Modeling the social determinants of caregiver burden among families of children with developmental disabilities. 2011

Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
Harvard University School of Public Health, Boston, MA, USA. mcmanus2@wisc.edu

This study described predictors of caregiver burden among parents of children with developmental disabilities. The sample, obtained from the 2005-2006 National Survey of Children With Special Health Care Needs, included 12,225 children, aged 5 to 17 years, with a developmental disability. Structural equation modeling assessed the relationships between the factors of Caregiver Burden, Ease of Accessing and Navigating the Health Care System, and Unmet Health Care Needs. Caregiver burden was inversely associated with ease of accessing and navigating the health care system (β  =  -0.094, SE (β)  =  0.045) and positively associated with unmet health care needs (β  =  0.428, SE (β)  =  0.036). Parents of poor, minority, and uninsured children experienced significantly greater caregiver burden. Bolstering services, particularly for vulnerable families, may ameliorate caregiver burden.

UI MeSH Term Description Entries
D008297 Male Males
D008913 Minority Groups A subgroup having special characteristics within a larger group, often bound together by special ties which distinguish it from the larger group. Group, Minority,Groups, Minority,Minority Group
D008960 Models, Psychological Theoretical representations that simulate psychological processes and/or social processes. These include the use of mathematical equations, computers, and other electronic equipment. Model, Mental,Model, Psychological,Models, Mental,Models, Psychologic,Psychological Models,Mental Model,Mental Models,Model, Psychologic,Psychologic Model,Psychologic Models,Psychological Model
D011203 Poverty A situation in which the level of living of an individual, family, or group is below the standard of the community. It is often related to a specific income level. Federal Poverty Level,Federal Poverty Threshold,Indigency,Low-Income Population,Absolute Poverty,Extreme Poverty,Indigents,Low Income Population,Federal Poverty Levels,Indigent,Level, Federal Poverty,Low Income Populations,Low-Income Populations,Population, Low Income,Population, Low-Income,Poverty Level, Federal,Poverty Threshold, Federal,Poverty, Absolute,Poverty, Extreme
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002658 Developmental Disabilities Disorders in which there is a delay in development based on that expected for a given age level or stage of development. These impairments or disabilities originate before age 18, may be expected to continue indefinitely, and constitute a substantial impairment. Biological and nonbiological factors are involved in these disorders. (From American Psychiatric Glossary, 6th ed) Child Development Deviations,Child Development Disorders,Child Development Disorders, Specific,Developmental Delay Disorders,Disabilities, Developmental,Development Disorders, Child,Child Development Deviation,Child Development Disorder,Development Deviation, Child,Development Deviations, Child,Development Disorder, Child,Developmental Delay Disorder,Developmental Disability,Deviation, Child Development,Disability, Developmental
D002675 Child, Preschool A child between the ages of 2 and 5. Children, Preschool,Preschool Child,Preschool Children
D003258 Consumer Behavior Behavior associated with the procurement of goods, services, or experiences. Consumer Preference,Consumer Satisfaction,Behavior, Consumer,Behaviors, Consumer,Consumer Behaviors,Consumer Preferences,Preference, Consumer,Preferences, Consumer,Satisfaction, Consumer
D003695 Delivery of Health Care The concept concerned with all aspects of providing and distributing health services to a patient population. Delivery of Dental Care,Health Care,Health Care Delivery,Health Care Systems,Community-Based Distribution,Contraceptive Distribution,Delivery of Healthcare,Dental Care Delivery,Distribution, Non-Clinical,Distribution, Nonclinical,Distributional Activities,Healthcare,Healthcare Delivery,Healthcare Systems,Non-Clinical Distribution,Nonclinical Distribution,Activities, Distributional,Activity, Distributional,Care, Health,Community Based Distribution,Community-Based Distributions,Contraceptive Distributions,Deliveries, Healthcare,Delivery, Dental Care,Delivery, Health Care,Delivery, Healthcare,Distribution, Community-Based,Distribution, Contraceptive,Distribution, Non Clinical,Distributional Activity,Distributions, Community-Based,Distributions, Contraceptive,Distributions, Non-Clinical,Distributions, Nonclinical,Health Care System,Healthcare Deliveries,Healthcare System,Non Clinical Distribution,Non-Clinical Distributions,Nonclinical Distributions,System, Health Care,System, Healthcare,Systems, Health Care,Systems, Healthcare
D005260 Female Females

Related Publications

Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
January 2022, PloS one,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
July 2011, IEEE transactions on information technology in biomedicine : a publication of the IEEE Engineering in Medicine and Biology Society,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
June 2025, Journal of autism and developmental disorders,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
June 2014, Families, systems & health : the journal of collaborative family healthcare,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
January 2019, Journal of patient-centered research and reviews,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
January 2023, PloS one,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
May 1995, Pediatric annals,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
January 2019, BioPsychoSocial medicine,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
December 2013, Families, systems & health : the journal of collaborative family healthcare,
Beth M McManus, and Adam Carle, and Dolores Acevedo-Garcia, and Michael Ganz, and Penny Hauser-Cram, and Marie McCormick
January 2025, African journal of disability,
Copied contents to your clipboard!