Nurses’ perceptions regarding transitional care for adolescents and young adults with childhood‐onset chronic diseases

Abstract

AimNurses are expected to have a role in the transition of care from pediatric to adult medical practices for adolescents and young adults with childhood‐onset chronic diseases. This study compares the experience, knowledge, and perceptions regarding the ideal care among adult unit and pediatric nurses regarding the transition to adult care for those with childhood‐onset chronic diseases.MethodsA cross‐sectional study using self‐report questionnaires was conducted with nurses in a tertiary hospital in Tokyo. Questions were generated based on a literature review and expert discussion. Data from 1,064 participants were analyzed (adult unit nurses: n = 959, 90.1%; pediatric nurses: n = 105, 9.9%).ResultsAmong 623 adult unit nurses who had care experience for adult patients with a childhood‐onset chronic disease, 458 nurses (73.6%) were unaware of the concept of transitional care. As the obstructive factors for transition, pediatric nurses recognized problems in healthcare providers' attitudes and lack of transitional care coordinators, while the adult unit nurses emphasized the patients' wishes to continue to receive pediatric healthcare. Most adult unit nurses expected pediatric nurses to function as transitional care coordinators.ConclusionAdult unit and pediatric nurses had different perceptions of the barriers in transitioning children with chronic diseases to adult care. It is important to have educational programs focusing on transitional care for all nurses, both to enable pediatric nurses to improve transition readiness of children with chronic diseases and to offer adult patients with a childhood‐onset chronic disease continuing support through adult unit nurses.

Parents’ views on and need for an intervention during their chronically ill child’s transfer to adult care

“…These preconceptions give rise to an important question: Why do parents have these beliefs? An explanation could be that the paediatric staffs’ sparse knowledge of ,for example, workflows and challenges in adult care, may impact their attitudes and introduction to adult care and thereby posing a barrier to a successful transfer (Gray et al, 2015; Suzuki et al, 2020; Aldiss et al, 2019; O'Sullivan-Oliveira et al, 2014). Another explanation could be that some parents have a strong attachment to the paediatric department and are reluctant to leave (Wright et al, 2017; Fredericks et al, 2011).…”

Prevalence and barriers to health care transition for adolescent patients with childhood-onset chronic diseases across Japan: A nation-wide cross-sectional survey

“…(3) Contents of the HCT program based on the Six Core Elements (10): establishing the transition policy; tracking and monitoring transition progress; assessing the patient's readiness for transition; developing the transition plan with a medical summary; transferring the patient; completing the transfer and following up with the patient and family. (4) Barriers to transition from pediatric to adult care (13,18,19,(23)(24)(25)(26)(27)(28)(29)(30)(31)(32): based on 11 items for patients, nine for family members, and 14 for health care providers, the survey respondents' self-reported factors hindering the transition to adult care. A 4-point Likert scale was used for each item with the following response options: not at all applicable, not very applicable, fairly applicable, and very applicable.…”

“…In Japan, the high dependence of patients and families on pediatrics, lack of awareness among health care professionals, and anxiety and distrust of adult medicine have been noted ( 25 ). In addition, although there have been recent health care provider surveys of general pediatric nurses and adult nurses ( 26 ), there is no updated national survey on transition barriers among health care providers who are central to transitional care in Japan. Therefore, we believe that there is an urgent need to understand the actual status of transitional care and investigate barriers to transition nationwide so that all patients with childhood-onset chronic diseases can smoothly transition to adult health care systems and receive appropriate medical care.…”

The process of becoming independent while balancing health management and social life in adolescent and young adult childhood cancer survivors

“…Dealing with patients in transition is one of the many roles of nurses (Meleis, 2010). However, attitudes toward transitional care for adolescents and young adults (AYAs) with CCDs differ somewhat between pediatric and adult care professionals (Sparud‐Lundin et al, 2017; Suzuki et al, 2020), and many Japanese adult unit nurses are unaware of transitional care (Suzuki et al, 2020). In Japan, the two key issues regarding support for pediatric patients with CCDs during the transition to adulthood are support for patient autonomy/independence, including understanding the disease and medical decision‐making, and the development of a medical system that includes adult medical departments and multidisciplinary collaboration (Ministry of Health, Labour and Welfare, 2017).…”