years postdiagnosis. METHOD: Family caregivers (N = 491; Mage = 55.78) completed surveys at 2 (Time 1 [T1]) and 5 years (T2) after their care recipients' cancer diagnosis. Demographic and caregiving context variables known to affect caregivers' health were assessed at T1. Self-reported depressive symptoms and a list of physical morbid conditions were assessed at T1 and T2. Caregiving status (former, current, or bereaved) was assessed at T2. RESULTS: Hierarchical negative binomial regression revealed that current caregivers at T2 (p = .02), but not those bereaved by T2 (p = .32), developed more physical morbid conditions between T1 and T2 compared with former caregivers, controlling for other variables. Independently, caregivers reporting either newly emerging or chronically elevated depressive symptoms at T2 (ps < .03), but not those whose symptoms remitted at T2 (p = .61), showed greater development of physical morbidity than did those reporting minimal depressive symptoms at both T1 and T2. CONCLUSIONS: Results highlight the roles of long-term caregiving demands and depressive symptoms in cancer caregivers' premature physical health decline. Clinical attention through the long-term survivorship trajectory should be emphasized for caregivers of patients with recurrent or prolonged illness and to address caregivers' elevated depressive symptoms. (PsycINFO Database Record


Subject(s)
Caregivers/psychology , Depression/epidemiology , Stress, Psychological/epidemiology , Adolescent , Adult , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Cost of Illness , Depression/psychology , Female , Humans , Longitudinal Studies , Male , Middle Aged , Morbidity , Neoplasms/psychology , Neoplasms/therapy , Risk Factors , Stress, Psychological/psychology , Surveys and Questionnaires , Young Adult
17.
J Clin Oncol ; 34(6): 611-35, 2016 Feb 20.
Article in English | MEDLINE | ID: mdl-26644543

ABSTRACT

The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. A systematic review of the literature was conducted using PubMed through April 2015. A multidisciplinary expert workgroup with expertise in primary care, gynecology, surgical oncology, medical oncology, radiation oncology, and nursing was formed and tasked with drafting the Breast Cancer Survivorship Care Guideline. A total of 1,073 articles met inclusion criteria; and, after full text review, 237 were included as the evidence base. Patients should undergo regular surveillance for breast cancer recurrence, including evaluation with a cancer-related history and physical examination, and should be screened for new primary breast cancer. Data do not support performing routine laboratory tests or imaging tests in asymptomatic patients to evaluate for breast cancer recurrence. Primary care clinicians should counsel patients about the importance of maintaining a healthy lifestyle, monitor for post-treatment symptoms that can adversely affect quality of life, and monitor for adherence to endocrine therapy. Recommendations provided in this guideline are based on current evidence in the literature and expert consensus opinion. Most of the evidence is not sufficient to warrant a strong evidence-based recommendation. Recommendations on surveillance for breast cancer recurrence, screening for second primary cancers, assessment and management of physical and psychosocial long-term and late effects of breast cancer and its treatment, health promotion, and care coordination/practice implications are made.This guideline was developed through a collaboration between the American Cancer Society and the American Society of Clinical Oncology and has been published jointly by invitation and consent in both CA: A Cancer Journal for Clinicians and Journal of Clinical Oncology. All rights reserved. No part of this document may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without written permission by the American Cancer Society or the American Society of Clinical Oncology.


Subject(s)
Breast Neoplasms/complications , Breast Neoplasms/psychology , Health Promotion , Neoplasm Recurrence, Local/diagnosis , Neoplasms, Second Primary/diagnosis , Population Surveillance , Primary Health Care/methods , Survivors , Anxiety/drug therapy , Anxiety/etiology , Body Image/psychology , Breast Neoplasms/therapy , Cardiovascular Diseases/diagnosis , Cardiovascular Diseases/prevention & control , Cognition Disorders/etiology , Depression/drug therapy , Depression/etiology , Fatigue/etiology , Fatigue/therapy , Female , Genetic Counseling , Hot Flashes/drug therapy , Hot Flashes/etiology , Humans , Life Style , Lymphedema/etiology , Lymphedema/therapy , Medication Adherence , Osteoporosis/drug therapy , Osteoporosis/etiology , Pain Management , Patient Care Planning , Sexual Dysfunction, Physiological/etiology , Sexual Dysfunction, Physiological/therapy
18.
J Consult Clin Psychol ; 82(1): 1-8, 2014 Feb.
Article in English | MEDLINE | ID: mdl-24364792

