The long-term impact of COVID-19 on nursing: An e-panel discussion from the International Network for Child and Family Centred Care.

AIM: To explore the International Network for Child and Family Centred Care (INCFCC) members' experiences and views on the long-term impact of COVID-19 on the nursing workforce. BACKGROUND: On the 11 March 2020, the World Health Organization declared COVID-19 a global pandemic. While some countries adopted a herd immunity approach, others imposed stricter measures to reduce the transmission of the virus. Hospitals in some countries faced an avalanche of extremely sick admissions, whereas others experienced an early surge in cases or were able to control the spread. DESIGN: Discursive paper. METHODS: A web-based survey was e-mailed to 63 INCFCC members from 28 March to 30 April 2022, as an invitation to share their experience concerning the long-term impact of COVID-19 on their role as a nurse educator, clinician or researcher. RESULTS: Sixteen members responded, and the responses were grouped under the themes stress and anxiety, safe staffing and pay, doing things differently, impact on research, impact on teaching and learning, impact on clinical practice, nursing made visible and lessons for the future. CONCLUSION: The INCFCC members provided their views and highlighted the impact on their role in nursing education, administration, research and/or practice. This discussion of international perspectives on the similarities and differences imposed by COVID-19 found that the impact was wide-ranging and prolonged. The overarching theme revealed the resilience of the participating members in the face of COVID-19. RELEVANCE TO CLINICAL PRACTICE: This study highlights the importance of all areas of nursing, be it in academia or in clinical practice, to work together to learn from the present and to plan for the future. Future work should focus on supporting organizational and personal resiliency and effective interventions to support the nursing workforce both during a disaster and in the recovery phase. Nursing workforce resilience in the face of COVID-19.

Neoadjuvant treatment for stage III and IV cutaneous melanoma.

