gms | German Medical Science

Background: In Germany, over 4 million people are affected by a rare disease (RD) [1]. A disease is considered rare if it affects 5 people or fewer out of 10,000 [1]. The majority of RDs are genetic [1], and for most RDs, there are no causal treatment options [2], which usually leads to complex care needs. Approximately 70–80% of RD occur in childhood [1]. The parents or caregivers are responsible for the day-to-day care of the child, as well as the organisation and coordination of care services [3]. The care of severely ill children requires coordination with a number of different stakeholders e.g., nursing care, additional therapeutic support (such as occupational therapy and speech therapy), child and youth welfare services or integration support [3].

Given the limited resources and high demands in care, it is necessary to establish care coordination services and involve those affected in care planning. This will relieve patients and their caregivers of the task of managing the disease and care, and address gaps in care.

Objective: The aim of the research project is to explore relevant factors influencing care coordination for pediatric patients with a RD. In a second step, the findings will be integrated in a taxonomy of care coordination developed by Walton et al. [4].

Methods: To investigate factors influencing care coordination, interviews with parents (n=8–10) of children with a RD and with adolescents (n=8–10) with a RD are conducted. To assess the perspective of stakeholders (n=18–24), interviews are conducted using a semi-structured interview guide. The sample is selected according to the principle of maximum variation sampling, a strategy of purposive sampling.

The qualitative data material is analysed using Braun and Clarke's thematic analysis, which, in addition to a descriptive and structuring approach, also enables an interpretative view of the data material so that correlations, patterns and influencing factors can be identified. The findings of the thematic analysis are integrated into the taxonomy for care coordination developed by Walton and colleagues and will be adapted where necessary.

Results: We will present the preliminary results of the qualitative interviews with parents and adolescents, describing their experience with care coordination and essential stakeholders, target groups, areas of concern and factors influencing care coordination in pediatric patients with RD from parent and patient perspective.

Implication for research and/or (healthcare) practice: The aim of the project is to map the complexity of care coordination and thus identify parameters for change and possible targets and stakeholders for intervention.

Funding: DFG-Nachwuchsakademie Versorgungsforschung; Project name: Koordination der Versorgung von Kindern und Jugendlichen mit Seltenen Erkrankungen – Identifikation von Einflussfaktoren und Konzeptprüfung; Grant number: 533558891