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Keywords:

  • family caregivers;
  • illness trajectory;
  • quality of life;
  • literature review

Abstract

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

BACKGROUND.

Cancer affects not only the quality of life (QOL) of individuals with the disease but also that of their family members and close friends. The impact on various aspects of the family caregivers' QOL is significant throughout the trajectory of the illness. The authors reviewed literature on the QOL of family caregivers at the acute and middle- to long-term survivorship phases as well as the bereavement phase.

METHODS.

By using several databases, the authors searched the literature published in English from 1996 through July 2007. Keywords searched included cancer, carcinoma, family, family member, caregivers, and quality of life. Several criteria were used to guide the literature review: Articles had to be published in refereed journals and had to use rigorous methods, sample, and validated measures.

RESULTS.

The findings suggested that the QOL of family caregivers of individuals with cancer varies along the illness trajectory. This highlights were importance of assessing the ongoing adjustment of the caregivers over time. However, there were few theory-driven studies, and significant gaps remain in the current understanding of the effects of family caregiving beyond the time of diagnosis and treatment.

CONCLUSIONS.

Accumulating evidence has supported the concept that cancer affects not only the patients/survivors but also their family members. However, theoretically and methodologically rigorous research on various aspects of the family's QOL, including not only the psychological but also the physical, spiritual, and behavioral adjustment to cancer in the family, remains sparse. Family-based interventions across the trajectory of the illness also are needed. Cancer 2008. © 2008 American Cancer Society.

Approximately 10.7 million Americans with a history of cancer are alive today,1 and it is estimated that >1 million new cancer cases will be diagnosed in 2007.2 Given the 2005 United States population of >288 million,3 approximately 3.7% of the population personally has experienced cancer. Clearly, cancer has touched a substantial number of individual's lives. We also know that cancer becomes an entire family's concern instead of being solely the problem of the individual diagnosed with the disease.

Informal cancer care carried out by family caregivers requires meeting the survivor's multidimensional needs, including treatment monitoring; treatment-related symptom management; emotional, financial, and spiritual support; and assistance with personal and instrumental care.4 Family caregivers report various problems from their caregiving experiences, including conflict among their social roles, restrictions of activities, strain in marital and family relationships, psychological distress, and diminished physical health.4–10 Although most research in this area has focused on the negative experiences of providing care, several studies also have reported on the benefits of taking care of family members who are ill. Family members have reported benefit finding in providing care,11 post-traumatic growth,12–14 an improved sense of self-worth,15 and increased personal satisfaction.16

The degree to which family caregivers have negative and positive experiences in caregiving may affect their ability to care for the survivor, and that ability also relates to their own quality of life (QOL), which is multidimensional17–19 and includes psychological, mental, social, physical, spiritual, and behavioral components, not only during the time that they are providing care but also throughout the trajectory of the illness. A thorough examination of the various aspects of cancer care and psychosocial characteristics of individuals involved in cancer care across different phases of survivorship is essential, both to enhance the efficacy of caregiving and to optimize the QOL of survivors and their caregivers.7, 20–22

First we reviewed the literature during the acute survivorship phase, beginning around the time of diagnosis and treatment and continuing 1 to 2 years postdiagnosis.23 Then, we reviewed the literature during the middle- to long-term survivorship phases, which begin usually around 2 years postdiagnosis.23 This phase includes remission, recurrence, palliative care, and end-of-life phases. Next, we reviewed the literature during the bereavement phase, which begins for some caregivers when the care recipient dies. Finally, we suggested future directions for family caregiver research.

We searched the literature in several databases, including MEDLINE (Ovid), PsychINFO, PubMed, and CINAHL, for articles published in English between 1996 and 2007. Keywords searched included cancer, carcinoma, family, family member, caregivers, and quality of life. Several criteria were used to guide the literature review. Data-based research articles had to be published in refereed journals and had to use rigorous quantitative or qualitative methods, a representative sample with a sufficient sample size to address the research questions, and validated measures. Although most of the references were taken from studies of caregivers of individuals with cancer, studies about caregivers of individuals with chronic disease other than cancer were included to supplement the research. We excluded studies of family members of patients who had pediatric cancer because of the substantial differences in treatment and concerns involved compared with patients who have adult cancer.

FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

The existing body of work on family caregivers of adult cancer survivors focuses primarily on the caregiver's adjustment during the acute survivorship phase, that is, from the time of diagnosis to 1 to 2 years postdiagnosis. Furthermore, although QOL is a multidimensional construct,8, 24 the most studied aspect of QOL is psychological distress. For example, 1 study demonstrated that 13% of caregivers of patients with advanced cancer met the criteria for a psychiatric disorder.25 Still, most family caregivers do not experience clinically significant levels of depression when providing care.26, 27 However, they have reported levels of depressive symptoms similar to28 or even greater than29 those of the individual with cancer. Compared with husbands of women with no cancer or other chronic or acute illness, husbands of women undergoing chemotherapy for breast cancer reported poorer mental health.30

Demographic and psychosocial characteristics associated with the caregiver's distress (ie, depression, general psychological distress, and cancer-specific distress) include being a woman,29, 31–33 younger age,34, 35 spousal caregivers,36–38 lower socioeconomic status,37, 39 employed,5, 36 and lack of personal and social support.9, 36, 40, 41 Factors specific to the caregiving situation that also are related to caregiver's distress include caregiving burden,42, 43 self-efficacy for caregiving,44 types of care provided,8, 45 and the survivor's functional status.9, 36, 41, 46–48

Studies examining other aspects of the QOL of caregivers are sparse. Limited evidence on the physical health of cancer caregivers suggests that, although their level of physical functioning is comparable to the United States population norm,49 they have impaired physiological reactions in a daily setting50 and in a laboratory setting.51, 52 Likewise, an adverse impact on the caregiver's physical health has been reported among those providing burdensome caregiving.53–57

The spiritual aspect of QOL among caregivers also has been studied inadequately.17 A few studies have indicated that caregivers expressed similar spiritual needs, such as finding meaning, finding hope, and preparing for death with cancer survivors.58 Some work has indicated that the caregiver's spirituality buffered the adverse effect of caregiving stress on mental functioning, whereas it aggravated the effect on physical functioning.49 We identified no studies that examined the behavioral adjustment of family caregivers, namely, engaging in or maintaining certain health lifestyle behaviors, such as healthy diet, exercise, or routine health screening, during this phase of survivorship.

Although the research on family caregivers of adult cancer survivors primarily has provided cross-sectional descriptive information, a small number of longitudinal studies33, 59, 60 indicated that the levels of caregivers' psychological distress were comparable to those of cancer survivors at the time of diagnosis, were lower from 1 month to 2 months postdiagnosis, and became comparable again at 3 months postdiagnosis. A study of colon cancer patients and their spouses, however, demonstrated that spouses reported more emotional distress and less social support than patients at 60 days and at 1 year postsurgery.33

Among hematopoietic stem cell transplantation recipients and their caregivers, caregivers reported higher levels of psychological distress compared with the patients and nonmedical norms at both 6 months and 1 year post-transplantation.29 Among breast cancer patients and their spouses, the patients' and husbands' distress levels at an initial assessment (1–5 years after termination of cancer treatment61; 4 months postoperation62) were the best predictors of distress at a follow-up assessment (9 months after the initial assessment61; 6–8 months after the initial assessment62).

In addition, few intervention studies have demonstrated efficacy in improving the QOL of caregivers from the study entry point. Instead, most intervention studies have demonstrated efficacy in improving caregiving knowledge and skills. For example, interventions designed to educate caregivers about how to seek out medical information,63 identify psychosocial resources,64–66 or manage symptoms46, 67, 68 have helped improve caregivers' knowledge, confidence, and mood. Similarly, interventions designed to help caregivers develop problem-solving skills (eg, Coping with Cancer69, 70 or COPE71, 72) have demonstrated effectiveness in increasing self-efficacy in managing caregiving stress and in reducing psychological distress.

FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

Although these studies examined the different aspects of the QOL of caregivers at the earlier phase of cancer survivorship, few studies to date have examined the QOL of caregivers after the initial turmoil around the time of diagnosis and treatment, namely, at middle- to long-term survivorship. To fill in these gaps, special attention also must be paid to 2 subgroups of caregivers: those whose care recipients (cancer survivors) no longer need consistent help because of disease remission and those caregivers who are providing care actively either because of disease recurrence or progression, or because of a secondary cancer, or for severe late effects or end-of-life care. Their experiences are likely to differ from those of caregivers whose relatives' cancer is in remission. The sections below provide an overview of the literature on these groups of caregivers.

