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

Background. 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. Results. 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. Conclusions. 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. Copyright © 2010 John Wiley & Sons, Ltd.     

Quality of life of family caregivers at 2 years after a relative's cancer diagnosis

Purpose: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. Methods: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post‐diagnosis of their relatives' cancer. Results: Family caregivers reported normal levels of QOL after 2 years post‐diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care‐recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post‐diagnosis. Conclusions: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice. Copyright © 2009 John Wiley & Sons, Ltd.     

Marital satisfaction of advanced prostate cancer survivors and their spousal caregivers: the dyadic effects of physical and mental health

Objective: Coping with the physical and mental side effects of diagnosis and treatment for advanced prostate cancer (APC) is a challenge for both survivors and their spousal caregivers. There is a gap in our current understanding of the dyadic adjustment process on marital satisfaction in this population. The current study sought to: (1) document levels of physical and mental health, and marital satisfaction, and (2) evaluate the relationship between physical and mental health with marital satisfaction in this understudied population. Methods: APC survivors who had undergone androgen deprivation therapy within the past year and their spousal caregiver participated in the study (N = 29 dyads). Physical and mental health was assessed using the MOS SF‐36 Health Survey and marital satisfaction was evaluated using the Dyadic Adjustment Scale. Results: The Actor‐Partner Interdependence Model revealed strong relations between physical and mental health with marital satisfaction for both survivor and caregiver (actor effects). Furthermore, caregiver physical and mental health was related with the survivor's marital satisfaction (partner effect). Conclusions: Levels of mental health and marital satisfaction were comparable to community‐based and prostate cancer samples, while physical health was higher. Marital satisfaction between APC survivors and their spousal caregivers may be influenced by both physical and mental health functioning. In particular, APC survivor functioning may affect his marital satisfaction as well as his spousal caregiver's. This has implications for psychosocial interventions for APC dyads. Further evaluation of the complex nature of survivor/caregiver dyadic adjustment in dealing with APC is necessary. Copyright © 2010 John Wiley & Sons, Ltd.     

Needs assessment of family caregivers of cancer survivors: three cohorts comparison

Purpose/Background: Caregivers' quality of life (QOL) may be maximized when the caregivers' needs in the context of cancer care are met. Therefore, determining what needs are not being satisfied for family caregivers should be the first step in the development of programs designed to enhance caregivers' QOL. Method: The 28‐item Needs Assessment of Family Caregivers‐Cancer (NAFC‐C) scale was developed and validated with caregivers at three different survivorship phases: at 2 months (n=162), 2 years (n=896), and 5 years (n=608) post‐diagnosis. Results: The NAFC‐C helped to identify caregivers whose needs were less likely to be met, based on their age and ethnicity. Furthermore, the extent to which caregivers' psychosocial needs were not being met was a consistent and strong predictor of poor mental health across all phases of survivorship, beyond the effects of a host of demographic characteristics. Conclusion: Findings suggest that interventions designed to help caregivers manage their own emotional distress as well as the survivors' distress, find meaning in the cancer caregiving experience, and foster supportive familial relationship will benefit caregivers by improving their QOL, not only during the time of diagnosis and treatment but years after. Copyright © 2009 John Wiley & Sons, Ltd.     

Family resilience and psychological well‐being among Chinese breast cancer survivors and their caregivers

Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience and psychological well‐being among Chinese breast cancer survivors and their caregivers. Therefore, this study aimed to examine the direct and indirect relationships between family resilience, breast cancer survivors' post‐traumatic growth (PTG), quality of life (QOL), and their principal caregivers' caregiver burden. A total of 108 breast cancer survivors/principal caregivers pairs completed a cross‐sectional questionnaire survey in a comprehensive cancer of a public hospital in Shandong Province, China. The structural equation modelling (SEM) results showed that family resilience had direct and indirect effects on QOL and caregiver burden, and it was positively related to the PTG of the survivors. The survivors' PTG was positively related to their QOL, and their QOL was negatively associated with caregiver burden. Therefore, a better understanding of how family resilience contributes to PTG and QOL of the survivors and caregiver burden could help clinicians tailor interventions to enhance interventions aimed at improving both survivors' and caregivers' well‐being.     

