Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020–2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known:• Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care.• Professionals report uncertainty and tensions in applying evidence-based practice to children’s procedural care.What is New:• This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives.• The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.
The aim of this study was to examine aspects of children’s health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7–12 years of age and parent/caregivers from the UK, Sweden, Brazil, Spain, Canada and Australia was conducted between 6th of April and the 1st of June 2020. The surveys included demographic questions and both closed and open questions focussing on access to and understanding of COVID-19 information. Descriptive statistics and qualitative content analysis procedures were conducted. The findings show that parents are the main source of information for children during the pandemic in most countries (89%, n = 347), except in Sweden where school was the main source of information. However, in many cases parents chose to shield, filter or adapt their child’s access to information about COVID-19, especially in relation to the death rates within each country. Despite this, children in this study reported knowing that COVID-19 was deadly and spreads quickly. This paper argues for a community rather than individual approach to addressing children’s health literacy needs during a pandemic.
The aim of this study was to scope communication curriculum reported as currently being delivered within undergraduate children's nursing programmes across the Republic of Ireland and the United Kingdom. Communication between a children's nurse and a child/young person influences a child/young person's healthcare experience. Despite an identified need for a comprehensive and effective communication curriculum within undergraduate nursing, there is a notable gap of understanding of the delivery and content of communication training within children's nursing curricula. A mixed method, online anonymous self-report survey design was adopted. Programme Leads of undergraduate children's nursing programmes in the Republic of Ireland and the United Kingdom were asked to report on how communication training is delivered to students on undergraduate children's nursing programmes. The Checklist for Reporting of Survey Studies (CROSS) was used for the reporting of this study. Thirty-two programme leads completed the survey (51 % response rate). Findings show variability in the delivery and content of communication training across Higher Educational Institutions. Core communication modules featured across all nursing programmes, however, only two programme leads reported delivering standalone child-centred communication modules. Communication training was not always delivered by an educator with professional experience of children and young people in healthcare. Curriculum capacity had an impact on the delivery of communication training, with clinical practice being relied on to supplement child specific communication training. Programme leads highlighted the need for greater inclusion of child voice in shaping and delivering undergraduate children's nurse education. This study shows that while communication is covered as a core part of the undergraduate nursing curriculum across the Republic of Ireland and the United Kingdom, it generally lacks a focus on children and young people and is not always supported by educators with professional experience of children and young people in healthcare. More work needs to focus on equipping undergraduate children's nurses with the unique skills needed to communicate effectively with children and young people and incorporate learnings into nursing pedagogy. to be included in abstract after acceptance.
Background: Childhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care professionals, and parents’/caregivers’ fears and concerns can go unacknowledged and unaddressed by health care professionals. Objective: This objective of this review was to examine parents’/caregivers’ fears and concerns regarding their child’s epilepsy, the impact of these fears and concerns on family life, the social and emotional well-being of parents/caregivers and any factors which mitigate these fears and concerns. Design: Scoping review using a modified version of Arksey and O’Malley’s framework. Data sources: Relevant studies were identified using key search terms in Scopus, Medline, CINAHL and PsychInfo databases in March 2021 with hand checking of reference lists. Search terms were developed using population (parents/caregivers of children aged ≤ 18 years with epilepsy, families); concept (parents’/caregivers’ fears, concerns, anxiety about their child’s epilepsy); and context (any setting). A further search was run in April 2022. Other inclusion criteria: English language empirical studies, 2010–2021. Study appraisal methods: A minimum of two reviewers independently screened articles and undertook data extraction and decisions were consensually made. Methodological quality appraisal was undertaken using the Mixed Methods Appraisal Tool v2018. A data extraction table was created to chart all studies. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (S1 Table). There is no published copy of the review protocol. Main findings: The search identified a total of 4077 papers (after duplicates were removed) of which 110 were assessed for eligibility. Twenty-four papers published between 2010–2021 were included in the review and each paper was treated as a separate study. The review findings indicate that parents’/caregivers’ fears and concerns stem from more than their child’s seizures and relate to many wider aspects of family life. These fears and concerns had far-reaching influences on their parenting/caregiving, and on the lifestyle and activities of their child and their family. What was less evident was what parents/caregivers wanted in terms of support or how they thought health professionals could acknowledge and/or allay their fears and concerns. The discussion is framed within the compassion-focused therapy model as a basis for generating new thinking about the impact of these fears and concerns and the need for a new agenda for clinical consultations in childhood epilepsy. Conclusions: The review concludes with a proposal that a more compassionate agenda underpins the dialogue between parents/caregivers and clinicians to encompass and mitigate the wider emotional, psychosocial, and societal threats that impact on the parent/caregivers of children with epilepsy.
Communication is a central part of radiological procedures and influences children's experiences. Previous research concentrates on communication and experiences during complex radiological procedures such as magnetic resonance imaging (MRI). Less is known about the communication that occurs with children undergoing procedures, such as non-urgent X-ray procedures, or the impact communication has on a child's experience. This scoping review examined evidence relating to the communication which occurs between children, parents and radiographers during children's X-ray procedures and how children experience undergoing X-ray procedures. The comprehensive search identified eight papers. Evidence shows that radiographers dominate communication during X-ray procedures, with their communication in many cases being instructional, closed and limiting the opportunities for children to be involved. Evidence indicates that radiographers have a role in facilitating children in actively engaging in communication during their procedure. The papers that sought children's first-hand experiences highlight children's mainly positive experiences of having an X-ray, and the importance of informing children about their X-ray before and during the procedure. The scarcity of literature highlights a need for research exploring communication during children's radiological procedures and children's first-hand experiences of undergoing these procedures. Findings highlight a need for an approach that recognises the importance of dyadic (radiographer and child), and triadic (radiographer, parent and child) communication opportunities during an X-ray procedure. This review highlights a need for an inclusive and participatory approach to communication that recognises children's voice and agency in X-ray procedures.
Background: Failure to recognize and respond to clinical deterioration in a timely and effective manner is an urgent safety concern, driving the need for early identification systems to be embedded in the care of children in hospital. Pediatric early warning systems (PEWS) or PEW scores alert health professionals (HPs) to signs of deterioration, trigger a review and escalate care as needed. PEW scoring allows HPs to record a child’s vital signs and other key data including parent concern.Aim: This study aimed to explore the experiences and perceptions of parents about the acceptability of a newly implemented electronic surveillance system (the DETECT surveillance system), and factors that influenced acceptability and their awareness around signs of clinical deterioration and raising concern.Methods: Descriptive, qualitative semi-structured telephone interviews were undertaken with parents of children who had experienced a critical deterioration event (CDE) (n = 19) and parents of those who had not experienced a CDE (non-CDE parents) (n = 17). Data were collected between February 2020 and February 2021.Results: Qualitative data were analyzed using generic thematic analysis. Analysis revealed an overarching theme of trust as a key factor that underpinned all aspects of children’s vital signs being recorded and monitored. The main themes reflect three domains of parents’ trust: trust in themselves, trust in the HPs, and trust in the technology.Conclusion: Parents’ experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (The DETECT system) were positive; they found it acceptable and welcomed the use of new technology to support the care of their child.