Abstract: Introduction: Currently, there has been an increasing concern about the provision of palliative care in non-oncological patients in both professional literature and clinical practice. However, there is not much scientific information on how to provide neurological and palliative care together. The main objective of the project is to create and to verify a concept of neuro-palliative and rehabilitative care for patients with selected neurological diseases in an advanced stage of the disease and also to evaluate bio-psychosocial and spiritual needs of these patients and their caregivers related to the quality of life using created standardized tools. Methodology: Triangulation of research methods (qualitative and quantitative) will be used. A concept of care and assessment tools will be developed by analyzing interviews and focus groups. Qualitative data will be analyzed using grounded theory. The concept of care will be tested in the context of the intervention study. Using quantitative analysis, we will assess the effect of an intervention provided on the saturation of needs, quality of life, and quality of care. A research sample will be made up of the patients with selected neurological diseases (Parkinson´s syndrome, motor neuron disease, multiple sclerosis, Huntington’s disease), together with patients´ family members. Based on the results, educational materials and a certified course for health care professionals will be created. Findings: Based on qualitative data analysis, we will propose the concept of integrated care model combining neurological, rehabilitative and specialist palliative care for patients with selected neurological diseases in different settings of care and services. Patients´ needs related to quality of life will be described by newly created and validated measuring tools before the start of intervention (application of neuro-palliative and palliative approach) and then in the time interval. Conclusion: Based on the results, educational materials and a certified course for doctors and health care professionals will be created.
Abstract: Understanding the help seeking decision making process and experiences of health disparity populations with posttraumatic stress disorder (PTSD) is central to development of trauma-informed, culturally centered, and patient focused services. Yet, little is known about the decision making process among adult Black women who are non-treatment seekers as they are, by definition, not engaged in services. Methods: Audiotaped interviews were conducted with 30 African American adult women with clinically significant PTSD symptoms who were engaged in primary care, but not in treatment for PTSD despite symptom burden. A qualitative interview guide was used to elucidate key themes. Independent coding of themes mapped to theory and identification of emergent themes were conducted using qualitative methods. An existing quantitative dataset was analyzed to contextualize responses and provide a descriptive summary of the sample. Results: Emergent themes revealed that active mental avoidance, the intermittent nature of distress, ambivalence, and self-identified resilience as undermining to help seeking decisions. Participants were stuck within the help-seeking phase of ‘recognition’ of illness and retained a sense of “it is my decision” despite endorsing significant social and environmental negative influencers. Participants distinguished ‘help acceptance’ from ‘help seeking’ with greater willingness to accept help and importance placed on being of help to others. Conclusions: Elucidation of the decision-making process from the perspective of non-treatment seekers has implications for outreach and treatment within models of integrated and specialty systems care. The salience of responses to trauma symptoms and stagnation in the help seeking recognition phase are findings relevant to integrated care service design and community engagement.