The impact of cancer and quality of life for post‐treatment non‐Hodgkin lymphoma survivors

Objective: Recent work suggests that perceptions of the impact of cancer on survivors' lives are associated with physical and mental health and quality of life (QOL) outcomes. This study examines the association between the Impact of Cancer Version 2 Scales (IOCv2) and these outcomes in a large sample of survivors of adult non‐Hodgkin lymphoma (NHL). Methods: Participants completed a mailed survey to assess physical and mental health (SF‐36), cancer‐specific QOL (FACT‐G) and perceived impact of cancer (IOCv2). Hierarchical multiple regression models, in which demographic, clinical, psychosocial and IOCv2 measures were added sequentially, were employed to evaluate their contribution to explain variance in SF‐36 and FACT‐G scores. Results: A total of 652 post‐treatment NHL survivors participated. Survivors with comorbidities and negative appraisals of life threat and treatment intensity reported worse physical and mental health and QOL (all p<0.05). After controlling for demographic and clinical characteristics, younger respondents reported better physical but worse mental health and QOL (all p<0.01). Lower IOCv2 Negative Impact (all p<0.001) and higher Positive Impact (all p<0.05) scores were associated with better physical and mental health and QOL after controlling for demographic, clinical and psychosocial characteristics. Conclusions: Findings suggest that perceptions of cancer's impact on survivors' lives may influence or be influenced by health status and functioning and QOL. Longitudinal research is needed to establish causality, which could lead to the development of interventions targeting survivors' impact of cancer concerns, and ultimately to the enhancement of overall health and QOL. Copyright © 2010 John Wiley & Sons, Ltd.     

Comparison of patient and family assessments of quality of life of terminally ill cancer patients in Japan

Objective: This study examined the extent and the nature of agreement on health‐related quality of life (QOL) assessments between terminally ill cancer patients and their primary family caregivers in Japan, using a multidimensional QOL instrument including psychosocial and spiritual domains. Methods: The Functional Assessment of Chronic Illness Therapy‐Spiritual well‐being questionnaire was used to assess patients' QOL. Study subjects were inpatients of a palliative care unit (PCU), outpatients who applied for admission to the PCU, and their primary family caregivers. Results: QOL ratings were obtained from 102 of 197 eligible patient–caregiver dyads. A moderate level of patient–family concordance on patients' overall QOL as well as families' underestimation of patients' QOL were observed. Families reported on observable domains of patients' QOL more reliably and assessed subjective aspects, such as psychospiritual concerns less accurately. Families tended to underrate the patients' social aspect of QOL, whereas most patients gave the highest rating on support from their families. The spiritual domain, particularly regarding faith, showed the least agreement. The size of the systematic bias between patient and family assessments on the patients' QOL was moderate (>0.50). Conclusions: Families' limited ability to assess psychosocial and spiritual aspects of patients' QOL may suggest the need for better approaches or measures to assess these aspects of a patient's life. The systematic bias was larger than in earlier studies. Further investigation is needed to identify factors affecting patient–family discord on QOL assessments to guide effective interventions to enhance patient–caregiver agreement. Copyright © 2010 John Wiley & Sons, Ltd.     

Impact of cancer patients' disease awareness on their family members' health‐related quality of life: a cross‐sectional survey

Background: Conflicting results exist concerning disease knowledge and patients' quality of life (QOL) while there is very limited information concerning the impact of awareness on caregivers' health‐related quality of life. The aim of this study was to explore the influence of disease awareness on both cancer patients and their caregivers during the period of chemotherapy. Materials and Methods: Two hundred and twelve cancer patient–caregiver dyads completed the QOL SF‐36 instrument on the day of chemotherapy. Hierarchical multiple linear regression analysis was performed. Results: Physical component parameters were significantly higher in the family members (p<0.001), while their mental component was lower than cancer patients. Younger patients, females, and of higher educational status were more frequently aware of their disease status while patients with gastrointestinal cancer were more likely to be unaware. Disease knowledge seems to exert a negative influence on patients' physical and mental parameters while lack of awareness affects adversely caregivers' vitality, social function, emotional role, and mental health. Multiple regression analysis confirmed disease awareness affected reversely patients' and caregivers' mental QOL while the counter‐influence of the dyad was revealed. Conclusions: A holistic approach to cancer management should be followed. Patient's treatment is the major medical concern, but health system and professionals should be involved in the mental and physical support of caregivers as well. Tailored interventions that focus on the support of the dyad patient–caregiver should be developed. Copyright © 2010 John Wiley & Sons, Ltd.     

