Abstract
Aim
To qualitatively assess the impact of disability‐based discrimination in healthcare on the parents of children with medical complexity (CMC).
Method
In this qualitative study, we conducted in‐depth, semi‐structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability‐based discrimination in pediatric healthcare on the parents of CMC.
Results
Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability‐based discrimination in healthcare on parents. The themes were: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well‐being; and (4) racism and poverty‐based discrimination amplifies disability‐based discrimination.
Interpretation
The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well‐being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type.
Children with medical complexity often face discrimination in the healthcare system due to their disability. This qualitative study explored the impacts of discrimination on parents and found discrimination results in loss of trust, increases caregiving burden, and threatens parental well‐being. These experiences are often heightened in families from different ethnic, racial, or socioeconomic backgrounds.
This original article is commented by Patten on pages 1120–1121 of this issue.
Abbreviation
- CMC
children with medical complexity.
What this paper adds.
Discrimination results in loss of trust, which damages the physician–parent therapeutic relationship.
Discrimination increases the caregiving burden and contributes to decreased parental well‐being.
Experiences of discrimination are magnified in minoritized families.
Efforts to address disability discrimination in healthcare settings are needed to prevent negative impacts on parents.
Children with medical complexity (CMC), defined as children with more than one chronic disorder and functional limitations, have high healthcare needs and regular healthcare interactions. 1 , 2 Unfortunately, CMC can face discrimination in the healthcare system because of their disability during interpersonal interactions, in community or institutional practices or system‐level policies and procedures. 3 In CMC, previous work showed that disability‐based discrimination can present as inadequate access to care because of provider unwillingness to provide care or inappropriate lack of accommodations, substandard quality of care, and dehumanization of children with disability because of provider assumptions. 4 , 5 , 6 , 7 Alarmingly, experiences of discrimination may be associated with poor health outcomes. Adults with disability report that discrimination is associated with depression, overall worse quality of life, and avoidance of care, which can further exacerbate inequities. 8 , 9
While discriminatory experiences can contribute to poor health outcomes in adults with disability, little is known regarding the impact of disability‐based discrimination in pediatric healthcare. These experiences have the potential to harm parents who are likely to recognize the discrimination. However, the effect of these experiences on parents has not been reported. A better understanding of the impact of disability‐based discrimination on parents of CMC is needed to drive change in clinical care, health education, and health policy. Therefore, the primary objective of this study was to qualitatively assess the impact of perceived disability‐based discrimination toward their child on parents.
METHOD
Design
This study used a qualitative design, 10 which aimed to produce descriptions and interpretations of the phenomenon of interest using participants' language, while staying close to the data. This design is well‐suited to qualitative evaluation in healthcare systems. 11 The research team for this study consisted of two pediatric critical care physicians (SA, CDC), two qualitative research experts (RD, MW), a general pediatrician (JA), two physical medicine and rehabilitation physicians (AH, NM), and a palliative care physician (CDC).
Sampling and setting
Purposeful sampling was used to increase the information related to discrimination provided in each interview. 12 Parents were eligible for participation in this study if their child had medical complexity (i.e. ≥2 organ systems affected, technology dependencies such as tracheostomy, functional impairments, or high healthcare resource use), was aged 1 year or older, and reported that their child had a disability related to physical, cognitive, communication, or social functioning. The parent must have also self‐reported that they perceived their child experienced discrimination in a healthcare setting because of their disability. This was assessed using a screening questionnaire and the following question: Have you ever felt that your child was treated unfairly or inappropriately because of their disability in a healthcare setting?
Participants were recruited using two methods. First, participants were recruited using flyer advertisements distributed by Family Voices, a national family advocacy group for families of children with special healthcare needs. Second, participants were directly recruited through medical clinics focused on caring for CMC through a research network of pediatric hospitals, that is, the Children and Youth with Special Healthcare Needs National Research Network. Participants were included once; no participants withdrew from the study.
Data collection and processing
Parents' perceptions on the impact of disability‐based discrimination toward their child in the healthcare setting were explored within the context of one‐on‐one semi‐structured interviews. This interview process allows for deep exploration of individual perspectives of sensitive topics such as discrimination. 13 An interview guide with open‐ended questions was developed with example questions listed in Table 1. The full interview guide is available in Appendix S1. Interview questions were pilot‐tested with the parent of a child with disability recruited from a local Family Advisory Council and refined for phrasing and content based on the feedback. Interviews were conducted between November 2021 and August 2022 by interviewers in either English (SA) or Spanish (CDC) based on the participant's preference. All interviews were conducted via video conferencing with interviews lasting between 30 minutes and 90 minutes. All interviews were audio‐recorded and verbatim transcription of the recordings occurred immediately after the interviews. Interviews in Spanish were transcribed verbatim in Spanish and then translated into English for coding. In addition, participants completed a pre‐interview demographic survey for the purpose of describing the participant sample. Transcripts were not routinely returned to participants but were available on request.
