Parents’ and carers’ experiences of transition and aftercare following a child's discharge from a paediatric intensive care unit to an in-patient ward setting:A qualitative systematic review

Objectives: To explore parents’ experiences of transition and aftercare following their child’s discharge from a pediatric intensive care unit to an inpatient ward.Methods: A qualitative systematic review was conducted. Electronic databases CINAHL, MEDLINE, EMBASE, Psych INFO, and ASSIA were searched for qualitative studies with no date limits imposed. Methodological quality was assessed using the JBI QARI standardised critical appraisal instrument. Data were extracted into a standardised data extraction tool. Findings were pooled using a meta-aggregative approach.Results: Four studies were included in the final review that included a total of 95 participants. Fortynine findings were extracted and through an iterative process resulting in four synthesised findings being developed. These included: (1) Dynamic emotional response pre, peri and post-transfer; (2) Involvement in care absent but fundamental to functioning; (3) Changes in care delivery and environment provoking adverse emotions; and (4) Transition as a physical, emotional and social balancing act.Conclusion: Transitioning from the pediatric intensive care unit to an in-patient ward can be a challenging time for parents, exposing them to a turbulent emotional and social status, and depleting their personal resources. Parents are aware of differences in the organisation and delivery of care between clinical areas which can compound the adversity experienced. Health professionals need to provide targeted support in order to mitigate these negative emotional, physical and social effects experienced

Engaging and developing front-line clinical nurses to drive care excellence:Evaluating the Chief Nurse Excellence in Care Junior Fellowship initiative

Background Global challenges in the development of a highly skilled and motivated nursing workforce, jeopardises the delivery of high quality care. Flexible and innovative workforce solutions are required to overcome these challenges. Aims To describe the implementation and present the preliminary evaluation of a bespoke initiative called the ‘Chief Nurse Excellence in Care Junior Fellow’ designed to develop foundational clinical and academic skills of frontline junior clinical staff. Methods This initiative was developed and piloted at a large, inner-city, acute NHS Trust. The initiative involved two main components: a bespoke development programme and an improvement project that was supported by clinical and academic mentors. The initiative was evaluated using structured feedback, case studies, and data on dissemination activities. Results Six fellows completed the first cohort of the initiative that commenced in the spring 2016. Results showed positive impact on professional development relating to the acquisition of new knowledge and skills. Case studies of projects showed demonstrable impact on patient experience, outcomes and cost savings. Wider organisation and NHS impact was demonstrated through multiple dissemination activities.Conclusion This preliminary evaluation provides evidence that this initiative is a sustainable, clinically driven career development opportunity at a foundational level with demonstrable positive impact on care and staff development. Further work is underway to carry out a longitudinal structure, process and outcome evaluation with particular focus on impact

A scoping review of the needs of children and young people with acquired brain injuries and their families

Understanding the needs of children and young people (CYP) with acquired brain injuries (ABI) isessential in delivering pathways of care and providing effective rehabilitation.Aim: To identify relevant literature and key themes relating to the nature and extent of needs (met,unmet or unrecognized) of CYP with ABI and their families.Method: Scoping review. Sixteen electronic bibliographic databases were searched using terms relating tochildren, brain injury and need. Papers were screened against eligibility criteria by two independentreviewers. No date limits were applied. Data were extracted by the lead author regarding the needs ofCYP with ABI and their families and thematic analysis conducted to identify the key themes. Methodologicalquality was not assessed.Results: A total of 28 articles were identified including three systematic reviews, one scoping review,two practice recommendation articles, and 22 original research studies. Participants included CYP withABI, parents, siblings, and professionals. Four key themes were identified; CYP-related impairment needs,support needs, return to school and long-term aftercare.Conclusion: CYP with ABI and their families report extensive needs, many of which are often unmet orunrecognized by those supporting the CYP. Needs transcend the health, social care, and education domains

Protocol for a longitudinal qualitative study: survivors of childhood critical illness exploring long-term psychosocial well-being and needs–The SCETCH Project

