Understanding parental stress among parents of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) in Sweden. 2022

Noam Ringer, and Lise Roll-Pettersson
Department of Special Education, Stockholm University, Stockholm, Sweden.

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. 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. 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. 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.

UI MeSH Term Description Entries
D009771 Obsessive-Compulsive Disorder An anxiety disorder characterized by recurrent, persistent obsessions or compulsions. Obsessions are the intrusive ideas, thoughts, or images that are experienced as senseless or repugnant. Compulsions are repetitive and seemingly purposeful behavior which the individual generally recognizes as senseless and from which the individual does not derive pleasure although it may provide a release from tension. Anankastic Personality,Neurosis, Obsessive-Compulsive,Anankastic Personalities,Disorder, Obsessive-Compulsive,Disorders, Obsessive-Compulsive,Neuroses, Obsessive-Compulsive,Neurosis, Obsessive Compulsive,Obsessive Compulsive Disorder,Obsessive-Compulsive Disorders,Obsessive-Compulsive Neuroses,Obsessive-Compulsive Neurosis,Personalities, Anankastic,Personality, Anankastic
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D001327 Autoimmune Diseases Disorders that are characterized by the production of antibodies that react with host tissues or immune effector cells that are autoreactive to endogenous peptides. Autoimmune Disease,Disease, Autoimmune,Diseases, Autoimmune
D013290 Streptococcal Infections Infections with bacteria of the genus STREPTOCOCCUS. Group A Strep Infection,Group A Streptococcal Infection,Group A Streptococcal Infections,Group B Strep Infection,Group B Streptococcal Infection,Group B Streptococcal Infections,Infections, Streptococcal,Infection, Streptococcal,Streptococcal Infection
D013548 Sweden Country in northern Europe, bordering the Baltic Sea, between Finland and Norway. The capital is Stockholm.

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