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.

Impact of Age-appropriate Preparations for Children With Cancer Undergoing Radiotherapy on Parents and Family Functioning, Parents' Anxiety and Hospital Costs - A Feasibility Study.

PURPOSE: The aim was to evaluate the impact of age-appropriate information and preparation procedures for children with cancer undergoing radiotherapy on 1) parents and family functioning, parents' anxiety and 2) hospital costs compared to traditional care. DESIGN AND METHODS: An un-matched quasi-experimental controlled clinical trial was conducted consisting of a control group including 31 parents of 16 children receiving traditional care and an intervention group including 32 parents of 17 children receiving age-appropriate preparation including seven parts. Validated instruments measured parents and family functioning and parents' anxiety. Hospital costs were calculated. RESULTS: Parents in the intervention group showed better communication throughout their child's radiotherapy (p = 0.01) and at their child's last fraction, parental social functioning improved (p = 0.02). Parents of children receiving general anesthesia, regardless of group, showed higher levels of anxiety (p = 0.04). In general, results regarding hospital costs lacked statistical significance. Development of the intervention was calculated to be USD 4.624. CONCLUSION: Parents who receive age-appropriate information and preparation together with their child benefits in terms of improved communication and social functioning. When children avoid general anesthesia the parents experienced less anxiety and costs for the hospital was lowered. PRACTICE IMPLICATION: Age-appropriate preparations consisting of basic, non-costly utilities and a structured approach are important. If more children are able to undergo radiotherapy without general anesthesia, it means for the individual child fewer risks and restrictions, and for the parents decreased anxiety. For the healthcare, it means lower costs, which enables the hospital to prioritize other areas of pediatric care.

Age-appropriate preparations for children with cancer undergoing radiotherapy: A feasibility study.

The aim of this study was to test age-appropriate information and preparation procedures for children with cancer undergoing radiotherapy (RT) for feasibility and effectiveness in terms of the need for general anesthesia (GA) and anxiety. In a quasi-experimental controlled clinical trial, 17 children aged 3-18 years receiving age-appropriate preparation were compared with 16 children in a control group. Feasibility in terms of recruitment, compliance, and acceptability was assessed. Effectiveness was assessed by the number of children who underwent treatment without GA and their respective fractions and validated instruments measured the children's anxiety and emotional behavior. The preparation parts were delivered as intended without any additional personnel and without dropouts in the intervention group (IG) and therefore found feasible and acceptable. No statistic significances were found concerning the number of children receiving GA or anxiety. However, three children planned for GA in the IG completed their treatments, including 73 fractions awake. Children receiving GA, regardless of group, showed significantly higher negative emotional behavior. Giving children individualized preparation may decrease the need for GA during RT, which gives benefits in terms of fewer risks and restrictions in life for the child and lower costs for health care.

Interactions Between Children and Pediatric Nurses at the Emergency Department: A Swedish Interview Study.

UNLABELLED: Admission to an emergency department can be considered a stressful event for both the child and the family. Due to the nature of traumas, illnesses and fatalities it is a chaotic forum in which good communication between child and staff can be difficult to establish. PURPOSE: The purpose of the study was to describe nurses' methods when interacting with children aged three to six at a pediatric emergency department and to identify aspects in need of further investigation. METHODS: The study included seven nurses who work with children. The data were collected through semi-structured interviews and analyzed using qualitative content analysis. RESULTS: The analysis resulted in three main themes; fundamentals for being able to create a good encounter, nurse's adaptations when encountering children and limitations associated with providing child and family-centered care in the pediatric emergency department. CONCLUSIONS: Healthcare organizations must create time to allow important communication to take place between staff and pediatric patients so that children and families feel safe when being treated. The implementation of effective measures to train staff in communication with pediatric patients is important. PRACTICE IMPLICATIONS: The child should participate in his/her care and in procedures as much as possible. By listening to children and their parents proposals, especially before invasive procedures, effective ways to handle pain and discomfort may be developed.

Use of clowns to aid recovery in hospitalised children.

