Key stakeholders' perspectives on the development of an early dietary phosphate self-management strategy for children and young people with chronic kidney disease stages 1-3: A modified Delphi consensus process.

BACKGROUND: An early dietary phosphate intervention (EPI) can provide vital medical benefits supporting self-management of chronic kidney disease (CKD) in childhood. OBJECTIVE: To utilise expert consensus to provide early modelling for an EPI to guide clinical practice across a paediatric renal network. METHODS: Forty-eight statements across six domains were constructed following a systematic review and semi-structured interviews with children and young people (CYP), parents and healthcare professionals (HCP). A three-round online Delphi survey with parents and paediatric renal multi-disciplinary healthcare experts was undertaken. RESULTS: Twenty-one experts agreed on 56 statements over three Delphi rounds. Statements were accepted in all six domains: definition of an EPI (2), rationale (12), intended users (3), delivery (14) (when [1], where [3], who [2], how [8]), other considerations (16) and potential concerns (9). CONCLUSIONS: Consensus was reached on a definition and a set of guiding principles, providing some early modelling for implementation and future research on the development of an EPI strategy for CYP with CKD.

Improving ambulance care for children suffering acute pain: a qualitative interview study.

BACKGROUND: Pain is a highly complex sensory and emotional experience. When a child suffers acute pain through illness or injury, they are often transported to hospital by ambulance. Pre-hospital pain management in children is poor, with 61% of children receiving suboptimal pain management. Consequences of poor pain management include the risk of developing post-traumatic stress disorder and altered pain perception. We aimed to identify clinicians' perceptions of barriers, facilitators and potential improvements for the management of pre-hospital acute pain in children. METHODS: Qualitative face to face semi-structured recorded interviews were performed in one large UK ambulance service. Audio files were transcribed verbatim with thematic analysis used to generate themes. NVivo 12 was used to support data analysis. Findings were combined with existing evidence to generate a driver diagram. RESULTS: Twelve ambulance clinicians participated, including 9 registered paramedics and 3 emergency medical technicians. Median (IQR) age was 43.50 (41.50, 45.75) years, 58% were male, median (IQR) experience was 12 (4.25, 15.50) years and 58% were parents. Several themes relating to barriers and facilitators were identified, including physical, emotional, social, organisational, environmental, management, knowledge and experience. Improvement themes were identified relating to management, organisation and education. These data were combined to create a driver diagram; the three primary drivers were 1) explore methods to increase rates of analgesic administration, including utilising intranasal or inhaled routes; 2) reduce fear and anxiety in children, by using child friendly uniform, additional non-pharmacological techniques and more public interaction and 3) reduce fear and anxiety in clinicians, by enhancing training and optimising crew mix. CONCLUSIONS: The quality of care that children receive for acute pain in the ambulance service may be improved by increasing rates of analgesic administration and reducing the fear and anxiety experienced by children and clinicians. Future research involving children and parents would be useful to determine the most important outcome measures and facilitate intervention development.

Ambulance clinician perspectives of disparity in prehospital child pain management: A mixed methods study.

BACKGROUND: When children suffer acute pain, the ambulance service is often involved to provide initial assessment, treatment, and transport. Several predictors of effective pain management have been identified, including children who are younger (0-5 years), administered analgesics, and living in homes from more affluent areas. OBJECTIVE: To explain previously identified predictors of effective prehospital pain management in children. DESIGN: Mixed methods sequential explanatory study. SETTING AND PARTICIPANTS: East Midlands Ambulance Service National Health Service Trust paramedics and emergency medical technicians (EMTs) participated in face-to-face semi-structured interviews. These were audio recorded, transcribed verbatim, and coded using thematic analysis. Meta-inferences were generated and illustrated within a joint display. RESULTS: Twelve clinicians (9 paramedics and 3 EMTs) were interviewed. Median (interquartile range) age was 43.5 years (41.5, 45.75), 58% were male (n = 7) and 58% were parents (n = 7). Possible explanations were provided for all predictors. Younger children were perceived to express more emotion, were easier to distract, and lived more in the moment than their older counterparts, which explained why younger children were more likely to achieve effective pain management. Analgesics were perceived to have a psychosocial benefit in addition to the pharmacological action. Ambulance clinicians felt that children living in more affluent areas were more likely to achieve effective pain management because the kempt environment facilitated assessment and management and clinicians spent more time on scene; this allowed more time for analgesics to take effect. Participants perceived paramedics to be more confident, and it was found that paramedics were older, more experienced, had a greater scope of practice, and spent more time on scene than EMTs. CONCLUSION: Prehospital pain management in children could be improved by facilitating and prioritizing analgesic administration and by ambulance services ensuring a paramedic, or highly trained clinician, is present on each vehicle, necessitating long-term commitment to staff development.

