How children in Sweden accessed and perceived information during the first phase of the Covid-19 pandemic

Aim: To describe how children in Sweden accessed and perceived information about SARS-CoV2 and Covid-19 during the first phase of the outbreak. Methods: This study is a substudy of an international cross-sectional online mixed methods survey examining elements of children’s health literacy in relation to Covid-19. The survey included multiple-choice questions, open-ended questions and drawings and collected information from 50 Swedish children (7–12 years). Data were analysed concurrently on a descriptive level using statistics and content analysis. Quantitative and qualitative data, including the drawings, were considered equally important and resulted in six categories, illuminating how children accessed and perceived information about the pandemic. Results: The survey showed that children accessed information mainly from school but also from TV. They preferred information from reliable sources. Children reported the information they accessed as easy to understand and it prompted them to ask new questions. They reported they knew a lot about the pandemic, for example, the potential danger to themselves and others and how to act to protect themselves and others. They perceived the pandemic as an intrusion on their lives. Conclusions: This study indicates that Swedish children between 7 and 12 years old were well informed about SARS-CoV2 and Covid-19 during the first phase of the pandemic. School was shown to be an important source of information. The children could explain how to act to protect themselves and others from becoming infected by the virus

“People play it down and tell me it can’t kill people, but I know people are dying each day”. Children’s health literacy relating to a global pandemic (COVID-19); an international cross sectional study

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

Children’s pictures of COVID-19 and measures to mitigate its spread: An international qualitative study

Objectives: To gain insight into children’s health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design: A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7–12 years. Setting: Children participated in the study in six countries – the UK, Australia, Sweden, Brazil, Spain and Canada. Method: A qualitative creative component, embedded in an online survey, prompted children to draw and label a picture. Children were recruited via their parents using the researchers’ professional social media accounts, through known contacts, media and websites from health organisations within each country. Analysis of the form and content of the children’s pictures took place. Results: A total of 128 children (mean age 9.2 years) submitted either a hand-drawn (n = 111) or digitally created (n = 17) picture. Four main themes were identified which related to children’s health-related knowledge of (1) COVID-19 and how it is transmitted; (2) measures and actions to mitigate transmission; (3) places of safety during the pandemic; and (4) children’s role in mitigating COVID-19 transmission. Conclusion: Children’s pictures indicated a good understanding of the virus, how it spreads and how to mitigate transmission. Children depicted their actions during the pandemic as protecting themselves, their families and wider society

Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

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

Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus

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

Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

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-termharm 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. [Abstract copyright: © 2023. The Author(s).

Adolescents' experiences of undergoing scoliosis surgery : psychological aspects and patterns of pain

Background: Adolescent idiopathic scoliosis (AIS) affects 1 – 3% of all children aged 10 – 16 years; of these approximately 80% are girls. Scoliosis surgery is a major (one of the most extensive) elective paediatric orthopaedic procedure and is known to cause severe and excruciating pain that requires advanced postoperative pain management. Until now, scoliosis surgery has mainly been studied in terms of corrective surgical outcomes, and techniques for surgery and pain management. Adolescents’ narratives and experiences of recovery after scoliosis surgery, as well as psychological aspects in correlation to postoperative pain have seldom been studied. Aim: The overall aim of this thesis was to explore adolescents’ experiences of undergoing scoliosis surgery, experiences and self-reporting of pain, and psychological consequences. Methods: This thesis comprises four studies. The participants in Studies I and II belonged to the same cohort, all of whom underwent corrective surgery in the period from 2004 to 2007. In Study I there was a cohort of 87 adolescents and young adults with different types of scoliosis, some of whom had impaired verbal communication. The patients and their parents/caregivers were asked to complete a survey with questions regarding experienced pain, nausea and overall satisfaction with the hospital stay. Study II was a qualitative study in which six adolescents from the cohort in Study I were interviewed. The adolescents included in Study II had idiopathic scoliosis, and the interviews took place about two years after they had undergone surgery. Study III, which included 37 adolescents, was a prospective study of adolescents with idiopathic scoliosis (AIS) from four spine centres in Sweden. They completed two psychometric instruments and one structured interview both before surgery and about six months afterward. They also self-measured pain on the third postoperative day. In Study IV the adolescents included belonged to the same cohort as in Study III. In this prospective, mixed-method study, the participants self-reported pain before surgery, every four hours for the first five days after surgery, once a day for the first fourteen days at home after discharge from the hospital, and finally at the six-month follow-up. They were also asked to keep a diary during the first two weeks at home after discharge from the hospital. At the six-month follow-up they were interviewed about the overall experience of undergoing scoliosis surgery: how they experienced the time before surgery, during the hospital stay and the recovery period up through the date of the interview. iv Results: Study I showed that the patients experienced severe pain and nausea postoperatively during the hospital stay. The parents/caregivers felt helpless and sometimes lacked confidence in the nurses. Despite this, overall satisfaction with the hospital stay was rated as good. Study II showed that the adolescents experienced nervousness and fear before surgery, severe pain and postoperative nausea and vomiting (PONV) during the hospital stay, had problems with the scars and experienced social difficulties during recovery. Nightmares were reported for up to two years after surgery. In Study III, the ratings of stress symptoms were higher before surgery than after. There were significant correlations between stress symptoms before surgery and levels of postoperative pain. There were also significant correlations between levels of postoperative pain and stress symptoms at the six-month follow-up. In Study IV, postoperative pain ratings showed great individual variation, and in the analysis of drop-outs it was found that those who did not keep a diary at home self-reported higher levels of pain at the six-month follow-up as well as higher levels of stress symptoms and internalizing symptoms. The participants described experiences of severe pain at the hospital and also during recovery. Nausea, constipation and lack of energy emerged from the narratives - but so did the desire to get back to school, sports and friends. The adolescents described how they were hovering between suffering and control and also striving towards normality. Conclusion: The results indicate a need for interventions among adolescent patients to reduce stress symptoms before major surgery. Nurses need to identify adolescents with stress symptoms, use stress-reduction techniques, and support adolescent patients with coping strategies aimed at reducing preoperative stress and managing postoperative pain. Postoperative pain management needs to be improved, both as regards pain assessment and pharmacological and non-pharmacological pain management. Nurses need to improve their medical technical skills in order to optimize pain treatment. After discharge from the hospital adolescents have to struggle with difficulties at home such as pain, nausea, constipation, mobilization and a lack of energy. An intervention with follow-up telephone calls during the second week at home could reduce stress and help resolve difficulties. Since this study indicates stress symptoms at the six-month follow-up, there should also be a nurse interview to check on well-being and to see if any further intervention is needed at that time. If preoperative stress can be reduced, postoperative pain management optimized and the recovery period better supported, the overall experience of going through scoliosis surgery should improve

