Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients

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

American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/136493/1/caac21319_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/136493/2/caac21319-sup-0001-suppinfo1.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/136493/3/caac21319.pd

Bereaved Family Cancer Caregivers’ Unmet Needs: Measure Development and Validation

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 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

Prevalence and Predictors of Depressive Symptoms Among Cancer Caregivers 5 Years After the Relative's Cancer Diagnosis

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

Effects of Caregiving Status and Changes in Depressive Symptoms on Development of Physical Morbidity Among Long-Term Cancer Caregivers

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

Finding Benefit in Bereavement among Family Cancer Caregivers

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

Preloss Spirituality Predicts Postloss Distress of Bereaved Cancer Caregivers

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. This study examined this question with regard to bereavement-specific and general distress in cancer caregivers. 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. 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). 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

Role of family caregivers' self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement

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. 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. 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. 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

Passages of cancer caregivers' unmet needs across 8 years

BACKGROUND. Identifying and addressing the caregivers’ unmet needs have been suggested as a mean of reducing their distress and improving quality of life. However, needs of family cancer caregivers are complex in the period of long-term survivorship in particular, as the needs may diverge as does the patients’ survivorship trajectory, which this study investigated. METHODS. Family cancer caregivers completed a prospective longitudinal surveys at 2, 5, and 8 years post-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 three assessments. RESULTS. Caregivers’ unmet needs at 8 years were attributable to the passages of the caregiving status as their patients’ illness trajectory diverges from being initially a care recipient. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during the long-term survivorship was related to various domains of unmet needs at 8 years (t> 2.35, p 2.50, p 37.51, p<.001). CONCLUSIONS. Caregiving status trajectory over 8 years was a substantial predictor of family caregivers’ unmet needs at the 8 year mark. Findings provide guidance for development of evidence-based programs and patient/caregiver-centered care policies to reduce the unmet needs of family caregivers many years after their relatives’ diagnosis reflecting the diverse trajectories of cancer caregivership