'Of course you crash' Parenting a young child with neurodevelopmental difficulties.

BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental disorders without yet having a formal diagnosis. AIM: This study aims to deepen our understanding of the need for support among families with young children with neurodevelopmental difficulties. Specifically, it explores parents' perspectives concerning their children, life circumstances, and emotional experiences in parenting. METHODS AND PROCEDURES: Qualitative semi-structured interviews were conducted with ten parents of children aged 2.5-5 years, referred to a child psychologist due to reported neurodevelopmental difficulties. The interviews were transcribed and analysed using qualitative content analysis. OUTCOMES AND RESULTS: Two themes, each containing four and three categories, respectively, emerged in the analysis: Parenting our child with neurodevelopmental difficulties is tough in so many ways and Prevent, manage and make up like a Pro. CONCLUSION AND IMPLICATIONS: The parents express very similar challenges, difficulties and problems as parents of children with diagnosed neurodevelopmental disorders. The main difference lies in the lack of accessible support or help for these parents. WHAT THIS PAPER ADDS: This study provides insights into how parents of children with suspected neurodevelopmental difficulties perceive their child and their overall life circumstances. The narratives show the challenges these parents face due to their children's multifaceted difficulties, leading to a need for multi-disciplinary support from professionals. The narratives also illustrate the strong emotions that arise in parenting, which in itself indicates a need for support. The study also provides further support for the importance of parents connecting with others facing similar life circumstances. The families often feel isolated despite the need for increased informal support in terms of more adults being involved with the children.

Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support.

Objective: To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support. Method: Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression. Results: Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found. Conclusions: Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.

"Daddy comforts me"-Young Swedish children's perspectives on their family relations before and after their parents' participation in a parenting programme.

Despite extensive research assessing parenting support, there is a lack of knowledge about the perspectives of the youngest children. In this study, we explored changes in preschool children's emotional and relational experiences at home before and after their parents participated in a parenting intervention, the Triple P parenting programme. Nine children in total were interviewed, aged 3-6 years, whose parents participated in a group parenting intervention. The interviews were conducted during the first and final group sessions attended by the children's parents. Data were analysed qualitatively, using a longitudinal approach, resulting in a deductive mapping of the children's statements onto four themes, based on the parenting intervention's main objectives. Further, changes in content for each of the four themes were assessed. Before the programme, children described conflicts with siblings, parents' negative emotions, and punitive parenting behaviours. After the programme, sibling conflicts remained, but parents' negative emotions decreased and parent threats and violence ceased. Positive family interactions and quality time increased, along with experiences of tenderness and being comforted. Parents also implemented new strategies such as verbal management and more comforting or soothing behaviours. Clinical implications of the results include promoting positive sibling relationships, emphasising parental self-regulation, encouraging empathy and reconciliation, and highlighting the importance of spending quality time with children. These findings contribute to a better understanding of children's perspectives and provide implications for clinical practice and future research.

Are We Ready to Really Hear the Voices of Those Concerned? Lessons Learned from Listening to and Involving Children in Child and Family Psychology Research.

A changing view of children, accelerated by the Convention of the Rights of the Child (UN in Convention on the rights of the child, UN Doc. A/RES/44/25, 1989, http://www2.ohchr.org/english/law/pdf/crc.pdf ) has shifted the landscape of child and family research over the last few decades. Once viewed with low credibility and operating outside the interpretive framework of adult researchers, the rights-bearing child is increasingly recognized not only as having the capacity but also the right to participate in research. More recently, this movement has transitioned from the direct engagement of children as research participants-now considered commonplace, although less so for those who are structurally vulnerable-to the involvement of children in research design, review, conduct, and dissemination. Yet, both practical and ethical challenges remain. While children have the right to participation, they also have the right to protection. In this commentary, we set out to: (i) lay forth epistemic, child rights, and child sociology arguments for doing research about, with and by children and youth; (ii) recount our own journey of including children and youth in research to demonstrate the unique knowledge and insights gained through these approaches; and (iii) offer lessons learned on how to engage children and youth in research, including the involvement of structurally vulnerable groups.

Patterns of mental health problems and well-being in children with disabilities in Sweden: A cross-sectional survey and cluster analysis.

