Home and Community Care Digest

Home and Community Care Digest June 2005 : 0-0

Unpaid caregivers desire more communication with their chronically ill patients


A questionnaire was administered to chronically ill patients living in the community and their unpaid caregivers. It was designed to find out if either the patient or the caregiver had a desire to communicate more often with each other about their chronic illness. The results of the study show that caregivers did want to communicate with their patient more often but that the patient usually did not. This unmet communication need was associated with a higher degree of caregiver emotional distress.
Background: Unpaid caregivers to chronically ill patients can experience a high psychological and physical burden. This burden can include depression and interference with the caregiver's life. Past studies have established that caregivers usually desire more information about the illness and prognosis from the physician, whereas patients often wish to limit this communication. Limited study has examined the communication needs between unpaid caregivers and their chronically ill patients. The authors of this study explored caregivers' and their patients' desire for communication with each other. They also investigated the relationship between unmet desire for communication and caregiver burden.

Methods: A group of patients living in the community with congestive heart failure, chronic obstructive pulmonary disease, and cancer were recruited by phone. Each participant had to have an unpaid caregiver actively involved in his or her daily care. Most patients had a life expectancy of approximately six months. A total of 193 patients and their caregivers agreed to participate in the study. A survey was administered separately to caregivers and patients. This survey explored the issue of how important communication about the patients' illness was to the patients and their unpaid caregivers. In addition, each group was asked if they would have liked to talk about the illness more often. Respondents were also questioned about their health, living arrangements, and other demographic information. Caregiver burden was measured by administering a questionnaire that measured the emotional distress of the caregiver.

Findings: There was a high rate of disagreement among patients and their caregivers about the need for increased communication about the illness. Caregivers who wanted more communication were found to have higher caregiver burden scores. Almost all caregivers and patients in the study agreed that communication about the illness was important. Approximately half of the caregivers (40%) had a need for more communication with the patient and many caregivers reported that communication was difficult (37%). Few patients had a desire for increased communication (20%) with their unpaid caregivers. Some patients thought that communication with their unpaid caregivers was difficult (22%).

The average age of the patients was nearly 73 years. Almost half of the patients were female (40%) and the majority was white (91%). The caregivers had an average age of approximately 62 years. Most were female (78%) and white (92%). Spouses accounted for over half of the caregivers (57%), children for a quarter (27%), other relatives for about 9%, and others for 7%.

Conclusions: Unpaid caregiver burden has many causes that likely cannot be modified such as disease progression and physical functioning of the patient, and interference with other social and family commitment. Programs designed to address the unmet communication needs of unpaid caregivers might lead to a decreased caregiver burden.

Reference: Fried, T.R., Bradley, E.H.., O'Leary, J.R., Byers, A.L. "Unmet Desire for Caregiver-Patient Communication and Increased Caregiver Burden". Journal of the American Geriatric Society. 2005; 53:59-65.


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