Young adults' perception of transition from paediatric to adult care.

AIM: Medical advancements will lead to more children with long-term illnesses and/or disabilities undergoing the transition to adult care. Previous studies show that many young adults are unprepared for this transition, and might suffer from loss of follow-up. This study aimed to investigate the post-transfer experiences of the transition among young adults with long-term illnesses and/or disabilities. METHODS: A qualitative descriptive design was used. Three semi-structured focus group interviews were conducted with 15 participants (18-25 years of age) recruited via patient organisations focusing on children and young adults with disabilities and/or long-term illnesses. The interviews were analysed with conventional content analysis. RESULTS: One theme emerged: limbo, defined as an indefinite experience without knowing when or even if something would happen, or whether they would be overlooked. The theme rested on four categories: transition experiences, organisational aspects, influence on daily life, and self-management. CONCLUSION: Areas for improvement were identified across the entire transition that is, in the preparation, transfer, and post-transfer stages. Our findings indicate a limited understanding among healthcare providers (HCPs) that the transition continues until the young adult has been fully integrated into adult care.

Role of information and preparation for improvement of pediatric perioperative care.

The perioperative period is a significant and stressful experience that may cause negative consequences in children, both in a short-term and long-term perspective. Despite a wide base of evidence stating the importance of adequate preparation to reduce anxiety, improve coping, cooperation and enhance recovery, many children continue to report that they feel unprepared for their perioperative experience. To secure children's right to request and need for preparation, the content, format, and availability of existing programs need to be scrutinized. Preparation programs in perioperative care must change from simply providing information to embracing the importance of children's need to process the information provided in order to learn and understand. Interactive web-based technology can function as a significant resource for preparation of children for perioperative procedures. By changing perspective from children's need for information to their need for learning and by developing preparation programs including adequate educational principles, web-based technology can be used to its fullest advantage as a healthcare learning and preparation resource.

Establishment of resilience in a challenging recovery at home after pediatric tonsil surgery-Children's and caregivers' perspectives.

The objective of this study was to explore children's and caregivers' experiences and management of postoperative recovery at home after tonsil surgery. The study had an explorative qualitative design with an inductive approach. Twenty children (5-12 years of age) undergoing tonsillectomy or tonsillotomy with or without adenoidectomy participated along with their caregivers in semi-structured interviews at a mean time of 28 days after surgery. The interviews were analyzed with content analysis. One main category emerged from the interviews: children and caregivers struggle to establish resilience in a challenging recovery. The families' resilience relied on their situational awareness and capacity to act, which in turn formed a basis for the ability to return to normal daily life. Children and caregivers described the recovery as an evident interruption of daily life which had an impact on the children's physical and psychological well-being. Both children and caregivers described the pain as a central concern. The families used different pharmacological and complementary strategies to manage the pain, which in some cases were complex. Some families said that the analgesics were insufficient in preventing breakthrough pain, and spoke about a lack of support as well as inadequate and contradictory information from healthcare staff. Caregivers also expressed uncertainty, ambivalence, or anxiety about the responsibility associated with their child's recovery. To optimize and support the recovery after tonsil surgery, it is crucial to obtain knowledge of children's and caregivers' perspectives of postoperative recovery at home. The results indicate that the postoperative period included several troublesome experiences for which neither the children nor the caregivers were informed or prepared. The experience of pain was significant, and often complex to manage. To increase families' resilience, the information provided by healthcare professionals needs to be broadened. Multidisciplinary teamwork is necessary to achieve this goal.

Children's own perspectives demonstrate the need to improve paediatric perioperative care.

AIM: To explore children's perspectives when facing anaesthesia and surgery. DESIGN: Interpretative qualitative design. METHODS: Children undergoing outpatient surgery were interviewed in three different phases, before and after anaesthesia and surgery (phase 1 and 2) and 1 month after the hospitalization (phase 3). Twenty-two children (4-15 years) were interviewed in phase 1 and 2 and six children (5-13 years) in phase 3. Data were analysed using manifest and latent qualitative content analysis. RESULTS: Two contrasting themes were identified: Fearful in association with anaesthesia and surgery and Confident in association with anaesthesia and surgery. Comprehension of the perioperative procedures, continuous information and interaction with the healthcare providers were decisive factors for children's expressions of confidence or fearfulness. Events considered as major from a healthcare perspective may be of no importance to the child, while events considered as less important by healthcare providers may be significant to the child. Understanding children's perspectives and awareness of their need to process the information provided are significant factors for establishment of trust and confidence in a highly technological perioperative environment.

Children's Use of and Experiences With a Web-Based Perioperative Preparation Program: Directed Content Analysis.

