Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis.

Transition services for young people with long-term conditions often fall short. This qualitative study explored perspectives on service features that enable effective transition in epilepsy and juvenile idiopathic arthritis. Patients, parents, clinicians and service commissioners took part in semi-structured interviews (n = 18). Thematic analysis was used to identify key features, barriers and facilitators of effective transition across participant groups. Analysis led to the development of nine sub-themes which mapped to overarching domains of communication, capability, continuity and capacity. Findings include the need for age appropriate communication, the link between parental dependence, self-care and patient knowledge, the value of service integration for continuity and the impact of capacity on flexible and age appropriate transition services.

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence.

Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define 'successful' transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services.

"It's not who I am": Children's experiences of growing up with a long-term condition in England, Australia, and New Zealand.

PURPOSE: Most studies of growing up with a long-term condition focus on older children and adolescents and are condition-specific. Relatively few studies address the experiences of children in middle childhood or consider their experience across a range of conditions, countries, and health settings. This study aimed to explore children's perceptions and understandings of how their lives are shaped (or not) by a long-term condition and its associated management. DESIGN AND METHODS: A qualitative, participatory methodology using autodriven photoelicitation interviews (PEIs) with 45 purposively recruited children (6-12 years) with long-term conditions (e.g., hemophilia, arthritis, Crohn's disease), from England, New Zealand, and Australia was utilized. PEI facilitated the construction of inductively derived understandings of the children's experiences as the children had control over creating and then selecting which photographs to discuss with the researcher. RESULTS: Interpretive thematic analysis of the interviews and content analysis of the photographs resulted in an overarching theme, "It's not who I am …" but it is part of me, and three subthemes: getting on with my life; the special value of family, friendship, support, and comfort; and things that get in the way of getting on. Across all ages and the three countries, the children actively projected their self-concept as "well" children and they strove, through their photographs and their accompanying explanations of their lives, to emphasize that they were "normal" children. They were active social agents who demonstrated their capacity to shape parts of their lives interdependently with their parents and the requirements of their condition. PRACTICE IMPLICATIONS: Pediatric nurses should be aware of the importance that children with long-term conditions place on projecting and protecting their sense of being normal and ensure that when they engage with children that they take account of the children's understandings and efforts to live a life constrained but not limited by the condition.

Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives.

Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error ("learning to get on with it"); this was accomplished through "learning to know without a rule book or guide"; "learning to be a convincing advocate"; and "learning to endure and to get things right." Experiential and reflective learning was evident in the way the mothers developed a "sense of knowing" their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns.

Development of the Liverpool Adverse Drug Reaction Avoidability Assessment Tool.

AIM: To develop and test a new tool to assess the avoidability of adverse drug reactions that is suitable for use in paediatrics but which is also applicable to a variety of other settings. METHODS: The study involved multiple phases. Preliminary work involved using the Hallas scale and a modification of the existing Hallas scale, to assess two different sets of adverse drug reaction (ADR) case reports. Phase 1 defined, modified and refined a new tool using multidisciplinary teams. Phase 2 involved the assessment of 50 ADR case reports from a prospective study of paediatric inpatients by individual assessors. Phase 3 compared assessments with the new tool for individuals and groups in comparison to the 'gold standard' (the avoidability outcome set by a panel of senior investigators: an experienced clinical pharmacologist, paediatrician and pharmacist). MAIN OUTCOME MEASURES: Inter-rater reliability (IRR), measure of disagreement and utilization of avoidability categories. RESULTS: Preliminary work-Pilot phase: results for the original Hallas cases were fair and pairwise kappa scores ranged from 0.21 to 0.36. Results for the modified Hallas cases were poor, pairwise kappa scores ranged from 0.06 to 0.16. Phase 1: on initial use of the new tool, agreement between the two multidisciplinary groups was found on 13/20 cases with a kappa score of 0.29 (95% CI -0.04 to 0.62). Phase 2: the assessment of 50 ADR case reports by six individual reviewers yielded pairwise kappa scores ranging from poor to good 0.12 to 0.75 and percentage exact agreement (%EA) ranged from 52-90%. Phase 3: Percentage exact agreement ranged from 35-70%. Overall, individuals had better agreement with the 'gold standard'. CONCLUSION: Avoidability assessment is feasible but needs careful attention to methods. The Liverpool ADR avoidability assessment tool showed mixed IRR. We have developed and validated a method for assessing the avoidability of ADRs that is transparent, more objective than previous methods and that can be used by individuals or groups.

Medicines in schools: a cross-sectional survey of children, parents, teachers and health professionals.

