Abstract
Objectives: Caregivers of cancer patients have complex needs as they care for a loved one at the end-of-life (EOL). The primary objective of this pilot study was to determine the feasibility and outcomes when conducting a brief, cost-effective nursing intervention ("Tele-Care II") by telephone for caregivers of Hospice patients. A secondary objective was to evaluate caregiver use of a Tele-Care II workbook that was designed to promote caregiver health. The workbook provided structure and guidance for a nurse facilitator and caregivers during the Tele-Care II intervention.
Design: The effects of Tele-Care II were measured in a quasi-experimental, pre-post assessment design. Small numbers of caregivers (n=9) did not allow for tests of significance. Statistical analysis of means was conducted and descriptive data gathered before and after participation in the Tele-Care II intervention.
Sample and Setting: The sample consisted of 9 caregivers of Hospice patients. Caregiver referrals were based on the judgment of Hospice staff that the patient was expected to live six weeks or more so that the Tele-Care II could be delivered to caregivers before patient death. By caregiver request, pre and post assessments were conducted in the caregivers' homes. Tele-Care II was delivered by telephone.
Conceptual framework/Intervention/Outcome variables. Hogan's Model of Bereavement guided the study and was the underpinning for the Tele-Care II workbook. Dr. Hogan served as a consultant for the study. The intervention was delivered via a telephone conference call led by a nurse facilitator with small groups of caregivers.. The facilitator guided group discussions focused on outcome variables of caregiver health, social support, personal growth, grief, depression, and caregiver burden.
Methods: After approval from the University ethics review board, Hospice nurses recruited interested caregivers to the principal investigator. Following consent, pre-intervention data were collected in the home using instruments that measured the outcome variables. Instrument choice was determined by the a) conceptual framework; b) content of the Tele-Care II sessions; c) expected effects of the conference calls, d) adequate psychometric properties, e) concerns about response burden. Following pre-assessments, caregivers received the Tele-Care II workbook with instructions to read the workbook before the first telephone group meeting. Tele-Care II was then delivered via a 1-hour conference call weekly for four weeks between a nurse facilitator (the PI) and caregiver groups. Post assessments occurred one week following the last group session.
Findings: Subjects were predominantly female (8 out of 9), had an average age of 66 years, had an income of less that $50,000 annually and were predominantly Caucasian (1 was Hispanic, 1 Creole). Response burden was not an issue as caregivers indicated they enjoyed completing assessments and often extended the assessor's visit. Although Hospice patients became more seriously ill during the intervention, measurement outcomes provided evidence that caregivers were less depressed and had less despair and disorganization following the intervention. During post-assessments, caregivers reported that the intervention helped them not only during the patient's last days but also during bereavement. Findings confirmed that the Tele-Care II workbook was a useful tool to guide group discussions.
Conclusions: Because patient enrollment in Hospice continues to be late in the illness trajectory, attrition rate was high; with 5 out of 14 original subjects removed from the study due to patient death before caregivers could complete the 4-week intervention. Therefore, recruitment methodology should be refined. Educational programs to enroll Hospice patients early in the illness trajectory would assist both patient and caregiver. Using telephone conference calls were an excellent mechanism to reach this vulnerable population. Caregivers prefer that pre and post assessments be completed either in the caregiver homes or by telephone. The findings support that caregivers are interested and will participate in telephone interventions even as a family member's condition deteriorates. Positive effects of the intervention can be expected.
Implications: Enrollment of patients when they are eligible for Hospice care would be advantageous for both caregivers and patients. Nurses are in key positions to educate the public about the advantages of Hospice care and if a Hospice referral is appropriate and needed. Lack of knowledge about Hospice continues to be a problem in the general population. Because of caregiver vulnerability, additional interventions and approaches are needed to: 1) sustain caregiver health especially as the patient's illness worsens, 2) provide information to promote knowledge about Hospice and palliative care, 3) expand knowledge about organizations (i.e. Hospice, home health agencies) that provide palliative care, and 4) promote utilization of findings to advance the quality of care for family caregivers.
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