Facilitated access to medical specialist care: The novel approach to support informal hospice caregivers—Analysis of caregivers’ needs and satisfaction.

Abstract

11 Background: Real life observations suggest hospice caregiving may result in physical health deterioration of family caregivers; they are less likely to participate in health-related initiatives and frequently don’t benefit from the most optimal medical care. Data reporting caregivers’ medical needs are rather scarce. Methods: The estimation of needs for specialist medical care aimed at family caregivers was carried out based on the activity called Open Day of Health Prophylaxis (ODHP – free consultations with specialists, ultrasound examinations and mammography) held annually at Rev. Eugeniusz Dutkiewicz SAC Hospice, Gdańsk, Poland during three consecutive years (2014 - 2018). In total, 715 medical consultations (median: 3 per caregiver, range: 1 - 6), 172 ultrasound, and 31 mammogram examinations were provided). The level of satisfaction expressed by the ODHP participants was also analyzed. Demographic, medical data, and involvement in the caregiving were analyzed based on consultation cards and questionnaires presented to all ODHP participants (307 total participants). Results: In total, 186 persons replied (60.59%), 103 of them fulfilled study inclusion criteria (currently or within the last 6 months providing personal care of a chronically ill person for minimum 12 hours per week), 82 (79.61%) of responders were women, most of advanced age (median: 67 years; range: 29 - 91). The vast majority (95.31%) estimated ODHP as valuable initiative. According to 52.23% ODHP completely fulfilled caregivers’ needs and expectations, 45.57% were partly satisfied, and for 2.13% the activity did not meet their expectations. The most common reason for dissatisfaction in the response was both lack of communication and access to specialists, as well inability to initiate other diagnostic tests. All responders indicated the expedient nature of ODHP activity. Conclusions: Facilitated access to medical specialists care in is well received form of support for family hospice caregivers. There is indication of a need for systemic solutions to the problems of medical care for long-term caregivers.