Demand for children’s mental health services continues to increase, outstripping investment

More children with referrals began treatment in 2023-24 than the previous year – but numbers still waiting for treatment by the end of the year jumped by 50,000

Black children, older teenagers and girls among groups most likely to be referred for mental health crises – and data exposes deep regional inequalities to treatment for all children

New analysis reveals higher waiting times for treatment when looking at children’s direct contact with professionals only

Children’s Commissioner calls for renewed focus and investment in children’s mental health services, through the NHS 10 Year Plan

The Children’s Commissioner’s annual report on the state of children’s mental health services highlights huge inequalities when it comes to accessing support, with some young people waiting up to 17 times longer than others depending on where they live.

In her fourth annual report, Dame Rachel de Souza sets out children’s experiences with mental health services in England as data from 2023-24 shows nearly 60,000 children in England were referred for being ‘in crisis’ – more than 6% of all those referred to children’s mental health services that year – and 50,000 more children with active referrals were still waiting for treatment to begin at the end of March 2024.

Releasing the analysis to mark the end of Mental Health Awareness Week, Dame Rachel has urged health professionals and politicians to put children at the heart of the forthcoming NHS 10 Year Plan – because previous research[1] by the office shows children with additional vulnerabilities are often the ones most at risk of missing out on education.

This must be backed by a drive to end regional health inequalities, improve data on children’s health and review routes to diagnosis to reduce waiting times and introduce a shared definition of health conditions accepted by professionals across England.

Today’s report finds children in England awaiting treatment for mental health conditions face a mixed picture, despite real terms increases in investment in Children and Young People’s Mental Health Services (CYPMHS) and fewer referrals being closed before children receive treatment.

Dame Rachel de Souza, the Children’s Commissioner for England, said: “The numbers in this report are staggering – but these are not numbers, these are real children who not only missing precious moments of their childhood while stuck waiting for vital treatment for months, sometimes years, but also the scaffolding that makes their lives happy and fulfilled with their friends. “All too often, it is these children with unmet additional needs who go missing from education, falling off the radars of services and denied opportunities their peers take for granted. Children tell me they want to be in school – we must match this ambition they have for themselves and take preventative steps so that fewer children miss school for mental health-related reasons. “There are some encouraging signs of progress: increased investment in real terms, some localised improvements in accessing services and shorter waiting times for children experiencing mental health crises. But even five days is a long time for a child in crisis to wait – so we must grasp this moment of transformation in the NHS with both hands to build a system that meets the needs of every child – early, fairly, and locally.”

Findings in today’s report include:

Total numbers: More than 958,200 children in England have an active referral to CYPMHS as of the end of March 2024, an increase of 10,000 from the previous year and equivalent to 8% of England’s population of 12 million children.

More than 958,200 children in England have an active referral to CYPMHS as of the end of March 2024, an increase of 10,000 from the previous year and equivalent to 8% of England’s population of 12 million children. Age: More than three quarters (76%) of children entering treatment were over the age of 10. Children aged 13 to 15 were the largest group accessing treatment (nearly 300,000 children were referred), making up 35% of all those entering treatment despite making up only 18% of all children in England.

More than three quarters (76%) of children entering treatment were over the age of 10. Children aged 13 to 15 were the largest group accessing treatment (nearly 300,000 children were referred), making up 35% of all those entering treatment despite making up only 18% of all children in England. Referral reason: Anxiety was the most common primary referral reason (16% – up slightly from 15% in 2022-23), followed by neurodevelopmental conditions excluding autism (11% – up from 9.2%), suspected autism (6.8% – up from 5.3%) and ‘in crisis’ (6.2% – up from 5.8%).

Anxiety was the most common primary referral reason (16% – up slightly from 15% in 2022-23), followed by neurodevelopmental conditions excluding autism (11% – up from 9.2%), suspected autism (6.8% – up from 5.3%) and ‘in crisis’ (6.2% – up from 5.8%). Waiting times: More children began treatment in 2023-24 – 92% entered treatment within the year and 45% within four weeks. 50,000 more children with active referrals were still waiting for treatment to begin at the end of the year – up to 320,000 in 2023-24 from 270,300 in 2022-23.

More children began treatment in 2023-24 – 92% entered treatment within the year and 45% within four weeks. 50,000 more children with active referrals were still waiting for treatment to begin at the end of the year – up to 320,000 in 2023-24 from 270,300 in 2022-23. Direct contact with professionals: New analysis of previously unpublished data reveals waiting times are higher when only counting direct activity with children and discounting other types of contact usually counted in official published data, such as a professional attending a multi-disciplinary meeting to discuss a child’s case.

New analysis of previously unpublished data reveals waiting times are higher when only counting direct activity with children and discounting other types of contact usually counted in official published data, such as a professional attending a multi-disciplinary meeting to discuss a child’s case. Neurodevelopmental conditions: The number of children referred for neurodevelopmental conditions like autism and ADHD has increased by almost 30% – despite not being mental health conditions – with these children facing some of the longest waits. 64% of children still waiting for treatment at the end of the year in March 2024 were referred for suspected autism, which was the reason for a referral with the longest average waiting time of 223 days.

