The primary aim of this oncology educational initiative is to implement a national education program on family caregiving in cancer. The intent of this program is to improve quality of life and the quality of care for family caregivers who are impacted by a loved one’s cancer across the trajectory of illness.
The program aims to educate competitively chosen multidisciplinary teams (two participants per team) from cancer institutions across the nation in improving care for oncology family caregivers. Using a goal-directed method of teaching, each team will develop three (3) goals related to implementation of family caregiver support activities. These goals will be followed at 6, 12, and 18 months post-course.
The program consists of four annual 3-day courses that provide family caregiver education based on the four (4) domains of quality of life (QOL):
- Physical well-being
- Psychological well-being
- Social well-being
- Spiritual well-being
Competitively selected teams (attends 1 course) will receive:
- Free Registration and Course Materials
- Meals (breakfast, lunch and snacks)
- $350 stipend per person applied to hotel cost at Paradise Pier Hotel (Disneyland Resort)
- 6, 12, and 18 month follow-up and support
- 17.5 CE credits for full attendance of course.
(CE Provider: City of Hope National Medical Center/Beckman Research Institute approved by the California Board of Registered Nursing, Provider No. 13380 for 17.5 contact hours and the California Board of Behavioral Sciences, Provider #2401 for 17.5 hours of continuring education for LCSWs.) Other disciplines: Certificate of Attendance. No partial CE credits will be given. Must attend entire program to receive contact hours/CE credits and Certificate of Attendance.
Family caregivers, although profoundly impacted by a loved one’s cancer diagnosis, have received only minimal attention by most healthcare providers who are focused primarily upon the physical needs of the patient. Family caregivers can be defined as those who provide uncompensated care in the home and who have a pre-existing relationship (either through friendship or kinship) to the person for whom care is being provided. This care can be in any of the QOL domains including physical, social, psychological and spiritual care. It is estimated that two of every three American families will at some time have at least one family member diagnosed with cancer. The current trend toward earlier discharge from acute care hospitals and the expected increase in home care results in more adult children becoming involved in caring for a physically dependent parent. Furthermore, advances in cancer treatment have led to increased survivorship, which in turn has led to caregiving demands that may exist for several months to years.
Family caregivers, like cancer patients themselves, have diverse needs and health concerns. The impact of the disease on the family is multifocal. Caring for a loved one with cancer at home entails inherent physical, psychological and financial burdens. Complex symptom management represents a challenge for the patients and their family members. Family caregivers report feelings of anxiety, depression, fear, helplessness, anger, guilt and uncertainty. They are at risk for increased distress in each domain of QOL when their loved one suffers from uncontrolled symptoms. Furthermore, family caregivers have several needs that range from informational, personal, household, and patient care that are not fully acknowledged by health care providers.
Caregiver needs and access to resources vary based on many factors, including gender, age, culture, education, economics and geographic setting (rural vs. urban). Those caring for an especially vulnerable loved one with cognitive impairments or one who is physically or emotionally dependent and who requires substitutive decision-making are at even greater risk for increased guilt and complicated bereavement. Perhaps most importantly, caregiver needs vary based upon the trajectory of illness from diagnosis through treatment, survivorship and end of life care. At the time of diagnosis, family caregivers, like patients themselves, may be overwhelmed with the need to adapt to the myriad of new information, decision-making, and adjustments to the impact of the illness upon their lives. Many with cancer find themselves facing their illness as a chronic disease requiring months or even years of active treatment resulting in long-term impact upon family caregivers. Although the survivorship phase may now last for decades, patients are often left with an illness or treatment legacy that continues to require ongoing attention from family caregivers. For those facing end of life, caregiving needs typically escalate as family caregivers attempt to cope with the increasing burden of illness upon their loved one. Because family caregivers may assume their caregiving role under unexpected and difficult circumstances, anticipatory guidance and education regarding effective coping strategies are often desperately needed. Disseminating what has been learned over the past 2 decades of family caregiver research and what is currently being done in model settings can provide professionals with information and ideas to take back to their own institutions for implementation.