ABSTRACT

OBJECTIVE: Few studies address the longer term psychological adjustment of family caregivers who provide care to a relative with cancer. This study aimed to document levels of depressive symptoms among caregivers 5 years after their relative's initial diagnosis and to identify psychosocial factors that may prospectively predict caregivers' depressive symptoms at that time. METHOD: Cancer caregivers participated in a prospective longitudinal study (N = 416; mean age = 55, 65.4% female, 92.9% non-Hispanic White). Demographics and caregiving experiences were measured 2 years after their relative's cancer diagnosis at Time 1 (T1). Depressive symptoms were assessed with the Center for Epidemiologic Studies-Depression scale (Radloff, 1977) at T1 and again at 5 years postdiagnosis (T2). By T2, caregivers had emerged into 3 groups: former caregivers whose recipients were now in remission, current caregivers, and bereaved caregivers. RESULTS: Controlling for T1 depressive symptoms, T1 caregiving stress and lack of social support were both significant prospective predictors of greater depressive symptoms at T2 (ps < .02). Independently, bereaved caregivers reported the greatest depressive symptoms both prior to and after the relative's death. Those who were actively caregiving at T2 displayed the largest increase in depressive symptoms from T1 to T2 (p < .001). CONCLUSIONS: The findings highlight the importance of caregiving stress and social support early in caregivership, even for outcomes that emerge 3 years later. Findings suggest that family members who are actively involved in cancer care at the 5-year mark may benefit from programs designed to improve their adjustment to long-term caregiving.


Subject(s)
Adaptation, Psychological , Caregivers/psychology , Depression/diagnosis , Family/psychology , Neoplasms/diagnosis , Stress, Psychological/psychology , Adult , Aged , Depression/epidemiology , Depression/psychology , Female , Health Surveys , Humans , Male , Middle Aged , Neoplasms/psychology , Prevalence , Prospective Studies , Quality of Life/psychology , Severity of Illness Index , Social Support
19.
J Palliat Med ; 16(9): 1040-7, 2013 Sep.
Article in English | MEDLINE | ID: mdl-23905875

ABSTRACT

BACKGROUND AND OBJECTIVE: Even though cancer is the second most common cause of death, little is known about the extent to which family caregivers find meaning and benefit in the loss, and associated demographic characteristics and caregiving experiences. This study addressed this gap in our knowledge. DESIGN AND SUBJECTS: Family caregivers participated in a nationwide survey for cancer caregivers two years after the relative's diagnosis (T1). Of those, 121 were identified as bereaved by five years postdiagnosis (T2) and provided valid data for the study variables. Participants were primarily middle-aged, spouse of the deceased, and bereaved for an average of 2.9 years. MEASUREMENTS: Perceived caregiving stress, caregiver esteem, and patient's cancer severity as indicators of initial caregiving stressors and caregivers' demographics were measured at T1. Social support and time since bereavement as indicators of current resources and benefit finding in bereavement as an outcome were measured at T2. RESULTS: Reports of personal growth from bereavement emerged in multiple domains, although some caregivers were less likely to find benefit: nonspousal caregivers who had greater caregiving stress and spousal caregivers with lack of social support. CONCLUSIONS: Findings suggest that bereavement programs designed to help bereaved caregivers find meaning in the loss should be personalized reflecting individual differences in caregiving stress and caregiver esteem. Such programs should also be tailored differently for spousal versus nonspousal caregivers.


Subject(s)
Bereavement , Caregivers/psychology , Neoplasms/nursing , Social Support , Adaptation, Psychological , Adult , Aged , Aged, 80 and over , Attitude to Death , Female , Humans , Male , Middle Aged , Stress, Psychological/psychology , Surveys and Questionnaires
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