BACKGROUND: Cutaneous melanoma is amongst the most aggressive of all skin cancers. Neoadjuvant treatment is a form of induction therapy, given to shrink a cancerous tumour prior to the main treatment (usually surgery). The purpose is to improve survival and surgical outcomes. This review systematically appraises the literature investigating the use of neoadjuvant treatment for stage III and IV cutaneous melanoma. OBJECTIVES: To assess the effects of neoadjuvant treatment in adults with stage III or stage IV melanoma according to the seventh edition American Joint Committee on Cancer (AJCC) staging system. SEARCH METHODS: We searched the following databases up to 10 August 2021 inclusive: Cochrane Skin Specialised Register, CENTRAL, MEDLINE, Embase, LILACS and four trials registers, together with reference checking and contact with study authors to identify additional studies. We also handsearched proceedings from specific conferences from 2016 to 2020 inclusive. SELECTION CRITERIA: Randomised controlled trials (RCTs) of people with stage III and IV melanoma, comparing neoadjuvant treatment strategies (using targeted treatments, immunotherapies, radiotherapy, topical treatments or chemotherapy) with any of these agents or current standard of care (SOC), were eligible for inclusion. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methods. Primary outcomes were overall survival (OS) and adverse effects (AEs). Secondary outcomes included time to recurrence (TTR), quality of life (QOL), and overall response rate (ORR). We used GRADE to evaluate the certainty of the evidence. MAIN RESULTS: We included eight RCTs involving 402 participants. Studies enrolled adults, mostly with stage III melanoma, investigated immunotherapies, chemotherapy, or targeted treatments, and compared these with surgical excision with or without adjuvant treatment. Duration of follow-up and therapeutic regimens varied, which, combined with heterogeneity in the population and definitions of the endpoints, precluded meta-analysis of all identified studies. We performed a meta-analysis including three studies. We are very uncertain if neoadjuvant treatment increases OS when compared to no neoadjuvant treatment (hazard ratio (HR) 0.43, 95% confidence interval (CI) 0.15 to 1.21; 2 studies, 171 participants; very low-certainty evidence). Neoadjuvant treatment may increase the rate of AEs, but the evidence is very uncertain (26% versus 16%, risk ratio (RR) 1.58, 95% CI 0.97 to 2.55; 2 studies, 162 participants; very low-certainty evidence). We are very uncertain if neoadjuvant treatment increases TTR (HR 0.51, 95% CI 0.22 to 1.17; 2 studies, 171 participants; very low-certainty evidence). Studies did not report ORR as a comparative outcome or measure QOL data. We are very uncertain whether neoadjuvant targeted treatment with dabrafenib and trametinib increases OS (HR 0.28, 95% CI 0.03 to 2.25; 1 study, 21 participants; very low-certainty evidence) or TTR (HR 0.02, 95% CI 0.00 to 0.22; 1 study, 21 participants; very low-certainty evidence) when compared to surgery. The study did not report comparative rates of AEs and overall response, and did not measure QOL. We are very uncertain if neoadjuvant immunotherapy with talimogene laherparepvec increases OS when compared to no neoadjuvant treatment (HR 0.49, 95% CI 0.15 to 1.64; 1 study, 150 participants, very low-certainty evidence). It may have a higher rate of AEs, but the evidence is very uncertain (16.5% versus 5.8%, RR 2.84, 95% CI 0.96 to 8.37; 1 study, 142 participants; very low-certainty evidence). We are very uncertain if it increases TTR (HR 0.75, 95% CI 0.31 to 1.79; 1 study, 150 participants; very low-certainty evidence). The study did not report comparative ORRs or measure QOL. OS was not reported for neoadjuvant immunotherapy (combined ipilimumab and nivolumab) when compared to the combination of ipilimumab and nivolumab as adjuvant treatment. There may be little or no difference in the rate of AEs between these treatments (9%, RR 1.0, 95% CI 0.75 to 1.34; 1 study, 20 participants; low-certainty evidence). The study did not report comparative ORRs or measure TTR and QOL. Neoadjuvant immunotherapy (combined ipilimumab and nivolumab) likely results in little to no difference in OS when compared to neoadjuvant nivolumab monotherapy (P = 0.18; 1 study, 23 participants; moderate-certainty evidence). It may increase the rate of AEs, but the certainty of this evidence is very low (72.8% versus 8.3%, RR 8.73, 95% CI 1.29 to 59; 1 study, 23 participants); this trial was halted early due to observation of disease progression preventing surgical resection in the monotherapy arm and the high rate of treatment-related AEs in the combination arm. Neoadjuvant combination treatment may lead to higher ORR, but the evidence is very uncertain (72.8% versus 25%, RR 2.91, 95% CI 1.02 to 8.27; 1 study, 23 participants; very low-certainty evidence). It likely results in little to no difference in TTR (P = 0.19; 1 study, 23 participants; low-certainty evidence). The study did not measure QOL. OS was not reported for neoadjuvant immunotherapy (combined ipilimumab and nivolumab) when compared to neoadjuvant sequential immunotherapy (ipilimumab then nivolumab). Only Grade 3 to 4 immune-related AEs were reported; fewer were reported with combination treatment, and the sequential treatment arm closed early due to a high incidence of severe AEs. The neoadjuvant combination likely results in a higher ORR compared to sequential neoadjuvant treatment (60.1% versus 42.3%, RR 1.42, 95% CI 0.87 to 2.32; 1 study, 86 participants; low-certainty evidence). The study did not measure TTR and QOL. No data were reported on OS, AEs, TTR, or QOL for the comparison of neoadjuvant interferon (HDI) plus chemotherapy versus neoadjuvant chemotherapy. Neoadjuvant HDI plus chemotherapy may have little to no effect on ORR, but the evidence is very uncertain (33% versus 22%, RR 1.75, 95% CI 0.62 to 4.95; 1 study, 36 participants; very low-certainty evidence). AUTHORS' CONCLUSIONS: We are uncertain if neoadjuvant treatment increases OS or TTR compared with no neoadjuvant treatment, and it may be associated with a slightly higher rate of AEs. There is insufficient evidence to support the use of neoadjuvant treatment in clinical practice. Priorities for research include the development of a core outcome set for neoadjuvant trials that are adequately powered, with validation of pathological and radiological responses as intermediate endpoints, to investigate the relative benefits of neoadjuvant treatment compared with adjuvant treatment with immunotherapies or targeted therapies.