Children's, parents', and other stakeholders' perspectives on the factors influencing the initiation of early dietary change in the management of childhood chronic disease: a mixed studies systematic review using a narrative synthesis.

BACKGROUND: Early dietary change can provide vital medical benefits supporting childhood chronic disease self-management. OBJECTIVE: To explore factors influencing the initiation of early dietary change in the management of childhood chronic disease, as described by children, parents', and other stakeholders, to inform practice change in early paediatric service delivery. METHODS: This systematic review crossed seven databases from 2000-2018 to identify empirical research (qualitative, quantitative, and mixed-method designs), including grey literature. Methodological quality was appraised using validated scoring systems. RESULTS: Six studies met our criteria for inclusion in the review. Four themes of early dietary change emerged from these studies: (1) the role of education; (2) parents/caregivers' roles; (3) the role of self-management, and the (4) identification of enablers and barriers to dietary change. CONCLUSION: Obtaining the perspectives of children, parents' and other stakeholders' on factors influencing early dietary change is key to the self-management of childhood chronic disease. PRACTICE IMPLICATIONS: Early dietary change provides an essential resource in the self-management of many chronic diseases. In collaboration, children, parents' and healthcare professionals recognise the value of regular, engaging education, supported by workshops to empower and upskill, enabling change in everyday dietary habits, while using enablers and recognising challenges.

The predictors, barriers and facilitators to effective management of acute pain in children by emergency medical services: A systematic mixed studies review.

We aimed to identify predictors, barriers and facilitators to effective pre-hospital pain management in children. A segregated systematic mixed studies review was performed. We searched from inception to 30-June-2020: MEDLINE, CINAHL Complete, PsycINFO, EMBASE, Web of Science Core Collection and Scopus. Empirical quantitative, qualitative and multi-method studies of children under 18 years, their relatives or emergency medical service staff were eligible. Two authors independently performed screening and selection, quality assessment, data extraction and quantitative synthesis. Three authors performed thematic synthesis. Grading of Recommendations Assessment, Development and Evaluation and Confidence in the Evidence from Reviews of Qualitative Research were used to determine the confidence in cumulative evidence. From 4030 articles screened, 78 were selected for full text review, with eight quantitative and five qualitative studies included. Substantial heterogeneity precluded meta-analysis. Predictors of effective pain management included: 'child sex (male)', 'child age (younger)', 'type of pain (traumatic)' and 'analgesic administration'. Barriers and facilitators included internal (fear, clinical experience, education and training) and external (relatives and colleagues) influences on the clinician along with child factors (child's experience of event, pain assessment and management). Confidence in the cumulative evidence was deemed low. Efforts to facilitate analgesic administration should take priority, perhaps utilising the intranasal route. Further research is recommended to explore the experience of the child. Registration: PROSPERO CRD42017058960.

Mixed methods in pre-hospital research: understanding complex clinical problems.

Healthcare is becoming increasingly complex. The pre-hospital setting is no exception, especially when considering the unpredictable environment. To address complex clinical problems and improve quality of care for patients, researchers need to use innovative methods to create the necessary depth and breadth of knowledge. Quantitative approaches such as randomised controlled trials and observational (e.g. cross-sectional, case control, cohort) methods, along with qualitative approaches including interviews, focus groups and ethnography, have traditionally been used independently to gain understanding of clinical problems and how to address these. Both approaches, however, have drawbacks: quantitative methods focus on objective, numerical data and provide limited understanding of context, whereas qualitative methods explore more subjective aspects and provide perspective, but can be harder to demonstrate rigour. We argue that mixed methods research, where quantitative and qualitative methods are integrated, is an ideal solution to comprehensively understand complex clinical problems in the pre-hospital setting. The aim of this article is to discuss mixed methods in the field of pre-hospital research, highlight its strengths and limitations and provide examples. This article is tailored to clinicians and early career researchers and covers the basic aspects of mixed methods research. We conclude that mixed methods is a useful research design to help develop our understanding of complex clinical problems in the pre-hospital setting.