The number of children referred for neurodevelopmental conditions like autism and ADHD has increased by almost 30% – despite not being mental health conditions – with these children facing some of the longest waits. 64% of children still waiting for treatment at the end of the year in March 2024 were referred for suspected autism, which was the reason for a referral with the longest average waiting time of 223 days. Investment in services: Investment in CYPMHS represents just over 1% of Integrated Care Boards’ (ICB) total annual spend – £1.1 billion in 2023-24, an increase of £87 million in 2022-23.

Investment in CYPMHS represents just over 1% of Integrated Care Boards’ (ICB) total annual spend – £1.1 billion in 2023-24, an increase of £87 million in 2022-23. Regional variation: Children in the ICB area of Leicester, Leicestershire and Rutland wait just six days for treatment on average, while children in Hampshire and Isle of Wight wait up to 17 times longer: 103 days on average. Waiting times almost always increase when looking at direct contact with professionals only: in NHS South-East London, children waited an average of 52 days more, the largest difference of any ICB. Spend per child referred varied widely by ICB, from as much as £2,513 in North-West London, to £548 in Coventry and Warwickshire.

Children in the ICB area of Leicester, Leicestershire and Rutland wait just six days for treatment on average, while children in Hampshire and Isle of Wight wait up to 17 times longer: 103 days on average. Referral routes: Fewer children had their referral closed before treatment, but there is significant variation in treatment depending on a child’s referral route. 72% of children referred by the justice system had their referrals closed before treatment – fewer than one in five of these children (19%) began treatment.

Fewer children had their referral closed before treatment, but there is significant variation in treatment depending on a child’s referral route. 72% of children referred by the justice system had their referrals closed before treatment – fewer than one in five of these children (19%) began treatment. Crisis care: Nearly 60,000 children – 7.7% more than the previous year – were referred for being in crisis in 2023-24.Black children, older teenagers and girls are among the groups of children most likely to be referred for crisis mental health treatment. ‘In crisis’ was the referral reason with the shortest average waiting time of five days.

With NHS England being brought into the Department of Health and Social Care (DHSC), and major reforms to practice proposed, the Commissioner’s report sets out a vision that puts children at the heart of a once-in-a-generation opportunity to shift the system towards prevention, early intervention, and community-based support.

Dame Rachel said: “Part of this transformation must include rethinking how the health profession communicates with children. Too often, the conversation focuses on what a child with a particular condition – or even a suspected condition – cannotdo, instead of what they can do. I want to see a consensus across every service working with children that they should never be labelled or diagnosed by professionals who are not clinicians – to do so without the appropriate support in place will only limit their ambition and ability. “The future of our NHS must start with children. If we get this right, we don’t just reduce pressure on services – we give every child the best start in life.”

To support this reform, particularly through the NHS 10 Year Plan, the Children’s Commissioner has made the following recommendations:

Early access to support: All children should be able to get mental health help in their schools and communities without needing a diagnosis or medical label. Mental Health Support Teams must continue being rolled out to all schools ahead of 2030 in line with the government’s manifesto commitment and the new Young Futures Hubs must offer open-access support in every Integrated Care Board area.

All children should be able to get mental health help in their schools and communities without needing a diagnosis or medical label. Mental Health Support Teams must continue being rolled out to all schools ahead of 2030 in line with the government’s manifesto commitment and the new Young Futures Hubs must offer open-access support in every Integrated Care Board area. Support in school: Alongside the roll-out of Mental Health Support Teams, any child on a CYPMHS waiting list or receiving treatment and beginning to disengage from school should automatically be referred to a multi-agency attendance forum and assigned a key worker to address underlying issues.

Alongside the roll-out of Mental Health Support Teams, any child on a CYPMHS waiting list or receiving treatment and beginning to disengage from school should automatically be referred to a multi-agency attendance forum and assigned a key worker to address underlying issues. Shorter waiting times: Children should wait no longer than four weeks for assessment and four weeks for treatment. This will require additional, annual, ring-fenced funding for children’s mental health services in every local area.

Children should wait no longer than four weeks for assessment and four weeks for treatment. This will require additional, annual, ring-fenced funding for children’s mental health services in every local area. Better data and transparency: The government must introduce a single, meaningful national measure of waiting times from referral to treatment – not just ‘activity’ that may not involve direct contact with children.

The government must introduce a single, meaningful national measure of waiting times from referral to treatment – not just ‘activity’ that may not involve direct contact with children. Support for marginalised children: Targeted investment in community-led therapeutic services is needed to reach children less likely to access NHS services – particularly those from minority ethnic backgrounds, disabled children, and children in care.

Improved diagnostic pathways: Children with autism, ADHD and other neurodevelopmental conditions face some of the longest waits. The government must commission urgently an independent review of diagnostic and post-diagnostic support for children, so that whether they are referred for diagnostic assessment or not is not subject to a postcode lottery.

