Claus Sixtus Jensen

Introduction Patient-reported experience measures (PREMs) are valuable instruments for capturering patient feedback but often miss the perspectives of children and adolescents. Research indicates that parental proxies do not fully reflect children’s and adolescents’ experiences. The World Health Organization and other authorities emphasize the need to include youth in healthcare evaluations. This pilot study aimed to assess the practicality of using the PREM, titled “What do you think about the hospital? Help us get better” in a Danish Children and Adolescent Outpatient Clinic. The study focused on understanding the challenges and opportunities associated with using this instrument to gather feedback from children and adolescents on their healthcare experiences. Methods A total of 356 PREMs were collected and analyzed using thematic analysis and descriptive statistics. Thematic analysis identified patterns in openended responses, while descriptive statistics summarized key demographic variables such as age and gender. Data was systematically transferred to the REDCap database for accuracy, with oversight from the first author. Results The study found that PREM effectively captured valuable insights into the experiences of children and adolescents, highlighting key areas for improvement in pediatric care. The findings suggest that PREM can be a useful instrument for identifying gaps in communication and engagement, particularly among adolescents, and for fostering a greater sense of control over their healthcare. Conclusions This study shows that current PREM can provide meaningful assessments of child and adolescents experiences within the Danish healthcare system. While the findings are specific to the units involved, they suggest that PREM could be a valuable instrument in clinical practice for assessing and improving communication, care environments, and transitions for adult care. Further research in a broader range of settings is needed to confirm its applicability across different healthcare environments. Clinical Relevance Children’s and adolescents' feedback provides clinically relevant insights into areas for improvement in pediatric care, especially in communication, engagement, and the care environment. PREM could serve as a valuable instrument for ongoing feedback and continuous improvement in pediatric clinical practice. Keywords: PREM, children, adolescents, patient experience, healthcare communication, transition to adult care, patient feedback.

Formålet med studiet er at undersøge hvad der særligt har betydning for forældre til børn med kronisk sygdom, som oplever gentagne indlæggelser sammen med deres barn.

Objective: This scoping review will identify and map available nursing interventions provided by pediatric oncology hospital services to pediatric patients with cancer and/or their family members. The aim is to develop a comprehensive overview of the characteristics of nursing interventions and to identify potential knowledge gaps. Introduction: Clinical nursing care is an essential part of pediatric oncology. In pediatric oncology nursing research, a shift from explanatory studies to intervention studies is recommended. The body of research on interventions for pediatric oncology patients and their families has grown in recent years. However, there are no reviews on nursing interventions currently available for pediatric oncology. Inclusion criteria: Studies will be considered for inclusion if they refer to pediatric patients with cancer, and/or family members of a pediatric patient with cancer, who have received non-pharmacological and non-procedural nursing interventions provided by a pediatric oncology hospital service. Studies must also be peer-reviewed, published from the year 2000 onward, and written in English, Danish, Norwegian, or Swedish. Methods: The review will be conducted in accordance with the JBI guidelines for scoping reviews. A 3-step search strategy will be followed using the PCC mnemonic (Population, Concept, Context). The databases to be searched will include Scopus, PubMed, CINAHL, PsyclNFO, and Embase. The identified studies will be screened based on title and abstract, as well as full text, by 2 independent reviewers. Data will be extracted and managed in Covidence. A summary of the results will be presented as a narrative description, supported by tables.

Background: Survival possibilities among children and adolescents (referred to as “children”) with cancer have increased, resulting in more children and parents living with sequelae and psychological distress, respectively. Childhood cancer treatment is intensive and long term and affects the everyday life and functioning of the whole family, including daily and social life restrictions and hospitalizations, which force the parents to split up between the hospital and home to care for both the ill child and siblings and manage their jobs and homelife routines. Adequate parental coping strategies are essential for family adjustment and the child’s coping ability. Parenting a child with cancer, however, is challenging and stressful. Objective: This study aimed to identify parental needs when caring for a child with cancer. Methods: Using a participatory design approach, we generated data through field studies and semistructured interviews with parents of children receiving treatment at Odense or Aarhus University Hospital and focus group interviews with parents of children who have completed treatment within the past 2 years. Results: The parents felt trapped in an endless, emotional roller-coaster ride of fear, hope, grief, and mental and emotional exhaustion and had very limited resources for self-care. The presence of support from peers, health care providers, and relatives was a facilitator of successfully coping with the illness. In contrast, full-time isolation in the hospital, due to COVID-19 restrictions, was a barrier and linked with feelings of loneliness. Loneliness was also experienced as navigating difficult emotions when responding differently from the spouse or not feeling understood by relatives. Conclusions: Parents of children with cancer face many stressors that may become a psychological burden. New innovative approaches to provide psychosocial support, taking into account that the families are periodically isolated, are needed. For this goal, technological solutions may be useful and should be the focal point of this study’s experimental design phase.

Background Paediatric track and trigger tools (PTTTs) based on vital parameters have been implemented in hospitals worldwide to help healthcare professionals identify signs of critical illness and incipient deterioration in hospitalised children. It has been documented that nurses do not use PTTT as intended, but deviate from PTTT protocols because, in some situations, PTTT observations make little sense to them. The present study aimed to reach consensus on whether automatically generated PTTT scores that are higher than deemed reasonable by healthcare professionals according to their professional experience and clinical expertise may be downgraded. Methods A two-round modified Delphi technique was used to explore consensus on 14 patient cases for hospitalised children with a high PTTT score that did not raise concerns by systematically collating questionnaire responses. Participants rated their level of agreement on a 9-point Likert scale. IQR and median were calculated for each case. Findings A total of 221 participants completed round 1 and 101 participants completed round 2. Across the two rounds, majority of the participants were from paediatric departments, nurses and women. In round 1, consensus on inclusion was reached on 2 of the 14 cases. In round 2, consensus was reached on one additional patient case. Three of the 11 non-consensus cases remaining after rounds 1 and 2 were included by the research group based on predefined criteria. Conclusion In conclusion, a consensus opinion was achieved on six patient cases where the child had a high PTTT score but where the healthcare professionals were not as concerned as indicated by the PTTT score.

Aim: Newborn screening represents a paradigm shift in the treatment of children with cystic fibrosis. This study aimed to explore parents' everyday life experiences from the time of diagnosis and in the following months.Methods: Narrative interviews were conducted at Aarhus University Hospital, Denmark, with parents (mothers = 15 and fathers =14) of 15 term‐born children with a mean age of 2 weeks (range 1–3.5 weeks). Participant observation and field notes were used to complement interview data. The analysis was inspired by Kvale and Brinkmann.Results: Three themes were identified. First, on diagnosis, a profound difference in parents' experience was observed depending on whether the diagnosis was communicated by a medical doctor from the cystic fibrosis team or by a paediatrician from another hospital. Second, during the initial meetings and subsequent relationships with the cystic fibrosis team, the knowledge and calmness exhibited by the doctors and nurses were very valuable. Third, regarding everyday life after the diagnosis, most parents described experiencing anxiety and concern for their child's future.Conclusion: The parents' experiences highlighted essential elements that should be implemented to optimise the patient care pathway as they are fundamental to parents' ability to cope with the new living conditions.