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Caregivers - Needs and Support
Ernest H. Rosenbaum, MD
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.
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. CancerSupportiveCare.com The Legacy Project (cancersupportivecare.com/Legacy)
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