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Background: Little is known about adults' experience of living with cystic fibrosis (CF) specifically in relation to the gut. However, their unique perspectives may be meaningful to children with CF and inform the understanding and practice of dietitians. The present study aimed to explore adults' lived experience of the CF gut and how they learnt to manage the gut as they were growing up. Methods: Semi‐structured interviews were conducted with adult inpatients (n = 10). Interviews were audio‐recorded, transcribed verbatim and accounts analysed using interpretative phenomenological analysis. Results: Three super‐ordinate themes were identified: taking Creon, the learning process and this much I (now) know. Participants accounts of how CF affects the gut predominantly focused on taking Creon (pancreatin, Mylan). Various strategies were employed for coping with peer responses to taking Creon at school. Several participants reached adulthood before they understood and/or accepted that taking Creon consistently needed to be normal for them. Knowledge and understanding developed over time, with 'CF experience' and was shaped by family, CF care teams and other children with CF. All had unmet information needs when growing up. Having key explanations earlier, to make connections between eating, taking Creon, gaining weight and growth, did or would have helped most participants. Participants urged children to be assertive, ask questions and not only be involved in managing their diet and gut, but also begin to take control of this aspect of their CF. Conclusions: Supporting development of knowledge, skills and confidence to manage diet and the gut needs to be integral to care throughout childhood. [ABSTRACT FROM AUTHOR]

Accessible summary What is known on this subject? Young people's mental health is a concern to people around the world. Good emotional health promotes mental health and protects against mental illness, but we need to know more about how to help young people look after their emotional health., We are learning that research is better if the public are involved in it, including children and young people. Therefore, we need to listen carefully to what young people have to say., In this paper, we describe some research that involved young people from start to finish. We were asking what kind of emotional health support would be useful to them., What this paper adds to existing knowledge? We developed a useful way to involve young people in research so their voice can be heard., Young people like to use the Internet to find emotional health support and information, but need to know which web sites they can trust., What are the implications for practice? Our method of bringing young people together to tell us their views was successful., It is important to explore ways to help young people judge the quality of emotional health web sites., Abstract Introduction Youth mental health is a global concern. Emotional health promotes mental health and protects against mental illness. Youth value self-care for emotional health, but we need better understanding of how to help them look after their emotional health. Participatory research is relevant, since meaningful engagement with youth via participatory research enhances the validity and relevance of research findings and supports young people's rights to involvement in decisions that concern them. Aim We aimed to develop a participatory approach for involving youth in research about their emotional health support preferences. Method Our team included a young expert-by-experience. We developed a qualitative, participatory research design. Eleven youth (16-18 years) participated in focus groups, followed immediately by a nominal group exercise in which they analysed the data, thus enhancing methodological rigour. Results This process highlighted youth perspectives on self-care strategies for emotional health. Discussion and implications for practice Our simple participatory research approach generated trustworthy and credible findings, which accurately reflect youth perspectives and are consistent with the literature, endorsing our method. Young people said that they want reassurances of quality and safety when accessing digital mental health resources. These findings can inform future development of youth-oriented digital mental health resources. [ABSTRACT FROM AUTHOR]

Children's health policy has highlighted the need to develop self-care programmes. However, there is a lack of evidence on which to base the development of such programmes. This paper reviews the published research on the effectiveness of self-care support interventions for children and young people with asthma, cystic fibrosis and diabetes. A systematic search was conducted of a range of electronic databases, supplemented by searching the reference lists of retrieved papers and published reviews. Retrieved studies were assessed against quality and eligibility criteria by two independent reviewers. The results were narratively synthesized to examine the effectiveness of self-care support interventions on health status, psycho-social well-being, condition-related knowledge, health service use and participant satisfaction. The search strategy identified 4261 papers which were screened against the review inclusion criteria. A total of 194 papers were assessed as being potentially eligible for inclusion with 15 papers being judged as adequate to include in the review. There is strong evidence of the effectiveness of interventions that target children/young people; use e-health or group-based methods; that are delivered in community settings. There is no evidence that interventions that focus on parents alone or are delivered only in hospital settings are effective. While there is some evidence to inform the development of self-care support programmes, there is a need for well-designed trials of interventions that are feasible to transfer into real-life settings and which involve parents and children in their development. [ABSTRACT FROM AUTHOR]

Aims. To explore negotiation of responsibilities for asthma self-care between a group of preadolescent children aged 7–12 and their parents/carers and to explore the meaning of responsibility to these children and their adult carers. Background. Living with asthma requires the distribution of a range of responsibilities between children and their adult carers, highlighting tensions between protection and promotion of autonomy. Previous studies have identified diverse factors associated with transfer of responsibility but a better understanding is required of the meaning of responsibility in children’s lives and how parents and children negotiate responsibilities. Design. The design was qualitative. Methods. Eighteen child participants aged 7–12 years and their parents/carers participated in open-ended, conversational-style interviews. The framework approach was used to analyse the data and interpretation of data drew upon both feminist epistemology and sociological understandings of children, health and the body which relocate subjective experience at the heart of scientific enquiry. Results. Children demonstrated responsibility by avoiding asthma exacerbators and limiting the effect of asthma on themselves and their parents but there were limitations on children’s opportunities to exercise some responsibilities. Conclusions. It is possible to consider responsibility as the exercise of agency by children rather than simply as compliance with adults’ instructions and prescriptions. Relevance to clinical practice. Some parents would like more assistance from health professionals in managing the process of increasing independent self-care by children. It is important to maintenance of the health of children with long-term conditions that the distribution of responsibilities between adults and children both ensures children’s safety and provides appropriate preparation for independence in adult life. Understanding the process by which parents and children negotiate distribution of responsibilities for long-term conditions could provide a basis for development of interventions to respond to parents’ requests for more professional support for managing this process. [ABSTRACT FROM AUTHOR]

Aims of the study. To present an overview of review management of childhood asthma in one UK primary care trust with respect to organization and perceptions of key stakeholders and children's and families' needs. Background. Review management of childhood asthma in primary care is important in addressing the continuing high levels of morbidity. However, the delivery of this service appears to be fragmented, so it is not known how well primary care asthma clinics function. Children's, parents' and professionals' perceptions of such clinics and the roles they play within them are also poorly understood. Research design.Aqualitative case study design was used in the study. This is a form of enquiry that investigates contemporary issues within their real life contexts, using particular situations within the case to describe important phenomena. Methods. Eighteen children, 16 parents, 14 practice purses and 14 general practitioners from 14 general practices in one primary care trust were interviewed. Review appointments were observed and asthma-related documentation examined. Findings. Key findings point to diversity in the service and that key stakeholders' view practice nurses as primarily responsible for the review management. However, there are issues related to their levels of responsibility, other health professionals' roles and interdisciplinary communication. Finally, families felt some of their needs were neglected and professionals reported uncertainties in providing family-centred care. Conclusions. This case study indicates that responsibility for review consultations in childhood asthma needs to be formalized, including a more proactive and familycentred approach. There are implications for the practice nurse role regarding professional education and preparation for family-centred care. Relevance to clinical practice. This paper shows that unstructured, diverse care delivery persists in primary care; children and their families identify both strengths and unmet needs in review management visits; and professionals have uncertainties about providing effective child and family-centred care. [ABSTRACT FROM AUTHOR]