Predictors of effective management of acute pain in children within a UK ambulance service: A cross-sectional study.

OBJECTIVE: We aimed to identify predictors of effective management of acute pain in children in the pre-hospital setting. METHODS: A retrospective cross-sectional study using electronic clinical records from one large UK ambulance service during 01-Oct-2017 to 30-Sep-2018 was performed using multivariable logistic regression. We included all children <18 years suffering acute pain. Children with a Glasgow Coma Scale score of <15, no documented pain or without a second pain score were excluded. The outcome measure was effective pain management (abolition or reduction of pain by ≥2 out of 10 using the numeric pain rating scale, Wong-Baker FACES® scale or FLACC [face, legs, activity, crying and consolability] scale). RESULTS: 2312 patients were included for analysis. Median (IQR) age was 13 (9-16), 54% were male and the cause of pain was trauma in 66% of cases. Predictors of effective pain management include children who were younger (0-5 years) compared to older (12-17 years) (adjusted odds ratio [AOR] 1.53; 95% confidence interval [CI] 1.18-1.97), administered analgesia (AOR 2.26; CI 1.87-2.73), attended by a paramedic (AOR 1.46; CI 1.19-1.79) or living in an area of low deprivation (index of multiple deprivation [IMD] 8-10) compared to children in an area of high deprivation (IMD 1-3) (AOR 1.37; CI 1.04-1.80). Child sex, type of pain, transport time, non-pharmacological treatments and clinician experience were not significant. CONCLUSION: These predictors highlight disparity in effective pre-hospital management of acute pain in children. Qualitative research is needed to help explain these findings.

Reducing repeat paediatric emergency department attendance for non-urgent care: a systematic review of the effectiveness of interventions.

OBJECTIVE: Non-urgent paediatric ED (PED) visits appear to contribute a large portion to the growing use of EDs globally. Several interventions have tried to curb repeated non-urgent attendances, but no systematic review of their effectiveness exists. This review examines the effectiveness of interventions designed to reduce subsequent non-urgent PED visits after a non-urgent attendance. METHOD: A systematic review design. A systematic search of four databases and key journals was conducted from their inception to November 2018. Experimental studies, involving children aged 0-18 years presenting to an ED for non-urgent care, which assessed the effectiveness of interventions on subsequent non-urgent attendance were considered. RESULTS: 2120 studies were identified. Six studies, including four randomised controlled trials (RCTs) and two quasi-experimental, were included. Studies were of moderate quality methodologically. All studies originated from the USA and involved informational and/or follow-up support interventions. Only two RCTs demonstrated the longest duration of intervention effects on reducing subsequent non-urgent PED attendance. These studies identified participants retrospectively after ED evaluation. The RCT with the largest number of participants involved follow-up support by primary physicians. Meta-analysis was impractical due to wide heterogeneity of the interventions. CONCLUSIONS: There is inconclusive evidence to support any intervention aimed at reducing subsequent non-urgent PED visits following a non-urgent attendance. The long-term impact of interventions is limited, although the effect may be maximised if delivered by primary care providers in children identified after their ED attendance. However, further research is required to evaluate the impact of any such strategies in settings outside the USA.

Predictors of effective management of acute pain in children within a UK ambulance service: a cross-sectional study.