BACKGROUND: Web-based technology is useful as an alternative means of providing preparation programs to children in pediatric care. To take full advantage of Web-based technology, there is a need to understand how children use and learn from such programs. OBJECTIVE: The objective of this study was to analyze children's use of and experiences with a Web-based perioperative preparation program in relation to an educational framework of children's learning. METHODS: This study is the final part of a three-phase study in which all families with children aged 3 to 16 years (N=32) admitted for outpatient surgery over 1 week were asked to participate. Children were interviewed before (phase 1) and after (phase 2) anesthesia and surgery and 1 month after hospitalization (phase 3). The data in this study (phase 3) relate to six children (5 to 13 years) who participated in the follow-up interviews in their homes a month after hospitalization. The study used a directed qualitative interpretative approach. The interviews were conducted in a semistructured manner as the children-without guidance or influence from the interviewer-visited and navigated the actual website. The data were analyzed based on a combination of the transcribed interviews and field notes, and were subjected to a previous theoretical investigation based on children's learning on a website in pediatric care. RESULTS: Six children, five boys (5-12 years) and one girl (13 years), participated in the follow-up study in their homes a month after hospitalization. The children were selected from the 22 initially interviewed (in phases 1 and 2) to represent a variation of ages and perioperative experiences. The children's use of and experiences with the website could be explained by the predetermined educational themes (in charge of my learning, discover and play, recognize and identify, and getting feedback), but additional aspects associated with children's need for identification, recognition, and feedback were also revealed. The children used the website to get feedback on their own experiences and to interact with and learn from other children. CONCLUSIONS: This analysis of children's use of and experiences with a Web-based preparation program emphasizes the importance of including a theoretical educational framework of children's learning in the development and design of websites in pediatric care. Creating opportunities for Web-based communication with others facing similar experiences and possibilities for receiving feedback from adults are important factors for future consideration.

Web-Based Learning for Children in Pediatric Care: Qualitative Study Assessing Educational Challenges.

BACKGROUND: Hospitalization is a significant and stressful experience for children, which may have both short-term and long-term negative consequences. Anaesthesia-Web is a Web-based preparation program that has been well received and is being used worldwide to reduce stressful experiences, increase understanding, and exchange information in pediatric care. A deeper theoretical and educational understanding encompassing children's learning processes on Anaesthesia-Web may optimize and support the development and design of similar websites for children in pediatric care. OBJECTIVE: The objective of this study was to elucidate key educational principles in the development and design of websites for children in pediatric care. METHODS: A directed qualitative content analysis was applied to analyze the content and design of Anaesthesia-Web from a theoretical and educational perspective. preunderstanding, motivation, learning processes, and learning outcome were used to analyze the learning possibilities of Anaesthesia-Web for children prior to contact with pediatric care. RESULTS: We found 4 themes characterizing children's learning opportunities on Anaesthesia-Web in the analysis: "In charge of my learning"; "Discover and play"; "Recognize and identify"; and "Getting feedback". The analysis showed that Anaesthesia-Web offers children control and enables the use of the website based on interest and ability. This is important in terms of motivation and each child's individual preunderstanding. Through discovery and play, children can receive, process, and apply the information on Anaesthesia-Web cognitively, emotionally, and by active participation. Play stimulates motivation and is very important in a child's learning process. When facing pediatric care, children need to develop trust and feel safe so that they can focus on learning. On Anaesthesia-Web, children can recognize situations and feelings and can find someone with whom to identify. Several features on the website promote feedback, which is necessary to judge learning achievements, confirm understanding, and embody the need for repetition. CONCLUSIONS: Web-based preparation programs are important learning resources in pediatric care. Content and design needs to change from simply providing information to embracing the importance of a child's need to process information to learn and fully understand. By developing Web-based preparation programs that include educational principles, Web-based technology can be used to its fullest advantage as a learning resource for children. The 4 educational themes described in this study should help future similar website developments within pediatric care.

Interactive web-based format vs conventional brochure material for information transfer to children and parents: a randomized controlled trial regarding preoperative information.

BACKGROUND: Information transfer to patients is an integral part of modern medicine. Internet-based alternatives represent a new and attractive way for information transfer. METHODS: The study used a prospective observer-blinded design. Children (3-12 years) and parents were instructed to get further preoperative information either through an interactive web-based platform, the Anaesthesia-Web, or conventional brochure material until day of outpatient surgery. On the day of surgery, children and parents were separately asked six different questions. The primary end-point was to compare the total question score in children between the two information options (maximum score = 36). Secondary aims were the total question score for parents and the influence of age, sex, and time between the preoperative visit and day of surgery. RESULTS: A total of 125 children were recruited, of which 103 were included in the final analysis (the Anaesthesia-Web group, n = 49; the brochure material group, n = 54). At the predetermined interim analysis, the total question score in children was found to be substantially higher in the Anaesthesia-Web group than in the brochure material group (median score: 27; IQR: 16.5-33 and median score: 19.5; IQR: 11.25-27.75, respectively, P = 0.0076). The median difference in score was 6; 95% CI: 0-9. The total question score in parents was also higher in the Anaesthesia-Web group than in the brochure material group. Increasing child age was associated with a higher total question score in both groups. Sex did not influence the total question score in the Anaesthesia-Web group, whereas girls scored better than boys in the brochure material group. CONCLUSIONS: Children in the age range 3-12 years of age as well as their parents do better attain preoperative information from an interactive web-based platform compared to conventional brochure material.