[Caregiving burden and associated factors among caregivers of terminally ill gastrointestinal cancer patients].

ABSTRACT

BACKGROUND: Heavy caregiving burdens can harm the physical and mental health of primary caregivers and reduce patient care quality. Understanding caregiving burden and its associated factors among primary caregivers of terminally ill patients with gastrointestinal cancer can help improve holistic terminal healthcare quality. PURPOSE: The authors explore in this paper the relationship between caregiving burden and terminally ill gastrointestinal cancer patient disease characteristics, demographic backgrounds, level of social support, self-care efficacy, fear of death and self-perceived symptom distress in both patients and primary caregivers. METHODS: This was a cross-sectional, descriptive, and correlational study that used convenience sampling and structured questionnaires. Data were collected from 178 family caregivers of terminally ill patients with gastrointestinal cancer in the Tainan and Chiayi areas of Southern Taiwan. RESULTS: The caregiving burden of caregivers of terminally ill gastrointestinal cancer patients in hospice homecare was significantly higher than that of those recruited from outpatient departments. Caregiving burden for liver and pancreatic cancer patients was significantly higher than for colorectal cancer patients. The caregiving burden of spousal caregivers was significantly higher than that of lineal blood relatives. The caregiving burden of caregivers with worse self-perceived health status was significantly higher than that of those with better self-perceived health status. The most important explanatory factors of caregiving burden among primary caregivers terminally ill gastrointestinal cancer patients were (in descending order) social support, self-perceived symptom distress in patient, self-perceived health status, location of study subject recruitment, fear of death, and relationship with patient; these factors explained 63.8% of the total variation. Social support was the most important explanatory factor, explaining 37.2% of total variance. CONCLUSIONS: We recommend that terminal health care teams better assess the social support given primary caregivers of terminally ill gastrointestinal cancer patients, that assistance be provided to caregivers with less social support, that caregiver life-and-death education be improved, and that primary caregivers be taught how to accept and positively handle the death of the loved one in their care. More attention should be paid to controlling symptoms of terminal stage cancer patients in order to reduce caregiver self-perceived symptom distress. Evaluation of caregiving burden is especially important for those primary caregivers who are hospice homecare workers, spouses, and of lower self-perceived health status.