Perceptions of transition al care needs and experiences in paediatric heart transplantation: An exploratory study.

Purpose: Survival following paediatric transplantation (PTx) continues to improve. The transfer of care to adult centres is becoming a pivotal stage in the ongoing medical management. Published data supports enhanced outcomes for adolescent patients with increased attention to transitional care. The purpose of this qualitative study was to identify themes in the “transition experience” of paediatric heart transplant (PHTx) families. Methods and Materials: All teens (12-18y) and parents at a single centre (n 22) were invited to participate in a combination of semistructured interviews and questionnaires. Qualitative methodology was used to build theoretical knowledge. Phenomenological methodology guided the data collection and analysis. Results: Seventeen patients (10 males) were 15.7 1.7y (11.7-17.8y) old and 3.8 2.8y (4m-9y) post-Tx at the time of study participation (3 pending completion, 2 refusals). Important themes identified amongst the PHTx patients included: 1) a decided disinterest and apathy toward the transition to adult care, 2) a lack of consideration of this transition prior to the study, and 3) limited self-knowledge about their health care plan. Conversely, parental themes (n 17) included: 1) significant anxiety regarding their child’s eventual departure from the PTx centre, 2) perceived differences in paediatric vs adult care, and 3) specific strategies described as helpful in facilitating the transition such as collaboration between adult and PTx practitioners, and ideal age for preparation and ultimate transition. Conclusions: Adolescent PHTx recipients are disinterested in the transition process and lack knowledge regarding their health care plan. Parents, however, have significant anxiety about the transition process and perceive differences between paediatric and adult care. Strategies to engage teens in the transition process are needed. Close collaboration between paediatric and adult Tx practitioners and PHTx families is indicated, as is accurate information regarding successful transition.