The unmet needs of family members of patients with progressive neurological disease in the Czech Republic.

Abstract

Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals). Based on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family. Family members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.