AIM: To examine how children in hospital perceive their meetings with clowns. METHODS: An interview study with ten children and an observation study of 12 children were carried out at two different hospitals employing clowns in southern Sweden. FINDINGS: Analyses of the interviews produced four main thematic categories: the clowns' attributes, feelings that the clowns provoked, children's thoughts about the clowns' visit, and one negative experience. Analyses of the observations produced two main categories: clowns' interplay based on initiatives from children, and children's reactions to the event. The children experienced their hospital stay as being fun, which helped them feel more at home. A visit from the clowns was evidently important for the children. CONCLUSION: The clowns brought play and humour into the hospital and this gave children the opportunity to focus on something other than their illness, aiding their wellbeing and recovery.

Self-reported outcomes during treatment with tumour necrosis factor alpha inhibitors in patients with rheumatoid arthritis.

OBJECTIVE: To study how patients with rheumatoid arthritis (RA) self-report their experience of disease-related symptoms (fatigue, morning stiffness, pain) and their ability to cope with everyday life (capacity) using a nurse-led structured follow-up during the first year after starting treatment with tumour necrosis factor alpha (TNF-alpha) inhibitors. METHODS: Thirty-nine patients, who were being treated for their RA in our outpatient rheumatology clinic and were beginning treatment with TNF-alpha inhibitors, agreed to evaluate and self-report their experience of fatigue, morning stiffness, pain, and capacity using the visual analogue scale (VAS) every third month during their first year of treatment. A quantitative method was used to study the changes in these four variables. In addition, at the same time, we studied the relationship between self-reported capacity and each of the three symptoms. RESULTS: After 12 months' treatment with TNF-alpha inhibitors, the change (median interquartile range [IQR]) measured with VAS was -14 (-38, -7) mm for fatigue, -22 (-47, -4) mm for morning stiffness, -28 (-50, 0) mm for pain and -27 (-48, -6) mm for capacity. All changes were statistically significant (p < 0.001). Baseline and 12 months' capacity correlated significantly with fatigue, morning stiffness and pain (all p < 0.01). In addition, the median change in self-reported capacity correlated significantly with the median change in each of the three symptoms (p < 0.01). CONCLUSION: During the first year of treatment with TNF-alpha inhibitors, patients reported decreased fatigue, morning stiffness and pain, while their capacity increased. The increased capacity rate closely followed the decrease in symptom rate.

Surveillance of vaccine safety: comparison of parental reports with routine surveillance and a clinical trial.

One way to maintain confidence in vaccination programmes is to improve monitoring of immunisation safety. We studied active parental reporting of adverse events after a booster dose of diphtheria-tetanus toxoid (DT). 7193 children received the vaccine. Questionnaires were submitted by 84.2% of the parents, who reported reactions for 9.2% of the children. Four percent of events were classified as moderate/severe by interviews. Relative risk of redness and swelling reported was 0.24 (95% CI, 0.13-0.42) compared to a clinical trial, while it was 71.0 (44-114) compared to passive surveillance. Active surveillance by parental reports is a useful complement to passive surveillance of childhood immunisations to generate hypotheses for evaluation in controlled studies.

Screening for infants with developmental deficits and/or autism: a Swedish pilot study.

The purpose of this study was to develop an instrument (SEEK) for the early detection of developmental deficits and/or autistic spectrum disorders among children by the age of 8 months at eight child health care centers in southern Sweden. Health visitors, trained by the research team, screened 312 infants. SEEK captured 5 infants with several points. Twenty-one percent of the infants obtained at least one SEEK point. At the 18-month follow-up, 5 children still showed more obvious signs of developmental problems. The health visitors found SEEK to be very satisfactory and easy and quick to use and its items and questions to be easy to administer. The results have indicated a new systematic methodology to examine infants, which is to be further developed.

Practices for preparing children for clinical examinations and procedures in Swedish pediatric wards.

This study sought to elucidate Swedish pediatric wards concerning the practice of informing children and their parents about clinical examinations and procedures. A semi-structured questionnaire was distributed to all 36 pediatric departments in Sweden, comprising of 83 wards. Fifty-eight (70%) of the wards responded. The results showed that 55 (95%) of the wards provided regular planned information programs. Twenty-seven (47%) of the wards had formulated quality goals for their information program, but in only nine (16%) of the wards were the goals quality assured. Although the results showed that most pediatric wards in Sweden inform children about hospitalization, formulated quality goals remain uncommon. In some wards, economic cutbacks had led to reduction of information for preparation. Despite obstacles, nurses try to give priority to the giving of information. Further studies should focus on children's and parents' experience and satisfaction.