Adolescents, parents, and providers' experiences of triadic encounters in paediatric diabetes clinics: A qualitative study.

INTRODUCTION: Adolescents with Type 1 diabetes are a cohort whose self-management of their diabetes care often declines during adolescence which can lead to adverse health outcomes. Research indicates that providers find it challenging to engage adolescents in communication exchanges during triadic encounters in diabetes clinics. Our study aimed to explore adolescents, parents, and providers' experiences of clinic encounters. METHODS: A qualitative study was conducted with a convenience sample of 13 adolescents with Type 1 diabetes (aged 11-17), 14 parents, and seven providers. Participants were recruited from two outpatient diabetes clinics in two urban children's hospitals, Ireland. Data were obtained using a combination of interviews and focus groups. Data were analysed thematically. RESULTS: Adolescents and their parents appeared to hold both positive and negative experiences of diabetes clinic encounters. Providers reported challenges associated with engaging adolescents in communication exchanges. The structure, focus and style of clinic encounters created barriers that potentially led to suboptimal adolescent participation and impaired provider-adolescent communication during clinic visits. CONCLUSIONS: The findings provide insights into the challenges associated with adolescents' engagement in communication encounters in diabetes clinics. Healthcare providers could encourage adolescents to be more actively involved in their diabetes management, by taking an adolescent-centred approach and creating a nonjudgemental milieu. Focusing on adolescent's agenda could lead to more meaningful and relevant discussions between providers and adolescents and ensure more tailored education in the time available. Adolescence is a risky period for nonadherence and adverse health complications; therefore, it is critical that providers make every contact count in diabetes clinic encounters. PATIENT OR PUBLIC INVOLVEMENT: The study's design and delivery were guided by two advisory groups, comprising (1) five adolescents living with Type 1 diabetes (T1D) and (2) five parents of an adolescent with T1D.

A delicate balance between control and flexibility: Experiences of care and support among pre-teenage children with type 1 diabetes and their families.

For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre-teens (9-12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre-teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre-teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

A systematic review of the educational experiences and needs of children with cancer returning to school.

AIMS: To critically review and synthesize empirical studies on childhood cancer survivors' experiences and needs on returning to school after treatment. DESIGN: A mixed-method systematic review. DATA SOURCES: A search of CINAHL, PsycINFO, EMBASE, MEDLINE, ERIC and Web of Science was conducted for studies published in English, Spanish and Portuguese languages between January 2010 and May 2020. REVIEW METHODS: Twenty-one studies were eligible for inclusion (13 qualitative studies, 6 quantitative and 2 mixed-method studies). The quality of the studies was assessed using the Critical Appraisal Skills Programme and the Mixed Methods Appraisal Tool. Findings were synthesized using data-based convergent synthesis design. RESULTS: Findings were synthesized under four themes: academic continuity and school re-entry; physical and psychological well-being; school life and participation and stakeholders' responses to childhood cancer. Findings indicated that prolonged/recurring absences, physical and mental changes, personal/health factors impacted children's social participation, peer relationships and school re-integration. Factors which contributed to a more positive experience included maintaining contact with peers and teachers throughout treatment, peer relationships, understanding and support from school community. Sharing information about cancer was an ongoing challenging issue for children, that needed to be handled sensitively. CONCLUSION: It is evident that re-entry to school was very challenging for most children due to treatment side effects, prolonged absences, disrupted peer relationships, lack of preparation and lack of communication between schools, families and healthcare professionals. IMPACT: Despite the growing number of childhood cancer survivors worldwide, there is a deficit of studies about children's re-entry experiences and educational needs. This review illustrates the considerable challenges that children face on school re-entry and the critical importance of better care, support and collaboration from healthcare professionals, parents and school personnel. Nurses could help by raising awareness and leading on preparation for school re-entry.