INTRODUCTION: Pre-hospital pain management in children is poor, with very few children in pain receiving analgesia. Without effective pain treatment, children may suffer long-term changes in stress hormone responses and pain perception and are at risk of developing posttraumatic stress disorder. We aimed to identify predictors of effective management of acute pain in children in the pre-hospital setting. METHODS: A retrospective cross-sectional study using electronic clinical records from one large UK ambulance service between 1 October 2017 and 30 September 2018 was performed using multi-variable logistic regression. We included all children < 18 years suffering acute pain. Children with a Glasgow Coma Scale of < 15, no documented pain or without a second pain score were excluded. The outcome measure was effective pain management (abolition or reduction of pain by ≥ 2 out of 10 using the numeric pain rating scale, Wong and Baker FACES® scale or Face, Legs, Activity, Crying and Consolability (FLACC) scale). RESULTS: A total of 2312 patients were included for analysis. Median (IQR) age was 13 (9-16), 54% were male and the cause of pain was trauma in 66% of cases. Predictors of effective pain management include children who were younger (0-5 years) compared to older (12-17 years) (adjusted odds ratio (AOR) 1.57; 95% confidence interval (CI) 1.21-2.03), administered analgesia (AOR 2.35; CI 1.94-2.84), attended by a paramedic (AOR 1.39; CI 1.13-1.70) or living in an area of medium deprivation (index of multiple deprivation (IMD) 4-7) compared to children in an area of high deprivation (IMD 1-3) (AOR 1.41; CI 1.10-1.79). Child gender, type of pain, transport time and clinician experience were not significant. CONCLUSION: These predictors highlight disparity in effective pre-hospital management of acute pain in children. Qualitative research is needed to help explain these findings.

The Practice of Mutual Protection in the Care of Children with Palliative Care Needs: A Multiple Qualitative Case Study Approach from Jordan.

PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. RESULTS: Qualitative case studies were developed around 15 children (aged 1-12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of 'mutual protection' dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died. CONCLUSION: The findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.

Children's, parents' and other stakeholders' perspectives on early dietary self-management to delay disease progression of chronic disease in children: a protocol for a mixed studies systematic review with a narrative synthesis.

BACKGROUND: Chronic disease of childhood may be delayed by early dietary intervention. The purpose of this systematic review is to provide decision-makers with a perspective on the role of early dietary intervention, as a form of self-management, to delay disease progression in children with early chronic disease, as described by children, parents and other stakeholders. METHODS: The study will systematically review empirical research (qualitative, quantitative and mixed method designs), including grey literature, using a narrative synthesis. A four-stage search process will be conducted involving a scoping search, the Scottish Intercollegiate Guidelines Network (SIGN) Patient Issues search filter on MEDLINE, the search of seven databases using a chronic disease and chronic kidney disease (CKD) search strategy, and hand searching the reference lists of identified papers for additional studies. All studies retrieved during the search process will undergo a screening and selection process against the inclusion/exclusion criteria. Methodological quality of relevant studies will be assessed using a validated Mixed Studies Review scoring system, before inclusion in the review. Relevant grey literature will be assessed for methodological quality and relative importance using McGrath et al.'s framework and the Academy Health advisory committee categories, respectively. Data extraction will be guided by the Centre for Review and Dissemination guidance and Popay et al.'s work. The narrative synthesis of the findings will use elements of Popay et al.'s methodology of narrative synthesis, applying recognised tools for each of the four elements: (1) developing a theory of how the intervention works, why and for whom; (2) developing a preliminary synthesis of findings of included studies; (3) exploring relationships in the data; and (4) assessing the robustness of the synthesis. DISCUSSION: This mixed studies systematic review with a narrative synthesis seeks to elucidate the gaps in current knowledge and generate a fresh explanation of research findings on early dietary self-management in chronic disease, with particular application to CKD, from the stakeholders' perspective. The review will provide an important platform to inform future research, identifying the facilitators and barriers to implementing early dietary interventions. Ultimately, the review will contribute vital information to inform future improvements in chronic disease. The lead author has a particular interest in CKD paediatric service delivery. SYSTEMATIC REVIEW REGISTRATION: The review has been registered with PROSPERO (CRD42017078130).

A qualitative systematic review of the reasons for parental attendance at the emergency department with children presenting with minor illness.