Children with autism, ADHD and other neurodevelopmental conditions face some of the longest waits. The government must commission urgently an independent review of diagnostic and post-diagnostic support for children, so that whether they are referred for diagnostic assessment or not is not subject to a postcode lottery. Stronger accountability: The Care Quality Commission’s new Chief Inspector of Mental Health should lead a thematic review of children’s services, examining gaps in thresholds and access.

The Care Quality Commission’s new Chief Inspector of Mental Health should lead a thematic review of children’s services, examining gaps in thresholds and access. Mental Health Act reform: The new legislation must include better protections for under-16s, a duty to provide appropriate inpatient care, and safeguards against inappropriate placements.

Today’s report draws on powerful testimony from the Children’s Commissioner’s The Big Ambition survey of over 250,000 children and young people across England: “There should be more staff and funding because at the moment people are struggling more than ever with their mental health … The waiting lists are too long.” – Girl, 16. “Better mental health support in schools, shorter waiting lists, equal opportunities for people with additional needs.” – Girl, 17. “I think you should improve mental health hospitals, especially ones for young people.” – Girl, 13.

News

Historic $8.5b Medicare investment explained

Jolyon Attwooll 24/02/2025 4:37:42 PM Exactly what do the major parties’ commitments include and how will a promise to make ‘nine out of 10 visits to the GP free’ impact practices?

Prime Minister Anthony Albanese unveiling the Labor Party’s Medicare investment. (Image: AAP/Rob Burnett)

An ‘amazing’ investment for GP training, but a ‘mixed bag’ for general practices financially: that’s how RACGP President Dr Michael Wright views an election funding promise described as the ‘single largest investment’ in Medicare history.

In Launceston on Sunday, Prime Minister Anthony Albanese unveiled a long-anticipated, central plank of the Australian Labor Party re-election campaign, promising a $8.5 billion boost to Medicare funding.

The Prime Minister said investment in a new Bulk Billing Practice Incentive Program, to begin from November this year, will support thousands more general practices to bulk bill every patient, and ensure ‘no one is held back, and no one is left behind’.

If re-elected, the party’s plan will widen the tripled bulk-billing incentive introduced for concession cardholders in November 2023 to the whole population, as well as introducing a 12.5% loading payment on Medicare rebates for clinics that fully bulk bill.

‘Our plan will mean more bulk billing, in every part of our country because our Government wants nine out of 10 visits to the GP to be free,’ the Prime Minister said.

The investment will allow an additional 18 million bulk-billed visits to the GP each year, as well as support the training of 2000 more GPs each year by 2028.

Federal Health and Aged Care Minister Mark Butler says the policy could boost the bulk-billing rate to 90%.

The Government’s newly announced election promise was shortly followed by a pledge by the Coalition to match the commitment ‘dollar for dollar’.

Opposition leader Peter Dutton said he was pleased to announce the Coalition would commit $9 billion extra funding to Medicare including a previous $500 million pledge for more mental health support.

‘It will provide support to training, it will provide support to mental health services, and it will provide support to making sure that practices are viable and can provide a mix of services to patients,’ Mr Dutton said.

Dr Wright welcomed the bipartisan commitment to invest in Medicare.

However, he warned a focus on bulk-billing rates will not suit all general practice business models.

‘The additional investment into general practice is a positive thing but we’ve got to make sure that it’s targeted to the people who need it and the GPs who need that funding as well,’ he told newsGP.

According to the Labor Party, its investment means around 4800 practices will be in a better financial position if they adopt full bulk billing.

Details of the exact difference the Medicare pledge could make to rebates were included in the official announcement (see extract below).

They show a 62% increase for a standard Level B consult in metro areas at a fully bulk-billed general practice, with rebates for non-concession card holding adults rising from $42.85 to $69.56. The rebate for bulk-billed Level B consultations in remote areas will more than double to $86.91.

Meanwhile Level C consultations will increase by 30% in city areas and 59% in the most remote districts, with the lower rise a cause of concern to Dr Wright.

‘We have been asking for increased Medicare rebates, particularly targeting long consultations and mental health consultations, because we know that’s where the chronic disease and the complex care happen,’ he said.

‘We will definitely be highlighting some of the unintended impacts of this because it does increase the remuneration for shorter consultations much higher than it does for long consultations and chronic disease management.

‘Do we have enough GPs to meet the extra demand and what’s going to be the impact on health outcomes if it’s harder for people to get a longer appointment because the incentives are so strong for shorter ones?’

The RACGP President also said GPs may face more pressure to bulk bill and emphasised that an expansion of bulk-billing incentives does not oblige general practices to adopt them.

‘Just because these bulk-billing incentives are available to everyone doesn’t mean everyone’s going to have access to bulk billing, because GPs are still able to set their fees and the college will completely support that going forward,’ he said.

‘The Medicare rebate still may not cover the cost of care and that’s really important for government to make clear and for patients to know.’

