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.

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.

Stress symptoms among adolescents before and after scoliosis surgery: correlations with postoperative pain.

AIMS AND OBJECTIVES: The aim of this study was to describe stress symptoms among adolescents before and after scoliosis surgery and to explore correlations with postoperative pain. BACKGROUND: Scoliosis surgery is a major surgical procedure. Adolescent patients suffer from preoperative stress and severe postoperative pain. Previous studies indicate that there is a risk of traumatisation and psychological complications during the recovery period. DESIGN: A prospective quantitative cohort study with consecutive inclusion of participants. METHODS: A cohort of 37 adolescent patients aged 13-18. To assess the adolescents' experiences before surgery and at six to eight months after surgery, the Trauma Symptom Checklist for Children - Alternative version, Youth Self-Report and Kiddie Schedule for Affective Disorder and Schizophrenia for children 12-18 were used. The Visual Analogue Scale was used for self-report of postoperative pain on day three. RESULTS: Rates of anxiety/depression and internalising behaviour were significantly higher before surgery than six months after. Preoperative anger, social problems and attention problems correlated significantly with postoperative pain on day three. At follow-up, postoperative pain correlated significantly with anxiety, social problems and attention problems. CONCLUSIONS: The results of this study indicate a need for interventions to reduce perioperative stress and postoperative pain to improve the quality of nursing care. RELEVANCE TO CLINICAL PRACTICE: Attention to preoperative stress and implementation of interventions to decrease stress symptoms could ameliorate the perioperative process by reducing levels of postoperative pain, anxiety, social and attention problems in the recovery period.

Adolescents' experience with scoliosis surgery: a qualitative study.

This article reports a study of adolescents' narrated experiences of undergoing scoliosis surgery. Six adolescents were interviewed. Open and semistructured questions were asked, and a qualitative content analysis of the text was performed. The results are presented in three main categories followed by subcategories. The three main categories of experience were emotional, physical, and social. The emotional aspects that emerged were fear, nightmares, nervousness, and helplessness. These had a great impact on adolescents' well-being before, during, and after the hospital visit. The physical aspects were mobilization, scars, different hip levels, pain, nausea, appetite, and urinary catheter. These aspects caused much discomfort, mostly during the hospital visit. The social aspects were friends, power, coaching and comfort, and sports. Some of the social aspects had a strong negative impact on the adolescents' well-being mostly after the hospital visit. This study suggests that both before and long after the surgery adolescents have strong emotions that they should be better prepared and helped to manage. To optimize perioperative care an interdisciplinary, a holistic approach must be taken that incorporates the complexity and whole of the adolescent's experiences. The findings of this study suggest that perioperative care of adolescents during scoliosis surgery needs to be optimized. To improve patients' psychologic preparation before surgery pediatric nurses should learn more about the individual patient and make care plans from a holistic perspective. Follow-up after discharge should address emotional, social, and physical aspects of the adolescent's health.

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.

"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.

Adolescents' Experiences of Scoliosis Surgery and the Trajectory of Self-Reported Pain: A Mixed-Methods Study.

Scoliosis surgery for adolescents is a major surgery with a difficult recovery. In this study, a mixed-methods design was used to broaden the scope of adolescents' experiences of surgery for idiopathic scoliosis and the trajectory of self-reported pain during the hospital stay and through the first 6 months of recovery at home. Self-reports of pain, diaries, and interviews were analyzed separately. The results were then integrated with each other. The trajectory of self-reported pain varied hugely between individuals. Adolescents experienced physical suffering and struggled to not be overwhelmed. The adolescents described the environmental and supportive factors that enabled them to cope and how they hovered between suffering and control as they strived toward normality. This study highlights areas of potential improvement in perioperative scoliosis care in terms of nursing support and pain management.

Young people's experiences with scoliosis surgery: a survey of pain, nausea, and global satisfaction.

BACKGROUND: Scoliosis surgery is one of the most extensive elective surgical processes performed on young people. Although there is a great store of knowledge of surgical techniques, patients' experiences of going through surgery have not been extensively studied. PURPOSE: The aim of this study is to describe how a cohort of young people and their parents retrospectively rate postoperative pain and nausea and describe their experiences of scoliosis surgery. METHODS: In a retrospective cohort study, 87 young people aged 8-25 years with scoliosis who underwent corrective surgery from 2004 to 2007 were invited to complete a questionnaire, as were their parents. The semistructured questionnaire dealt with experiences of pain, nausea, and global satisfaction pre- and posthospitalization, assessed by visual analogue scales. The free text commentaries were analyzed using qualitative content analysis. RESULTS: A total of 51 patients (59%) and 65 parents (75%) answered the questionnaires. Out of the completed questionnaires, 41 had idiopathic, 23 neuromuscular, and 6 other types of scoliosis. Postoperative patient-rated pain was severe 7.3 (median, interquartile range 5-8.4, visual analogue scale 0-10 cm), and the severe pain lasted for 5 (median, 2.7-7.0) days. Nausea was rated to a median of 5 (1.1-7.3) and lasted for a median of 3 (1-5.2) days. Global satisfaction was rated to a median of 3.2 (1.5-5.2). Postoperative pain was the most prominent issue, and present pain was found in 51% of respondents. Nausea and loss of appetite were common during the entire hospital stay. Waiting for the nurses' assistance, lack of control, and technical failures with the analgesia equipment caused discomfort. Parents experienced a lack of confidence in the nurses and felt helpless to support their child or relieve the child's suffering. CONCLUSION: Young people who underwent scoliosis surgery reported severe postoperative pain and nausea during the hospitalization period and persistent and recent onset pain after discharge, although they did not indicate global dissatisfaction with the hospital stay.