palliative care, unmet need, neurology, quality of life

Aim: The aim of the research was to find unmet care needs of patients with progressive neurological disease (e.g. multiple sclerosis MS, neurodegenerative diseases, and motor neuron disease MND) in an advanced stage of the disease, and those of their family members. Methods: Qualitative (a classic grounded theory) methodology was used to conceptualize patterns of unmet palliative care needs. Data were interpreted, conceptualized and newly integrated using open, axial and selective coding. Data were collected from 52 participants: 10 interviews with patients (4 with severe MS, 6 with severe Parkinson’s syndrome PS); 6 interviews with family members of patients (2 with MS, 1 with PS, 1 with Huntington’s disease, 2 with NMN); 3 interviews with professionals (doctor, nurse, social worker); 4 focus groups (total 31 health and social care professionals, 2 hospital chaplains). Focus groups allowed a professional view of the unmet needs. The interviews lasted for 30-70 minutes, the focus groups for 120 minutes. Results: Twenty-six needs themes were identified, grouped into six categories. Categories were joined together in the relationship set according to a paradigmatic model defining causal conditions (deterioration of health state), phenomena (symptoms), contextual conditions (imminent death), intervening conditions (perception of disease/death, information), action/interaction strategies (help), and consequences (the way of dying). The model described unmet care needs, e.g. physical symptoms, coordination of care, lack of information, neurorehabilitation in home, anxiety, depression, isolation, hope. Conclusion: Based on identified themes of unmet needs, a concept of palliative care services should be developed for patients in an advanced stage of progressive neurological disease in different care settings (home, hospital, nursing home, social services). These patients belong to the group of patients for whom palliative care may be indicated.