AMYOTROPHIC-LATERAL-SCLEROSIS; PALLIATIVE CARE NEEDS; MULTIPLE-SCLEROSIS; PARKINSONS-DISEASE; CAREGIVER BURDEN; OF-LIFE; PEOPLE; QUALITY; EXPERIENCES; DEPRESSION

BackgroundCaring 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.ObjectiveThe aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages.MethodsGrounded 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).ResultsBased 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.ConclusionFamily 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.