Concerns of hospice patient caregivers

This descriptive study examined the needs and concerns of caregivers who provide care for patients at home, and who are also receiving hospice home care. Services that caregivers need to provide this care was also identified. The settings were two Midwestern, suburban hospices. Thirty-three caregivers participated. Nine participants were males and 24 were female. Ages ranged from 20 through 80 years. Caregivers completed a 28-item semi-structured questionnaire developed by the researchers. Demographic information and caregiver problems with symptom management, time spent giving care, hospice services utilized, other sources of support and assistance were assessed. Open-ended items asked about caregivers' stress levels and about problems that were not resolved by hospice. The study found that the distressing symptoms caregivers found most difficult to manage were constipation, confusion, and anorexia. Caregivers identified lack of mobility and loss of bladder control most frequently as unmanageable symptoms. A majority of respondents identified the hospice nurse as their main source of information regarding care and resource needs and often cited the nurse as a source of emotional support. Sixty-four percent reported that they provided care 12-24 hours per day with some respite from family members. Results of the study indicate that caregivers spend a large amount time with the hospice patients despite use of hospice services and assistance from family members. This can lead to high stress levels and exhaustion. There is a need for more respite care for caregivers. Hospice provides caregivers with needed support, both emotional and with the care itself.