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This paper focuses on an innovative approach to preparing children and young people, with Spina Bifida, to move from child-centered to adult-oriented healthcare systems. Reflecting on our role in delivering a national nurse led service, we set to identify and critique international transition tools in use for this population. Specifically, we aimed to identify the core capabilities and indicators of progression to successful transition, so that holistic interventions could be planned to match the needs of individuals and their carers. There were two phases to the study, initially focusing on a systematic literature review on transition tools and the specific items that these tools captured, including skills, abilities and behaviors. Phase two culminated in the articulation of a segmented and incremental "road map", aligned with facets deemed essential for a successful healthcare transition. The reporting of the literature review (phase one) followed the PRISMA guidelines and shaped the qualitative element of the study (phase two) through the use of semi-structured interviews and thematic analysis. The search strategy yielded 11 studies, which were then manually searched for other relevant literature, adding a further 14 articles. The review analyzed 7 specific tools for spina bifida and 8 generic tools, which were deemed appropriate for this group of patients. A comprehensive list of core capabilities was then articulated and framed to fit a progression timeline. Specific interventions were formulated to explore ways to co-produce resources that could enhance and support a planned transition to adult-focused services. Our proposed mapping of capabilities and progression could shape other transition programs, where nurses work collaboratively with young people, carers and other members of a team. More work is needed to further explore and embed the framework that, as we did, could be digitized and shared with all stakeholders involved in the transition process. [ABSTRACT FROM AUTHOR]

A growing body of conceptual evidence over the last decade has increased our understanding of parents' experiences of having an infant with complex congenital heart disease. These concepts include parents' feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents' experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children's cardiac nurses responsible for parental education, discharge planning and coordination. To explore parents' experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery. A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks' post discharge (T1), 8 weeks' post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores. Sixteen parents of 12 infants participated. Four "patterns of transition experience" emerged, the fourth "Mastery", is discussed in this paper. Mastery can be contextualized in terms of the parents' journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p =.011), T2 (p =.018) and T3 (p =.012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant. Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework "Parenting through Transitions – hospital to home" emerged that could assist in structuring assessment of parents' knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant's first stage of complex cardiac surgery. Parents learning was dynamic and transformational, learning opportunities overlapped transitional phases of their infant's journey, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. The transition from hospital to home and traversing the physical boundary of leaving the hospital for the first time with their infant (liminal phase), was loaded with emotionally traumatic experiences that could not be separated from the transition that was being explored within this study. Adjusting to the new situation, developing confidence over time, and becoming comfortable as they mastered new skills, demonstrated that some of these parents could pass through that liminal space to mastery of a new normal (post-liminal phase), which encompassed competence, integration, and comfort. [ABSTRACT FROM AUTHOR]

The overall purpose of this research was to explore the experiences of families living with a child with autism spectrum disorder (ASD). This paper reports the experiences of siblings of children with ASD, from the perspective of both siblings and parents. Using a phenomenological case study design, participants completed face sheets to provide context for one-on-one, semi-structured interviews, which were transcribed verbatim, and verified via member checks. Van Manen's (1990) selective approach was used for data analysis. Siblings and parents described that the children with ASD made their siblings the targets of their aggression, and siblings spent less time with parents the children with ASD required more attention. It was also acknowledged that the siblings were more mature as a result of having a sibling with ASD. Families acknowledged that the relationship between children with ASD and their siblings would not differ if their children did not have ASD. This work highlights the importance of examining the family as a unit to provide a multifaceted perspective of how having a child with ASD affects their siblings. [ABSTRACT FROM AUTHOR]

Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children’s experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children’s participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews. [ABSTRACT FROM PUBLISHER]

Emotional response toward menarche is a psychological problem for female adolescents. In addition menarche is considered taboo and embarrassing by female adolescents. Many female adolescents have a negative feeling and do not prepare for menarche. The purpose of this paper is to identify female adolescents' preparation and emotional response toward menarche. This study used a qualitative method including focus group discussion (FGD) and in-depth interview. FGD was carried out with five female adolescents in a school setting about female adolescents' preparations and emotional response toward menarche. The participants were female adolescent students who had not entered menarche yet. Some teachers were also interviewed as key persons. The results of this study indicate that female adolesents do not prepare for menarche. The participants did not have adequate knowledge and felt ashamed and worried about menarche. This study recommended the use of reproductive health education related to menarcheal preparations in school and community settings to prepare female adolescents to confidently face menarche. [ABSTRACT FROM AUTHOR]

Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child’s carers, their parents, most often their mothers, are required to undertake a great deal of the child’s care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state’s responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children’s care. I use Margret Urban Walker’s ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child’s life and their death. [ABSTRACT FROM PUBLISHER]