TABLE 1.
Semi‐structured interview guide: content areas and example questions.
| Content area | Example question |
|---|---|
| Positive experiences in healthcare | Tell me about any experiences where you felt empowered by your healthcare team. |
| Discriminatory experiences in healthcare | Tell me about any experiences where you felt healthcare providers made negative assumptions about your child just because of their medical condition and disability. |
| Outcomes of discrimination | With experiences of discrimination in mind, how do you feel these experiences have impacted your life? |
| Systematic discrimination | Tell me about any times you may have had trouble accessing the care your child needs because of their disability. |
| Global assessment | How do you think children with disability are treated differently compared to children without disabilities in healthcare settings? |
Data analysis
Applied thematic analysis was used to allow themes to develop from the data. 14 Data analysis was conducted concurrently with data collection. Data coding began with a line‐by‐line assessment of the first five interview transcripts carried out independently by two analysts (SA and RD). The coding team reviewed interview transcripts in the order they were completed and met frequently to resolve coding discrepancies and develop new codes when new concepts arose to develop a final codebook. Coding was performed using Dedoose v9.0.54 (SocioCultural Research Consultants, LLC, Los Angeles, CA, USA).
The research team also wrote memos in which codes and text excerpts were evaluated for concepts and categories of data, as well as comparison between participants. The research team met to discuss codes and memos together to form concepts and then group concepts and evaluate them to develop themes using axial coding. The team also discussed developing themes and evaluated data for alternative hypotheses to reduce confirmation bias and monitor thematic saturation. Data collection was complete when no new themes related to the research question for four interviews emerged and themes adequately described concepts of the key impacts of discrimination on parents.
Ethical considerations
Participants received an electronic gift card after their participation to compensate for their time. This study was approved by the University of Utah Institutional Review Board and informed consent was obtained before participation in the study.
RESULTS
Thirty caregivers from 15 different states were interviewed. Parent characteristics are described in Table 2. Overall, participants were primarily female (n = 25) with a median age of 40 years (interquartile range [IQR] = 35–42 years). Table 3 displays the geographical location of participants according to region. The median age of children was 9 years (IQR = 4 years 6 months–13 years). Eighteen children were male (60%) and 16 (53%) had Medicaid or public insurance.
TABLE 2.
Participant demographic information (n = 30).
| Characteristic | |
|---|---|
| Age, median (IQR) | 40 (35–42) |
| Female, n (%) | 25 (83) |
| Self‐identified race, n (%) | |
| White | 21 (70) |
| Black | 8 (27) |
| Asian | 1 (3) |
| Ethnic group, n (%) | |
| Hispanic | 4 (13) |
| Non‐Hispanic | 26 (87) |
| Marital status, n (%) | |
| Married | 21 (70) |
| Divorced | 4 (13) |
| Single | 5 (17) |
| Highest educational level achieved, n (%) | |
| High school | 6 (20) |
| Bachelor's degree | 12 (40) |
| Master's degree | 9 (30) |
| Doctoral degree | 2 (7) |
| Employment status, n (%) | |
| Full‐time employment | 15 (50) |
| Part‐time or contract work | 7 (23) |
| Unemployed | 6 (20) |
| Retired or missing data | 2 (7) |
| Average estimated annual household income in US$, n (%) | |
| <50 000 | 7 (23) |
| 50 000–99 000 | 12 (40) |
| 100 000–150 000 | 5 (17) |
| >150 000 | 5 (17) |
Abbreviation: IQR, interquartile range.
TABLE 3.