However, the RACGP President gave an unequivocal welcome to the commitments to boost support for training GPs, which is one of the college’s key election requests.

The workforce and training funding pledges outlined by the Albanese Government include:

$265.2 million to expand GP training with 200 additional training places per year from 2026, growing to 400 by 2028

$204.8 million to fund salary incentives for junior doctors to specialise in general practice

$43.9 million to provide paid parental leave and study leave for GP trainees

$44 million for an additional 200 junior doctor rotations in primary health care each year from 2026, increasing to 400 annually by 2028

$48.4 million for 100 additional Commonwealth Supported Places for medical students annually from 2026, rising to 150 by 2028, with demand-driven places for First Nations students

The announcement confirms Medicare as a key battleground for the forthcoming Federal Election, for which a date is still yet to be confirmed.In a series of interviews on Monday, Minister Butler set out his belief that the Medicare investment will mean most clinics are better off if they fully bulk bill.We know almost 5000 practices, which is the very clear majority of general practices in the country, would be better off if they bulk billed all of their patients under the funding that we announced yesterday,’ Minister Butler told the ABC.‘We’re pretty confident this means that we can get to 90% [bulk-billing rate] across the population, not just for pensioners, and we’ll triple the number of practices that become bulk-billing practices, that means they bulk bill everyone who comes through their door.’However, for Dr Wright the true picture of the investment’s impact is not yet clear.‘We’ve got over 7000 practices, and we can’t afford to lose any of them due to worsening viability,’ he said.Log in below to join the conversation.

bulk billing Federal Election Medicare

Note: This content was updated on June 2, 2025 to include updated state-funded coverage for immigrants as well as immigrant health coverage-related provisions in the budget reconciliation bill.

Summary

As of 2023, there were 47.1 million immigrants residing in the U.S., including 22.4 million noncitizen immigrants and 24.7 million naturalized citizens, who each accounted for about 7% of the total population. Noncitizens include lawfully present and undocumented immigrants. Many individuals live in mixed immigration status families that may include lawfully present immigrants, undocumented immigrants, and/or citizens. One in four children has an immigrant parent, including over one in ten (12%) who are citizen children with at least one noncitizen parent. This brief provides an overview of health coverage for immigrants based on data from the 2023 KFF/LA Times Survey of Immigrants, the largest nationally representative survey focused on immigrants, and discusses potential implications of incoming Trump administration policies for coverage of immigrants.

As of 2023, half (50%) of likely undocumented immigrant adults and one in five (18%) lawfully present immigrant adults reported being uninsured compared to less than one in ten naturalized citizen (6%) and U.S.-born citizen (8%) adults. Noncitizen immigrants are more likely to be uninsured than citizens because they have more limited access to private coverage due to working in jobs that are less likely to provide health benefits. They also face eligibility restrictions for federally funded coverage options, including Medicaid, the Children’s Health Insurance Program (CHIP), Affordable Care Act (ACA) Marketplace coverage, and Medicare. Moreover, those who are eligible for coverage face a range of enrollment barriers including fear, confusion about eligibility rules, and language access challenges. Reflecting their higher uninsured rate, noncitizen immigrants are more likely than citizens to report barriers to accessing health care and skipping or postponing care. Immigrants have lower health care expenditures than their U.S.-born counterparts reflecting lower use of care due to a combination of them being younger and healthier and facing more barriers to accessing care.

Some states have expanded access to health coverage for immigrants. At the state-level there has been continued take up of state options to expand Medicaid and CHIP coverage for lawfully present immigrant children and pregnant people, and a small but growing number of states have expanded fully state-funded coverage to certain groups of low-income people regardless of immigration status. However, many immigrants, particularly those who are undocumented, remain ineligible for coverage options.

Many immigrants remain fearful of accessing assistance programs, including health coverage. The Biden administration reversed prior Trump administration changes to public charge rules so that they did not consider participation in non-cash assistance programs, including Medicaid and CHIP. It also increased funding for Navigator programs that provide enrollment assistance to individuals, which is particularly important for helping immigrant families enroll in coverage. However, as of 2023, nearly three-quarters of immigrant adults, including nine in ten of those who are likely undocumented, reported uncertainty about how use of non-cash assistance programs may impact immigration status or incorrectly believed use may reduce the chances of getting a green card in the future. About a quarter (27%) of likely undocumented immigrant adults and nearly one in ten (8%) lawfully present immigrant adults say they avoided applying for food, housing, or health care assistance in the past year due to immigration-related fears.

Fears about accessing assistance programs, including health coverage, will likely increase under the second Trump administration and provisions in the House budget reconciliation bill could eliminate health coverage access for many lawfully present and undocumented immigrants. The Trump administration is undertaking broad enforcement aimed at restricting immigration which will likely increase fears and uncertainty among immigrant families about accessing assistance programs and seeking health care. In addition, provisions in the budget reconciliation bill being considered by Congress would eliminate ACA Marketplace and Medicare coverage for many lawfully present immigrants and would penalize states that use their own funds to provide health coverage to immigrants regardless of immigration status.