BACKGROUND: Children with disabilities have an increased risk of mental health problems. Patterns of mental health problems and well-being may vary. AIMS: To identify patterns of mental health problems and well-being in children with disabilities in Sweden, and investigate the influence of parental background (migration, education), and child cognitive level. METHOD: In this cross-sectional study, cluster analysis was used to analyse parents' ratings of conduct problems, emotional symptoms, and prosocial behaviour on the Strengths and Difficulties Questionnaire (SDQ) in children with disabilities (n = 136). The influence of parental background (migration, education) and child cognitive level on cluster membership was explored through multinomial logistic regression. RESULTS: Five clusters of mental health patterns emerged. Three clusters had mean ratings near or past clinical cut-off for one each of the SDQ-subscales. One cluster had difficulties on all three subscales. Greater child cognitive difficulties increased the likelihood of low prosocial behaviour (OR 2.501, p < .001) and of difficulties on all three subscales (OR 2.155, p = .006). Parental background did not influence cluster membership. CONCLUSION: Children with disabilities display varying mental health patterns. Awareness of the complexity of mental health patterns among children with disabilities is important. Screening and support for emotional symptoms and prosocial behaviour deficits should be considered for children with conduct problems.

Successful implementation of parenting support at preschool: An evaluation of Triple P in Sweden.

Although emotional and behavioural problems among young children are common and, if unaddressed, can lead to multi-facetted problems later in life, there is little research investigating the implementation of parenting programs that target these problems. In this study, the RE-AIM framework was used to evaluate the implementation of the Triple P parenting program in a preschool setting at a medium-sized municipality in Sweden. Reach increased over time, showing an overall increase in participating fathers and parents with lower education. Effectiveness outcomes showed an improvement in emotional and behavioural problems in children and less mental health-related symptoms and higher self-efficacy in parents. Adoption rate was 93.3%. To ensure staff "buy-in", designated coordinators made changes in recruitment procedures, and provided supervision and training to all Triple P practitioners. Implementation adaptations were made, such as minor revisions of parenting strategies and other program content, as well as providing child care during seminars and groups, and setting up weekend-groups. Maintenance assessed through 12 month follow-up data suggested that several child and parent outcomes were maintained over time. Uppsala municipality continues to offer Triple P to parents. The reach, effectiveness, adoption, implementation and maintenance of the program were all satisfactory and demonstrated the suitability of delivering evidence-based parenting support using preschools as an arena.

Social workers' perspectives on a medical home model for children and adolescents in out of home care - an interview study.

BACKGROUND: This study seeks to explore how social workers have perceived and experienced a medical home model for children and adolescents in out-of-home care in Uppsala County, Sweden. METHOD: A qualitative explorative study was conducted, which involved ten semi-structured individual telephone interviews with social workers. The study sample included employees within the social service, working in a specialised case unit who had experience of referring children and/or adolescents to the medical home model called Hälsofam. Data were analysed inductively using thematic analysis. RESULTS: The findings of the current study indicated that working with Hälsofam has offered social workers a way into the health care sector and an active collaborative working situation, with focus on organised work across the 'silos' of care services. However, the findings raised the question of whether or not all children and adolescents have the same possibility to receive care from Hälsofam. CONCLUSION: The findings indicated that the Hälsofam model had a positive impact on the interrelations between the social service and the health care sector. Yet, findings showed that personal views of the social worker and the societal situation in which they operate create limitations for providing care for every child and adolescent. This study adds to the extant literature for it addresses the limitations within the work of children and adolescents in out-of-home care.

Evaluation of the teaching recovery techniques community-based intervention for accompanied refugee children experiencing post-traumatic stress symptoms (Accompanied refugeeS In Sweden Trial; ASsIST): study protocol for a cluster randomised controlled trial.

BACKGROUND: Refugee children have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue for years after resettlement. The Accompanied refugeeS In Sweden Trial (ASsIST) aims to evaluate a community-based intervention, called 'Teaching Recovery Techniques' (TRT), for accompanied refugee minors experiencing PTSD symptoms. METHODS/DESIGN: A cluster randomised controlled trial will be conducted in which participants will be randomly allocated to one of the two possible arms: the intervention arm (n=113) will be offered the TRT programme and the waitlist-control arm (n=113) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; c.8 weeks after randomisation) and follow-up (T3; c.20 weeks after randomisation). ETHICS AND DISSEMINATION: Ethical approval was granted by the Regional Ethical Review Board in Uppsala (Ref. 2018/382) (24th February 2019). Results will be published in scientific journals. TRIAL REGISTRATION DETAILS: ISRCTN17754931. Prospectively registered on 4th June 2019.

Evaluation of the Teaching Recovery Techniques community-based intervention for unaccompanied refugee youth experiencing post-traumatic stress symptoms (Swedish UnaccomPanied yOuth Refugee Trial; SUPpORT): study protocol for a randomised controlled trial.

