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Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity
Stefanie G Ames1, Rebecca K Delaney2, Amy J Houtrow3
1Departments of Pediatrics.
Insights
Children with medical complexity and disability experience healthcare discrimination due to clinician factors like lack of knowledge and apathy. This discrimination manifests as limited access, substandard care, and dehumanization, impacting pediatric patient care.
Area of Science:
- Pediatric Healthcare
- Disability Studies
- Health Equity
Background:
- Disability-based discrimination in healthcare negatively impacts care quality and access.
- Limited understanding exists regarding healthcare discrimination experiences for children with medical complexity and disabilities.
- Addressing discrimination in pediatrics is crucial for improving care outcomes.
Purpose of the Study:
- To explore and understand the experiences of disability-based discrimination in healthcare among children with medical complexity and disability.
- To develop a conceptual framework detailing the drivers and manifestations of such discrimination.
Main Methods:
- Conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability.
- Utilized purposive sampling through national advocacy and research networks.
- Employed inductive thematic analysis with constant comparison for data interpretation.
Main Results:
- Six emergent themes formed a conceptual framework of disability-based discrimination.
- Drivers identified include lack of clinician knowledge, apathy, and assumptions.
- Manifestations include limited accessibility, substandard care, and dehumanization.
Conclusions:
- Children with medical complexity and disability are vulnerable to healthcare discrimination.
- The conceptual framework highlights key drivers and manifestations of discrimination.
- Understanding these factors is vital for enhancing patient care and promoting health equity for children with disabilities.
Background And Objectives:
Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-based discrimination in pediatrics is needed to drive change and improve care.
Methods:
We conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care.
Results:
Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care. Three themes described drivers of discrimination: lack of clinician knowledge, clinician apathy, and clinician assumptions. Three themes described manifestations of discrimination: limited accessibility to care, substandard care, and dehumanization.
Conclusions:
Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities.
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