INTRODUCTION: Over 5 million children attend the Emergency Department (ED) annually in England with an ever-increasing paediatric emergency caseload echoed globally. Approximately 60% of children present with illness and the majority have non-urgent illness creating burgeoning pressures on children's ED and this crisis resonates globally. To date no qualitative systematic review exists that focuses on the parental reasons for childhood attendance at the ED in this sub-group. AIM: To identify parental reasons for attending ED for their children presenting with minor illness. METHOD: A qualitative systematic review was conducted against inclusion/exclusion criteria. Five electronic databases and key journals were searched in June 2015. FINDINGS: 471 studies were identified and following study selection, 4 qualitative studies were included. Nine themes were identified e.g. dissatisfaction with family medical services, perceived advantages of ED and 'child suffering' with novel and insightful sub-themes of 'hereditary anxiety', 'taking it off our hands', ED as a 'magical place'. CONCLUSION: This novel qualitative systematic review examined parental attendance presenting with childhood minor illness of interest to emergency care reformers and clinicians. ED attendance is complex and multifactorial but parents provide vital insight to ED reformers on parental reasons for ED attendance in this sub-group.

What are the predictors, barriers and facilitators to effective management of acute pain in children by ambulance services? A mixed-methods systematic review protocol.

INTRODUCTION: The management of pain is complex, especially in children, as age, developmental level, cognitive and communication skills and associated beliefs must be considered. Without effective pain treatment, children may suffer long-term changes in stress hormone responses and pain perception and are at risk of developing posttraumatic stress disorder. Pre-hospital analgesic treatment of injured children is suboptimal, with very few children in pain receiving analgesia. The aim of this review is to identify predictors, barriers and facilitators to effective management of acute pain in children by ambulance services. METHODS: A mixed-methods approach has been adopted due to the research question lending itself to qualitative and quantitative inquiry. The segregated methodology will be used where quantitative and qualitative papers are synthesised separately, followed by mixed-methods synthesis (meta-integration). We will search from inception: MEDLINE, CINAHL and PsycINFO via EBSCOHost, EMBASE via Ovid SP, Web of Science and Scopus. The Cochrane Library, the Joanna Briggs Institute, PROSPERO, ISRCTN and ClinicalTrials.gov will be searched. We will include empirical qualitative and quantitative studies. We will exclude animal studies, reviews, audits, service evaluations, simulated studies, letters, Best Evidence Topics, case studies, self-efficacy studies, comments and abstracts. Two authors will perform full screening and selection, data extraction and quality assessment. GRADE and CERQual will determine the confidence in cumulative evidence. DISCUSSION: If confidence in the cumulative evidence is deemed Moderate, Low or Very Low, then this review will inform the development of a novel mixed-methods sequential explanatory study which aims to comprehensively identify predictors, barriers and facilitators to effective pain management of acute pain in children within ambulance services. Future research will be discussed among authors if confidence is deemed High.Systematic Review Registration: PROSPERO: CRD42017058960.

Survived so what? Identifying priorities for research with children and families post-paediatric intensive care unit.

The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders. We conducted a face-to-face, multiple-stakeholder consultation event, held in the Midlands (UK), to provide opportunities for experiences, views and priorities to be elicited. Data were gathered using write/draw and tell and focus group approaches. An inductive content analytical approach was used to categorize and conceptualize feedback. A total of 26 individuals attended the consultation exercise, including children and young people who were critical care survivors; their siblings; parents and carers; health professionals; academics; commissioners; and service managers. Consultation findings indicated that future services, interventions and research must be holistic and family-centred. Children and young people advisors reported priorities that focused on longer-term outcomes, whereas adult advisors identified priorities that mapped against the pathways of care. Specific priorities included developing and testing interventions that address unmet communication and information needs. Furthermore, initiatives to optimize the lives and longer-term functional and psycho-social outcomes of Paediatric Intensive Care Unit survivors were identified. This consultation exercise provides further evidence of the value of meaningful patient and public involvement in identifying the priorities for research and services for Paediatric Intensive Care Unit survivors and illuminates differences in proposed priorities between children, young people and adult advisors.

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.

The Experience of Decision Making in the Care of Children with Palliative Care Needs: The Experiences of Jordanian Mothers.

