Table 2.
Major themes and subthemes
| Theme | Subthemes | Prevalence (n/27 interviews) |
|---|---|---|
| Diagnostic Delays and Uncertainty |
·Prolonged multi-site referrals and testing · Delayed or inconclusive results · Prolonged diagnostic and emotional uncertainty |
25 (93%) |
| Systemic and Access Barriers |
· Geographic and logistical barriers to care · Service centralization and limited capacity · Lack of supportive services |
27 (100%) |
| Socioeconomic Hardships |
· Direct costs (transport, medications, tests) · Indirect costs (lost income, impact on siblings) · Cycle of poverty exacerbation |
27 (100%) |
| Sociocultural Stigma and Isolation |
· Supernatural and blame attributions · Provider communication challenges · Social exclusion and concealment |
17 (63%) |
| Resilience, Hope, and Adaptive Coping |
· Parental commitment and proactive efforts · Sources of hope · Appreciation for compassionate, specialized care |
26 (96%) |
| Visions for Improved Service Delivery |
· Community education or advocacy · Financial or structural supports · Technological integration · Enhanced provider empathy and training |
27 (100%) |