Overview of Immigrants

Based on federal survey data, as of 2023, there were 47.1 million immigrants residing in the U.S., including 22.4 million noncitizen immigrants and 24.7 million naturalized citizens, who each accounted for about 7% of the total population (Figure 1). Estimates suggest that about six in ten noncitizens were lawfully present immigrants, such as lawful permanent residents (green card holders) and those with a valid work or student visa, while the remaining four in ten were undocumented immigrants, who may include individuals who entered the country without authorization and individuals who entered the country lawfully and stayed after their visa or status expired. Many individuals live in mixed immigration status families that may include lawfully present immigrants, undocumented immigrants, and/or citizens. A total of 19 million or one in four children living in the U.S. had an immigrant parent as of 2023, and the majority of these children were citizens (Figure 2). About 8.6 million or 12% were citizen children with at least one noncitizen parent.

Uninsured Rates by Immigration Status

The 2023 KFF/LA Times Survey of Immigrants, the largest nationally representative survey focused on immigrants, provides data on health coverage of immigrant adults and experiences accessing health care, including by immigration status.

Although the majority of uninsured people are citizens, noncitizen immigrant adults, particularly likely undocumented immigrants, are significantly more likely to report being uninsured than citizens. As of 2023, half (50%) of likely undocumented immigrant adults and one in five (18%) lawfully present immigrant adults said they were uninsured compared to 6% of naturalized citizen adults and 8% of U.S.-born citizen adults (Figure 3).

Reflecting their higher uninsured rates, noncitizen immigrants, especially those who are likely undocumented, are more likely than citizens to report barriers to accessing health care and skipping or postponing care. Research shows that having insurance makes a difference in whether and when people access needed care. Those who are uninsured often delay or go without needed care, which can lead to worse health outcomes over the long-term that may ultimately be more complex and expensive to treat. Overall, likely undocumented immigrant adults are more likely than lawfully present immigrant adults and naturalized citizen adults to report not having a usual source of care other than an emergency room, not having a doctor’s visit in the past 12 months, and skipping or postponing care in the past 12 months (Figure 4). Lawfully present immigrant adults also are more likely than naturalized citizen adults to say they have not had a doctor’s visit in the past 12 months.

Research also shows that immigrants have lower health care use and expenditures than their U.S.-born counterparts and help to subsidize health care for U.S.-born citizens. Overall, research shows that immigrants, including lawfully present and undocumented immigrants, use less health care than U.S.-born citizens. Lower use of health care among immigrants likely reflects a combination of them being younger and healthier than their U.S.-born counterparts as well as them facing increased barriers to care including a higher uninsured rate, language access challenges, confusion, and immigration-related fears. Reflecting their lower use of health care, immigrants have lower health care expenditures than their U.S.-born counterparts. KFF analysis of 2021 medical expenditure data show that, on average, annual per capita health care expenditures for immigrants are about two-thirds those of U.S.-born citizens ($4,875 vs. $7,277). Recent research further finds that, because immigrants, especially undocumented immigrants, have lower health care use despite contributing billions of dollars in insurance premiums and taxes, they help subsidize the U.S. health care system and offset the costs of care incurred by U.S.-born citizens.

Access to Health Coverage Among Immigrants

Private Coverage

Despite high rates of employment, noncitizen immigrants have limited access to employer-sponsored coverage. Although most noncitizen immigrant adults say they are employed, they are significantly more likely than citizens to report being lower income (household income less than $40,000) (Figure 5). This pattern reflects disproportionate employment of noncitizen immigrants in low-wage jobs and industries that are less likely to offer employer-sponsored coverage. Given their lower incomes, noncitizen immigrants also face challenges affording employer-sponsored coverage when it is available or through the individual market.

Federally Funded Coverage

Lawfully present immigrants may qualify for Medicaid and CHIP but are subject to certain eligibility restrictions. In general, lawfully present immigrants must have a “qualified” immigration status to be eligible for Medicaid or CHIP, and many, including most lawful permanent residents or “green card” holders, must wait five years after obtaining qualified status before they may enroll. Some immigrants with qualified status, such as refugees and asylees, as well as citizens of Compact of Free Association (COFA) nations, do not have to wait five years before enrolling. Some immigrants, such as those with temporary protected status, are lawfully present but do not have a qualified status and are not eligible to enroll in Medicaid or CHIP regardless of their length of time in the country (Appendix A). For children and pregnant people, states can eliminate the five-year wait and extend coverage to some lawfully present immigrants without a qualified status. As of April 2025, 37 states plus D.C. have taken up this option for children and 31 states plus D.C. have elected the option for pregnant individuals.

