Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd

A realist evaluation of a physical activity participation intervention for children and youth with disabilities: What works, for whom, in what circumstances, and how?

Background: The need to identify strategies that facilitate involvement in physical activity for children and youth with disabilities is recognised as an urgent priority. This study aimed to describe the association between context, mechanisms and outcome(s) of a participation-focused physical activity intervention to understand what works, in what conditions, and how. Methods: This study was designed as a realist evaluation. Participant recruitment occurred through purposive and theoretical sampling of children and parents participating in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway. Ethnographic methods comprising participant observation, interviews, and focus groups were employed over 15 weeks in the field. Data analysis was completed using the context-mechanism-outcome framework of realist evaluation. Context-mechanism-outcome connections were generated empirically from the data to create a model to indicate how the program activated mechanisms within the program context, to enable participation in physical activity. Results: Thirty one children with a range of disabilities (mean age 12y 6 m (SD 2y 2 m); 18 males) and their parents (n=44; 26 mothers and 18 fathers) participated in the study. Following data synthesis, a refined program theory comprising four context themes, five mechanisms, and six outcomes, were identified. The mechanisms (choice, fun, friends, specialised health professionals, and time) were activated in a context that was safe, social, learning-based and family-centred, to elicit outcomes across all levels of the International Classification of Functioning, Disability and Health. Conclusions: The interaction of mechanisms and context as a whole facilitated meaningful outcomes for children and youth with disabilities, and their parents. Whilst optimising participation in physical activity is a primary outcome of the Local Environment Model, the refined program theory suggests the participation-focused approach may act as a catalyst to promote a range of outcomes. Findings from this study may inform future interventions attempting to enable participation in physical activity for children and youth with disabilities

Teaching: Natural or Cultural?

In this chapter I argue that teaching, as we now understand the term, is historically and cross-culturally very rare. It appears to be unnecessary to transmit culture or to socialize children. Children are, on the other hand, primed by evolution to be avid observers, imitators, players and helpers—roles that reveal the profoundly autonomous and self-directed nature of culture acquisition (Lancy in press a). And yet, teaching is ubiquitous throughout the modern world—at least among the middle to upper class segment of the population. This ubiquity has led numerous scholars to argue for the universality and uniqueness of teaching as a characteristically human behavior. The theme of this chapter is that this proposition is unsustainable. Teaching is largely a result of recent cultural changes and the emergence of modern economies, not evolution

Myötätunto lasten vertaiskulttuurissa

Peers have a significant impact on children’s learning and development (e.g., Rubin, Bukowski & Bowker, 2015; Sawyer, 2015; Corsaro & Eder, 1990). Interactions with other same age children not only influence children’s social, cognitive and emotional competencies, but importantly constitute the very grounds for their development. Previous research has shown that peers have a critical role in children’s language learning, cognitive skills, physical wellbeing as well as in socio-cognitive areas of development, like collaboration, cooperation and pro-sociality. While this body of work has significantly advanced our understanding of the nature of peer interactions, there is still a dearth of knowledge on how children orient to and address the worries, concerns or suffering of their peers in everyday settings, namely, to act with compassion. To this end, in this chapter we will present our cultures of compassion approach (Lipponen, Rajala, & Hilppö, 2018) to studying compassion in children’s peer interactions in a Finnish kindergarten and share an example of our video ethnographic work and interaction analysis on compassion. We will conclude our chapter by discussing how it is possible to foster compassionate peer cultures in early child education and care settings.eers have a significant impact on children’s learning and development (e.g., Rubin, Bukowski & Bowker, 2015; Sawyer, 2015; Corsaro & Eder, 1990). Interactions with other same-age children not only influence children’s social, cognitive and emotional competencies, but importantly constitute the very grounds for their development. Previous research has shown that peers have a critical role in children’s language learning, cognitive skills, physical wellbeing as well as in socio-cognitive areas of development, like collaboration, cooperation and pro-sociality. While this body of work has significantly advanced our understanding of the nature of peer interactions, there is still a dearth of knowledge on how children orient to and address the worries, concerns or sufferings of their peers in everyday settings, namely, to act with compassion. To this end, in this chapter we will present our cultures of compassion approach (Lipponen et al., 2018) to studying compassion in children’s peer interactions in a Finnish kindergarten and share an example of our video ethnographic work and interaction analysis on compassion. We will conclude our chapter by discussing how it is possible to foster compassionate peer cultures in early child education and care settings.Peer reviewe

‘Positive Education’: A Professional Learning Programme to Foster Teachers’ Resilience andWell-Being

Professional learning can make a significant contribution to teachers’ resilience and well-being. This chapter reports the implementation of a professional learning programme focused on resilience and well-being, targeting 35 inservice Portuguese teachers, mostlyworking in middle and secondary education. The ‘Positive Education’ programme was adapted from the European project ENTREE (ENhancing Teachers REsilience in Europe) and encompasses six training modules: 1—Resilience; 2—Building Relationships; 3—Emotional Well-Being; 4—Stress Management; 5—Effective Teaching; 6—Classroom Management, and an additional module named ‘Education forWell-Being’. The concepts and topics for each module will be discussed, along with the design and implementation of the strategies followed to promote a positive, collaborative and reflexive environment (e.g. wellness activities, stress relief and work–life balance). This chapter also describes the main effects of the training programme on participants, gathered through interviews at the end of the training sessions.Fundação para a Ciência e Tecnologia -FCTinfo:eu-repo/semantics/publishedVersio