Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2016 May:172:187-193.e1.
doi: 10.1016/j.jpeds.2016.01.049. Epub 2016 Feb 17.

Financial and Social Hardships in Families of Children with Medical Complexity

Joanna Thomson  1 , Samir S Shah  2 , Jeffrey M Simmons  3 , Hadley S Sauers-Ford  4 , Stephanie Brunswick  4 , David Hall  5 , Robert S Kahn  6 , Andrew F Beck  7
Affiliations
Observational Study

Financial and Social Hardships in Families of Children with Medical Complexity

Joanna Thomson et al. J Pediatr. 2016 May.

Abstract

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.

PubMed Disclaimer

Figures

Figure
Figure
Recruitment diagram for patients and families enrolled in Children with Medical Complexity (CMC) cohort
See this image and copyright information in PMC

References

    1. Berry JG, Hall M, Hall DE, Kuo DZ, Cohen E, Agrawal R, et al. Inpatient growth and resource use in 28 children's hospitals: a longitudinal, multi-institutional study. JAMA pediatrics. 2013;167:170–7. - PMC - PubMed
    1. Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126:638–46. - PubMed
    1. Simon TD, Berry J, Feudtner C, Stone BL, Sheng X, Bratton SL, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126:647–55. - PMC - PubMed
    1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529–38. - PMC - PubMed
    1. Srivastava R, Stone BL, Murphy NA. Hospitalist care of the medically complex child. Pediatr Clin North Am. 2005;52:1165–87. - PubMed

Publication types