Family Caregivers Research

“An individual doesn’t get cancer, a family does.” -- Terry Tempest Williams

Approximately 17 million Americans with a history of cancer are alive today. Three out of four families have at least one member who is a cancer survivor. We know that a cancer diagnosis affects the entire family. Clearly, large numbers of Americans have been affected by a cancer diagnosis personally or in the family, yet only recently have studies begun to examine the impact of cancer on the family. We need to understand more about the effects of cancer on diverse aspects of the quality of life of family members, particularly after treatment is completed.

In 2002, the Behavioral Research Center initiated the largest quality of life study of caregivers of cancer survivors to date: the American Cancer Society National Quality of Life Survey for Caregivers. This study is providing information needed to develop better support services for family caregivers and cancer survivors: we are learning who the caregivers are, how they cope with the stress related to the cancer in the family, and what factors improve or impair their quality of life. This national study helps us describe what it is like to be a family caregiver of a person with cancer, and provides needed information to researchers, policymakers, and those designing programs to help the families and other caregivers of those diagnosed with cancer.

This project includes three surveys mailed to the same group of caregivers over a period of time. The first survey, mailed out between 2002 and 2005, was completed by 1,635 caregivers. The findings from this survey have provided us with a clearer picture of what caregivers experience about 2½ years after the person they are caring for is diagnosed with cancer. The second survey, mailed out beginning in 2005, was completed by 1,219 caregivers and focused on the caregivers’ daily experiences about 5 years after the cancer diagnosis. We learned that approximately 10% of the caregivers were actively providing care to the cancer survivor 5 years after the initial cancer diagnosis, and about 10% had lost their family member to cancer. The third survey, mailed out beginning in 2008, assesses caregivers’ healthy lifestyle behaviors and long-term quality of life approximately 8 years after their relative’s cancer diagnosis. So far, the third survey has been completed by 947 caregivers.

Here are some examples of what we have learned from these surveys:

• Caregivers who confront the challenge of caring for a person with cancer gain a sense of personal strength and new possibilities through the experience. Accepting new possibilities of emotional and spiritual growth, appreciating new relationships with others, and maintaining core priorities in life are key elements in thriving when caregivers are faced with the challenges of cancer in their family.

• We compared breast cancer survivors and their husband caregivers with prostate cancer survivors and their wife caregivers, and found that the extent to which women psychologically adjust to the cancer experience situation (regardless of whether the wife is a survivor or caregiver) plays a key role not only on her own quality of life, but also that of her spouse.

• Approximately two years after their loved one’s cancer diagnosis, caregivers were spending about eight hours a day for almost 14 months providing care. Understandably, those who cared for family members or friends with a more advanced stage of cancer, or who had passed away prior to survey completion, reported the longest hours per day providing care. The value of their time varied based on their loved one’s cancer, with the highest time cost for lung ($72,702), ovarian ($66,210), non-Hodgkin lymphoma ($59,613), and kidney ($53,541) cancer patients, and the lowest time cost for colorectal ($45,699), prostate ($44,885), and breast ($38,334) cancer patients.

• Almost 20% of the caregivers were adult daughters of the patient. We have found that daughters providing care to their mothers experience similar levels of distress as their mothers.

• Many caregivers reported that they needed help dealing with their loved one’s emotional distress both at the 2-year and 5-year mark after diagnosis. They also needed help dealing with their own emotional distress during these time points.

• Relationship quality and reasons for providing care are important elements in the picture of psychological well-being of spousal cancer caregivers. For example, caregivers who feel close to their partner and who rely on others experience less difficulty in providing care. Husband caregivers who provide care because they need to in order to feel worthy, report less satisfaction with life and more depression.

• Family members who were able to find meaning and peace in the cancer experience reported better mental health. In addition, they had better physical health when their loved one found more meaning, peace, and faith from the cancer experience, and vice versa.

• When the patient was first diagnosed with cancer the caregiver’s overall quality of life suffered because they were trying to adjust to their new role. During the initial, intensive phase of caregiving, many experienced symptoms of depression and their physical health diminished. Approximately three years after the patient’s diagnosis and treatment began, many of caregivers were fearful that his or her cancer would return. For some, that fear became a reality. One of the most stressful events in the course of the cancer experience is being told that the cancer has come back. Some of them were faced with that awful news, and others had to prepare for the loss of their loved one. During those times especially, if the caregivers had a strong support system in place, they were able to adjust better. Throughout the caregiving journey, it was clear that their health was less of a priority and they did not eat right or exercise.

• In general, husband caregivers felt better about themselves as caregivers, resulting in less stress from providing care to their wives with cancer. Husband caregivers, however, found difficulty in dealing with their wives’ emotional distress and social withdrawal.

• Two years after their loved one’s cancer diagnosis, many caregivers were no longer experiencing mental or physical stress associated with the initial period of crisis of the diagnosis and treatment. However, some caregivers were still struggling with the various burdens of caregiving, while others reported that the cancer experience had given them a new perspective in life and had added meaning to their life.

• Those caregivers who consider spirituality to be an important part of their life reported more stress-related physical health problems than mental health problems.

Quality of Life

Quality-of-life issues among persons touched by cancer are not fully understood, and evidence-based interventions are needed.

Quality of life has become an important outcome in assessing the impact of the diagnosis and treatment of cancer. Despite the ever-increasing number of persons affected by cancer, relatively little is known about their long-term needs or the factors that contribute to good quality of life. Much of the research that has investigated the quality of life of persons affected by cancer has been conducted with people in active treatment or those not long past the completion of treatment. Little is known about the needs, concerns, and psychosocial functioning of individuals throughout the full continuum of cancer experience, from diagnosis and treatment to long-term survivorship or end of life.

Furthermore, additional research is needed to identify and develop the types of interventions that will have a positive impact on the quality of life of this population. Thus, the aims of the Behavioral Research Center Program of Quality of Life Research are to: (1) gain a better understanding of the psychosocial and quality-of-life issues among persons affected by cancer and (2) develop evidence-based interventions to address these issues.

In order to achieve these aims, a three-phase research plan has been developed. The first phase of this plan focused on the planning and implementation of the Study of Cancer Survivors-II (SCS-II), a nationwide, cross-sectional study of the quality of life of short-, medium-, and long-term cancer survivors. As with SCS-I, this study was designed to overcome the limitations of other studies that have explored the quality of life of cancer survivors. Because SCS-II has a cross-sectional design, with information from three separate groups of survivors who are either 2, 5, or 10 years past diagnosis, SCS-II is providing us now with much-needed information about long-term survivors.

The second phase of the research plan involves an in-depth analysis of the SCS-II data to enhance our understanding of the behavioral, psychosocial, and support factors that influence the quality of life of long-term cancer survivors in the United States. Using information from the study analyzed in Phase 2, the third phase of this research program will develop, implement, and evaluate evidence-based interventions for people affected by cancer. The informational and supportive services of the American Cancer Society offer a rich and, thus far, largely untapped setting in which to test psychosocial and behavioral interventions with cancer patients and their loved ones on a national scale. In order to take advantage of this opportunity, this research will utilize the existing infrastructure of the Society to deliver interventions that are organizationally focused. This knowledge can also be used to guide in the development of effective psycho-educational informational materials and programs.

Finally, study results can help in the Society’s efforts to formulate 2015 challenge goals for the nation in the area of quality of life of cancer survivors. Thus, the Behavioral Research Center’s program of Quality of Life Research plans to use information gathered through descriptive research to develop psychosocial interventions that are consistent with the overall mission and leadership roles of the American Cancer Society.