Middle- to long-term survivorship phase with remission

Persistent psychological distress and role adjustment problems among spousal caregivers have been reported approximately 1 year after the completion of cancer treatment, with levels greater than those reported among healthy controls.32, 33, 73, 74 Heightened uncertainty and fear of recurrence remained as a major concern among family members, although patients showed physical improvement and no cancer-related symptoms.73, 75, 76 Sexual problems also have persisted in this phase, although studies have suggested a gradual improvement over time to a level comparable to that of healthy, age-matched controls.77–79

Other studies, however, have observed no lasting or long-term psychological distress,80 a moderately high to normal range of marital satisfaction,78, 81, 82 and reduced disruptions in social relationships, activities, and role conflict that were imposed at the onset of caregiving47, 81 around 2 years postdiagnosis. Pre-existing poor relationship quality80, 83, 84 and negative communication patterns between caregivers and the patient81, 85; caregiver's sociodemographic characteristics, such women (caregivers rather than men)38, 86; carrying out multiple social roles, such as employee or parent5; greater levels of fear of recurrence and less social support73; and patient's medical characteristics, such as certain types of cancer,87 appeared to predict poor post-treatment adjustment of both patients and their family caregivers at the middle- to long-term survivorship phase.

Few studies have documented physical aspects of the QOL of caregiver at this phase. Approximately half of the family members of long-term cancer survivors (an average of 3.5 years after diagnosis) reported that they had health problems, such as heart disease, hypertension, and arthritis.75 The extent to which these morbid conditions are exacerbated by cancer caregiving stress remains unknown. Furthermore, few studies have examined changes in family member's lifestyle behaviors, such as cancer screening, physical activity, and healthy diet, that would reflect the patient's cancer serving as a “wake-up call” to the family member. One cross-sectional study20 reported that older and white families of long-term cancer survivors practiced a high number of health maintenance activities. Other studies, however, indicated that compliance rates with cancer screenings among first-degree relatives of cancer survivors decreased as time elapsed after the relative's diagnosis.88, 89

Although the 5-year survival rate for all cancers has improved in recent years,2 cancer still is perceived as a life-threatening disease. Consequently, the existential apprehensions and spiritual concerns evoked immediately after the diagnosis persist beyond the earlier phase of survivorship. A few studies have indicated that spousal caregivers reported levels of existential experience from their partner's cancer similar to the levels experienced by the patient and also had personal growth experiences years after their partner's cancer diagnosis.90–92 Furthermore, various domains of the experience of benefit finding were associated uniquely with life satisfaction and depression. For example, coming to accept what happened and appreciating new relationships with others were related to greater adaptation. Becoming more empathic toward others and reprioritizing values were related to greater symptoms of depression.14

Few family-based intervention studies have been demonstrated as effective in improving QOL of subgroups of caregivers in this phase. A problem-solving skills intervention benefited more distressed spousal caregivers,70 and a home-care intervention benefited elderly caregivers with physical problems by improving psychosocial functioning 6 months after the intervention. In addition, the home-care intervention benefited the elderly caregivers of patients with advanced-stage cancer, as demonstrated by longer survival compared with a control group.93, 94

Middle- to long-term survivorship phase with recurrence and end-of-life care

Although cancer recurrence reportedly is one of the most stressful events in the course of illness for both patients and their families, few studies have examined the impact of cancer recurrence on the caregivers' QOL.95–97 Caregivers of individuals with recurrent breast cancer have reported as many adjustment problems as the survivors97 and even greater levels of fear of recurrence, less social support, and poorer QOL than survivors.73, 98, 99 These caregivers were troubled by depressive moods and stress in marital relationships.100 Self-efficacy, social support, and family hardiness related positively to the QOL of family caregivers; whereas symptom distress, fear of recurrence, hopelessness, family stressors, and negative appraisal of illness or caregiving related negatively to the QOL of family caregivers.73, 98, 101 Unlike the findings at the acute phase of survivorship, small correlations between recurrent survivors' and their family caregivers' QOL have been reported.102 In an intervention group, family caregivers of women with recurrent breast cancer reported a less negative appraisal of their caregiving role at the end of the intervention sessions compared with the group that received usual care only, but the difference became nonsignificant in 3 months.103

