A Qualitative Analysis of Barriers to Primary Care for Prevention of Critical Illness in Children

Introduction: Pediatric critical illness is associated with long-term sequelae in survivors and families. In a complementary study we report associations between low primary care provider (PCP) utilization and pediatric intensive care unit (PICU) admissions. The aim of this qualitative study was to identify themes describing barriers to PCP care in PICU patients with low PCP utilization.


Methods: We developed a grounded-theory qualitative study with semi-structured interviews of local PCPs and caregivers of patients admitted to the PICU. We screened patients to prospectively identify those seen at our affiliated PCP office and excluded those with prolonged NICU stays, foster care status, and post-operative admission. Families were approached for participation if the patient had completed < 50% of recommended well-child checks (WCC) in the 5 years prior to admission. We conducted interviews with caregivers and providers, recorded, and transcribed for thematic analysis completed by two coders. Following independent review of transcripts, we reviewed and resolved intercoder dependence to form final themes.


Results: A total of 52 PICU admissions screened positive as patients seen at our affiliated PCP office. Of these, 13 (25%) visits, representing 10 unique patients, met criteria of completion of < 50% of WCC in the 5 years prior to admission, of which 5 (50%) were excluded. Of these, we completed three caregiver interviews. Themes include: healthcare perceptions (“When a new doctor comes in, it's like telling the story all over again… it's overwhelming.”), socioeconomic influences (“[Patient] is the last of seven kids. Then it's just [mom].”), scheduling constraints, and public/private resources (“That's been an issue with keeping these appointments, the transportation issue.”). Additionally, 6 PCPs were approached for inclusion, and we completed three interviews. Themes include: resource instability, health prevention, illness triage, missed appointments and healthcare barriers.


Conclusions: Through six initial interviews, we identify themes of barriers to PCP care among PICU patient caregivers and PCPs. Themes were discordant among groups, which may offer new goals for PCP offices to improve appointment attendance. Data collection is ongoing among both caregivers and providers to reach thematic saturation.