In December 2020, Congress restored Medicaid eligibility for citizens of COFA nations, and in March 2024, eligibility was restored for additional federally funded programs including CHIP. The U.S. government has COFA agreements with the Republic of the Marshall Islands, the Federated States of Micronesia, and the Republic of Palau. Certain citizens of these nations can lawfully work, study, and reside in the U.S., but they had been excluded from federally funded Medicaid since 1996, under the Personal Responsibility and Work Opportunity Reconciliation Act. As part of a COVID-relief package, Congress restored Medicaid eligibility for COFA citizens who meet other eligibility requirements for the program effective December 27, 2020. On March 9, 2024, Congress further extended eligibility for COFA citizens to newly include other federally funded programs such as CHIP, the Supplemental Nutrition Assistance Program (SNAP), and Temporary Assistance for Needy Families (TANF), among others.

A total of 24 states plus D.C. have also extended coverage to pregnant people regardless of immigration status through the CHIP From-Conception-to-End-of-Pregnancy (FCEP) option. States have the option in CHIP to provide prenatal care and pregnancy related benefits to targeted low-income children beginning from conception to end of pregnancy regardless of their parent’s citizenship or immigration status. While other pregnancy-related coverage in Medicaid and CHIP requires 60 days of postpartum coverage, the CHIP FCEP option does not include this coverage. However, some states that took up this option provide postpartum coverage through a CHIP health services initiative or using state-only funding. Twelve of the states that have implemented the FCEP option (California, Colorado, Connecticut, Illinois, Maine, Massachusetts, Minnesota, New York, Oregon, Rhode Island, Texas, and Washington) plus D.C. have used state funding or CHIP health services initiatives to extend postpartum coverage to 12 months to align with the Medicaid extension established by the American Rescue Plan Act. Maryland extends coverage for four months postpartum, and Alabama and Virigina extend coverage for 60 days postpartum using CHIP health services initiatives.

Lawfully present immigrants can purchase coverage through the ACA Marketplaces and, like citizens, may receive tax credits to help pay for premiums and cost sharing that vary on a sliding scale based on income. Generally, these tax credits are available to people with incomes starting from 100% of the federal poverty level (FPL) who are not eligible for other affordable coverage. In addition, lawfully present immigrants with incomes below 100% FPL may receive tax credits if they are ineligible for Medicaid based on immigration status. This group includes lawfully present immigrants who are not eligible for Medicaid or CHIP because they are in the five-year waiting period or do not have a “qualified” status. Individuals with Deferred Action for Childhood Arrivals (DACA) status were not considered lawfully present for purposes of health coverage eligibility and remained ineligible despite having a deferred action status, which otherwise qualified for Marketplace coverage. On May 3, 2024, the Biden administration published regulations that changed the definition of lawfully present to include DACA recipients for purposes of eligibility to purchase coverage through the ACA Marketplaces and to receive tax credits to help pay for premiums and cost sharing. The rule became effective on November 1, 2024, to coincide with the 2025 Open Enrollment Period and the Biden administration estimates that 100,000 DACA recipients will receive coverage under the new rule. Implementation of the coverage expansion remains subject to ongoing litigation with DACA recipients in 19 states (AL, AR, FL, IA, ID, IN, KS, KY, MS, MT, ND, NE, NH, OH, SC, SD, TN, TX, VA) being unable to enroll in ACA Marketplace coverage as of January 2025. Further, in March 2025, the Centers for Medicare and Medicaid Services (CMS) submitted a Notice of Proposed Rulemaking to the Federal Register seeking to exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, which would make DACA recipients across the U.S. ineligible for purchasing coverage through the ACA Marketplaces.

Lawfully present immigrants also can qualify for Medicare subject to certain restrictions. Specifically, they must have sufficient work history to qualify for premium-free Medicare Part A. If they do not have sufficient work history, they may qualify if they are lawful permanent residents and have resided in the U.S. for five years immediately prior to enrolling in Medicare, although they must pay premiums to enroll in Part A.

Undocumented immigrants are not eligible to enroll in federally funded coverage including Medicaid, CHIP, or Medicare or to purchase coverage through the ACA Marketplaces. Medicaid payments for emergency services may be made to hospitals on behalf of individuals who are otherwise eligible for Medicaid but for their immigration status. These include lawfully present immigrants who are subject to a five-year bar for Medicaid and undocumented immigrants. These payments may help cover the costs for emergency care provided to immigrants who remain ineligible for Medicaid but are not coverage for individuals. Much of Emergency Medicaid spending goes towards labor and delivery costs and Emergency Medicaid spending represented less than 1% of total Medicaid spending in fiscal year 2023.

State Funded Coverage

As of April 2025, 14 states plus D.C. provide comprehensive state-funded coverage to children regardless of immigration status (Figure 6). These states include California, Colorado, Connecticut, Illinois, Maine, Massachusetts, Minnesota, New Jersey, New York, Oregon, Rhode Island, Utah, Vermont, Washington, and D.C. Additionally, two of these states (New Jersey and Vermont) also provide state-funded coverage to income-eligible pregnant people regardless of immigration status, with Vermont extending this coverage for 12 months postpartum.