In addition to a cancer survivor's cancer recurrence, family members are likely to be involved actively in end-of-life care for some survivors. At the start of the end-of-life (palliative) care period, which begins after a poor prognosis is given, caregivers report heightened levels of caregiving burden that continue during the entire palliative care period.104 Overall, the caregiving burden is the strongest predictor of caregiver psychological distress, even more than the patient's physical and emotional status.104, 105 However, 1 study indicated that the effectiveness of using certain coping strategies on caregivers' QOL depended on the level of the patient's symptom distress: The use of avoidant coping strategies was related to poorer mental health of caregivers when the patient had low levels of symptoms distress.106

Studies also are sparse that examine aspects of caregivers' QOL other than psychological distress at the middle- to long-term cancer survivorship phase. Decreases in the caregiver's physical health as the patient's illness progresses have been observed.53, 107 Caregivers of patients with advanced-stage cancer have reported severe fluctuations in sleep patterns after the cancer diagnosis that were related to changes in depressive symptoms.108 The poor physical health of caregivers with chronic strain from providing care to a relative with dementia has been associated with adverse changes in health risk behaviors, such as smoking, alcohol consumption, and the use of prescription drugs,109 and with getting inadequate rest, lack of exercise, and forgetting to take prescription drugs to manage their own health conditions.110, 111 It remains unknown, however, whether cancer caregivers at this phase also would display increases in unhealthy behaviors.

Evidence about spiritual concerns among dying patients, their family members, and healthcare providers is salient.112, 113 A broad range of perspectives on illness, death, and dying drawn from diverse religious, philosophical, and cultural orientations has been associated with managing symptoms, coping with illness and loss, and enhancing QOL.114, 115 For example, a greater use of positive religious coping, such as benevolent religious appraisal, was related to better QOL, whereas a greater use of negative religious coping, such as anger at God, was related to poorer overall well being, particularly in psychological aspects of QOL.114, 115

Few intervention studies have demonstrated efficacy in improving the QOL of caregivers at this phase. A family-based psychoeducational program for patient with recurrent breast cancer and their family members (the Family Involvement, Optimistic Attitude, Coping Effectiveness, Uncertainty Reduction, and Symptom Management [FOCUS] program101), which included key components of family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management, was related to higher satisfaction with the program. In addition, the family members in the treatment group were involved in more discussions than those in the control group. A coping skills intervention with family caregivers of hospice patients with cancer was associated with greater improvement in the caregivers' QOL and lower levels of caregiver burden from symptom management and other caregiving tasks at the 1-month follow-up compared with caregivers who received standard hospice care only or who received 3 additional supportive visits.116 Stressed primary family caregivers benefited from home-based palliative care services by experiencing a reduction in psychosocial distress 5 weeks after receiving the services117 and by increasing support and knowledge 20 weeks after receiving the services.118

A large nationwide survey study demonstrated that family members of decedents who received care at home with hospice services were more likely to report a better dying experience, such as satisfaction with overall quality of care, fewer problems in providing medical care, and higher self-efficacy in caring for their loved ones; whereas those at nursing homes or hospitals reported greater unmet needs in symptom amelioration, physician communication, emotional support, and being treated with respect.119, 120

FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

Although survivorship ends at the death of the individual with the disease, the caregiver's life continues. Another group to be considered is bereaved caregivers. The death of a close family member is one of the most stressful of life events121; so, not surprisingly, bereavement in general has been studied widely for several decades.122, 123 Caregiving stress has a negative impact on the psychological and physical health of caregivers, and even may increase mortality.54, 124 Bereavement among family caregivers of cancer patients also has been studied relatively extensively.125, 126 Existing findings, although inconsistent, suggest that poor psychological adjustment to bereavement (ie, depression, anxiety, and complicated grief) relates to numerous demographic and psychosocial factors. These include older age,127–129 women (rather than men),127–129 spouses,129 losing a younger family member,128 past grief experience,127, 130 close bonds to the deceased,130 lack of bereavement coping self-efficacy,131 lower religiousness,132 lack of social support,9, 41 greater number of adverse life events,130 lack of self-efficacy,130, 131 shorter time between diagnosis and death,36 greater severity of the patient's illness,130 perceived caregiving burden,104, 129 and being unprepared for the relative's death.133