Life-threatening critical illness affects over a quarter of a million children and adolescents (0-18 years old) annually in the USA and the UK. Death from critical illness is rare; however, survivors and their families can be exposed to a complex array of negative physical, psychological and social problems. Currently, within the literature, there is a distinct paucity of child and adolescent survivor self-reports, thus limiting our understanding of how survivors perceive this adversity and subsequently cope and grow in the long-term following their critical illness. This study aims to explore and understand psychosocial well-being and needs of critical illness survivors, 6-20 months post paediatric intensive care admission

Exploring participation after paediatric acquired brain injury

This study aimed to explore the levels of participation in a UK sample of children and young people (CYP) with an acquired brain injury (ABI) at home, school and in the community. The purpose of this study was to assess the feasibility of undertaking research with this population with a cross-sectional study using the Child and Family Follow-Up Survey (CFFS). The CFFS was distributed to parents/carers of 134 CYP with ABI (CYP-ABI) who received neuro-rehabilitation from 2014 to 2016. Access and recruitment was problematic resulting in a low response rate (4%). Widespread restrictions in participation were reported by 4 out of the 5 respondents with community structured events/activities and educational activities being the most restricted. Factors impacting on participation were cognitive-based and movement skills, family stress and lack of support/encouragement in the community. Study results provide information pertaining to the feasibility of undertaking research with this population whilst also highlighting the restrictions to participation experienced by CYP-ABI more than two years after injury. Abstract This study aimed to explore the levels of participation in a UK sample of children and youn

Ethnic differences in parental experiences during the first six months after PICU discharge in Singapore: a qualitative study

Introduction: Literature on parental experiences after childhood critical illness has limited representation from diverse ethnic backgrounds. Parents from global ethnic majority groups have reported worst psychological outcomes and required more social support after childhood critical illness. Aim: To explore the experiences of Chinese, Malay, and Indian parents in the first six months after Pediatric Intensive Care Unit (PICU) discharge of their child in Singapore. Methods: Sequential semi-structured qualitative interviews were conducted to collect data from a convenience sample of 28 parents at one month (n = 28) and at six months (n = 22) after their child\u27s discharge from a multidisciplinary PICU. Framework Analysis was adopted as the qualitative analysis strategy. The PICS-p framework was applied a priori in the Framework Analysis. Findings: Three interdependent domains and seven themes framed the 28 accounts in which ethnically diverse parents reported psychological stressors (PICS-p: emotional health), support received (PICS-p: social health) and practical challenges (transitional health) in the first six months after childhood critical illness. In the emotional health domain, parents were affected by different stressors and had different priorities over their child\u27s survivorship. Only Indian parents reported experiences of stress symptoms, at six months post discharge. Malay parents sought solace from their religion more than Chinese and Indian parents. In the social health domain, parents reported various sources and degree of support received. Familial supports were strong across all groups, while community support was more prominent in Malay as compared to Chinese and Indian parents. A third domain, transitional health, was introduced to capture the difficulties parents faced during the transition from PICU survival to home. Parents from non-Chinese families were more likely to report financial challenges and more involvement of spouses after discharge. Complementary medicine or commercial health products were utilized by Chinese and Malay families. Conclusion: These findings reveal preferred strategies that parents from a global ethnic employ to address the emotional, social and transitional health impacts of their child\u27s critical illness. Future care delivery may consider tailored care plans, communication strategies, and emotional support in PICUs that address the unique ethnic needs of parents during the critical six-months post their child\u27s illness

‘Our Care through our Eyes’: a mixed methods,evaluative study of a service user,co-produced education programme to improve inpatient care of children and young people admitted following self-harm

