Postgraduate nursing students' experiences with simulation-based learning in palliative care education: A qualitative study.

AIM: The aim of this study was to explore postgraduate palliative care nursing students' experiences with simulation-based learning focusing on communication skills, as a learning method in palliative care education. BACKGROUND: Communication is one of several important competencies in palliative care and found to be challenging. Developing appropriate communication skills in palliative care requires education and practice. To provide postgraduate palliative care nursing students with the required knowledge and experience, practical and active learning approaches, such as simulation-based learning, can be applied. Several studies have explored undergraduate nursing students' experiences with simulation-based learning in palliative care. However, to our knowledge no studies have explored postgraduate palliative care nursing students` experiences with simulation-based learning focusing on communication skills in palliative care education. DESIGN: An exploratory descriptive design. METHODS: A qualitative method was employed. Three focus group interviews were conducted in May 2022 using videoconferencing (Zoom) with 11 postgraduate palliative care nursing students, eight of whom wrote reflective notes. Data were analysed using systematic text condensation. RESULTS: Three categories were identified in the data analysis: 1) from uncertain expectations to the real experience of simulation-based learning; 2) being a skilled professional in everyday life versus being observed in the scenarios; and 3) the balance between self-confidence and challenges in experiencing professional development and mastery. CONCLUSIONS: Postgraduate palliative care nursing students seemed to experience anxiety towards simulation-based learning in palliative care education, as well as variable expectations for the approach. This could be due to their unfamiliarity with the learning method. The need for repetition was underlined and the students indicated that they would like to be able to participate in several simulation sessions to familiarise themselves with the approach. The contrast between being a skilled professional in everyday life and the pressure of being observed and judged in the scenarios was an important finding. Students outlined the desire to feel safe, but also highlighted the importance of being challenged to experience professional development and enhanced mastery. Generally, the findings indicate that academic and psychological safety should be a focus during simulation-based learning and instructors should understand that students may have varied learning strategies, divergent learning experiences and shifting beliefs in their own competencies.

Simulation-based learning in palliative care in postgraduate nursing education: a scoping review.

BACKGROUND: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education. METHODS: The aim of this scoping review was to systematically map published studies on the use of SBL in palliative care in postgraduate nursing education. A scoping review was conducted using Arksey and O'Malley's (Int J Soc Res Meth 8(1):19-32, 2005) methodological framework. A systematic and comprehensive search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Education Resources Information Center (ERIC), Ovid MEDLINE, Ovid EMBASE, Allied and Complementary Medicine and PsycINFO was performed for studies published between January 2000 and April 2022. Two authors independently assessed papers for inclusion and extracted data. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The protocol was registered on the Open Science Framework. RESULTS: This review includes 10 studies. Three thematic groupings were identified: enhanced understanding of the importance of teamwork, interdisciplinarity and interpersonal skills; preparedness and confidence in one's ability to communicate during emotionally challenging situations; and impact and relevance to one's own clinical practice. CONCLUSIONS: The use of SBL in palliative care in postgraduate nursing education seems to enhance students' understanding of the importance of teamwork and interdisciplinarity. The review shows contradictory results regarding whether SBL in palliative care increases students' confidence in their communication skills. Postgraduate nursing students experienced personal growth after participating in SBL. Because our findings indicate that limited research has been conducted within this field, future research should (1) explore postgraduate nursing students' experiences with SBL in palliative care with a focus on more practical content such as symptom management, (2) examine the relevance and application of SBL in clinical practice, and (3) be reported in line with recommendations on the reporting of simulation research.

The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON'T RETARD project.

OBJECTIVE: To investigate the clinical impact of a brief transition programme for young people with JIA. METHODS: The Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders (DON'T RETARD) project is a mixed method project in which we first conducted a quasi-experimental study employing a one-group pre-test-post-test with a non-equivalent post-test-only comparison group design. In this quantitative study, we investigated clinical outcomes in patients with JIA and their parents who participated in the transition programme (longitudinal analyses). The post-test scores of this intervention group were compared with those of patients who received usual care (comparative analyses). Second, a qualitative study was conducted to explore the experiences of adolescents with JIA and their parents regarding their participation in the transition programme. RESULTS: The primary hypothesis of improved physical (effect size 0.11), psychosocial (effect size 0.46) and rheumatic-specific health status (effect size ranging from 0.21 to 0.33), was confirmed. With respect to the secondary outcomes, improved quality of life (effect size 0.51) and an optimized parenting climate (effect size ranging from 0.21 to 0.28) were observed. No effect was measured in medication adherence (odds ratio 1.46). CONCLUSION: Implementation of a transition programme as a brief intervention can improve the perceived health and quality of life of adolescents with JIA during the transition process, as well as the parenting behaviours of their parents. Based on the present study, a randomized controlled trial can be designed to evaluate the effectiveness of the transition programme.

Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project.

OBJECTIVES: To describe (1) the content of a transition programme for young people with juvenile idiopathic arthritis (JIA) designed as a brief intervention, (2) the rationale and design of a mixed-methods study evaluating the clinical impact of this transition programme and (3) to provide baseline data of the intervention group. DESIGN: An 'embedded experimental' design is used for the evaluation of the transition programme. A 'one-group pretest-posttest, with a non-equivalent posttest-only comparison group design' is used to quantitatively evaluate the impact of the transition programme, applying both longitudinal and comparative analyses. Subsequently, experiences of adolescents and their parents who participated in the experimental group will be analysed qualitatively using content analysis. SETTING: Participants in the intervention are recruited at a tertiary care centre in Belgium. The comparison group participants are recruited from one tertiary and three secondary care centres in Belgium. PARTICIPANTS: The intervention group consists of 33 young people (25 females; 8 males) with a median age of 16 years. Main diagnoses are persistent or extended oligoarticular JIA (33%), polyarticular JIA (30%), enthesitis-related JIA (21%) or systemic arthritis (15%). INTERVENTION: The transition programme comprises eight key components: (1) transition coordinator; (2) providing information and education; (3) availability by telephone; (4) information about and contact with an adult care programme; (5) guidance of parents; (6) meeting with peers; (7) transfer plan; and (8) actual transfer to adult care. PRIMARY AND SECONDARY OUTCOMES: The primary outcome is health status, as perceived by the adolescents. Secondary outcomes are health status, as perceived by the parents; medication adherence; illness-related knowledge; quality of life; fatigue; promotion of independence; support of autonomy; behavioural control and psychological control. RESULTS: At baseline, the median score was 69.2 (Q1=60.0;Q3=92.9) on psychosocial health and 68.8 (Q1=56.3; Q3=89.1) on physical health. Rheumatic-specific health scores ranged from 62.5 to 100. CONCLUSIONS: We present the rationale and design of a study intended to evaluate a transition programme for adolescents with JIA as a brief intervention.

Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis.

Adolescents with juvenile idiopathic arthritis (JIA) are transferred from paediatrics to adult-oriented healthcare when they reach early adulthood. Research on the extent to which patients' expectations about the adult healthcare setting match their actual experience after transfer, may promote successful transfer from paediatrics to adult care. As part of the 'Don't Retard' project ( http://www.kuleuven.be/switch2/rheuma.html ), experiences and expectations of young adults regarding their transfer from paediatric rheumatology to adult rheumatology were explored. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18 to 30. Data were analysed using procedures inherent to the content analysis approach. For both concepts, experiences and expectations, three main themes emerged: 'preparation', 'parental involvement' and an 'adapted setting for the late-adolescent or early adult'. The need for a gradual process covered the themes 'preparation' and 'parental involvement'. Young people with JIA prefer to have a say in the moment of transfer and in the reduction of parental involvement. The majority of the participants like their parents' presence at the first consultation at the adult rheumatology department. They expect a healthcare setting adapted to their needs and the possibility to meet peers in this setting. Sudden confrontation with older patients with severe rheumatoid arthritis at adult rheumatology was an unsettling experience for some of the young patients and they declared that better preparation is needed. This study enabled us to define three main themes important in transfer. These themes can facilitate healthcare professionals in developing specific interventions to prepare the young people to transfer, to regulate parental involvement and to arrange an adapted setting for them. Since we included patients who were in follow-up at one tertiary care centre, in which both paediatric and adult rheumatology care are located, the results of the study cannot be generalised to the entire population of patients with JIA.

Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare.

