Exploring the need for Transition Readiness Scales within cystic fibrosis services: A qualitative descriptive study.

To explore healthcare professionals' and patients' perceptions of the potential use of a Transition Readiness Scale in cystic fibrosis care. This included an examination of barriers and facilitators to its implementation along with the identification of key items to include in a Transition Readiness Scale. Due to increasing life expectancy and improved quality of life, more adolescents with cystic fibrosis are transitioning from paediatric to adult health care. To assess and correctly manage this transition, a more structured approach to transition is advocated. This can be achieved using a Transition Readiness Scale to potentially identify or target areas of care in which the adolescent may have poor knowledge. These key items include education, developmental readiness taking into account relationships, reproduction, future plans and self-management skills. Existing tools to gauge readiness concentrate mainly on education and self-care needs assessment as their key items. Currently, there is no specific cystic fibrosis Transition Readiness Scale in use in Ireland or internationally. The study used a descriptive qualitative design. Data were collected using semi-structured interviews (n = 8) and analysed using a thematic approach. The findings identified the potential benefits of this tool and second the resources which need to be in place before its development and implementation into cystic fibrosis services. Transition Readiness Scales have substantial relevance with cystic fibrosis services emphasising the importance of establishing the necessary resources prior to its implementation. These were identified as more staff, a dedicated private space and staff training and education. Significant resources are needed to fully integrate Transition Readiness Scales in practice. The study findings suggest multidisciplinary collaborations, and patient engagement is pivotal in planning and easing the transition process for adolescents with cystic fibrosis.

Bourke M ，Houghton C 《-》

Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals' experiences.

To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long-term conditions: diabetes, cystic fibrosis and congenital heart disease. Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet, limited empirical evidence exists regarding transition experiences. Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). Semi-structured interviews with AYAs aged 14-25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed-methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. Transfer occurred between the ages of 16-early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following-up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults' prerogative. The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. Nurses in collaboration with the multidisciplinary team can help AYAs develop their self-management skills and guide parents on how to relinquish responsibility gradually prior to transition.

Coyne I ，Sheehan A ，Heery E ，While AE ... -  《-》

Isolation, motivation and balance: living with type 1 or cystic fibrosis-related diabetes.

Tierney S ，Deaton C ，Webb K ，Jones A ，Dodd M ，McKenna D ，Rowe R ... -  《-》

How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?

To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider. The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed. Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably. Although increasing age predicts perception of self-care management, many youth age 18-22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth. Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.

Lapp V ，Chase SK 《-》

The Effect of Self-Efficacy, Social Support and Quality of Life on Readiness for Transition to Adult Care Among Adolescents with Cystic Fibrosis in Turkey.

The aim of this study is to examine the effects of self-efficacy, social support and quality of life on readiness for transition to adult care in adolescents with cystic fibrosis. A descriptive and cross-sectional study design was used. Data were collected from 50 adolescent between 14 and 17 years old with cystic fibrosis, by using The Transition Readiness Assessment Questionnaire, Social Support Appraisals Scale for Children, Self-Efficacy Questionnaire for Children and health-related quality-of-life instrument, the KIDSCREEN-10. A positive correlation was found between the readiness levels of adolescents for transition to adult care and self-efficacy levels. In path analysis, self-efficacy was found to have a significant effect on the level of readiness for transition to adult care. There was not statistically significant relationship between the level of readiness for transition to adult care and health-related quality of life and perceived social support. Path analysis revealed that health-related quality of life and perceived social support had significant effects on the self-efficacy levels of adolescents. Self-efficacy were associated with readiness for the transition to adult care. Although perceived social support and quality of life were not related with transition readiness these variables had significant effects on perceived self-efficacy, which was determined as a factor affecting the readiness for the transition to adult care. In adolescents with cystic fibrosis, self-efficacy, social support and quality of life levels should be taken into account when planning preparation programs for transition to adult care.

Torun T ，Çavuşoğlu H ，Doğru D ，Özçelik U ，Ademhan Tural D ... -  《-》