As of April 2025, seven states (California, Colorado, Illinois, Minnesota, New York, Oregon, Washington) plus D.C. have also expanded fully state-funded coverage to at least some income-eligible adults regardless of immigration status (Figure 7). Some additional states cover some income-eligible adults who are not otherwise eligible due to immigration status using state-only funds but limit coverage to specific groups, such as lawfully present immigrants who are in the five-year waiting period for Medicaid coverage, or provide more limited benefits. In addition to these states, Maryland plans to allow income-eligible individuals to purchase Marketplace coverage without subsidies regardless of immigration status starting November 2025 through a section 1332 waiver. Recently, some states have proposed rolling back state-funded health coverage for some groups of immigrants due to budget constraints.

Data suggest that state coverage expansions for immigrants make a difference in their health coverage and health care access and use. The 2023 KFF/LA Times Survey of Immigrants shows that immigrant adults residing in states with more expansive coverage policies for immigrants are less likely to be uninsured compared to their counterparts living in states with less expansive coverage policies. California’s 2016 expansion to cover low-income children regardless of immigration status was associated with a 34% decline in uninsurance rates. Similarly, a study found that children who reside in states that have expanded coverage to all children regardless of immigration status were less likely to be uninsured, to forgo medical or dental care, and to go without a preventive health visit than children residing in states that have not expanded coverage. Other research has found that expanding Medicaid coverage to pregnant people regardless of immigration status was associated with higher rates of prenatal care and improved outcomes including increases in average gestation length and birth weight among newborns, while more restrictive state coverage policies were associated with reduced postpartum care utilization. The cost of providing insurance to immigrant adults through Medicaid expansion was also found to be less than half the per person cost of doing so for U.S-born adults. Recent estimates also suggest that the state-funded expansion to all immigrants regardless of status in California could reduce poverty among noncitizen immigrants and their families.

Enrollment Barriers

Among immigrants who are eligible for coverage, many remain uninsured because of a range of enrollment barriers, including fear, confusion about eligibility policies, difficulty navigating the enrollment process, and language access challenges. Research suggests that changes to immigration policy made by the first Trump administration contributed to growing fears among immigrant families about enrolling themselves and/or their children in Medicaid and CHIP even if they were eligible. In particular, changes to the public charge policy likely contributed to decreases in participation in Medicaid among immigrant families and their primarily U.S.-born children. The Biden administration reversed many of these changes, including the changes to public charge policy, and increased funding for Navigator programs that provide enrollment assistance to individuals, which is particularly important for helping immigrant families enroll in coverage. However, as of 2023, nearly three-quarters of immigrant adults, including nine in ten of those who are likely undocumented, report uncertainty or an incorrect understanding about how use of non-cash assistance programs may impact immigration status or incorrectly believe use may reduce the chances of getting a green card in the future. About a quarter (27%) of likely undocumented immigrants and nearly one in ten (8%) lawfully present immigrants say they avoided applying for food, housing, or health care assistance in the past year due to immigration-related fears.

Fears about participating in programs, including health coverage, will likely increase under the second Trump administration. Although President-elect Trump has not indicated whether his incoming administration plans to reinstate his first-term changes to public charge policy, doing so could lead to widespread confusion, fears, and broad chilling effects among immigrant families. In addition, broader immigration enforcement actions proposed by President-elect Trump such as mass deportation of immigrants, elimination of the DACA program and its associated ACA health coverage expansion, and ending birthright citizenship for the children of some immigrants could limit access to health care for immigrant families, negatively impact their daily lives and well-being, and increase fears and confusion about participating in programs, including health coverage.

Results: We identified three themes as factors that influence caregivers’ access to developmental services: quality of medical and educational experiences, caregiver knowledge and beliefs about SCD and development, and caregiver preferences for developmental services. Most caregivers denied barriers to obtaining developmental services for their child, whereas providers acknowledged numerous barriers for families. Caregivers and providers shared that a positive caregiver-provider relationship facilitates access. Caregivers reported that there was limited attention to SCD within the hospital system and broader society. Caregivers displayed limited knowledge of early development, and providers identified these knowledge gaps as a barrier to utilizing developmental services. Caregivers expressed a strong interest in SCD education and community building.

Methods: Interview data were collected from educational and medical providers ( n = 15) and caregivers ( n = 15) of children aged 4–6 years with SCD at a single center and the surrounding area. Caregivers completed questionnaires about their child’s background/medical history, caregiver depression (PROMIS SF v1.0-8a), and caregiver knowledge of early development (Knowledge of Infant Development Inventory). A convergent design was used to integrate the qualitative and quantitative data.

Introduction: Sickle cell disease (SCD) is a monogenic blood disorder characterized by neurodevelopmental delays. Most children with SCD do not receive developmental services due in part to disparities in care access. To inform the design of a developmental intervention for children with SCD, we evaluated factors that influence access to developmental services.

