Information needs of family caregivers of terminal cancer patients in Taiwan

Abstract

Previous studies have indicated that when family caregivers are provided with enough of the right information their coping strategies in caring for terminal cancer patients are enhanced. In Taiwan, family caregivers are highly involved in their ill family member’s symptom management and must stay at the bedside to share the nursing and caregiving tasks in the palliative care unit. The cross-sectional survey described here used a structured questionnaire to identify six domains of information needed among family caregivers who stay in the palliative care units to prepare them to provide hospice homecare after discharge. The six domains for which family members needed specific information included the basic tenets of caregiving, the disease, the social welfare of the patient, psychosocial issues, palliative care, and spirituality/religion. This study indicated that information about the disease itself was of greatest importance, with the least importance attached to spiritual and religious information. Age, gender, educational level, and socioeconomic status (SES) of family caregivers were factors in how they viewed the importance of each domain. Situation-related variables, such as the extent of each caregiver’s role in decision making, duration of the patient’s disease, and the treatment the patient was undergoing were also related to how caregivers valued each type of information. Study results indicated that the education of caregivers in the palliative care unit should be individualized based on each patient’s condition and each family’s characteristics.