BackgroundChildren with medical complexity (CMC) require long-term care accompanied by different health- and social care professionals. Depending on the severity of the chronic condition, caregivers spend a lot of time coordinating appointments, communicating between providers, clarifying social legal issues, and more. Effective care coordination is seen as key to addressing the fragmented care that CMC and their families often face. Spinal muscular atrophy (SMA) is a rare genetic, neuromuscular disease which care involves drug therapy and supportive treatment. We examined the care coordination experiences through a qualitative interview analysis of n = 21 interviews with caregivers of children with SMA I or SMA II.ResultsThe code system consists of 7 codes and 12 sub-codes. “Disease and coordination management of the caregivers” describes the management of coordination-related illness demands. “General conditions of care” include enduring organizational aspects of the care network. “Expertise and skills” refers to both parent and professional expertise. “Coordination structure” describes the assessment of existing coordination mechanisms as well as the need for new ones. “Information exchange” defines the information exchange between professionals and parents as well as the exchange of parents among themselves and the perceived exchange between professionals. “Role distribution in care coordination” summarizes parents' “distribution” of coordinative roles among care network actors (including their own). “Quality of relationship” describes the perceived quality of the relationship between professionals and family.ConclusionCare coordination is influenced peripherally (e.g., by general conditions of care) and directly (e.g., by coordination mechanisms, interaction in the care network). Access to care coordination appears to be dependent on family circumstances, geographic location, and institutional affiliation. Previous coordination mechanisms were often unstructured and informal. Care coordination is frequently in the hands of caregivers mainly as the care network’s interface. Coordination is necessary and must be addressed on an individual basis of existing resources and family barriers. Existing coordination mechanisms in the context of other chronic conditions could also work for SMA. Regular assessments, centralized shared care pathways, and staff training and empowerment of families for self-management should be central components of all coordination models.Trial registration: German Clinical Trials Register (DRKS): DRKS00018778; Trial registration date 05. December 2019—Retrospectively registered;https://apps.who.int/trialsearch/Trial2.aspx?TrialID=DRKS00018778.Supplementary InformationThe online version contains supplementary material available at 10.1186/s13023-023-02739-w.