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi‐structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well‐being [36‐item short‐form health survey (SF‐36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2–20 years post‐treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision‐making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF‐36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer‐specific information may alleviate difficulties and improve health and well‐being. Specific concentration should be given to the development and delivery of information support for caregivers of post‐treatment cancer survivors.     

The impact of cancer and quality of life for long-term survivors

This study reports on health status and quality of life (QOL) outcomes in long‐term cancer survivors, and potential correlates including cancer type, age at diagnosis, health status, and key sociodemographic variables. Method: One hundred and ninety‐three cancer survivors 5–10 years post‐diagnosis completed a mailed survey assessing physical and mental health status, QOL, post‐traumatic growth, and impact of cancer (IOC). Results: Respondents were comparable to population norms on physical and mental health status. After controlling for sociodemographic and medical status variables, older respondents reported better overall QOL (p=0.004) and mental health (p<0.001), but worse physical health (p=0.04). Survivors reporting low income (p=0.02) and comorbidities (p=0.003) indicated worse physical functioning. A higher negative IOC score was associated with worse physical functioning (p<0.0001), worse mental health (p<0.0001), and lower overall QOL (p<0.0001). A higher positive IOC score was associated with better mental health (p=0.0004) and better overall QOL (p=0.005). Conclusion: Perceptions of how cancer has affected survivors' lives in both positive and negative ways may influence, or be influenced by, their functional abilities and QOL. Copyright © 2007 John Wiley & Sons, Ltd.     

晚期乳腺癌患者年龄和生存质量对其家庭照顾者生存质量的影响

目的：探讨晚期乳腺癌患者年龄及生存质量对其家庭照顾者的生存质量的影响。方法选取130例晚期乳腺癌患者及其130名家庭照顾者为研究对象,家庭照顾者完成照顾者生活质量指数-癌症表（CQOLC）问卷调查,所有的患者和家庭照顾者完成线性模拟自评量表（LASA）调查评估生活质量（QOL）,心境量表（POMS）评估心理状态。结果年龄≥65岁的晚期乳腺癌患者其照顾者心理健康、情感健康、精神健康、社会支持、总POMS分和总CQOLC分均高于年龄﹤65岁的患者照顾者,差异均具有统计学意义（P﹤0.05）。患者LASA中总的QOL评分﹥50分的晚期乳腺癌患者照顾者总QOL分、心理健康、身体健康、情感健康、精神健康、总POMS分和总CQOLC分均高于LASA中总的QOL评分≤50分的患者照顾者,差异均具有统计学意义（P﹤0.05）。结论晚期乳腺癌患者年龄≥65岁、生存质量高,其相应的家庭照顾者生存质量亦高。     

Development and usability testing of a web‐based self‐management intervention for oral cancer survivors and their family caregivers

Oral cancer (OC) survivors experience debilitating side effects that affect their quality of life (QOL) and that of their caregivers. This study aimed to develop and evaluate a dyadic, web‐based intervention to improve survivor self‐management and survivor/caregiver QOL. A qualitative needs assessment (semi‐structured interviews) with 13 OC survivors and 12 caregivers was conducted to discern information and support needs as well as preferences regarding website features and tools. Results using Grounded Theory analysis showed that OC survivors and caregivers: (1) want and need practical advice about managing side effects; (2) want to reach out to other survivors/caregivers for information and support; and (3) have both overlapping and unique needs and preferences regarding website features. Usability testing (N = 6 survivors; 5 caregivers) uncovered problems with the intuitiveness, navigation and design of the website that were subsequently addressed. Users rated the website favourably on the dimensions of attractiveness, controllability, efficiency, intuitiveness and learnability, and gave it a total usability score of 80/100. Overall, this study demonstrates that OC survivors and caregivers are interested in using an online programme to improve QOL, and that providing tailored website content and features based on the person's role as survivor or caregiver is important in this population.     