We explored the attitudes of rheumatology practitioners toward the transition and transfer of adolescents with a rheumatic disorder from pediatric to adult healthcare. Rheumatology practitioners attending the Pediatric Rheumatology European Society (PRES) Congress in 2010 were asked to complete the Questionnaire about Attitudes of Rheumatology Practitioners Toward Transfer and Transition (QUARTT), an instrument that was specifically devised for this study. Overall, 138 healthcare professionals participated (response rate, 55.2%). Participants believed that when patients with an active rheumatic disorder reach adulthood, they should receive medical follow-up from an adult rheumatologist (87%). Only 19% thought that patients should remain under the surveillance of a pediatric rheumatologist. Several initiating factors for transfer were marked as important: readiness of the patient according to the caregiver (62%), age (61%), and psychosocial maturity (49%). A transfer meeting with the patient (76%), a referral letter (73%), and a medical transfer file (64%) were the most preferred transfer communication methods. Joint outpatient clinics, phone calls, and transfer meetings without the patient were considered to be less useful. Pediatric (94%) or adult (83%) rheumatologists, parents (81%), and nurse specialists (74%) were stated as the most important active participants in the transition process. Responders favored essential transition components because young people should be assisted on how to become independent (96%), how to deal with fatigue (91%), and how to establish medication adherence (90%). In conclusion, this study emphasized the importance of transfer to specialized rheumatology care of adolescents with an active rheumatic disease and highlighted transfer initiators and transfer communication tools.

Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: an analysis of transfer destinations.

OBJECTIVES: The transfer of adolescents with congenital heart disease from pediatric to adult care was examined. The aims were to investigate where these adolescents received adult-centered care, to determine the proportion of patients with no follow-up and with no appropriate follow-up after leaving pediatric cardiology, and to explore the determinants of no follow-up and no appropriate follow-up. BACKGROUND: Even after successful treatment, many patients require lifelong cardiac surveillance by specialized practitioners. Although guidelines describe the most appropriate level of follow-up, this is not always implemented in practice. METHODS: A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. RESULTS: Overall, 58 of the 794 patients included (7.3%) were not in follow-up. Cessation of follow-up was found in 2 of 74 patients with complex (2.7%), 31 of 448 patients with moderate (6.9%), and 25 of 272 patients with simple (9.2%) heart defects. Moreover, 684 patients (86.1%) remained in specialized follow-up. According to international guidelines, 81 patients (10.2%) did not receive the minimal level of cardiac care. Multivariable logistic regression revealed that male sex and no prior heart surgery were associated with no follow-up. Male sex, no prior heart surgery, and greater complexity of congenital heart disease were associated with no appropriate level of cardiac follow-up. CONCLUSIONS: The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.

What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients.

We investigated what it means to patients with juvenile idiopathic arthritis (JIA) to grow up with this disease. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18-30 years. Interviews were tape recorded and transcribed verbatim. Data were analysed using procedures inherent to the grounded theory approach. Five main themes emerged: physical impact, medication, relationships and family, friends, and perceptions of their future. The physical impact of JIA involved functional limitations, pain, and fatigue. Taking medication properly was difficult; side effects were seen as a problem. With regard to relationships and family, JIA affected the subjects in their roles as family members and affected intimate relationships, pregnancy, and raising children. Indeed, the majority of the patients were afraid to become pregnant or to have children. Most patients found friends who understand their situation and who are a big support. Some patients were afraid of what the future would bring. A better understanding of the psychosocial needs of adolescents with JIA and getting insight into what it means to grow up with this condition will assist healthcare professionals to target interventions that are timely and effective in transitional care to adulthood.

Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe.

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.

Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program.

PURPOSE: To investigate the expectations and experiences of adolescents on transferring from a pediatric cardiology program to an adult congenital heart disease program. METHODS: A qualitative, phenomenologic study was conducted, in which semi-structured, in-depth interviews were performed with 14 adolescents (aged 15-17 years) with congenital heart disease. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using procedures described by Colaizzi. RESULTS: The study identified six themes that characterized adolescents' views of the transfer process: leaving pediatric cardiology was viewed as normal; leaving behind familiar surroundings; a positive wait-and-see attitude toward the adult congenital heart disease program; adjusting to a new environment; a need for better information; and a shift in roles between the adolescent and his parents. CONCLUSION: Although adolescents with congenital heart disease have a positive attitude toward transferring to an adult congenital heart disease program, they identified aspects of the transfer that healthcare professionals need to address. Patients and their families should be prepared for the transfer by informing them about the adult program and its healthcare providers. A formal transition program can play a role in this respect.

Implementation of transition programs can prevent another lost generation of patients with congenital heart disease.

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.