Introduction: Within Europe, the UK has one of the highest rates of self-harm, with a particularly high prevalence in children and young people (CYP). CYP who are admitted to paediatric hospital wards with self-harm are cared for by registered children's nurses who have been identified to lack specific training in caring for this patient group. This may impede the delivery of high quality care. Therefore, this study aims to co-produce, implement and evaluate an education programme for registered children's nurses to improve their knowledge, attitudes and confidence when caring for CYP admitted with self-harm. Methods and analysis: This mixed-methods evaluative study will involve a three-stage design. Stage 1: A priority-setting workshop will be conducted with 19 registered children's nurses. A Delphi technique will be used to establish consensus of information needs. Stage 2: An online educational intervention will be co-produced with 25 CYP and 19 registered children's nurses based on the priorities identified in Stage 1. Stage 3: The intervention will be implemented and evaluated with 250 registered children's nurses at a single hospital. Online Likert scale questionnaires will be administered at baseline and postintervention to assess levels of knowledge, attitudes and confidence in caring for CYP who self-harm. Descriptive and inferential statistics will be used to analyse the data. Statistical significance will be assessed at the 5% (two-sided) level. One-to-one qualitative interviews will also be undertaken with approximately 25 participants to explore any perceived impact on clinical practice. An interpretive descriptive approach will guide qualitative data collection and analysis. Ethics and dissemination: This study aims to develop, trial and evaluative a service-user, co-produced education programme for acute hospital registered children's nurses to improve the care of CYP admitted due to self-harm. The study has ethical approval from the National Health Services Research Ethics Committee and full governance clearance

Stories of survival: children’s narratives of psychosocial well-being following paediatric critical illness or injury

Survival from critical illness can expose children to an array of negative physical and psychological problems. While the perspective of parents and professionals have been well documented, there is limited understanding of how childhood critical care survivors make sense of their experiences in relation to psychosocial well-being. We aimed to explore long-term psychosocial well-being of childhood survivors of critical illness through their stories. A qualitative, exploratory study using serial in-depth interviews was employed. Nine children (aged 6–15 years) were recruited to the study, 6–14 months post-discharge from a paediatric intensive care unit. Qualitative art-based methods were used with a responsive interviewing technique and data were analysed using narrative psychological analysis. Four themes emerged: disrupted lives and stories; survivors revealed uncertainties in their stories as they recalled their critical care event, exposure to death and dying; talking about extreme physical vulnerability provoked anxieties, mediating between different social worlds and identities; revealed the dynamic nature of survival and getting on with life; the prospective outlook survivors had on their existence despite newly manifesting adversities. Childhood survivors’ stories identify challenges and adversities that are faced when attempting to readjust to life following critical illness that both enhance and impair psychosocial well-being

CORE-Kids: a protocol for the development of a core outcome set for childhood fractures

Introduction Limb fractures in children are common yet there are few trials that compare treatments for these injuries. There is significant heterogeneity in the outcomes reported in the paediatric orthopaedic literature, which limits the ability to compare study results and draw firm conclusions. The aim of the CORE-Kids Study is to develop a core outcome set for use in research studies of childhood limb fractures. A core outcome set will provide a minimum set of outcomes to be measured in all trials to minimise the heterogeneity of outcomes reported and minimise reporting bias. A core outcome set ensures that outcomes are reported that are relevant to families as well as clinicians. The core outcome set will include additional upper and lower limb modules.Methods The development of the core outcome set will require four phases to evaluate:What are the outcomes that are relevant to professionals?What are the outcomes that are relevant to families?What are the most important of these outcomes?Which outcomes should be included in the core outcome set?This will be completed through a systematic review of trials to identify the outcomes domains that are relevant to trialists. A series of semi-structured interviews will be completed with families to identify the outcome domains that are relevant to families. These outcome domains will be used in a three-round Delphi Study to analyse the importance of these outcome domains to a range of stakeholders including parents, clinicians and researchers. Following this, the core outcome set will be decided at a consensus meeting.Ethics and dissemination Ethical approval has been awarded HRA/REC IRAS number 262503. Date of approval 06/08/2019. Dissemination will be through scientific literature and international societies.Trial registrationCore Outcome Measures in Effectiveness Trials Initiative, registration number: 1274. Date of registration 13/12/2018.PROSPERO registration number CRD42018106605