The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children. Mothers had a widespread apprehension of "future guilt," especially when they feared that any decisions they might make could have an adverse impact on their children. Contrary to the predominant pattern, some mothers took a proactive approach towards decision making about their children's treatment. These mothers requested detailed information from primary physicians and sought different sources of knowledge such as second opinions, reading online resources, or talking to other parents who had a child with similar circumstances. The study concludes that mothers prefer to involve physicians in decisions about their children's healthcare and treatment to eliminate their fear of probable future guilt; this modifies any tendency to autonomously decide for their children. These findings are underpinned by the Jordanian culture in which doctors' opinions are highly regarded.

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

INTRODUCTION: 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. METHODS AND ANALYSIS: A longitudinal, qualitative approach will provide a platform for a holistic and contextualised exploration of outcomes and mechanisms at an individual level. Up to 80 participants, including 20 childhood critical illness survivors and 60 associated family members or health professionals/teachers, will be recruited. Three interviews, 7-9 weeks apart, will be conducted with critical illness survivors, allowing for the exploration of psychosocial well-being over time. A single interview will be conducted with the other participants enabling the exploration of contextual information and how psychosocial well-being may inter-relate between critical illness survivors and themselves. A 'tool box' of qualitative methods (semi-structured interviews, draw and tell, photo-elicitation, graphic-elicitation) will be used to collect data. Narrative analysis and pattern matching will be used to identify emergent themes across participants. ETHICS AND DISSEMINATION: This study will provide an insight and understanding of participants' experiences and perspectives of surviving critical illness in the long term with specific relation to their psychosocial well-being. Multiple methods will be used to ensure that the findings are effectively disseminated to service users, clinicians, policy and academic audiences. The study has full ethical approval from the East Midlands Research Ethics Committee and has received National Health Service (NHS) governance clearance.

Long-term psychosocial impact reported by childhood critical illness survivors: a systematic review.

AIM: To undertake a qualitative systematic review that explores psychological and social impact, reported directly from children and adolescents at least 6 months after their critical illness. BACKGROUND: Significant advances in critical care have reduced mortality from childhood critical illness, with the majority of patients being discharged alive. However, it is widely reported that surviving critical illness can be traumatic for both children and their family. Despite a growing body of literature in this field, the psychological and social impact of life threatening critical illness on child and adolescent survivors, more than 6 months post event, remains under-reported. DATA SOURCES: Searches of six online databases were conducted up to February 2012. REVIEW METHODS: Predetermined criteria were used to select studies. Methodological quality was assessed using a standardized checklist. An adapted version of the thematic synthesis approach was applied to extract, code and synthesize data. FINDINGS: Three studies met the inclusion criteria, which were all of moderate methodological quality. Initial coding and synthesis of data resulted in five descriptive themes: confusion and uncertainty, other people's narratives, focus on former self and normality, social isolation and loss of identity, and transition and transformation. Further synthesis culminated in three analytical themes that conceptualize the childhood survivors' psychological and social journey following critical illness. CONCLUSIONS: Critical illness in childhood can expose survivors to a complex trajectory of recovery, with enduring psychosocial adversity manifesting in the long term. Nurses and other health professionals must be aware and support the potential multifaceted psychosocial needs that may arise. Parents and families are identified as fundamental in shaping psychological and social well-being of survivors. Therefore intensive care nurses must take opportunities to raise parents' awareness of the journey of survival and provide appropriate support. Further empirical research is warranted to explore the deficits identified with the existing literature.

Children and young people's participation in healthcare consultations in the emergency department.

Approximately 4 million children attend emergency departments (ED) in England, United Kingdom, per annum. It is important for children and young people to have an active say in their assessment and treatment during each emergency care episode. However the reality of hearing the child or young person's voice within active participation in health care consultations remains low at approximately 6% of voices recorded. In the context of policy drivers and patient benefits, there is a need to increase the level of participation by children and young people within the emergency care environment. However, noise, child and parental anxiety and distress, professional time pressure, and severity of child illness or injury add to the inherent complexity of triadic communication (parent, child, healthcare professional) in the ED. Research examining child participation in decision-making in ED is sparse and guidance for all parties is limited. Therefore methods drawn from the wider literature on child participation are discussed which may be implemented, validated and evaluated with an ED context.