Again, other than studies of psychological distress at the bereavement phase, studies examining aspects of the QOL of cancer caregivers are sparse. One study with recently bereaved older individuals indicated that healthy behaviors, such as consistent exercise, monitoring caloric intake, and proper amount of sleep at 6- and 11-months postloss, were related to better QOL at 19-months postloss.134 Among recently bereaved adults (average, 6 months postloss), greater use of religious/spiritual coping was associated with more functional disabilities and fewer outpatient physical healthcare visits at baseline but was not related to health status at the 4-month follow-up.135

Identifying particularly vulnerable family caregivers before the relative's death based on the presence of a dysfunctional family system136, 137 and the demographic characteristics mentioned above has helped in interventions to prevent these caregivers from experiencing severe levels of grief and bereavement symptoms at 4 months,130 6 months,138 and 12 months after the loss.129 In addition, an intervention designed to provide psychosocial support and information to assist in the bereavement process for family members and friends of recently deceased cancer patients has demonstrated its efficacy in improving their QOL at 3 months after completion of the 8-session psychoeducational group.139

RECOMMENDATIONS FOR FUTURE DIRECTIONS

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

The current findings suggest that the QOL of family caregivers of individuals with cancer varies along the illness trajectory. This highlights the importance of assessing the ongoing adjustment of the caregivers over time. There are, however, few theory-driven studies (with some exceptions33, 48), and significant gaps remain in our understanding of the effects of family caregiving beyond the time of diagnosis and treatment.

Conceptual and theoretical frameworks

Although some evidence suggests that different aspects of QOL have different determinants,140 virtually all conceptualizations assert that the individual's QOL is influenced greatly by the extent to which resources are available to that individual. Resources include sociodemographic factors (eg, sex, age, education, income), medical factors (eg, access to the best treatments), psychosocial factors (eg, personal traits, social support), and physical factors (eg, relative absence of medical morbidity). This can be understood broadly by using the stress-coping framework of Lazarus and Folkman141: When a demand, either internal or external, is appraised as exceeding the individual's resources, the demand is perceived as a stressor.142–147 The level of well being or QOL is a consequence of the process of coping with the stressor. This same theory applies to family caregivers of individuals with cancer7, 102 given the impact of cancer both on the patient diagnosed with cancer and on family and friends and the extent to which family and friends are involved in providing care to meet that patient's multidimensional needs.

Furthermore, 2 competing conceptual models have been advanced to account for the long-term effects of caregiving: the wear-and-tear model of caregiving and the adaptational model.4, 7, 148 According to the wear-and-tear model, caregivers experience increasing stress over time and, consequently, become depleted physically, psychologically, and socially. In contrast, the adaptational model suggests that caregivers learn to adapt and accommodate to the role and, hence, do not experience increased negative effects on their well being over time. Empirical studies have supported both models.149, 150 Similarly, studies regarding bereaved caregivers' adjustment can be designed to test 2 opposing hypotheses: One hypothesis posits that exposure to the chronic stresses of caregiving depletes the emotional and social resources of the caregivers and, thus, makes them more vulnerable to negative outcomes when they face another stressor, such as the care recipient's death. An alternative hypothesis assumes that the loss of a care recipient may lead to an improvement in mental and physical health outcomes because of the reduced caregiving burden and because it represents an end to patient suffering.151, 152 Testing these intriguing conceptual models also will advance the caregiving research further when clear definitions of caregiving and family are implemented in the studies and when the multidimensional aspects of QOL as well as disease-specific information (eg, type and stage of cancer, treatments, and time since diagnosis) are measured simultaneously.

Methodological concerns

Concern is increasing about the well being of long-term cancer survivors (≥5 years), as reflected in the National Cancer Institute's Request for Applications on long-term survivors in 2003. That call encouraged researchers to pay more attention to this population. Consequently, evidence has begun to accumulate on the QOL of long-term cancer survivors.23, 24, 140, 153–155 Similar issues arise about long-term well being among cancer caregivers, yet a similar research initiative has not addressed the well being of this group. The existing body of work on family caregivers of cancer survivors focuses primarily on the caregiver's adjustment during the early survivorship phase. Furthermore, some of the major problems in the existing research include small sample sizes (with some exceptions14, 73), cross-sectional study designs (with some exceptions29, 31–33, 156, 157), and examining only survivors' or caregivers' QOL, and not both (with certain exceptions33, 73, 74).