OBJECTIVES: To describe how individual schools manage medicines and strategies for implementation of guidance, to determine the nature of problems perceived by children, parents, teachers and healthcare professionals (HCPs) in relation to medicines management in schools and to highlight differences between these perceptions. DESIGN: A cross-sectional survey study in which questionnaires were completed by children, their parents and carers, groups of HCPs and head teachers. RESULTS: There were 158 respondents to this survey. The management of medicines varies between schools and this reflects how policy guidance is interpreted and is revealed by the differences in experience described. Head teachers acknowledge that there is a lack of expertise about medicines among their staff and they rely on interpretation of and adherence to policy and procedure and compliance with training was used as a measure of good medicines management. There are inconsistencies in how information about medicines is communicated between the healthcare team, families and schools, and there is evidence that this communication is not always timely or effective. This results in problems with medicines at school. Parents emphasised the need for staff at school to understand their child's condition and their medicines. CONCLUSIONS: There are differences between how individual schools manage medicines and interpret policy guidance and discrepancies between the views of each stakeholder group. There is some evidence that medicines management does not always meet the needs of children and their families. Fewer than half of parents and HCPs are satisfied with how medicines are dealt with in schools.

Auto-driven Photo Elicitation Interviews in Research with Children: Ethical and Practical Considerations.

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.

Navigating Uncertainty: Health Professionals' Knowledge, Skill, and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment.

There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A metatheme "navigating uncertainty; deficits in knowledge and skills" and two core themes "framing as different and teasing things out" and "the settling and unsettling presence of parents" were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the child's parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented.

Predicting cancer patients' participation in support groups: a longitudinal study.

OBJECTIVE: Few patients participate in cancer support groups despite their benefits. This study investigated the importance of Theory of Planned Behaviour variables in predicting group participation, relative to disease impact, existing support, coping and demographic variables. METHODS: Longitudinal study of patients with colorectal, lung or prostate cancer recruited from a specialist oncology centre. Patients self-completed surveys at baseline and six-month follow up. Baseline measures included Theory of Planned Behaviour (TPB) variables, distress and control over cancer (IPQ-R), coping (Brief COPE), social support (MSPSS), health related quality of life (EORTC QLQ-C30) and readiness to participate (PAPM). Group participation and recommendations to participate were measured at follow up. Univariable and Random Forest analyses investigated predictors of baseline readiness to participate and participation by six-month follow up. RESULTS: N=192 patients completed baseline questionnaires. N=13 participated in a group and N=59 did not by six-month follow up. Baseline readiness to participate was associated with inadequate support and positive views of support groups. Lower cognitive functioning, recommendations and readiness to participate predicted group participation by six-month follow up. CONCLUSION AND PRACTICE IMPLICATIONS: Practitioners may facilitate group participation by promoting positive views of groups, recommending participation and focusing on patients experiencing greater disease impact and less existing support.

What can we learn from parents about enhancing participation in pharmacovigilance?

AIMS: To investigate parents' views and experiences of direct reporting of a suspected ADR in their child. METHODS: We audio-recorded semi-structured qualitative interviews with parents of children with suspected ADRs. Our sample included parents with (n = 17) and without (n = 27) previous experience of submitting a Yellow Card. RESULTS: Parents in both groups described poor awareness of the Yellow Card Scheme. Parents who had participated in the Yellow Card Scheme were generally happy to report their child's ADR via the Scheme and valued the opportunity to report concerns independently of health practitioners. They expressed motivations for reporting that have not previously been described linked to the parental role, including how registering a concern about a medicine helped to resolve uncomfortable feelings about their child's ADR. Parents who had not previously submitted a Yellow Card expressed uncertainty about the legitimacy of their involvement in reporting and doubts about the value of the information that they could provide. CONCLUSION: Promoting wider participation in pharmacovigilance schemes will depend on raising public awareness. Additionally, our findings point to the need to empower lay people to submitting reports and to reassure them about the value of their reports.

Enhancing communication about paediatric medicines: lessons from a qualitative study of parents' experiences of their child's suspected adverse drug reaction.

BACKGROUND: There is little research on parents' experiences of suspected adverse drug reactions in their children and hence little evidence to guide clinicians when communicating with families about problems associated with medicines. OBJECTIVE: To identify any unmet information and communication needs described by parents whose child had a suspected adverse drug reaction. METHODS: Semi-structured qualitative interviews with parents of 44 children who had a suspected adverse drug reaction identified on hospital admission, during in-patient treatment or reported by parents using the Yellow Card Scheme (the UK system for collecting spontaneous reports of adverse drug reactions). Interviews were conducted face-to-face or by telephone; most interviews were audiorecorded and transcribed. Analysis was informed by the principles of the constant comparative method. RESULTS: Many parents described being dissatisfied with how clinicians communicated about adverse drug reactions and unclear about the implications for their child's future use of medicines. A few parents felt that clinicians had abandoned their child and reported refusing the use of further medicines because they feared a repeated adverse drug reaction. The accounts of parents of children with cancer were different. They emphasised their confidence in clinicians' management of adverse drug reactions and described how clinicians prospectively explained the risks associated with medicines. Parents linked symptoms to medicines in ways that resembled the established reasoning that clinicians use to evaluate the possibility that a medicine has caused an adverse drug reaction. CONCLUSION: Clinicians' communication about adverse drug reactions was poor from the perspective of parents, indicating that improvements are needed. The accounts of parents of children with cancer indicate that prospective explanation about adverse drug reactions at the time of prescription can be effective. Convergence between parents and clinicians in their reasoning for linking children's symptoms to medicines could be a starting point for improved communication.