Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic. Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic. Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals). Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study—the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services. Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.
The unmet needs of family members of patients with progressive neurological disease in the Czech Republic
