OBJECTIVE

To describe hardships experienced by families of children with medical complexity (CMC) and compare them with those experienced by families of children with asthma.

STUDY DESIGN

We assessed hardships in a cohort of 167 families of CMC. Surveys assessed sociodemographics and hardships (eg, financial: inability to pay bills; social: limited help from family/friends). CMC cohort hardships were compared with those of an established cohort of children hospitalized with asthma using multivariable logistic regression.

RESULTS

CMC had diagnoses in a median of 5 different complex chronic condition categories (most common neurologic/neuromuscular), and the majority (74%) were dependent on technology. Over 80% of families of CMC reported experiencing ≥1 hardship; 68% with financial and 46% with social hardship. Despite higher socioeconomic status than families with asthma, families of CMC often experienced more hardships. For example, families of CMC were significantly more likely to report failure to pay rent/mortgage (aOR 2.6, 95% CI 1.6, 4.3) and the expectation of little to no help from family/friends (aOR 2.9, 95% CI 1.9, 4.7).

CONCLUSIONS

Families of CMC frequently report financial and social hardships, often at rates higher than families with asthma who were generally of lower socioeconomic status. Identifying and acting upon hardships may be an important addition to the care of CMC.