Issues about small sample sizes often involve convenient rather than representative sampling methods and descriptive rather than theory-testing research, which limit the validity and generalizability of findings. The family caregiver's role usually changes as the disease trajectory proceeds. Cross-sectional information prevents a full understanding of the impact of cancer on the family across the trajectory of the illness. For example, recruiting caregivers during treatment often results in an assessment of caregiving in the earlier phase of survivorship; however, because of the cross-sectional nature of the studies, their QOL rarely is assessed beyond the acute treatment phase.8, 33 Similarly, recruiting caregivers at palliative care units usually results in assessment of end-of-life caregiving129, 158 but with caregivers terminating the study at the death of the patient.104 For those studies that followed up after the care recipient's death, the follow-up period typically extended no more than 1 year after the death of the patient,129, 130, 159 with the exception of 1 study that followed bereaved caregivers for 25 months after the patient's death.156

Bereavement researchers in general rarely examine the extent to which providing care before the end-of-life phase affects bereavement outcomes. Even when they do, only relatively short-term outcomes are examined. Similar pitfalls apply to caregiving research. Although researchers have documented the psychological and physical health effects of caregiving,4, 54 they rarely follow the caregivers long enough to assess the effects of the care recipient's death on the caregiver. Three studies, however, have demonstrated the adverse impact of strained caregiving on bereavement adjustment with dementia,152 a disability,160 or mixed illnesses,161 as well as the efficacy of a caregiving skills intervention not only in reducing caregiving burden but also in helping the caregiver recover from a depressed mood after the death of the care recipient.42, 162–164 The extent to which these findings would be replicated with cancer caregivers, however, remains unknown.

Issues about examining survivors' and their caregivers' QOL separately involve the conceptual pitfall of ignoring mutuality in QOL between care recipients and care providers as well as statistical violation of the assumption of independence in unit of analysis. Guided by theory-driven research questions and using proper analytic strategies (eg, Actor Partner Interdependence Model165; Multilevel Modeling166) will help advance our understanding of the impact of cancer on the family.

Understudied populations and topics

Another problem is that, although it is the general consensus that cancer affects not only the individual but also family and friends,167 it remains unknown whether such an impact is equally significant across different ethnic groups. According to United States Census data (2007), Hispanics/Latinos have become the largest minority group (14.4%) followed by African Americans (12.8%), and Asians (4.3%) are the fastest growing ethnic minority. Disparities in cancer incidence and mortality by ethnicity have been documented.168–170 The subsequent disproportionate burden of cancer on families from different ethnic origins and differing rates in caregiving involvement remains unknown. In addition, it is not clear whether the impact of cancer on the family differs across different types of cancer or differs from caregiving for other types of chronic illnesses, such as dementia.

The problems associated with limited knowledge about the QOL of family caregivers also apply to the need to assess the impact of caregiving on caregivers other than spouses of the care recipient, such as an offspring, parent, sibling, or friend. Most of the existing research investigates spousal caregivers. It is estimated that, as the population continues to age, the proportion of spousal care of older individuals decreases as the proportion of adult children as caregivers increases.157, 171, 172 This trend is particularly true for adult daughters, because the caregiving role falls disproportionately on women.173 The few existing studies suggest that adult offspring caregivers, particularly adult daughters, report higher levels of caregiving stress than spouses or other caregivers, caused in part by carrying multiple social roles (the so-called sandwich generation).5, 174 What remains largely unexplored is how the late effects and long-term needs of the individual with cancer affect young caregivers, who have multiple and competing role demands at work and with their own family. Thus, timely attention to this subgroup of caregivers is needed to improve their psychological adjustment as they juggle other social roles while providing care to a family member with cancer.

The aging of the United States population as the Baby Boom generation approaches retirement age means that the number of older caregivers will grow. Although older individuals report better mental health or psychological adjustment in general175 and in the cancer caregiving context in particular,38, 176 caregiving stress has a disproportionately burdensome impact on their physical health.177, 178 The extent to which the acute but intensive nature of cancer caregiving6 or chronic psychological concerns about their relative's cancer recurring could impair the caregiver's immune function or cause premature aging remains unknown.