How are children's best interests expressed during their hospital visit?-An observational study.

AIMS AND OBJECTIVES: To describe ways in which children's best interests were observed to be expressed in paediatric settings during their hospital visit. BACKGROUND: The best interests of the child are embodied in national and international legal systems, although the definition remains problematic. The child's limited autonomy mandates duty bearers to have both a child perspective and the child's perspective when considering what the best interest of the child entails in care situations. DESIGN: A qualitative descriptive study with overt, non-participant observations fulfilling the COREQ criteria. METHODS: Thirty-two observations of interactions between children aged 2 to 17 years with both acute and chronic conditions, their parents and healthcare professionals were conducted at three paediatric hospitals in Sweden. Inductive and abductive reasoning were used in the content analysis of data, which followed the identification, coding, categorising and abstraction of observed patterns of the best interest of the child. RESULTS: Findings reveal facilitating and obstructing factors for the child's best interests to be safeguarded in healthcare situations. Children were guided in or hindered from exercising their competence. The observations showed a variation in actions taken by both parents and healthcare professionals to safeguard the best interests of the child. CONCLUSIONS: Determining the best interest of the child requires a case-by-case basis, as it is context-dependent, situational, flexible and dependent on all actors involved and actual decisions made. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals' actions can facilitate or obstruct observed expressions of the child's best interest. It is essential to enhance healthcare professionals' communication skills, knowledge awareness and continuing education about the rights of children receiving healthcare services. Reflections and discussions on how to protect the best interests of children may help healthcare professionals to uphold children's best interest in daily clinical practice.

Position Statement of the International Network for Child and Family Centered Care: Child and Family Centred Care during the COVID19 Pandemic.

It is the position of the International Network for Child and Family Centered Care (INCFCC) that COVID19 restrictions pose tremendous challenges for the health care team in their efforts to provide child and family centered care (CFCC). COVID-19 restrictions impact on the family's right to be presernt with their ill child and to contribute to the caring process. A limited number of articles have discussed challenges about the successful delivery of CFCC during the COVID-19 pandemic. Based on current literature, the INCFCC stresses the need for continuous facilitation implementation of child and family centred care as, it is essential for children's physical and psychological wellbeing. Furthermore we believe that the families' presence and participation holds more benefits than risks to the health of children, their families, and the health care team.

Brief report on a systematic review and meta-analysis of early childhood educational programming and teenage pregnancy prevention.

INTRODUCTION: This is a brief report of a systematic review and meta-analysis which examined the effectiveness of early childhood educational programs for preventing teenage pregnancy by synthesizing randomized control trials. METHODS: The search terms included 'children', 'early childhood intervention', and 'teen pregnancy'. Databases, bibliographies, grey literature, and policy reports were searched in February and March 2018 and included studies with interventions implemented with participants from birth to 5 years old. RESULTS: Only four randomized control trials were eligible for inclusion. Individually, only two of the studies reported a significant effect of early childhood education. There was a significant effect for the primary outcome of teenage pregnancy prevention in the meta-analysis (RR 0.70, 95% CI 0.54-0.89). However, the evidence was very weak. The meta-analysis results were weighted heavily by one study. Additionally, the included studies were conducted decades ago, lacked rigor, and varied considerably by curriculum, enrollment age, length, and intensity. CONCLUSIONS: Given the few number of studies, and issues with rigor and heterogeneity, it is unclear whether the results of this review represent a true effect of the intervention. Importantly, this review highlights the paucity of randomized control trials examining the effectiveness of early childhood education for preventing teenage pregnancy. Future studies need to be designed to address the methodological challenges noted here to determine what facets of early childhood education most effectively prevent teenage pregnancy. Randomized control trials, while challenging to implement, are best suited to determine the true causal effect of early childhood education for preventing teenage pregnancy.

