Fifth Dimension    Catalog    Contact Us
graphic to create line
Cancer Supportive and Survivorship Care Improving Quality of Life Logo

Caregivers - Needs and Support
Ernest H. Rosenbaum, MD

Caretakers of Survivors
Caregiver Needs and Support
Family and Friends as Caregivers

Caretakers of Survivors
Back to the Table of Contents

Caretakers are now included in national programs along with cancer survivors. These include spouses, siblings, and parents, as well as friends, along with the supportive care team.

Caregivers, through their devotion and services, may acquire stress-related and psychosocial problems, which can impair their efficiency in providing care. Post-traumatic stress symptoms have also been found, and treatments, essentially, have been instituted. Supportive care for caregivers has been helpful in promoting their goal of efficient care for survivors, especially if they have the need for end-of-life care, as well as helping with the psychological trauma induced by the cancer process on both survivor and the family.

Back to the Table of Contents

It is estimated that there are approximately 45 million people in the United States providing care for a loved one, relative or friend with many diseases, such as cancer, heart disease, Alzheimer's, and Parkinson's. Caregiving requires a high level of responsibility but can cause devastating emotional and physical problems, as well as a financial toll on many families. Caregivers, as well as families, often have an increased amount of stress, depression, fatigue, and physical and mental problems.

Recent research studies have shown that supportive care for caregivers is important, and, often, they need rest periods and respond well to supportive telephone conversations, counseling, and in-home training assistance. Studies have shown that even brief periods of supportive counseling and periodic rest retreats can have very beneficial effects in reducing the physical and psychological burden of the caregiving process. An organization,, has a podcast of their workshop for coping with a cancer patient with advice on care, as well as how to deal with family problems, holidays, and other issues.

It is important for caregivers to reduce their own stress levels and accept additional help as needed.

Financial resources are often expended rapidly, and sometimes because of the extensive need for care, a working relative will quit her job to become the caregiver.

Thus, caregiving can be a challenging change for a family member or friend, but with proper guidance, nursing help and directions, the quality of life for patients can be enhanced during this difficult period of life.

Those who have religious or spiritual beliefs often find both meaning and help during the stressful period of having cancer, and the need of caregiver support. Their faith helps support and provide meaning for how they live through the end phase of the cancer process. Prayer often has value in maintaining faith no matter what the future will be, turning over one's fate to God and accepting what they believe is God's role in their fate, one hopes that God will help protect not only themselves but also their family and friends, as well as hope for a better outcome, whether it be reduced suffering and pain or a peaceful end-of-life.

Assessment of the Caregiver Role
The major role is supporting both the physical and psychological needs of the patient, as well as meeting the positive and negative expectations as much as possible, and improving quality of life through a very difficult period. Their services go beyond just duty, as there is a strong emotional bond component between caregiver and patient/family. By giving, one offers a personal satisfaction that is often the major reward gained by the caregiver as she meets current and future needs. The caregiver's empathy and compassion in managing multiple problems often becomes a totally encompassing role. Caring for people with advanced disease, dementia, or Alzheimer's requires a special attitude and the ability to adjust to each patient and family's physical and personal problems, which usually gives the caregiver a great deal of personal satisfaction from a difficult job.

The prior experience of the caregiver is very helpful in delivering care and coping with existing and future problems. It is a difficult task to take care of a sick person, whom you often learn to love and have both empathy and compassion for and see failure, which is the usual path in palliative care. This requires a great deal of inner personal strength and faith in one's job.

Caregiver Needs and Support
Back to the Table of Contents

It is a difficult job to be a caregiver because of the emotional strain and hard work required, and, often, the patient and family are vital in supporting the caregiver. The optimism that things can get better or adjusting the goals to relief of suffering, pain and a peaceful death depend on each individual case, but the strength and hope of the caregiver and for the caregiver help in the coping process. Caregivers often face not only frustration and disappointment but also burn-out and need rest periods to recover both emotionally and physically. With good care, there's a high level of satisfaction, which provides a meaning for quality of life during this phase of palliative care. Often fellow caregivers support each other through sharing their experiences and knowledge and in supporting of each other.

This process is enhanced by many spontaneous events that occur during the palliative care process, which often provide great satisfaction for all involved - patient, family, friends and caregivers.

Communicating with each other and listening to the problems - frustrations, difficulties in care and coping - as well as reviewing many of the positive events that have occurred in life, such as trips, vacations, celebrations, and weddings where the family participated can enhance positive memories of the past and give satisfaction and hope at this time. Trying to enjoy some of the simple events, such as a walk on a sunny day, attending a movie or concert, or just a family gathering can be very life-enhancing.

A review by (two authors) showed that 75% of caregivers achieved a positive personal change through their role as a caregiver for ill patients. Caregivers often learn how to handle difficult situations, as well as tolerate some of the anger and frustrations exhibited by patient, family and friends during the palliative care process.

The goal of a caregiver is to improve quality of life by reducing suffering and pain, as well as provide important sources of strength through their personal services. A great deal depends on the prognosis, as well as the ability of the caregiver to provide hope and a pathway for coping as many difficult problems emerge in the caregiving process. The goal is to try to capture and enhance ways of improving the relationship, as feasible, through emotional supportive care and efforts to relieve suffering and pain, and, then, one can improve quality of life during a physical illness, as well as the end-of-life process. Caregivers often need support themselves, and this is often done through their colleagues, the medical team, or from the family and often by the patient, who show appreciation for the caregiver's services.

