BACKGROUND: Children with special healthcare needs (CSHCN) live with long-term physical, developmental, behavioural, or mental conditions that affect everyday functioning and require specialized care. According to the International Classification of Functioning, Disability and Health (ICF), such conditions may cause impairments in body functions and structures, limitations in activities, and restrictions in participation, shaped by environmental factors. Evidence on social participation and its correlates in CSHCN remains limited. Therefore, we aimed to identify which correlates are associated with social participation across different conditions and indications in a multi-site sample of CSHCN in Social Paediatric Centres (SPCs) in Germany. METHODS: This study analysed parent-reported data of CSHCN (3-18 years) from the baseline of the PART-CHILD cohort collected in routine care in 15 SPCs in Germany (2019-2020). Social participation (outcome) in home, community, school, and living activity domains was assessed using the German Child and Adolescent Scale of Participation (CASP). In the regression analysis, independent variables included environmental factors (parental educational attainment, German native language) and health-related factors (impairment type and complexity reported as reason for referral to the SPCs, health-related quality of life (HRQoL)), as well as age (operationalised in groups [3-6; 7-10; 11-18 years]) and sex as covariates. Linear complete case regression models were performed, and β-coefficients and 95% confidence intervals were reported. RESULTS: Five hundred fifty-one families of CSHCN (68.24% female; 44.46% aged three to six and 34.66% from seven to ten years old) were available for analysis (10.99% missing outcome). CASP total mean score was 75.99 (± 20.03; range: 25-100), the lowest in living activities subscale (68.07 ± 24.81), including household activities, shopping, transportation. In the complete case regression analysis (n = 350), older child age and higher HRQoL were associated with higher social participation score across all domains. Children with both physical and cognitive impairments had lower CASP scores in the total, home, and school models, with a trend to association in the community model. Lower parental educational attainment was significantly associated with reduced social participation in the living activities subscale. CONCLUSIONS: In this study, we confirmed previous findings on factors determining social participation in CSHCN, such as age and higher HRQoL. Impairment complexity (combined physical and cognitive impairments) decreased participation in home and school. The lower participation in daily living activities for lower educated parents confirms, that social environment significantly influences social participation. This highlights that to improve social participation, strategies are needed that address family-level and broader environmental barriers to lessen social and functional disadvantages in particularly vulnerable subgroups. TRIAL REGISTRATION: PART-CHILD cohort, German Clinical Trials Register - Deutsches Register Klinischer Studien (DRKS), DRKS00015054, registered on 16 November 2018.
Carolina Fioroni Ribeiro da Silva, Angélique Herrler, Marielle Wirth et al.
Family activities foster emotional bonds, shared values, and the well-being of all members. Children with disabilities are generally less involved in family activities, with greater participation at home than in community settings. However, little is known about the predictors of their participation, particularly the roles of independence, challenging behavior, and social–emotional competencies. In this study, parents of children with disabilities of primary school age (N = 315) completed surveys on family activities, their own parental behaviors, and their child’s social and emotional competencies, independence, and frequency of challenging behaviors. Children’s independence and social–emotional competencies, together with parental support, emerged as positive predictors of family activities (family time, mealtime and household tasks, and socializing with others). In contrast, challenging behaviors reduced participation in socializing, while parental permissiveness reduced participation in mealtime and household tasks. These results indicate that both child characteristics and parental behaviors can enhance or hinder participation in family activities, providing insights for targeted interventions to improve family life for children with disabilities. • Child independence and social-emotional skills boost family activity participation. • Parental support enhances engagement in family time, meals, and household tasks. • Challenging behaviors reduce children’s participation in socializing with others. • Parental permissiveness lowers involvement in mealtimes and household activities.
Abstract Research consistently shows that youth participation in child protection decision-making is limited and challenging. This study used video-elicitation interviews and combined Critical Childhood Studies with Positioning Theory to explore how interactions between social workers and young people shape participation. Seventeen recorded meetings allowed both groups to reflect individually on their interactions, which is uncommon in this field. To illustrate a recurring pattern of youth reluctance to reflect in meetings, a detailed analysis is presented of one filmed and transcribed meeting between a social worker and a young girl, along with interviews with both participants. The study reveals how social workers and young people are pre-positioned and negotiate their positions during meetings, thereby shaping participation. It shows how self-reflection and the verbal expression of emotions can become obligations within youth participation, and how youth resistance or reluctance may be viewed as a critique of available positions. The article also highlights broader challenges of maintaining meaningful participatory ideals within an institutional framework focused on protection and risk assessment. Overall, it calls for a shift in child protection policy and practice to recognize youth participation as a relationally negotiated and context-dependent phenomenon.