A systematic review of the impact of chronic pain on adolescents' school functioning and school personnel responses to managing pain in the schools.

AIMS: To critically synthesize empirical studies on the impact of chronic pain on adolescents' school functioning and school personnel responses to managing pain in schools. DESIGN: Mixed method systematic review. DATA SOURCES: Medline, CINAHL, PsycINFO, ERIC, ScienLO, Cochrane Library, and EMBASE were searched for published articles from inception to December 2018. REVIEW METHODS: Fourteen studies met the inclusion criteria. Data from the qualitative and quantitative studies were synthesized using parallel-results convergent integrated design. The Critical Appraisal Skills Programme and Mixed Methods Appraisal Tool version 2018 were used for assessing the quality of included studies. RESULTS: Chronic pain appears to have a significant negative influence on adolescents' school attendance, academic performance/achievement, academic competence, physical activities, and social functioning. However, other studies indicated that adolescents with chronic pain had better academic performance and competence than healthy peers and that chronic pain did not affect older adolescents' social functioning. There is limited guidelines and resources for how school personnel can help adolescents to manage pain in schools. CONCLUSION: This review supports the need for future research on the impact of adolescents' chronic pain on the full dimensions of school functioning and to identify the effective responses of school personnel to managing adolescents' pain in schools. IMPACT: Although findings are somewhat conflicting, overall adolescent's chronic pain appears to have a negative influence on school functioning. Yet limited guidelines exist for how school personnel should respond effectively to manage adolescents' pain in schools. The review indicates the importance of written policies to guide teachers on how to facilitate optimal pain management in schools. It also highlights the significance of clear communication between healthcare professionals and school personnel, adolescents with chronic pain and their parents to support optimal school functioning.

You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer.

PROBLEM IDENTIFICATION: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs. LITERATURE SEARCH: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria. DATA EVALUATION/SYNTHESIS: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying child Rest in peace: Parent needs during the child's death Feeling abandoned: Parent needs for contact after the child's death Searching for Meaning: Parents needs when making sense of loss. CONCLUSION: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).

Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis.

BACKGROUND: Shared decision-making is important in child and adolescent healthcare because there is growing international recognition of children and young people's rights to be included in decisions that affect them. In order for young people to participate effectively in shared decision-making they need to develop the skills of engagement with healthcare professionals and confidence in interacting with them. They also need to learn how to manage their condition and treatments on their own when they move into adulthood. Children and young people who participate in shared decision-making in healthcare are likely to be more informed, feel more prepared, and experience less anxiety about the unknown. Significant improvements in cystic fibrosis (CF) survival over recent decades, due to improved therapies and better management of care, means that young people with CF are routinely transitioning to adult healthcare where increasing emphasis on self-management brings greater complexity in decision-making. We need to know what interventions are effective in promoting shared decision-making for young people with CF. OBJECTIVES: To assess the effectiveness of interventions that promote participation in shared decision-making for children and adolescents (aged between four and 18 years) with CF. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearches of journals and conference abstract books. We also searched the reference lists of articles and reviews addressing shared decision-making.Date of most recent search: 12 March 2019.We searched PubMed, CINAHL (EBSCO), Embase (Elsevier), PsycINFO (EBSCO), WHO ICTRP, ASSIA (ProQuest), ERIC (ProQuest), ProQuest Dissertations and Theses, and ClinicalTrials.gov. We contacted study authors with published relevant research in shared decision-making for adults to ask if they were aware of any published or ongoing studies on the promotion of the intervention for children or adolescents (or both) with CF.Date of most recent search: 19 March 2019. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) (but not cross-over RCTs) of interventions promoting shared decision-making for children and adolescents with CF aged between four and 18 years, such as information provision, booklets, two-way interaction, checking understanding (by the participant), preparation to participate in a healthcare decision, decision-aids, and training interventions or educational programs. We planned to include interventions aimed at children or adolescents (or both), parents or healthcare professionals or any combination of these groups provided that the focus was aimed at promoting shared decision-making for children and adolescents with CF. DATA COLLECTION AND ANALYSIS: Two authors independently reviewed papers identified in the searches. MAIN RESULTS: No eligible RCTs were identified for inclusion in this systematic review. AUTHORS' CONCLUSIONS: We were unable to identify RCTs with evidence which would support healthcare policy-making and practice related to implementation of shared decision-making for children and adolescents (aged between four and 18 years) with CF). We hope that having identified this gap in research, awareness will increase amongst researchers of the need to design high-quality shared decision-making interventions for young people with CF, perhaps adapted from existing models for adults, and to test these interventions and children's preferences in RCTs. It is also important to target health professionals with evidence-based education programmes on shared decision-making and a need for international consensus on addressing the variability in education programmes.

