Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity

This is a qualitative study using semistructured individual interviews and a thematic analysis approach to inductively identify themes related to disability-based discrimination from the perspective of caregivers of children with medical complexity.¹⁴  The research team for this study consisted of a pediatric critical care physician, a general pediatrician, 2 physical medicine and rehabilitation and disability physicians, a pediatric palliative care physician, and 2 qualitative research experts. The consolidated criteria for reporting qualitative research checklist was used during study design, analysis, and reporting.¹⁵ 

Eligible participants were parents/caregivers of a child with medical complexities who were aged ≥1 year and reported a disability related to physical, cognitive, communication, and/or social functioning. Medical complexities were defined as having ≥2 organ systems affected and either technology dependencies, functional impairments, or high health care resource utilization. In addition, the caregiver must have perceived that their child experienced discrimination in a health care setting because of disability, which was assessed during a screening questionnaire before enrollment (Supplemental Information).

Parents/caregivers of children with medical complexity were recruited and selected by purposive sample techniques to participate in an interview to explore experiences of discrimination in health care. Participants were recruited through a variety of methods to ensure a diverse and geographically broad sample with experiences in different health care settings in the United States. First, participants were recruited through flyer advertisements distributed by Family Voices, Inc, a national family advocacy group working to support families of children with special health care needs. Additional participants were directly recruited through medical clinics focused on care of children with medical complexity through the Children and Youth with Special Healthcare Needs National Research Network, a research network of major pediatric hospitals in the United States. Sampling was continued until thematic saturation occurred.

Participants received a gift card after their participation to compensate for their time and expertise. This study was approved by the institutional review board, and informed consent was reviewed before participation in the study.

Individual in-depth interviews of 30 participants were conducted between November 2021 and August 2022. An interview guide was developed in conjunction with parent partners recruited through a local parent advisory council. The guide was organized around a stigma framework and included open-ended questions and probes related to experiences of discrimination, impacts on the child, and impacts on caregivers (Supplemental Information).¹⁶  Interview questions were piloted with a parent of a child with disability and refined for phrasing and content on the basis of feedback.

Interviews were conducted in English (by S.G.A.) or Spanish (by C.D.) on the basis of participant preference. All interviews were conducted via video conferencing because of geographic distribution of participants, with only the participant and the interviewer present. Interviews lasted between 30 and 90 minutes, and were audio-recorded and transcribed verbatim by a third-party transcription service.

Participants completed a demographic survey for the purpose of describing the sample and ensuring recruitment of a racially, socioeconomically, and geographically diverse population. The survey included questions related to age, sex, race and socioeconomic status, and information regarding their child including age and number of health care visits annually.

Data analysis and data collection occurred iteratively, to revise the interview guide and develop a more nuanced understanding of disability-based discrimination in health care. We applied grounded theory principles to build our conceptual model on the basis of the experiences of participants. Grounded theory is defined by systematic collection and concurrent analysis of qualitative data to allow themes and theories to emerge from the data themselves rather than building from a priori hypotheses.¹⁴ 

Data management and analysis were conducted using Dedoose software (Version 9.0.54, Los Angeles, CA: SocioCultural Research Consultants, LLC). Coding began with a line-by-line evaluation of the first 5 transcripts by 2 analysts (S.G.A. and R.K.D.). The analysts met to review codes and reach consensus on an initial codebook that captured emerging themes related to disability-based discrimination in health care. The codebook was refined as researchers revised and expanded codes with subsequent analysis. All transcripts were dually coded (S.G.A. and R.K.D.) to ensure trustworthiness. Any coding discrepancies were discussed and resolved through consensus.

After coding, the analysts ran code reports and wrote analytic memos in which codes and text were evaluated for concepts and categories of data and comparison among participants. The research team discussed codes and memos to group concepts and evaluate for emergent themes using axial coding. Data collection and analysis were complete when thematic saturation had occurred, which was determined when no new themes or information emerged and themes were felt to adequately determine a conceptual framework.¹⁷ 

Overall, 30 participants were recruited from 15 states (Fig 1). The majority of caregiver participants were female (25 of 30), ranging from ages 26 to 55 years old, and married (20 of 30). Their children with medical complexity ranged from age 18 months to 18 years. Most caregivers reported that their children had >20 health care encounters annually and were insured through Medicaid. Child and participant characteristics are shown in Table 1.