The longevity of the population also has related to increased numbers of cancer patients who survived the initial cancer. Now, families are more likely to confront a second cancer, recurrence of the initial cancer, and severe long-term side effects of cancer treatment. Only recently have a few studies focused on caregivers of those with recurrent disease, whereas the impact of a second cancer or late side effects on the caregiver remains unknown.

In addition, literature on the financial and economic burden that families bear as caregivers is sparse. A few studies have documented family caregivers' losses of employment benefits and health insurance because of their involvement with cancer care,179–181 but this information is limited to the acute phase of survivorship. The economic ramifications for the family beyond the time of diagnosis and treatment to manage survivors' serious late effects, related financial burden from out-of-pocket cost, and disability of the survivor warrant future studies.

Furthermore, although it has been explored rarely to date, examining the behavioral adjustment of family caregivers has significant implications. In 1930, approximately 20% of individuals who were diagnosed with cancer survived for ≥5 years.182 In recent years, the proportion has reached approximately 65%.2 These encouraging changes during the past few decades are attributed to a plateau in incidence rates, successful treatments, and effective approaches to detecting cancer earlier.183 These factors, important in the population at large, are equally important for caregivers. Indeed, the need for proactive health-relevant behaviors should be especially salient to these individuals, because they have had direct experience with cancer in a loved one.

Nonetheless, family caregivers may differ considerably in their level of attention to these issues, and determining which variables influence those behaviors could increase cancer-preventive behaviors among this at-risk population. For example, early detection of cancer has contributed to reduced cancer mortality.184 Adhering to the cancer screening guideline is particularly important for individuals at increased risk of developing cancer, yet research has indicated that first-degree relatives of cancer survivors are substantially underscreened.185–188 Similarly, an estimated 33% of cancer deaths that occur among nonsmokers are avoidable through modification of the individual's diet and physical activity habits,189 highlighting the importance of lifestyle behaviors, such as healthy diet190 and physical activities,20, 191–194 as promising strategies to prevent cancer. A systematic approach is needed to understand the current practice of and beliefs about cancer-preventive behaviors among family members of cancer survivors, to identify barriers and facilitators of such behaviors, and eventually to develop effective programs to enhance cancer-preventive behaviors targeted for this population.

Interventions

The current findings have implications for helping clinicians identify caregivers who are at risk for subsequent problems and provide interventions through which the caregivers may avoid experiencing severe depression resulting from caregiving or complicated grief after the loss of the care recipient. Despite the potential benefit, few psychosocial and behavioral interventions to enhance cancer caregivers' QOL have been developed. Interventions that emphasize education and information about medical treatment and disease processes,63, 67 focus on improving problem-solving skills,70, 72 and provide information along with psychological counseling46, 64, 65, 102 appear to be successful in decreasing caregiving stress and improving the QOL of caregivers as well as promoting survivors to return to their usual, healthy life (see Pinquart and Sorensen195). The inclusion of family members in such psychosocial interventions and delivering the intervention to targeted family subgroups may prove beneficial in minimizing the adverse impact of cancer and helping individuals who are touched by cancer maximize the positive experiences from cancer in the family.

CONCLUSION

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES

Accumulating evidence has supported the concept that cancer affects not only the patients/survivors but also their family members. Our review of the literature on the QOL of family caregivers at the acute and middle- to long-term survivorship phases and in the bereavement phase provided solid evidence about the psychological impact of cancer on family caregivers. However, theoretically and methodologically rigorous research on various aspects of the family's QOL, including physical, spiritual, and behavioral adjustment to cancer in the family, remains sparse. Family-based interventions across the trajectory of the illness also are needed.

REFERENCES

  1. Top of page
  2. Abstract
  3. FAMILY CAREGIVERS' QOL AT THE ACUTE SURVIVORSHIP PHASE
  4. FAMILY CAREGIVERS' QOL AT THE MIDDLE- TO LONG-TERM SURVIVORSHIP PHASE
  5. FAMILY CAREGIVERS' QOL AT THE BEREAVEMENT PHASE
  6. RECOMMENDATIONS FOR FUTURE DIRECTIONS
  7. CONCLUSION
  8. Acknowledgements
  9. REFERENCES