Family-centred care of children and young people in the acute hospital setting: A concept analysis.

AIMS AND OBJECTIVES: To provide an operational definition of family-centred care as it applies to hospitalised children. The objective was to provide clarification of the concept by comprehensively analysing the evidence. BACKGROUND: Terms associated with family-centred care include partnership-in-care, negotiated care, parental participation/involvement in care, care-by-parent and child-centred care. The absence of a universally accepted definition contributes to its inconsistent implementation. DESIGN AND METHODS: Concept analysis is acknowledged as a form of inquiry to develop the knowledge base of nursing. Rodgers' evolutionary approach to concept analysis was used as a guiding framework. The systematic literature search yielded 30 theoretical papers; the results are outlined on a PRISMA flow diagram. RESULTS: Surrogate terms identified include partnership-in-care, negotiated care and parent participation. Parental participation in care, the development of respectful and trusting partnerships, information sharing and all family members as care recipients were identified as attributes to family-centred care. There is limited evidence that family-centred care enhances the child's, parents' and families' experience of hospitalisation and is associated with reduced anxiety for parents. CONCLUSION: There is a lack of attention to cultural and societal changes, which impact on those receiving and delivering care. While we know that family-centred care is widely endorsed and enhances well-being, there is a lack of empirical evidence about the impact on health outcomes for children. While children's nurses have been applying some elements of family-centred care to their clinical practice for decades, the concept continues to evolve. RELEVANCE TO CLINICAL PRACTICE: Further research examining the effects of family-centred care for children, their families, healthcare professionals and healthcare organisations reflecting cultural diversity and norms must be conducted. This research should include the effects of family-centred care on parents caring for their child in hospital, how family-centred care supports parents to make healthcare decisions and the outcomes of family-centred care for children and families.

Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals' experiences.

AIM AND OBJECTIVES: To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long-term conditions: diabetes, cystic fibrosis and congenital heart disease. BACKGROUND: Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet, limited empirical evidence exists regarding transition experiences. DESIGN: Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). METHODS: Semi-structured interviews with AYAs aged 14-25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed-methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. RESULTS: Transfer occurred between the ages of 16-early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following-up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults' prerogative. CONCLUSIONS: The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. RELEVANCE TO CLINICAL PRACTICE: Nurses in collaboration with the multidisciplinary team can help AYAs develop their self-management skills and guide parents on how to relinquish responsibility gradually prior to transition.

Children's active participation in decision-making processes during hospitalisation: An observational study.