Six themes emerged surrounding perceived disability-based discrimination in a health care setting. Three themes were categorized as perceived drivers of discrimination (clinician lack of knowledge, clinician apathy, and clinician assumptions) and 3 themes were categorized as manifestations of discrimination (limited accessibility to care, substandard patient care, and dehumanization). These themes generate a framework of experiences of interpersonal discrimination in a health care setting for children with medical complexities and their families (Fig 2).

Table 2 summarizes the themes regarding perceived drivers of disability discrimination. Participants discussed clinician knowledge of disability and medical complexity as a key driver of discriminatory treatment. Clinician knowledge gaps were perceived to impact treatment decisions, interactions with the child, and communication to the caregivers. One mother described seeking health care for her child with a genetic condition associated with disability and complex medical needs:

Participants also felt that clinicians lacked interest in their children, or were reluctant to care for children with disabilities. To many participants, lack of interest or apathy was described as clinicians perceiving that their child may not be worthy of care. One mother described her perception that physicians would rather not care for children with medical complexity:

Finally, participants discussed clinicians’ personal assumptions that drove discrimination. Subthemes included negative assumptions about patients based on disability, and explicit and implicit bias regarding quality of life because of disability. One mother described physicians limiting treatment options on the basis of assumptions of child’s disability:

Another mother described challenges with clinicians’ quality-of-life assumptions because of disability influencing medical decisions:

Table 3 summarizes the themes regarding perceived manifestations of disability-based discrimination in health care. First, experiences of clinician unwillingness to welcome or provide care for disabled children in their practice limited options for care. One participant described her experience with finding a primary care physician:

Additionally, lack of appropriate accommodations inhibited care for some families. Examples of missing appropriate accommodations included lack of wheelchair scales, accessible doors, wheelchair ramps, and parking for larger vehicles. The experiences of feeling unwelcome at a medical practice and being provided reasonable accommodations were further challenged by cultural, racial, and language barriers that were perceived to further decrease willingness to care for a child with disability. For example, participants from minoritized groups described interactions in the health care system where treatment of pain was inappropriate because of assumptions of race, language services were not offered so care was not adequate, and interactions with clinicians were strained because of racial and ethnic differences.

Participants also described substandard health care experiences where they perceived clinicians’ medical decisions as being influenced negatively by the child’s disability. This often presented as clinicians not offering all available treatments or attempting to influence participants’ decisions on the basis of the child’s disability. One participant described the experience of her daughter with disability and a new cancer diagnosis with high remission rates:

Substandard treatment also manifested in management of pain, because caregivers often perceived discrimination because of disability in clinician lack of acknowledgment of pain or lack of appropriate treatment of pain in children with disabilities. One mother described an experience where her child did not receive adequate pain medication for a painful procedure because the child lacked linguistic communication:

Another theme encompassing disability discrimination emerged as dehumanization of children with disability. Dehumanizing events emerged as lack of acknowledgment or communication with the patient, inappropriate interactions with the patient, or inappropriate comments to the caregiver. This mother described the dehumanizing treatment:

Another participant referred to a conversation with her physician regarding how the parent reads books to her daughter:

In this study, caregivers of children with medical complexity describe discrimination against their children in the health care setting. This data informed a conceptual framework of interpersonal disability-based discrimination in pediatric health care (Fig 2), which includes drivers and manifestations. This framework validates caregiver experiences and can help clinicians to recognize and address microaggressions and explicit discrimination in health care encounters, and also identifies specific targets for better preparing the health care workforce to render quality care to pediatric patients with disability.