Geographical location of the participants according to region (n = 30).
| Region | Location | Number of participants |
|---|---|---|
| Eastern | ||
| Connecticut | 1 | |
| Massachusetts | 1 | |
| New Hampshire | 1 | |
| New Jersey | 1 | |
| New York | 2 | |
| Virginia | 1 | |
| Washington, DC | 3 | |
| Southern | ||
| Florida | 1 | |
| Georgia | 1 | |
| North Carolina | 4 | |
| Texas | 2 | |
| Midwestern | ||
| Indiana | 1 | |
| Western | ||
| California | 2 | |
| Oregon | 2 | |
| Utah | 5 | |
| Washington | 2 | |
The data revealed three major impacts of perceived disability‐based discrimination in healthcare on parents of CMC: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; and (3) discrimination impacts parental well‐being. A final theme emerged whereby racism and poverty‐based discrimination amplifies disability‐based discrimination (Figure 1). Key exemplar quotes for each impact are shown in Table 4.
FIGURE 1.
The impact of disability‐based discrimination on parents.
TABLE 4.
Themes regarding the impact of disability‐based discrimination in healthcare on parents.
| Main theme | Subtheme | Exemplar quote |
|---|---|---|
| Discrimination leads to a loss of trust in healthcare providers | ||
| And then what it does in setting a stage is it causes anxiety, it causes defensiveness. I had a lack of trust for any provider that approached me, feeling like there was just no sincerity in our wishes or the value in our son's life (parent 16, mother). | ||
| Discrimination increases the burden of caregiving | ||
| Forced advocacy | It was me constantly fighting to make sure she was getting the care she needed to help. Very often, I felt like she was suffering. They weren't doing enough for her. They weren't keeping her comfortable. There were so many times where I felt like they were neglecting her care, and that she was suffering as a result of it unnecessarily (parent 14, mother). | |
| Finding the right provider | It has taken us 15–16 years to start creating the team that we have. Gosh, joining Facebook groups that are specific to the illnesses that my kids have and asking for recommendations. Finding illness‐specific doctors. Moving most of my kids' care to [an out of state children's hospital] made a big difference (parent 6, mother). | |
| Discrimination impacts parental well‐being | ||
| Feelings of guilt | Well, I think sometimes when you're not taken seriously, it makes you feel like you're the one that didn't do certain things properly. And then also when the ball gets dropped, when you hear later that he should have been evaluated sooner after certain things, when they don't explain this procedure to you and how things should work. And then later you find out, oh, this should have happened. It kind of makes you feel like, oh, maybe I should have asked more questions or maybe you feel as though you didn't do what you were supposed to do (parent 25, mother). | |
| Worsened mental health | I feel like I'm much more self‐conscious, I have way more anxiety, I have dealt with depression and everything else. And going to those appointments or dealing with those people that just treat him so terribly, treat me so terribly, it is a huge deal or it actually affects my marriage (parent 22, mother). | |
| Building resilience | But that said, it's just been a journey of personal growth ultimately, because I think that when we're in our most broken state, in our lowest state, the only choice, well for me, maybe not everybody, the only choice for me was to look up and to fight harder (parent 18, mother). | |
| Racism and poverty‐based discrimination amplifies disability‐based discrimination | ||
| Impact of being a minoritized individual | I think when they find out that they were in foster care, and they underwent detox and we're in a low‐income bracket because I'm a single mom. And then we're part of the Latina community, Latinos. Right away, it's a perception. It's where we're plopped into a category where those people don't know any better, aren't educated and haven't been exposed to the materials and the research (parent 17, mother). | |
| Impact of low socioeconomic status | I'll be honest, having one child on our private insurance and one child on Medicaid, I get different treatment sometimes. There's an assumption. It's just different. Sometimes it's like they maybe think I'm not going to understand things as well or not as good of a parent dealing with [a child with disability on Medicaid] versus my other son (parent 7, mother). | |
Discrimination leads to a loss of trust in healthcare providers
Parents described a loss of trust in their healthcare providers resulting from perceived discrimination in healthcare. Parents described feelings of distrust toward all healthcare providers and individual clinicians depending on the circumstances of the discrimination. One mother (parent 19) described her feelings of distrust and trauma during a readmission after perceived discrimination related to substandard care and her perception that the medical team did not value her child's life during a previous inpatient encounter:
There was a lot of anxiety about being back in that space, being hospitalized again. I'm sure some trauma there and I think on the whole, just not being able to trust. Because I couldn't trust the providers and I couldn't trust the shift changes with all the different nurses and different care practice they had, I felt like I couldn't leave.
As shown in this quote, the experience of perceived discriminatory treatment due to disability led to distrust in future care provision. This distrust led to increased caregiver burden and the mother feeling unable to leave the hospital to ensure that appropriate care was received. This also led to increased stress and decreased caregiver well‐being.