AIMS AND OBJECTIVES: The aim was to explore and describe the child's active participation in daily healthcare practice at children's hospital units in Sweden. OBJECTIVES: (a) Identify everyday situations in medical and nursing care that illustrate children's active participation in decision-making, (b) identify various ways of active participation, actual and optimal in situations involving decision-making and (c) explore factors in nursing and medical care that influence children's active participation in decision-making. BACKGROUND: Despite active participation being a fundamental right for children, they are not always involved in decision-making processes during their health care. There still remains uncertainty on how to support children to actively participate in decisions concerning their health care. DESIGN: A qualitative study with overt, nonparticipant observations fulfilling the COREQ checklist criteria. METHODS: Observations of interactions between children aged 2 and 17 years with both acute and chronic conditions, their parents, and healthcare professionals were conducted at three paediatric hospitals in Sweden. The Scale of Degrees of Self Determination was used to grade identified situations. The scale describes five levels of active participation, with level one being the least and level five being the most active level of participation. Normative judgements were also made. RESULTS: Children's active participation was assessed as being generally at levels four and five. Children demonstrated both verbal and nonverbal ways of communication during decision-making. Findings indicated that children's, parents' and healthcare professional's actions influenced children's active participation in decision-making processes involving healthcare. CONCLUSIONS: Healthcare professionals specialised in paediatrics need to embrace both a child perspective and a child's perspective, plan care incorporating key elements of a child-centred care approach, to ensure children's active participation at a level of their choosing. RELEVANCE TO CLINICAL PRACTICE: There is a need for awareness creation to help healthcare professionals facilitate children's active participation in their care and decision-making.

Mothers' Experiences of Caring for Children Receiving Growth Hormone Treatment.

PURPOSE: To achieve understanding of the meanings of mothers' experiences of caring for children receiving growth hormone treatment (GHT). BACKGROUND: Children generally begin GHT at a very early age which means parents have significant responsibilities and often endure a complex and difficult pathway with GHT. DESIGN AND METHODS: Hermeneutic interpretive phenomenology based on the approach of Gadamer that adhered to the consolidated criteria for reporting qualitative research (COREQ) guidelines. See Supplementary File 1. Data collected through interviews and diaries with mothers (n = 16). RESULTS: Mothers' experiences were framed by three concepts: uncertainty, normalisation and stigma. These concepts were used to elaborate on the four major meanings encapsulating their experience of caring for their children receiving GHT: (1) "It's the right thing to do" (Striving for the security and the wellbeing of the child), (2) "Doubting yourself constantly" (Constant uncertainty), (3) "But then you just get used to it I suppose" (Adhering to GHT and lifestyle changes - the new normal), (4) "I hadn't been told anything about it" (Information behaviour; looking for normality and certainty). CONCLUSION: Mothers experienced significant challenges coping with the uncertainties associated with GHT and needed more information and support. The felt stigma of restricted growth, rare medical condition and GHT appeared to hinder some mothers from seeking support. PRACTICE IMPLICATIONS: Healthcare professionals and policy makers need to ensure that services for children receiving GHT include the necessary continuous practical and emotional support for parents along the treatment journey.

A literature review of the psychological status of asylum-seeking children: implications for nursing practice.

Europe is in the midst of a large-scale migration crisis, which has implications for healthcare provision for asylum-seeking children and families. The authors set out to identify the psychological status of asylum-seeking children and highlight their needs. A search of three electronic databases was carried out, resulting in 15 studies. Data show that asylum-seeking children appear to experience many mental health difficulties, including post-traumatic stress disorder, depression, self-harm, sleep disturbance and behavioural difficulties. The daily living situation includes a range of psychological stressors, such as lack of space and control; fear of deportation; feelings of inadequacy and hopelessness; poor parental mental health; lack of recreational facilities; communication issues; and financial worries. Since many asylum-seeking children have experienced past trauma, hospitalisation and healthcare encounters may trigger traumatic memories and cause further distress. Awareness of the psychological impact of the situation on children and families may help nurses to provide empathetic, sensitive and culturally competent care.

Children's complex care needs: a systematic concept analysis of multidisciplinary language.

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children's CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children's CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.Conclusion: Children's CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.

Curious, thoughtful and affirmative-Young children's meanings of participation in healthcare situations when using an interactive communication tool.

