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To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial. Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16–17 years with moderate or complex congenital heart disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD. • Two-session nurse-led transition intervention for 16–17-year-olds • Mixed methods unobtrusive data analysis to understand intervention effectiveness • Four types of transition readiness from independent to at-risk to guide practice • Condition knowledge and transition readiness scores consistent with typology • MyHealth Passport, goal setting and role play key transition care elements. [ABSTRACT FROM AUTHOR]

Background: There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care.Objectives: The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care.Methods: A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire.Results: A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032).Conclusions: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332). [ABSTRACT FROM AUTHOR]

Objective: To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14 years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge.Study Design: Single-center cluster randomized controlled trial of a nurse-led transition intervention vs usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary end point was change in TRANSITION-Q (transition readiness) score between baseline and 6 months. The secondary end point was change in MyHeart score (CHD knowledge).Results: We randomized 60 participants to intervention (n = 30) or usual care (n = 30). TRANSITION-Q score (range 0-100) increased from 49 ± 10 at baseline to 54 ± 9.0 at 6 months (intervention) vs 47 ± 14 to 44 ± 14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6 months were greater in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, P = .01). MyHeart score (range 0-100) increased from 48 ± 24 at baseline to 71 ± 16 at 6 months (intervention) vs 54 ± 24 to 57 ± 22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6 months were greater in the intervention group (mean difference 19, 95% CI 12-26, P < .0001). Participants aged 14 years had a greater increase in TRANSITION-Q score at 6 months compared with 13-year-old participants (P < .05).Conclusions: A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings.Trial Registration: ClinicalTrials.gov: NCT02374892. [ABSTRACT FROM AUTHOR]

Background: Burn injury is one of the major traumas that a child can experience. Parents of burn-injured children experience anxiety, depression, guilt and post traumatic stress disorders as they care for their burn-injured children. Such empirical evidence related to effects of burns on parents and parenting process is unavailable from low and middle income countries like India. Objectives: The aim of the study was to discover the process of parenting burn-injured children in India. The objective of this paper is to present one of the substantive processes ''Enduring the Blame'' that emerged from the data. Design: Constructivist grounded theory methodology was used to explore the experiences of parenting burn-injured children. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Methods: Twenty-two semi structured individual or family interviews were conducted in Tamil over a period of one year. The interview started with an overview question and then was followed by trigger questions as the participants shared their experiences. Second interviews were conducted with three participants in three families for theoretical saturation purposes. Results: Mothers and fathers encountered blame from family members, health professionals, strangers, and their burn-injured children along the burn injury trajectory. They suffered double trauma of their child's burn and the blame. Parenting their burn-injured child involved a process of ''Enduring the Blame.'' Enduring the Blame included four stages: internalizing blame, submitting to blame, rising above blame, and avoiding blame. Conclusions: Encouraging and assisting parents in caring for their children instead of blaming is a vital component of paediatric burn care. Parents will benefit from ongoing assessment and psychological interventions that will provide emotional support. Studying the perceptions of health professionals and the burn-injured children will help in further clarification of blame related issues and developing a parenting theory. [ABSTRACT FROM AUTHOR]

The positive effect of supportive family environment on burn-injured child's long term outcome is well established. How parents provide this support as they recover with their children is not addressed especially in low and middle income countries where the burn burden is high. It is assumed that parents are non-compliant in bringing their children for follow up. Using grounded theory methodology this study aimed to explore and discover the process of parenting children in India with burn injury. Semi-structured interviews with 22 family members of 12 burn-injured children and field notes yielded rich data. The analysis by open and focused coding and constant comparisons of participants’ accounts revealed a parenting process of embracing survival. For parents embracing survival involved (1) suffering the trauma along with their burn-injured child, (2) sustaining the survival of their child, and (3) shielding the child from stigma related to scarring and disfigurement. Parents perceived minimal support from health professionals and family members. Mothers and fathers formed a team and did their best for their burn-injured children. Assessing and meeting the needs of the parents and empowering parents to provide effective long term care are vital components of burn care. The health professionals’ perceptive on parenting burn-injured children need to be explored. [Copyright &y& Elsevier]

Objectives: Advancing technology allows for successful treatment of children with life- threatening illnesses. Effectively assessing and optimally treating a child's distress during their stay in the Pediatric Intensive Care Unit (PICU) is paramount. Objective measures of distress in mechanically ventilated pediatric patients are increasingly available but few have been evaluated. The objectives of this systematic review were to identify available instruments appropriate for measuring physiological and behavioral cues of pain, non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated pediatric patients, and evaluate these instruments in terms of their psychometric properties. Design: A systematic review of original and validation reports of objective instruments to measure pain and non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated PICU patients was undertaken. Data sources: A comprehensive search was conducted in 10 databases from January 1970 to June 2011. Reference lists of relevant articles were reviewed to identify additional articles. Review methods: Studies were included in the review if they met pre-established eligibility criteria. Two independent reviewers reviewed studies for inclusion, assessed quality, and extracted data. Results: Twenty-five articles were included, identifying 15 instruments. The instruments had different foci including: assessing pain, non-pain related distress, and sedation (n = 2); assessing pain exclusively (n = 4); assessing sedation exclusively (n = 7), assessing sedation in mechanically ventilated muscle relaxed PICU patients (n = 1); and assessing delirium in mechanically ventilated PICU patients (n = 1). The Comfort Scale demonstrated the greatest clinical utility in the assessment of pain, non-pain related distress, and sedation in mechanically ventilated pediatric patients. Modified FLACC and the MAPS are more appropriate, however, for the assessment of procedural pain and other brief painful events. More work is required on instruments for the assessment of distress in mechanically ventilated muscle relaxed PICU patients, and the assessment of delirium in PICU patients. Conclusions: This review provides essential information to guide PICU clinicians in choosing instruments to assess pain, non-pain related distress, and adequacy of analgesia and sedation in mechanically ventilated pediatric patients. Effective knowledge translation is essential in the implementation, adoption, and successful use of these instruments. [ABSTRACT FROM AUTHOR]