The diagnosis of advanced, incurable cancer at different stages of the adult life span holds a variety of meanings for family members who often must play critical roles in patient care and decision-making. Family caregivers are greatly affected by these issues and may find it difficult to meet the demands of taking care of their ill loved one through end-of-life care, in addition to their own well-being.
We are testing a coping and communication support (CCS) intervention for advanced stage cancer patients and their family caregivers over the period when goals of care may shift, i.e. beginning shortly after diagnosis. This randomized clinical trial is being conducted in two cancer clinics that reach patients and families in low income and underserved populations: the Louis Stokes Cleveland VAMC and MetroHealth Medical Center. Clinical nurse specialists with advanced training in mental health are available to patients and family caregivers on a 24/7 basis to assist with coping and communication challenges. The primary goal of this project is to examine main effects of the intervention and patient age group interaction effects of the CCS intervention on perspectives and well-being of family caregivers during advanced cancer care and in bereavement.
Recruitment is based on patients diagnosis (stage IV or advanced cancer) and age (40 years of age or older). Patients are then stratified by age group (40-60 and 61+) and then randomized to usual care or CCS intervention. Family caregivers are randomized along with the patient. A total of 556 patient/caregiver dyads (72% of all patients) will be randomized. Experienced interviewers conduct interviews at baseline and three months after enrollment. The interview includes questions concerning depression, anxiety, family caregiver satisfaction with the patient's care, family communication styles, and basic demographics. An additional interview is done 3 months after the death of the patient. In addition to these structured interviews, all contacts between CCS practitioner and family caregivers or patients are documented in a web-based database that can be converted to an SPSS file for statistical analysis. Primary analyses include tests for overall (main) effects of the CCS intervention on family caregivers during advanced cancer care and in bereavement as well as patient age group by intervention interactions.
We completed our enrollment in September 2008; a total of 681 patients and 530 family caregivers have been enrolled. Eighty nine point five percent (89.5%) of patients identified a family caregiver and 84.5% of those identified successfully enrolled in the study. Among those enrolled, 559 patients and 462 family caregivers completed baseline requirements. Patients were 31.5% female, 33.3% African-American, 2.7% Hispanic and 42.6% were married and/or living with a partner. Mean age for patients was 61.3 (SD 10.3); and average length of education was 12.4 (SD 2.4) years. Less than 13% of patients worked for pay. Among family caregivers, 79% were female, 33.19% were the spouse, while 26.46% were the adult child of the patient. The average age of the family caregivers was 51.8 (SD 14.9). Thirty point five percent (30.5%) were African-American and 4.13% self-identified as Hispanic. Nearly half of all caregivers worked for pay and had a mean education level of 13.1 (SD 2.4).
Research on advanced cancer patients and their family caregivers is important in order to develop interventions to improve care and quality of life outcomes for both future cancer patients and their caregivers. Our findings will stimulate developments of interventions that address patient-centered customized care of older patients and improve communication and support for family caregivers.
- Rose J. Family Caregiver Engagement in a Coping and Communication Support Intervention Tailored to Advanced Cancer Patients and Families. Cancer nursing. 2009 Feb 1; 32(1):73-81.
- Rose JH, O'Toole EE, Einstadter D, Love TE, Shenko CA, Dawson NV. Patient age, well-being, perspectives, and care practices in the early treatment phase for late-stage cancer. The journals of gerontology. Series A, Biological sciences and medical sciences. 2008 Sep 1; 63(9):960-8.
- Rose JH, Radziewicz R, Bowmans KF, O'Toole EE. A coping and communication support intervention tailored to older patients diagnosed with late-stage cancer. Clinical Interventions in Aging. 2008 Jan 1; 3(1):77-95.