AIMS AND OBJECTIVES: To describe young children's demonstrated participation in healthcare situations while using an interactive communication tool. BACKGROUND: Participation is a multidimensional concept influenced by situational and contextual issues. In child participation, verbal and nonverbal communicative expressions are of interest, as both demonstrate the child's perspective. Children have a right to participate in all situations that matter to them, for instance healthcare situations. Children, understood as social actors, express a wish and a need to participate in these situations to get information and to enable preparation. DESIGN/METHOD: In a pilot study, video observations were used to capture the children's use of the interactive communication tool in healthcare situations. A hermeneutic analysis was conducted to achieve a deeper understanding of the children's demonstrated cues of participation. RESULTS: The expressed cues of participation were understood as having either a curious, thoughtful or affirmative meaning of participation and there was a continuous movement between them. Curious cues were expressed when introducing or reintroducing the tool in the situation and demonstrated a wish to get knowledge of the things shown on the screen or to perform the virtual tasks. Thoughtful cues slowed down the progression of the situation when the children needed time to think or adapt to the virtual procedures. Affirmative cues were self-rewarding and demonstrated at successful task performance. CONCLUSION: An interactive communication tool used in healthcare situations can promote young children's understanding and facilitate their situated participation, which potentially reduces feelings of distress or anxiety. This innovative use of interactive technology within paediatric health care provides new ways of revealing the child's perspective in the situation. RELEVANCE TO CLINICAL PRACTICE: Interactive technology improves understanding and participation of children in healthcare situations, which impact them positively, both in the present and for the future. A communication tool enhances professionals' opportunities to adopt a child-centred approach by responding sensitively to the children's expressions.

Centeredness in Healthcare: A Concept Synthesis of Family-centered Care, Person-centered Care and Child-centered Care.

BACKGROUND: Increasingly within healthcare, different kind of 'centeredness' are used to denote the focus of care which can create confusion for practitioners. METHODS: A concept analysis was undertaken to identify the antecedents, attributes and relationship between family-, person-, and child-centered care. PubMed and CINAHL were searched from 2012 to 2017 and thirty-five papers were reviewed. RESULTS: Both person- and child-centered care are focused on individuals, a symmetric relationship and the tailoring of care to individual needs while family- centered care is focused on the family as a unit of which the child is included. Person-centered care focuses on an adult person with autonomy, while the focus in child-centered care is the individual child as an own actor with rights but still close to a family. CONCLUSION: It appears at a conceptual level that the concepts of centeredness contain both similarities and differences. Finding ways to structure nursing and focus the care that respects a person's dignity and humanity is essential in healthcare and should be a major goal of health policy and health systems worldwide. IMPLICATIONS: The identification of the antecedents and attributes embedded in the concepts may help raise professionals' awareness of the different foci and how this will influence one's practice. There is a need to recognize strengths and weaknesses of the centeredness in different settings and environments. Furthermore, it is important to know which approach to apply within different situations so that quality care is enabled for every person, child and family.

The Role of Felt or Enacted Criticism in Parents' Decision Making in Differing Contexts and Communities: Toward a Formal Grounded Theory.

Felt or enacted criticism was identified as a significant influence on White British parents' decision making during acute childhood illness in a substantive grounded theory "Containing acute childhood illness within family life." These parents sought to avoid further criticism, sometimes leading to delayed consultation. Using Glaserian grounded theory principles, we conducted a secondary analysis of data from three studies, to establish the transferability and modifiability of the original theory to other settings and communities in Ireland and England. Felt or enacted criticism was found to operate across the childhood age range, social groups, and settings. Parent's strategies to avoid criticism reduced contacts with health professionals, access to support and, more worryingly, communication about their child's health. These findings demonstrate the wider applicability, or "work" in Glaser's terms, of the concept in the English speaking Western world. Findings indicate the need for nurses to identify and mitigate sources of criticism.