Clinicians’ lack of knowledge regarding disability was perceived to be a key driver of discrimination. Although this driver emerged from caregiver perceptions in our study, previous research aligns with this assessment, because clinicians commonly report significant gaps in knowledge and skills, as well as a general lack of comfort in caring for patients with disability.¹⁸  Unfortunately, lack of knowledge likely contributes to attenuated and substandard care for children with disability. In a survey, physicians reported a lack confidence in providing quality of care for adult patients with disability, with only 56% strongly agreeing that they welcomed patients with a disability into their practice.⁵  Accessibility to quality care for patients with disability is further inhibited by lack of appropriate accommodation, as was found in our study. Previous research has noted that physicians lack knowledge about reasonable accommodations for disabilities, and do not feel obligations to provide accommodations.^18,19  Although not yet studied well in pediatric health care, clinicians’ limited self-efficacy in caring for patients with disability may perpetuate disparities in health care accessibility and contribute to poor health outcomes.^20–22 

Across the interviews, clinicians’ implicit bias toward individuals with disabilities emerged as a key driver of discrimination. Caregivers shared examples of clinicians assuming children with disabilities have a negative quality of life or are less worthy of care, leading to biased medical decision-making, dehumanizing encounters, and substandard care with suboptimal outcomes. When quality of life assumptions are conflated with futility, resource rationing and fatal medical decisions can result.^6,23,24  Importantly, previous research has shown clinician assumptions of quality of life in both adults and children with disability are often grossly incorrect.^5,25  Clinicians often predict quality of life to be poor for patients with disability as compared with patient- or parent-reported quality of life, which is often reported to be good to excellent.²⁵  This concept is known as the disability paradox and represents a significant implicit bias against disability because of mispredictions of quality of life by health care professionals.²⁶ 

Finally, clinician apathy emerged as a driver of disability-based discrimination in health care. For many caregivers, this driver often led to encounters in which clinicians were perceived to dehumanize children with medical complexity or have a negative attitude regarding disability. This lack of interest may stem from clinician inexperience, feelings of burden because of structural barriers, or implicit bias.¹⁸  Caregivers reported strategies to mitigate dehumanization of their child, including sharing stories of their child and posting pictures in their hospital room to demonstrate their life outside of the hospital.

The emergence of lack of knowledge, bias, and apathy as key drivers of disability-based discrimination in health care identifies an urgent need for further education and disability training in clinicians. As the number of children with medical complexity increases, it is imperative that postgraduate medical education curricula address these knowledge gaps. Unfortunately, current training in disability is felt to be inadequate in medical and nursing education, leading to gaps in knowledge and negative attitudes of health professionals toward persons with disability.^27–31  Pediatric clinicians would benefit from increased education with curriculum focused on patients with medical complexity and disability.³²  One potential intervention is the incorporation of established core competencies for health care professionals into accreditation and licensure standards.³³  Other potential education-focused interventions for improving knowledge and regarding disability and medical complexity and reducing bias in pediatric trainees may include contact-based approaches or immersive curriculum.^34–37 

There were limitations to this study. First, because participants were recruited from clinics or advocacy organizations that serve families with children with complex medical needs, the sample may be biased to exclude patients who do not have access to comprehensive care or are not part of a disability-focused community. The recruitment of these samples was purposeful for qualitative research, but may not reflect the experience of other caregivers of children with disability. In addition, the experience of interpersonal discrimination represents an interaction between at least 2 people. In this study, only caregivers of children with disability were participants and therefore this conceptual model lacks the perceptions of clinicians in caring for children with disability. Given the focus of perceptions of discrimination, the caregiver experience develops an important model, and future work should focus on improved understanding of clinician perceptions and experiences in pediatric health care.

Children with medical complexity are dependent on the health care system to meet their health needs. Unfortunately, their experiences in health care are threatened by discrimination because of their disability. The results of our qualitative study provide a conceptual framework of disability-based discrimination in health care for children with themes emerging encompassing both the drivers and manifestations of discrimination between clinicians and their pediatric patients. Addressing the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with medical complexity and all children with disability.