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Understanding parental stress among parents of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) in Sweden
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0003-3825-042x
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0002-3892-2794
2022 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, no 1, article id 2080906Article in journal (Refereed) Published
Abstract [en]

PURPOSE Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a relatively new diagnosis characterized by an abrupt and dramatic onset of obsessive-compulsive disorder (OCD), together with neuropsychiatric symptoms. Very little research has been done to understand the experience of being a parent of a child with PANS. The current study aimed to explore aspects related to parental stress in parents of children with PANS.

METHOD The study employed in-depth semi-structured individual interviews with 13 parents of children diagnosed with PANS. Parents were recruited via an announcement on the websites of patient organizations, and in waiting rooms at child medical clinics. An inductive qualitative content analysis approach was used as a guide for analysis of data.

RESULTS The analysis of interviews identified five categories of parents’ experiences of stress related to: (1) being effected by the symptoms; (2) experiencing the symptoms over and over again; (3) having no control; (4) obtaining medical treatment is challenging; and (5) managing problems. The results are discussed in relation to the Transactional Theory of Stress and Coping.

CONCLUSIONS the study illuminates how parents’ perceptions of the child’s symptoms, parents’ strategies for managing problems, as well as experiences related to healthcare providers, may increase or decrease parental stress.

Place, publisher, year, edition, pages
2022. Vol. 17, no 1, article id 2080906
Keywords [en]
Paediatric Acute-onset neuropsychiatric syndrome, PANS, PANDAS, OCD, parental stress, coping, mental disorder, qualitative research, transactional theory, constructivist grounded theory
National Category
Psychology (excluding Applied Psychology)
Research subject
Psychology
Identifiers
URN: urn:nbn:se:su:diva-206361DOI: 10.1080/17482631.2022.2080906ISI: 000800392700001OAI: oai:DiVA.org:su-206361DiVA, id: diva2:1668770
Funder
Swedish National Institute of Public HealthAvailable from: 2022-06-13 Created: 2022-06-13 Last updated: 2022-06-28Bibliographically approved

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Ringer, NoamRoll-Pettersson, Lise

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