Experiences of adolescents with Cystic Fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults

Abstract

The relationship of the patient with their paediatric doctor, the doctor's attitude towards the transition and the delivery of age-appropriate care appeared to influence the experiences of adolescents as they changed to adult care. Successful elements of a transition programme, if it was offered, were the orientation tours, the provision of information and the presence of a familiar face at adult clinics. Transition experiences of individuals had potential effects on their psychological and physical well-being so that, in order to maximize quality of care, health professionals must be aware of factors which may improve transition experiences.

Key Elements for, and Indicators of, a Successful Transition: An International Delphi Study

“…Although an important part of transition is helping these youths reach their full potential [2] and should have a holistic approach to prepare them for adulthood [15,36] elements such as discussing with patient and family about education/work options were not unanimously considered as essential or very important. As youths with chronic illnesses achieve fewer milestones [37], are less likely to graduate from high school and more likely to receive public assistance and have lower income [38,39], this result is somehow surprising.…”

Patients' Perspective on Factors That Facilitate Transition From Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies

“…Patients have also voiced the fear that ACC providers would lack knowledge about early onset illnesses [22,23,28,31,35,36]. However, patients felt reassured when their CCC providers showed trust in the ACC providers to which they were referred [21]. Additional concerns included not knowing what to expect in ACC, not liking the ACC environment, not trusting ACC providers, and patients having to retell their story and ensuring that medical records would be transferred to ACC appropriately [28 -31,36 -39].…”

“…Across several studies, patients described CCC as a familiar and comfortable environment, and reported attachment and feelings of trust toward their health care providers [21][22][23][24][25][26][27][28][29][30][31][32]. Recent findings suggest that the main barrier patients faced after transition was to "detach themselves" from the pediatric team [33].…”

“…Before transfer, patients have stated that they would like to be the ones responsible for their health care by gaining a sense of control over their health [7,21,30,32,45], by acquiring skills pertaining to their health care (e.g., scheduling appointments), and skills needed for future employment opportunities [22,32]. Patients wanted to be able to talk to their doctor alone [10,32,41,42] and to be taken more seriously by their providers [31].…”

Transitioning From Pediatric to Adult Care

“…Pediatric providers worry about the quality of adult care services available to the patients (47)(48)(49). This concern translates to outcomes, as it appears that when pediatric providers express skepticism regarding access to quality care, it impedes transition (50). Pediatric providers' concerns regarding their patients' access to adult providers (51,52) and their concerns about their patients' access to funding and insurance coverage (52,53) also impact their participation in transition planning.…”