Parents’ Experiences of Investigations and Interventions by Child Healthcare, Child and Adolescent Psychiatry and Child and Youth Habilitation

Background: ESSENCE (early symptomatic syndromes eliciting neurodevelopmental clinical examinations) is a collective term for all conditions involving early-onset behavioural problems and/or cognitive difficulties. These lead to consultation with a variety of specialists, who often have no close collaboration with each other. Parents experience frustration about the lack of cooperation between care providers, and helplessness and despair over the lack of structure or routines within the care system. The aim of this study was to elicit parents’ experiences of support and interventions from child healthcare, child and adolescent psychiatry and child and youth habilitation.Method: An explorative, qualitative design taking an inductive approach. Data were collected through semi-structured focus group interviews, with 13 parents of children with behavioural and/or ESSENCE problems. Firstly, a conventional analysis of the interviews was performed. Then the revealed categories were interpreted using the bioecological model to illustrate the effects on the child’s interaction with the surrounding context, i.e. micro-, meso-, exo- and macrosystems. Results: The analysis revealed four main categories: confidence, information, competence and collaboration, affecting parents’ experiences of the encounter with child healthcare, child and adolescent psychiatry and child and youth habilitation providers. Consistent across all four themes was the importance of time, i.e. the parents’ experiences of how the process of getting help and support was constantly delayed.Conclusion: While waiting for an investigation of ESSENCE problems, parents experience anxiety, worry, frustration, lack of information, lack of confidence and doubts about their parenting ability, which also affects the child. They experience a lack of competence among care staff when their concerns about their child’s development are not taken seriously, and demand a comprehensive approach regarding investigation and treatment. Collaboration within the exosystem between the various professionals involved is perceived to have great potential for improvement.Trial registration: Retrospectively registered clinical Trials 2021, PLUSS identifier, NCT04815889.