This article presents an overview of the theoretical stance within the BMBF-funded project "geste - Educational Aids as Work on the Common Good - Between Effect-Oriented Management and Equal Participation in Germany and England", focussing on the subproject of sociology of work. For approaching the working conditions of employees in residential child and youth care, the authors propose to understand participation in work as a power struggle. This perspective enables a critical stance concerning employees' participation with regard to their working conditions that is discussed for the German case.
This article examines how agency, participation and democracy are lived, negotiated and made visible in child care with very young children. Drawing on a doctoral ethnographic case study in a Portuguese infant-toddler room, it presents a secondary qualitative analysis of field notes, pedagogical documentation and a semi-structured educator interview. The study challenges deficit-oriented and adult-centred understandings of babies by showing that agency is expressed relationally and bodily through gestures, movement, affect, refusal, repetition, proximity seeking and participation in routines. Participation is understood as an everyday pedagogical condition constructed through attentive listening, time, space, documentation, family dialogue and reflective professional decision-making. The findings identify four interrelated dimensions of democratic praxis: responsive care; environments that invite initiative; pedagogical documentation as visibility and dialogue; and professional reflexivity in addressing tensions between discourse and practice. The analysis shows how babies’ embodied expressions can become consequential in pedagogical decision-making. Democracy in child care is therefore understood not as a topic to be taught, but as a relational, ethical and political way of organising everyday pedagogical life, enabling the youngest children to experience belonging, recognition and participation from the beginning of life.
Abstract The relationship between children's human rights to protection and to what is commonly referred to as ‘participation’ has received significant attention, with many scholars critiquing the purported tension between the two approaches and demonstrating how child participation should be a core feature of child protection. Less attention has been paid to the converse and, we argue, essential precursor of participatory protection practice – the significance of the child's right to be protected from harm as a means to ensuring successful child participation. Drawing on the example of the multidisciplinary Barnahus model, this article explores the multifaceted relationship between participation and protection, suggesting that there needs to be greater acknowledgement of the role of collective child participation in delivering the conditions where individual children who have witnessed or experienced violence feel and are safe to express themselves.
There is an urgent need for a rigorous science of patient and public participation, involvement and engagement (PPIE) in child and adolescent mental health research. In this Perspective we argue that current PPIE practices lack solid theoretical foundations and require systematic evaluation of their epistemic and ethical impacts. We call for the development of clear concepts of ‘lived experience’ and ‘voice’ and the establishment of a shared framework to assess the value of PPIE in advancing discovery science. We end with ten initial questions to advance open, multi-stakeholder dialogue and debate on PPIE in the field. In this Perspective, Singh et al. examine the growing role of patient and public participation, involvement and engagement in discovery science, highlighting the need for clearer guidance in the context of youth mental health research.
Ilina Singh, Essi M. Viding, Lucienne Jeannette Spencer et al.
Pediatric acquired brain injury (ABI) can lead to lifelong challenges restricting social participation, which is an important goal for rehabilitation due to associations with improved wellbeing. This evaluation considered the utility of the Child Adolescent Scale of Participation (CASP) in ABI rehabilitation services. The 20-item measure is rated on a Likert scale with reference to what the rater would expect of their child at that age, including "not applicable" (N/A). It showed high internal consistency (α = 0.954-0.968). Two-step cluster analysis indicated greater difficulties in children with lower participation, including more impairments of executive function and higher staff involvement. Between-group analysis indicated higher rates of N/A answers for younger children and those of ethnic minorities. Overall, the CASP is reliable and clinically useful on an individual level, helping identify people who may need prioritizing for neurorehabilitation; however, group-level analyses were more challenging due to high frequency of N/A responses.
Leona Wolters, William F. White, Holly Ellerton et al.
This study aims to examine how immigrant parents’ participation and trust in child welfare services are shaped by dominant ideologies and operational practices within the system. The article draws on empirical data gathered through semi-structured interviews with ten immigrant parents who have experience with the Norwegian Child Welfare Services (NCWS) due to allegations of child abuse and/or neglect. The overall findings reveal parents had limited participation in the intervention process and had low trust in the NCWS, with several explanatory factors associated with multiple aspects of the services. Yet, the service’s hyper-individualistic child-centered approach, both as a dominant perspective and modus operandi of the intervention practices, were found to have profound impacts on parents’ reported experience of otherness, exclusion during the intervention process and lack of trust in the NCWS, with the overarching themes being: (a) The dominance of the individualistic child-centered perspective and the resulting incompatibility of meaning between parents and the NCWS (b) The child-centered interventions’ binary and adversarial approach, and (c) The child-centered interventions’ narrow focus and risk-oriented approach, that appears to neglect the parents’ broader socioeconomic and cultural context.
