Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD.

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Background CLN3 disease is a neurodegenerative condition presenting in the first decade of life typically leading to death in the third decade. The earliest symptom is rapidly progressive visual impairment followed by intellectual and motor impairments, epilepsy and behavioural disturbances. There are limited data on how the condition affects the family system or the role of family resilience in paediatric neurodegenerative diseases. Methods Semi‐structured interviews were conducted with eight parents (five mothers and three fathers) of five children with CLN3. Interview questions focused on the experience of having a child with CLN3, its impact on the family system as well as the concept of family resilience. Data were analysed via thematic analysis. Results The thematic analysis resulted in four main themes. The theme ‘recurring losses’ included the feeling of losing a healthy child, the child's loss of abilities and loss of relationships. The theme ‘disruption to the family system’ included that siblings could be ‘side‐lined’, the potential negative impact on romantic relationships and difficulties finding time to oneself. The theme ‘Society is not developed for a progressive disease’ highlighted the difficulties parents faced with respect to contacts with the health and/or social insurance system. The paediatric health care system was seen as supportive, but the adult health care system was not seen as fit for the purpose. Regarding family resilience, parents felt that the disease forced them to reconsider what was important in life. Several parents described that they learned to value small moments of joy and create deep connections through involvement in family routines and rituals. Conclusions CLN3 places a very significant burden on the family system including parental feelings of loss, impact on family relationships and lack of understanding within the health/social insurance systems. The concept of family resilience may be useful in understanding the experiences of families affected by paediatric neurodegenerative conditions.

Although parents of children with ID describe negative emotions in relation to the child and the disability, most of these parents also describe positive emotions that seemed to balance the negative experiences.

Objectives Parental psychosis poses a risk factor for a child's well-being. Few studies have focused on the parents' views of how their psychosis affects their parenting, and results for parenting ability in this group are contradictory. The present study aimed to explore how parents with psychosis experience the effect(s) of their illness on parenting. Methods In-depth and semi-structured interviews were conducted with 15 parents who attended outpatient clinics specializing in psychosis. The transcripts were analyzed using thematic analysis. Data related to the research aim were analyzed deductively according to the protection, reciprocity, control, guided learning, and group participation model of parenting. Data in each domain were subsequently coded inductively to form subthemes. Results Results show that all domains of parenting appear to be affected by psychosis. The parents specifically mentioned that depression, fatigue, and difficulty focusing because of hearing voices had negative impacts on their abilities to provide protection, reciprocity, and control. The parents also expressed difficulties in maintaining routines in the child's everyday life. Furthermore, the theme "Unpredictable absences" crosses all domains and highlights the parents' recurrent mental and physical absences from their children during psychotic episodes. Conclusions The present study provides some insight into how different aspects of parenting may be affected by psychosis. We suggest that these effects on parenting need to be further explored and confirmed by research focusing on the child's perspective and on observations of parent-child interaction. Keywords Parental psychosis • Parenting • Psychiatric services • Schizophrenia • Qualitative study Nearly 6% of children in Sweden grow up with a parent with mental illness (Hjern and Manhica 2013), but international figures point to as many as one in five children (Reupert et al. 2012). International as well as studies from Scandinavia estimate that a substantial minority of patients in adult psychiatric care have children under 18 years old (Lauritzen 2014; Maybery and Reupert 2018; Ruud et al. 2019). The increased risk of developing mental health problems is well established in children growing up with a parent with mental illness (LeFrancois 2012; Leijdesdorff et al. 2017; Ramchandani and Psychogiou 2009).

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In this paper, we describe the development and initial results of an interactive touch based questionnaire aiming to support selfreporting of the psychological health among children with intellectual disabilities (ID) aged 12-15. The questionnaire was developed in co-operation with pupils and teachers in special education and is tailored to assess psychological health, peerrelations, school-and family environment in youths with various disabilities. Preliminary results indicate that the application can be reliably completed by pupils without assistance from adults, independent of the youth's level of word comprehension and reading ability. The application allow for children with ID to selfreport on psychological health, an essential first step in order to understand factors that contribute to variation in psychological health. This information can be the ground for designs that can change the everyday life for all children and youth with a chronic intellectual disability. The project is still ongoing, and the contribution of this paper is the lessons learned from developing a questionnaire that support self-reporting and assessment of psychological health in children with intellectual disabilities.

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