Quality of life of family caregivers 5 years after a relative's cancer diagnosis: follow-up of the National Quality of Life Survey for Caregivers

Department of Psychology, University of Miami, 5665 Ponce de Leon Blvd., Coral Gables, FL 33124-0751, USA.
Psycho-Oncology (Impact Factor: 2.44). 03/2012; 21(3):273-81. DOI: 10.1002/pon.1888
Source: PubMed


Although cancer has been considered as a chronic disease for those diagnosed, the long-term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5-year follow-up nationwide QOL Survey for Caregivers. Demographics and 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 5 years post-diagnosis.
Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post-diagnosis.
The findings help to increase evidence-based awareness of the long-term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL.

Download full-text


Available from: Youngmee Kim, Dec 31, 2015
  • Source
    • "At baseline (Time 1 [T1]), survivors were 2.2 years (SD ϭ 0.6 years) postdiagnosis. Follow-up data collection (Kim et al., 2012) at 5 years postdiagnosis (T2) involved three surveys: (a) for caregivers whose relatives with cancer were in remission (Main Survey), (b) for caregivers who were actively providing cancer-related care to the index case at the time of T2 survey completion (Current Caregiver Survey), and (c) for caregivers whose index case had passed away by T2 (Bereaved Caregiver Survey). A total of 416 caregivers provided complete data for the study variables at both T1 and T2. "
    [Show abstract] [Hide abstract]
    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.
    Full-text · Article · Dec 2013 · Journal of Consulting and Clinical Psychology
  • Source
    • "Cancer caregiving is generally viewed as one of the most stress-inducing caregiving challenges faced by family members [3], which typically requires intensive involvement of family caregivers to help administer complex medical regimens (e.g., pain management) in addition to providing assistance with daily activities. Additionally, the demand for informal care varies greatly by patient stage at diagnosis and phase of treatment [2, 4]. Patients newly diagnosed or with recent cancer treatment were more likely to receive informal caregiving compared to those without cancer or recent cancer treatment [5, 6]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Informal care plays an important role in the overall care for people with cancer. This study estimates lost productivity and informal caregiving and associated costs among partner caregivers of localized prostate cancer patients within 1 year after diagnosis. We applied data from the Family and Cancer Therapy Selection study, a three-wave self-administered survey among patients diagnosed with localized prostate cancer and their partner caregivers in multiple clinics in the USA. Time spent was measured by the sum of working hours lost, informal caregiving hours performed, and hours spent on household chores. The national median income for women 55 years or older was used to calculate costs associated with the time spent using the opportunity cost method. Descriptive and bivariate analyses were conducted. The average working hours decreased from 14.0 h/week (SD = 17.6) to 10.9 h/week (SD = 15.9), without a significant change in responsibility/intensity at work. The mean annual time spent on informal caregiving and household chores was 65.9 h/year (SD = 172.4) and 76.2 h/year (SD = 193.3), respectively. The mean annual economic burden among partner caregivers was US$6,063 (range US$571-US$47,105) in 2009 dollars accounted for by a mean of 276.2 h (range 26-2,146) in the study sample. The time spent on informal caregiving and household chores varied by patient and caregiver characteristics. Pilot estimates on non-medical economic burden among partner caregivers (spouses) during the initial phase of the treatment provide important information for comprehensive estimation of disease burden and can be used in cost-effectiveness analyses of prostate cancer interventions.
    Full-text · Article · Aug 2013 · Supportive Care in Cancer
  • Source
    • "Earlier studies have shown that the Physical Functioning scale, which measures limitations in performing daily activities, has a strong association with aging [23,35]. Our results regarding poorer scores for physical HRQOL in older family members verify results of Kim and colleagues [13,36]. Analyses at item level in this study revealed that age explained the decreased HRQOL, especially for items that reflect more strenuous physical activities in the physical dimension. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified. The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis. Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections. No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL. It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.
    Full-text · Article · Jul 2012 · Health and Quality of Life Outcomes
Show more