Cancer survivors exhibit a different relationship between muscle strength and health‐related quality of life/fatigue compared to healthy subjects

We investigated the difference in relationship between muscle strength and quality of life (QOL)/fatigue in long‐term cancer survivors and healthy subjects. Thirty‐six cancer survivors and 29 healthy subjects were assessed for body composition and bone status at the calcaneus using the Osteo Sono Assessment Index. Muscle strength was evaluated via handgrip and knee extensor strength. Health‐related QOL was assessed using the Medical Outcome Study 36‐item Short‐Form Health Survey. Fatigue was measured using the brief fatigue inventory. Cancer survivors exhibited lower QOL scores in the physical functioning, physical role function, bodily pain and general health domains (p < .05). Grip and knee extension muscle strength in cancer survivors was positively correlated with the physical function and bodily pain of QOL (p < .05). The usual fatigue subscale score was only significantly higher in cancer survivors than in healthy subjects (p < .05). However, there were no correlations between muscle strength and fatigue in cancer survivors. Our results showed that muscle strength was an important factor for improving QOL in cancer survivors. We believe that the findings of this study will be relevant in the context of planning rehabilitation for cancer survivors.     

A mixed-methods exploration of the quality of life of Chinese breast cancer survivors

ABSTRACT

Quality of life (QOL) in cancer survivorship is a multidimensional and subjective concept, which represents the personal sense of the physical, psychological, social, and spiritual consequences of cancer diagnosis and its treatment. This mixed method study aimed to explore the QOL of Chinese breast cancer survivors. Participants were recruited from a cancer self-help organization in the central area of China. QOL was assessed using the QOL–Cancer Survivor Scale and subsequently elicited by in-depth interviews. Results showed that participants had good overall QOL but with unfavorable aspects in psychological and social well-being. Interview data revealed that participants seldom attended spiritual activities. Instead, they actively reconnected with their “self” to create a positive meaning from their cancer experience. Understanding how Chinese breast cancer survivors perceive QOL is important for health professionals to address survivorship in this population.     

Effects of psychological distress on quality of life of adult daughters and their mothers with cancer

Introduction: As the population continues to age, adult daughters are more likely to be involved in caregiving. Given the fact that sharing emotional experiences is common in female relationships, (dis)similarity between mothers with cancer and their adult caregiving daughters is expected. However, the extent to which the (dis)similarity in psychological distress influences the quality of life of each person remains unknown. Method: This study aims at addressing this concern, using a total of 98 mother–daughter dyads participating in the American Cancer Society's Study of Cancer Survivors‐I and Quality of Life Survey for Caregivers. Results: Using the Actor Partner Interdependence Model, the results showed that although each person's psychological distress is the strongest predictor of their own quality of life, a mother's distress also plays a significant role in the daughter's quality of life. Specifically, when mothers experienced greater levels of psychological distress, the daughters reported better mental health but poorer physical health. Conclusions: Our findings on the disproportionately strong association between psychological distress of mothers with cancer and their adult caregiving daughters' quality of life suggest that caregiving daughters may benefit from programs designed to assist them to cope better with their mothers' psychological distress when both are living with cancer. Copyright © 2008 John Wiley & Sons, Ltd.     

End-of-life care in Italy: personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC)

Objective: This study aims at describing the emotional and practical experience of a representative sample of Italian non‐professional caregivers when caring for a terminally ill family member and is part of the ‘Italian Survey of the Dying of Cancer’, which involved 2000 adult cancer deaths representative of the whole country. Methods: Information on patients' experience was gathered from non‐professional caregivers by an interview. A specific question was asked about the caregivers' emotional and practical experiences while assisting a terminally ill relative. A content analysis of the open question on caregivers' perceptions was performed on transcribed answers. Three researchers independently generated categories. Subsequently, areas where they differed were reconsidered and an interpretation was agreed upon. Results: Valid interviews were obtained from 1231 non‐professional caregivers. Answers were classified according to the perception of the experience as positive (33.1%), negative (65.1%) or neutral (1.8%). Conclusion: Assisting a family member with cancer in his/her last three months of life is a very strong physical and mental stress for the caregiver. In some cases, this experience is nevertheless perceived as an evolution chance. Health‐care providers should need to develop programs to ensure that family caregivers' needs for information and support are given great importance. Copyright © 2008 John Wiley & Sons, Ltd.     