BACKGROUND: In 2015, 162,877 persons sought asylum in Sweden, 35,369 of whom were unaccompanied refugee minors (URMs). Refugee children, especially URMs, have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue years after resettlement. The Swedish UnaccomPanied yOuth Refugee Trial (SUPpORT) aims to evaluate a community-based intervention, called Teaching Recovery Techniques (TRT), for refugee youth experiencing PTSD symptoms. METHODS/DESIGN: A randomised controlled trial will be conducted in which participants will be randomly allocated to one of two possible arms: the intervention arm (n = 109) will be offered the TRT programme, and the waitlist-control arm (n = 109) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; about 8 weeks after randomisation) and follow-up (T3; about 20 weeks after randomisation). DISCUSSION: This study will provide knowledge about the effect and efficiency of a group intervention for URMs reporting symptoms of PTSD in Sweden. TRIAL REGISTRATION: ISRCTN, ISRCTN47820795. Prospectively registered on 20 December 2018.

Teaching Recovery Techniques: evaluation of a group intervention for unaccompanied refugee minors with symptoms of PTSD in Sweden.

In 2015, a total of 35,369 unaccompanied refugee minors (URMs) sought asylum in Sweden. In a previous study of 208 URMs, we found that 76% screened positive for PTSD. This study aimed to (1) evaluate the indicated prevention program Teaching Recovery Techniques (TRT) in a community setting and describe the program's effects on symptoms of PTSD and depression in URMs; and (2) examine participants' experiences of the program. The study included 10 groups. Methods for evaluation included the Children's Revised Impact of Event Scale (CRIES-8) and the Montgomery-Åsberg Depression Rating Scale Self-report (MADRS-S) at baseline and at post-intervention. Qualitative interviews were conducted with 22 participating URMs to elicit their experiences. Pre- and post-measures were available for 46 participants. At baseline, 83% of the participants reported moderate or severe depression and 48% suicidal ideation or plans. Although more than half (62%) of the participants reported negative life events during the study period, both PTSD (CRIES-8) and depression (MADRS-S) symptoms decreased significantly after the intervention (p = 0.017, 95% CI - 5.55; - 0.58; and p < 0.001, 95% CI - 8.94; - 2.88, respectively). The qualitative content analysis resulted in six overall categories: social support, normalisation, valuable tools, comprehensibility, manageability, and meaningfulness when the youth described their experiences of the program, well reflecting TRT's program theory. Overall, results indicate that TRT, delivered in a community setting, is a promising indicated preventive intervention for URMs with PTSD symptoms. This successful evaluation should be followed up with a controlled study.

The computer-assisted interview In My Shoes can benefit shy preschool children's communication.

Interviewing children is a cognitively, socially, and emotionally challenging situation, especially for young and shy children. Thus, finding methods that aid rapport and increase these children's communication is important. The present study investigated whether children's verbal and non-verbal communicative behavior developed differently during the rapport phase, depending on whether children were situationally shy or not, and whether the interview was conducted using the computer-assisted interview In My Shoes (IMS) or a Standard verbal interview. The sample consisted of 60 children aged 4 to 5-years-old. The results showed that for the shy children in the IMS group their talkativeness increased and their answer latency decreased including the amount of encouragement the child needed to talk, while no changes were observed for the shy children in the Standard verbal interview group. There were no significant differences in the non-verbal behavior for the shy children regardless of the interview method used. For the non-shy children, overall, the interview method did not affect either the verbal or the non-verbal outcomes. Our findings indicate that IMS can be a useful tool during the rapport-building phase with shy children as it helps these children to improve their verbal communication.

In My Shoes - Validation of a computer assisted approach for interviewing children.

Interviewing young children presents a challenge because they tend to provide incomplete accounts and are easily misled. Therefore there is a need for techniques to improve young children's recall, while maintaining accuracy and increasing completeness. The computer-assisted interview In My Shoes (IMS) is an aid that potentially offers a way for young children to provide accounts of their experiences. This study examined the validity of IMS, by comparing it with a forensic best practice interview approach using a real-life clinical situation to ensure high ecological validity. Children were randomly assigned to either method and both accuracy and completeness of statements made by 4- and 5-year-olds (N=54) regarding a video-documented health check-up were assessed. The In My Shoes interviews were as good as best practice interviews on all accuracy measures for both age groups, except for object accuracy that was better in the forensic interview condition. Events description completeness was similar in both interview conditions; however, IMS interviews generated more complete statements about people present at the visit. The findings suggest that the IMS approach yields comparable results to a best practice interview, and it can be used as an alternative aid in child interviews.