There are often failures and deficiencies in any system, but caregivers are a special breed of people whose goal is to provide services that enhance quality of life with a promise that through their interventions, patients can have quality care, peace of mind, and grow to find ways to enhance their lives.

Despite the advances in medical screening, diagnosis, treatment, and improved five-year survival, about a half million Americans die yearly from cancer. It is considered a chronic but also life-threatening disease, causing existential apprehension for patients, family and friends.8

The existential threat and impact often evokes spiritual and/or religious thoughts along with concerns of treatment and survival. Family members are also concerned about hereditary (family history) prospects and possible susceptibility of also developing cancer, especially for breast, ovarian and colon cancers.

Caregivers often use the role of spirituality, which refers to a search for peace, wholeness with harmony with a higher power, and a sense of meaning and purpose in life.9

Spirituality offers a means of coping to help reduce the stress of cancer and its adverse impact on patient, family, friends and caregivers. The question addressed by Dr. Kim and colleagues is whether spirituality and faith can help with coping and reducing stress evoked by a cancer problem. The effect of cancer differs with each patient, depending on diagnosis, stage of disease, and potential prognosis. This may also evoke psychological distress in caregivers, as well.

A question also asked is whether a caregiver's stress and coping ability can be a buffer at this critical time and reduce psychological distress? Results from this study showed that there was a difference in the level of psychological distress, which was greater in non-gender-specific cancers, such as lung, kidney, non-Hodgkin's lymphoma or melanoma, versus gender-specific, such as breast and ovarian cancers, and in the stage. There was also increased psychological distress in first-degree relatives of breast and ovarian cancer patients. This, in part, may be related to the severity of the type of cancer, such as lung cancer with a poor prognosis versus melanoma with an intermediate prognosis.

Also, support groups for breast and ovarian cancers are more available and used more frequently than non-gender-specific types of cancer.

Kim and colleagues also found that highly spiritual caregivers had a lower level of psychological distress, especially for non-gender-specific types of cancer, where there were increased responsibility and caregiving tasks. Spirituality was beneficial by buffering psychological distress, and this may relate to the poor prognosis of the non-gender-specific cancers.

It was also noted that more research needs to be done on the effects of cancer and various ethnic groups, with different philosophies, spirituality and differences in psychological/social and economic philosophies, as well as religious and spiritual thoughts.

This study found that the caregiver's spirituality and the survivor's cancer type were both important in how caregivers coped and adjusted to the cancer survivor's problems, both physically and psychologically, and that caregivers, who lacked spirituality, were in need of support to help promote faith and better understanding of the meaning of life.

Family and Friends as Caregivers
Back to the Table of Contents

The family also has a significant role in caregiving and support and is usually a source of strength to both patient and caregiver. Their supportive reassurance and provision of comfort for patient, family and friends are positive sources of satisfaction. They are also a source of information and guidance and often provide solutions to problems. They are a vital source of communication between patient, family and the medical team.

Friends are another source of support and strength for patient and family, as well as caregivers, and if there is a long time during the palliative care process, one often sees some diminution in friends‚ supportive care, as it's a wearing process, and frustration and burnout are not uncommon in some cases. Friends are also very important in family and spiritual support.

Caregiving for a sick relative is often a family experience and often provides a chance for siblings to cooperate and become closer under a stressful situation. There is often psychological and physical stress due to the efforts to achieve a comfortable palliative care situation because of the demands, including both time and effort, in order to meet the needs. Frequently, siblings are in different cities and have to make special arrangements to participate in a cooperative caregiving program.

Additional cooperative efforts are needed in preparing for the eventual death in order to reduce potential later conflicts, which often involve dividing personal properties, money, property and inheritance. Frequently, discord becomes apparent due to these potential problems. Solving them ahead of time can help relieve dissention and unhappiness later.

There are also problems where sharing of duties is unequal, either because of time, distance by living in other cities, or due to personal efforts. The frustration of not always meeting the needs, may lead to resentment and unhappiness among siblings.

It is important to meet the challenges and resolve the conflicts as early as possible in order to promote a more harmonious relationship, not only during the caregiving process but also afterwards.

Some family members or siblings are unable to participate, and this could be for many reasons, such as inability, time, or not wishing to participate in the caregiving process. A family meeting where feelings are expressed and problems discussed and resolved as best as possible can lead to better caregiving, as well as keeping family relationships intact.

Each person has different expectations of what they can do, what they wish to do, and how they wish to participate. It's difficult to be critical of others, because each person has his own agenda and his own capacity to perform. By being respectful of the others' needs and wishes, a more harmonious caregiving process can be achieved.

Obtain counseling and help from the medical team's social worker, religious advisors, and other resources, including the family attorney, and try to use their advice appropriately to help cement good relations within the family as part of the caregiving process. Getting consultations, obtaining and using resources, and implementing advice are part of a good caregiving plan and program.


8. Youngnec Kim, David Wellich, Rachel Spiller, and Corinne Crammer, "Psychological Distress of Female Cancer Caregivers: Effect of Type of Cancer and Caregivers‚ Spirituality Support Care." Cancer (2007), 15: 1367-74.
9. Paloutzian, R., Ellison, C., (1982), Loneliness, Spiritual Well-being, and Quality of Life in: Peplau, L., Pelman, D., (eds); Loneliness: A Sourcebook of Current Theory, Research, and Therapy. Wiley, New York.)
10. The Legacy Project (