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Background: Pediatric acute-onset neuropsychiatric syndrome (PANS) is a symptom-based and clinically heterogeneous condition characterized by an abrupt and dramatic onset of symptoms such as loss of motoric and cognitive abilities, anxiety, compulsion, tics, and eating disorders. PANS is a new diagnosis and the condition has gathered controversy in research and clinical practice. Aim: We aimed to investigate the process by which parents of children with PANS acquire knowledge about the condition; the causes that lead parents to search for knowledge; the ways in which they search for knowledge; and the manner in which this knowledge is received by medical care professionals. Method: The study employed in-depth semi-structured, individual interviews with 13 parents of children diagnosed with PANS. An inductive qualitative thematic analysis was used as a guide for analyzing the data. Results: Challenges to understand their child's illness and receive effective care led the parents to search for knowledge about PANS and provide an explanation for their child's symptoms. They used personal and social resources to search for knowledge. They felt trusted and encouraged when clinicians endorsed their knowledge. On the other hand, when they were dismissed as a source of knowledge, they experienced a lack of trust towards professionals. Conclusions: A driving force for parents' search for knowledge is a perceived incapacity to give meaning to their experiences. Another reason is mistrust of healthcare staff's existing knowledge. Highlights: PANS is a new diagnosis and the condition has gathered controversy in research and clinical practice, particularly with regard to the role of autoimmune and infectious diseases at the onset of PANS. Parents of children with PANS manage challenges to understand their child's illness and receive effective care by searching for knowledge about PANS. They used personal and social resources to search for knowledge. They felt trusted and encouraged when clinicians endorsed their knowledge. On the other hand, when they were dismissed as a source of knowledge, they experienced a lack of trust towards professionals. The results illustrate a need for in-depth knowledge of PANS in mental healthcare and enhanced person-centered care where parents are regarded as valuable carriers of knowledge. [ABSTRACT FROM AUTHOR]

Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions. [ABSTRACT FROM AUTHOR]

This paper, based on my PhD empirical study, suggests that qualitative investigations, seen as reflective practices, have much in common with – and probably much to learn from – jazz improvisational practices. The complex processes of hermeneutic understanding include laying bare the researcher’s pre-understanding as well as, in the interpretation of statements, the dynamics between their holistic coherence and the agent’s intentions. Through interview excerpts, the important phenomenon ofbreaks in the conversational flowis shown to have great significance to qualitative inquiry as a reflective practice, pointing to improvisational practices as relevant providers of solutions to the problematic dynamics of understanding, pre-understanding, self-understanding and misunderstanding. [ABSTRACT FROM PUBLISHER]