Health status and quality of life among non‐Hodgkin lymphoma survivors

BACKGROUND:

A growing body of evidence suggests that long‐term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non‐Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease‐free short‐term survivors (STS) (2‐4 years postdiagnosis) and long‐term survivors (LTS) (≥5 years postdiagnosis).

METHODS:

Eligible survivors completed a mailed survey with validated measures, including physical and mental health status measured with the Medical Outcomes Study 36‐item Short Form, cancer‐related QOL, the Functional Assessment of Cancer Therapy‐Lymphoma module, and self‐reported impact of cancer. Other data were collected to examine as correlates.

RESULTS:

Seven hundred sixty‐one survivors identified from 2 North Carolina cancer registries participated. The average survivor was 10.4 years postdiagnosis (range, 2‐44 years postdiagnosis) and was age 62.7 years (range, 25‐92 years). Survivors with active disease (n = 109) demonstrated worse physical and mental health functioning, worse QOL, and less positive and more negative impacts of cancer compared with disease‐free survivors (n = 652; all P ≤ .01). No significant differences were observed between STS and LTS.

CONCLUSIONS:

Although survivors with NHL who had active disease reported more negative outcomes compared with off‐treatment survivors, the length of time after diagnosis did not appear to matter with regard to outcomes for STS or LTS. In addition, mixed results from comparisons with general population norms suggested the need for supportive care for this diverse survivorship group. Cancer 2009. © 2009 American Cancer Society.     

Spirituality as a core domain in the assessment of quality of life in oncology

Objectives: This study investigated including spiritual wellbeing as a core domain in the assessment of quality of life (QOL) in an Australian oncology population. Methods: Four hundred and ninety consecutive cancer patients with mixed diagnoses completed the Functional Assessment of Chronic Illness Therapy—Spiritual Well‐Being (FACIT‐Sp) and the Mental Adjustment to Cancer (MAC) scale. Results: Overall, 449 patients completed assessments. Spiritual wellbeing demonstrated a significant, positive association with QOL (r=0.59), fighting spirit (r=0.49) and a significant, negative relationship with helplessness/hopelessness (r=?0.47) and anxious preoccupation (r=?0.26). A hierarchical multiple regression showed spiritual wellbeing to be a significant, unique contributor to QOL beyond the core domains of physical, social/family, and emotional wellbeing (R² change=0.08, p=0.000). However, high levels of meaning/peace or faith did not appear to significantly impact patients' ability to enjoy life despite chronic symptoms of pain or fatigue, making the current results inconsistent with other findings. Conclusion: Results lend further support to the biopsychosocialspiritual model. By failing to assess spiritual wellbeing, the ‘true’ burden of cancer is likely to be miscalculated. However, at this stage, the exact clinical utility of spirituality assessment is unclear. Copyright © 2008 John Wiley & Sons, Ltd.     

Common‐sense beliefs about cancer and health practices among women completing treatment for breast cancer

Objective: Following the end of adjuvant treatment, breast cancer survivors must cope with uncertainty related to the possibility of recurrence and the loss of the ‘safety net’ treatment provides. This study examined breast cancer survivors' efforts to manage uncertainty by making lifestyle changes, such as improvement in diet and exercise. We further investigated the role of women's common‐sense beliefs about their cancer, as described by Leventhal's self‐regulation theory, in explaining post‐treatment changes. Method: At 3 weeks and 3 months post‐treatment, 79 women who received adjuvant chemotherapy and/or radiation therapy for stages 0–III breast cancer (mean age=55 years) completed assessments of changes in health practices and other behaviors. Participants also completed measures of beliefs about the causes, course, personal control, and consequences of their cancer. Results: Survivors reported behavior changes directed toward improving physical, emotional, and spiritual well‐being. Results further indicated that women who believed their cancer had more severe consequences and those who attributed the development of cancer or the prevention of recurrence to health behaviors or stress were most likely to report improvement in diet or physical activity and reduction in alcohol use or stress. Conclusions: Findings suggest that breast cancer survivors are poised to make lifestyle changes after treatment ends, creating an opportune time for health promotion interventions. Understanding women's cancer beliefs could help guide the development of tailored, proactive interventions to improve the health and well‐being of breast cancer survivors. Copyright © 2010 John Wiley & Sons, Ltd.