It hurts to get forced : Children's narratives about restraint during medical procedures

According to the UN Convention on the Rights of the Child (UNCRC), children have the right to be involved in decisions about medical procedures affecting them. However, research has shown that healthcare professionals sometimes find this difficult to achieve and those procedures then are performed against the will of the child. The aim was to illuminate restraint from the perspective of children’s and young people’s experiences of feeling forced during medical procedures. Following the phenomenological hermeneutic method, a secondary qualitative analysis of narrative data from four datasets collected between 2001 and 2020 was performed. Twelve children and young people aged 6-19 years (three male, nine female) from central and northern Sweden narrated their experiences of restraint related to medical procedures in nine narrative interviews and three short written narratives. The analysis revealed that it hurts to get forced, this being illustrated in six themes: bodily misery, emotional rebellion, feeling disregarded, physically limited, desiring escape, and leaving deep traces. From the perspective of children and young people, restraint was interpreted with inspiration from the philosopher Michel Foucault, as being overpowered - not voluntary submission but offering resistance - and according to the theory of caring and uncaring, a relationship in which the healthcare professional is perceived as indifferent to the patient as a person. In conclusion restraint hurts and means powerlessness to the child, leaving deep traces that remain for a long time. The findings call the healthcare profession to take action to support children’s self-determination, participation, and integrity in healthcare. How children experience restraint in healthcare merits further investigation from the children’s own perspective

Initial Education for Families with Children Diagnosed with Type 1 Diabetes : Consensus from Experts in a Delphi Study

A child’s diagnosis of type 1 diabetes can create major challenges for the family, and early education about the disease is crucial. The aim of this study was to identify and reach expert consensus about the priority of topics for the two initial weeks of education of families with a child diagnosed with type 1 diabetes. Specialist nurses (n = 15) working with children and adolescents with diabetes at Swedish pediatric clinics participated in a Delphi study. We sent these experts three rounds of a web survey and analyzed their answers using qualitative content analysis and descriptive statistics. The results show the experts’ consensus on the most important educational topics for families of a child diagnosed with type 1 diabetes. The highest priority topics were actions for hypo-/hyperglycemia, blood-glucose monitoring, symptoms of hypo-/hyperglycemia and adjustment of insulin. The experts’ top-ranked educational topics were in line with the International Society for Pediatric and Adolescent Diabetes guidelines for educating children with type 1 diabetes and also considered important by children and their families. The topics identified here can help nurses educate children with type 1 diabetes, contribute to further research into type 1 diabetes education, and inform the development of national guidelines

Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus

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. © 2023, The Author(s). **Please note that there are multiple authors for this article therefore only the name of the first 30 including Federation University Australia affiliate “Blake Peck” is provided in this record*