Peer-reviewed article
Mothers' experiences of care pathways for children with speech and developmental concerns in Germany: A qualitative study of navigation, transitions, and communication.
Rupp S, Schwendemann H ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study examined how mothers in Germany navigate support systems for children with speech, communication, or developmental concerns. Eight mothers were interviewed about their experiences accessing services, from first recognizing problems through receiving support. The research identified key challenges including fragmented interfaces between institutions, complex navigation and coordination demands, and variable communication quality. Mothers experienced emotional distress when services were unresponsive or unclear, but felt supported when there was good coordination and clear communication across different agencies.
Key points
- Mothers identified recurring decision points: first signs of concern observed by parents or caregivers, diagnostic assessment as an ambivalent turning point, and school transitions as coordination-intensive phases
- High demands related to navigation and organisation, including scheduling appointments, completing applications, and seeking information across multiple systems
- Fragmented interfaces between institutions and professions created burdens; clear communication and improved coordination were identified as essential needs
- Resources such as social networks, insurance status, and language accessibility shaped both access to services and the burden experienced by families
- Emotional distress appeared particularly in situations of limited responsiveness or uncertainty; relief was associated with experiences of support and restored capacity to act
Limitations
The study included only eight mothers and no fathers or other caregivers, limiting generalisability about parental experiences across different family structures. The research does not measure outcomes for the children themselves or evaluate the effectiveness of any specific intervention model.
Abstract
Mothers of children with speech, communication, or developmental concerns in Germany may experience complex pathways through a support system marked by multiple institutional interfaces. This qualitative interview study examined how mothers experience the care and support pathway from the first signs of concern to the uptake or coordination of support services, and which conditions they describe as burdensome or relieving. It constitutes the interview component of the mixed-methods project "EGUBE - Eltern gut begleitet?". Eight semi-structured interviews from the ethically approved main study were included. Recruitment was open to parents and caregivers with parental responsibility irrespective of gender; however, the realised interview sample consisted exclusively of mothers. Interviews were conducted predominantly via videoconference, with one interview conducted by telephone; the children were school-aged or adolescents at the time of interview. Prior pilot interviews served only to refine the interview materials and were not included in the present analysis. Data were analysed using qualitative content analysis informed by Kuckartz and Rädiker, combining deductive and inductive elements. The broader health literacy perspective sensitised the analysis to questions of orientation, comprehensibility, navigation, coordination, communication, and organisational demands, while categories and subcategories were refined in close engagement with the interview material. A documented codebook and a case-by-category matrix supported transparent cross-case analysis. The findings reconstruct recurring nodal points along the pathway: first signs of concern, marked by mothers' observations and/or feedback from daycare or kindergarten; diagnostic assessment as an ambivalent turning point, sometimes experienced as "too early" or only weakly clarifying, but at other times as providing orientation when a problem was named or classified; high demands related to navigation and organisation, including appointments, applications, and information-seeking; fragmented interfaces between institutions and professions; and transitions-especially into school-as coordination-intensive phases. Communication was described as central to orientation, ranging from supportive explanations to experiences of devaluing attributions. Resources such as social networks, insurance status, and language- or translation-related accessibility were identified as factors shaping both access and burden. Explicit markers of emotional distress appeared particularly in situations of limited responsiveness, attribution, or uncertainty, whereas relief was associated with experiences of fit, support, and restored capacity to act. These findings point to functional requirements for supportive structures, including reliable orientation and navigation support, clear and structured communication, and improved coordination across institutional interfaces, without presupposing the effectiveness of any specific model.