Discrimination increases the burden of caregiving
Parents often described an increased burden of caregiving as a result of discrimination. This included a subtheme of forced advocacy, where parents felt the need to advocate for their CMC to get appropriate care. One mother (parent 20) described her forced advocacy in caring for her child with disability:
I basically fight for her every day to have proper care. I'm emailing doctors and calling doctors, like literally almost every single day during the week, trying to fight for them to have, fight for her to have like, for them to put her on a priority … I can see that if I wasn't advocating for her or if I wasn't making those calls or not being a jerk about it, but just like being very assertive, I think that they would make, it would be even worse than it already is.
Another example of increased caregiving burden occurred with finding the right provider as parents often described a transition in care after discrimination; they would not continue care after these experiences because of loss of trust. Finding the right provider took effort, as one mother (parent 13) described:
I'm not going to walk in there trusting that you are to treat him appropriately. You're going to have to prove that to me. And if you suck, goodbye. I'm done. I'm not going to put up with it. I'm not going to placate it. And you're going to speak to me respectfully or you are not going to period.
Discrimination impacts parental well‐being
The discrimination of children with disability in healthcare also contributed to changes in the well‐being of parents. This theme presented with subthemes of feelings of guilt, worsened mental health, and building resiliency. First, many parents described feelings of guilt regarding the way their child was mistreated. One mother (parent 7) described the feelings of guilt and the burden placed on her after her child received substandard care and feeling the need to advocate more:
Because I think part of it was, I was upset with myself that I felt like I didn't handle it like I should have. I should have spoken up for myself more or for him more. And then I kind of beat myself up about it. And then it feels sometimes like really stressful just for me to try and even navigate figuring out where do we go next?
Parent 20 (mother) described her experiences in healthcare systems after the discrimination of her child and the loss of trust in the healthcare system, and the impact on her mental health:
My mental health has definitely been a struggle because of that. Because I'm always in this fight or flight response where I'm constantly on edge.
While discrimination often led to negative feelings, other parents described building resiliency through the experiences of increased advocacy. One mother (parent 26) described her feelings of resiliency:
You can have those feelings of it's not fair, but the best thing that this woman said to me … ‘Our children succeed when we stop waiting for someone to come in and save us, and we realize that we are the person that was sent to save our child’.
The cumulative disadvantage of racism and poverty‐based discrimination compounds the impact of disability‐based discrimination
Parents who identified as minoritized populations often described racism and ethnicity‐based discrimination as amplified by the experience of disability discrimination in the healthcare system. For many parents, the intersection of their identities exaggerated the impact of discrimination, leading to loss of trust and increased advocacy, particularly when racial discordance occurred between providers and parents. One mother (parent 25) described the perceived reasons for discrimination:
I would say because most providers are white … A lot of times [doctors think], maybe in the Black community, we don't have the same understanding of how things work. Because a lot of times we don't even like going to the doctor because of bad experiences or that when we come with some knowledge from wherever, the Internet or wherever, is not taken serious. So I just think it's a double discrimination instead of just the handicap or the disability part, that it's a double blockage or bias to it, to the family.
In addition, families described discrimination due to socioeconomic bias, particularly related to Medicaid insurance. Parents described being treated poorly once medical staff determined that their primary or secondary insurance was Medicaid. One mother (parent 7) described her experience:
I almost feel like they're more rushed in talking to me when I have Medicaid, like there's an assumption that, well, I'm not going to follow through or she's not going to do it anyway or she's somehow like a subpar parent or something until I explain, ‘okay, I have a Master's Degree’.
For many families, the compound effect of discrimination toward their child heightened the impact on loss of trust and the need to advocate for their child. One mother (parent 26) described how the experience of advocating when experiencing intersectional discrimination can escalate:
So for me, I'm always, what do I need to get done and how do I get it? But when you add that emotion in and sometimes that can escalate it, but rightfully so, they're trying to get care for their kids and they're not receiving it. So I get why they're raising their voice and yelling and screaming and having a fit.
DISCUSSION
In our qualitative study, parents of CMC described the impacts of perceived disability‐based discrimination toward their child on them, with themes such as loss of trust in healthcare providers, increased caregiving burden, impact on well‐being, and the cumulative burden of biases related to intersecting identities emerging from the study. This research describes the impact of disability‐based discrimination in pediatric healthcare on parents and provides impetus for change in clinical practice, education, and advocacy.
In our study, the impact of disability‐based discrimination on parents often begins with a breach of trust. This destruction of trust has the potential to negatively impact child health outcomes because the parent–provider relationship has an important role in shared decision‐making and adherence to treatment plans. 15 , 16 In addition, discrimination resulting in medical mistrust is a reported driver of avoidance of care in other populations, including adult patients with disability. 17 However, the parents in our study did not often report avoidance of care but rather that discrimination increased the caregiving burden on families, including the need to advocate for their child and finding new physicians for appropriate care when they lost trust in their care team.
Perceived discrimination in healthcare also contributed negatively to parental well‐being in our study. The experience of perceived discrimination toward their child increased challenges in this population already at risk for poor mental health. 18 , 19 Parents in our study described feelings of guilt and symptoms of traumatic stress, anxiety, and depression because of the perceived discrimination. Recognizing the negative impacts on parents is crucial because poor mental or physical health of parents can have pervasive negative impacts on the entire family unit. Poor parental health and well‐being have been associated with poor child health outcomes and increased family conflict. 20 , 21 Addressing disability‐based discrimination in pediatric healthcare may provide an opportunity to reduce caregiving burden, improve mental health outcomes for parents of CMC, and improve the health outcomes of children.
The intersection of minoritized identity, socioeconomic status, and disability was also highlighted by parents in this study as the perceived cumulative burden of discrimination. Racial discordance between patient and provider or parent and provider is associated with poor communication, limited development of a therapeutic relationship, and worse patient outcomes in pediatric patients; it may have had a role in these experiences. 22 , 23 , 24 The intersection of disability with minoritized and resource‐disadvantaged status created more opportunities for discrimination in the healthcare system given the need for high healthcare use for CMC and appeared to heighten the impact of mistrust and increased caregiver burden in healthcare. Interventions to reduce discrimination due to disability in healthcare must also consider the intersectionality of discrimination.
The results of this study have several implications for clinicians and advocacy organizations focused on children with disability. First, clinicians who provide care for CMC must recognize the impacts of discrimination on parents. Clinician recognition of and attention to disability‐based discrimination in healthcare are crucial steps in advocating for CMC and their families who have been disempowered and denied equal care. All clinicians must also be open to self‐assessment and identification of behaviors routed in implicit bias, which may lead to unconscious discriminatory action toward their patients. Increased educational training on disabilities and implicit bias surrounding disability for all healthcare clinicians is needed. 5 , 6 , 25 , 26 Second, standards of accountability for healthcare systems may reduce discrimination. Systems of care should consider processes such as providing adequate disability training and certification for all staff, providing improved accountability processes for reporting and redressing discrimination, and ensuring compliance with the Americans with Disability Act in all healthcare spaces. 5 , 26 , 27 , 28
Our study has limitations. Although, the purposeful sampling of parents of CMC in this study provides a rich context because these families are strongly positioned to thoroughly describe the impacts of discrimination, the experiences of these parents of CMC may not be transferrable to all parents of children with or without medical complexity who have experienced discrimination in healthcare in different contexts, particularly those outside the USA. In addition, discrimination does not occur in isolation of other challenges parents may experience related to the care of their CMC, such as significant medical needs, financial challenges, and coping with a life‐altering illness. Although all interview questions specifically referred to the impacts of discrimination on parents, it is possible that the impacts of discrimination are also linked to other settings. 16 , 29
Conclusion
Parents of CMC who reported experiences of disability‐based discrimination directed at their child in the healthcare system described negative impacts, including loss of trust and therapeutic relationship between provider and parent, increased burden to the family, and decreased parental well‐being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type. Clinicians, advocates, and policymakers must continue to address and reduce discrimination in healthcare settings to prevent these negative impacts on parents.
Supporting information
Appendix S1: Disability‐based discrimination in healthcare interview guide.
ACKNOWLEDGEMENTS
This project was supported by a pilot grant from the University of Utah Health Equity Research Core at the Woman and Child Institute. This program is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under agreement no. UA6MC31101 (Children and Youth with Special Health Care Needs Research Network). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the HRSA, HHS, and the U.S. Government. We thank the families and Family Advisory Council at the Primary Children's Hospital for their participation in the design of this study.
Ames SG, Delaney RK, Delgado‐Corcoran C, Houtrow AJ, Alvey J, Watt MH, et al. Impact of disability‐based discrimination in healthcare on parents of children with medical complexity. Dev Med Child Neurol. 2024;66:1226–1233. 10.1111/dmcn.15870
This original article is commented by Patten on pages 1120–1121 of this issue.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
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This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix S1: Disability‐based discrimination in healthcare interview guide.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.