1 Introduction

Sickle cell disease (SCD) is a monogenic blood disorder that impacts nearly all systems of the body (1). Approximately 100,000 individuals are estimated to have SCD in the United States, the majority of whom are African American (2). The brain is particularly vulnerable to the effects of SCD due to poor oxygen delivery, resulting in cerebrovascular insults (3–5) and accelerated white matter loss (6). Early and progressive neurocognitive deficits are often seen in patients diagnosed with SCD, negatively impacting academic performance (7, 8).

Individuals living with SCD have less access to comprehensive care compared to individuals with other chronic diseases due to a lack of SCD-trained providers and health insurance barriers (9). These disparities translate to low rates of preventive care, such as immunizations (10) and transcranial doppler screening for stroke prevention (11). Disparities in healthcare access extend to developmental services that may remediate developmental delays in young children with SCD, and better prepare them for academic success. The academic consequences are dire, as children with SCD fall below normative expectations on achievement assessments and have a high rate of grade retention (12). Developmental services include speech, occupational, physical and other early intervention therapies, as well as classroom-based interventions. Because neurocognitive deficits become more apparent with age (13, 14) and early intervention tends to be more effective (15, 16), developmental services for SCD should use a preventive approach to alter the developmental trajectory rather than a corrective approach after functional impairment occurs (17, 18). However, despite the benefits of early interventions, most children with SCD do not receive developmental services to address delays (19).

Many families with a child with SCD experience a double burden as members of a historically marginalized group coping with chronic illness (20). Although some facilitators and barriers are known to impact medical care for SCD families, no studies have provided a comprehensive view from both caregivers and providers of determinants affecting utilization of developmental services. Reported facilitators to medical care include convenience of combined appointments (i.e., having subspecialists knowledgeable about SCD present together) and the ability to communicate with knowledgeable staff about SCD concerns (21). Reported barriers to medical care include perceived discrimination, the distance from and transportation to SCD centers, financial strain, missing work, children missing school, and lack of provider knowledge and comfort (21, 22). Previous studies offer insight into barriers into medical care, but do not provide insight into barriers to developmental care, which differs from medical care in a variety of ways, not limited to treatment location, referral process, and provider training. There is a significant need to implement developmental interventions for children with SCD that are both feasible and acceptable as prior intervention trials have struggled with engagement and adherence (23, 24). A better understanding of caregivers’ access to and willingness to obtain developmental services could help providers tailor services to the SCD population.

This investigation uses the Health Equity Implementation Framework (25) (HEIF) to identify determinants of access to developmental services specific to the SCD community. Unlike previous studies on facilitators and barriers that impact care (21, 22), this study incorporates both caregiver and provider perspectives. We used a convergent mixed methods design (26) to better understand what factors impact access to and preferences for developmental services. The current study has three aims: (1) identify barriers and facilitators to developmental treatment faced by caregivers of children ages 4–6 with SCD; (2) understand which factors inform decisions about medical, developmental, and educational interventions for caregivers of young children with SCD; and (3) identify caregiver preferences that will increase developmental treatment utilization for young children with SCD.

2 Materials and methods

2.1 Participants and procedures

Medical and educational providers and caregivers of children with SCD ages 4–6 were recruited from the Memphis area. Snowball sampling was used to find providers familiar with the unique developmental needs of young children with SCD, starting with providers at St. Jude Children’s Research Hospital and a local early childhood education provider. Providers at these organizations recommended colleagues with experience providing or connecting families to developmental services, and/or experience working with families of young children with SCD. Caregivers were recruited through the Sickle Cell Clinical Research and Intervention Program (SCCRIP), a longitudinal cohort study of patients with an SCD diagnosis (27). Caregivers were eligible if they spoke English and had a child enrolled in the cohort study between the ages of 4 and 6 years with any SCD genotype.

This was a descriptive cross-sectional study. We used a convergent mixed methods design, involving parallel collection of both quantitative and qualitative data. This approach was used as both quantitative and qualitative domains of interest were identified a priori, consistent with the HEIF framework (25). All HEIF domains were examined qualitatively and quantitatively either through frequency counts or formal questionnaires. Certain themes arose from interviews that were not captured quantitatively, and interpretation was primarily based on qualitative data collected. Interviews with providers were conducted over a virtual video platform or over the phone and were audio recorded. All caregiver interviews were conducted over the phone and audio recorded. Audio recording of interviews was granted by participants during the informed consent process. Interviews were transcribed verbatim using a third-party service and checked for accuracy by two study team members. Caregivers also completed four questionnaires: two descriptive questionnaires about their child’s background and medical history, a questionnaire about caregiver depression, and a questionnaire testing the caregiver’s knowledge of early development. The procedures of this study were approved by the Institutional Review Board at St. Jude Children’s Research Hospital.

2.2 Qualitative interviews

Two semi-structured interview guides, one for caregivers and one for providers, were developed based on the HEIF used by Woodward et al. (25) to study barriers and facilitators to treatment for the hepatitis C virus. The HEIF integrates healthcare disparities and implementation science concepts into a framework that considers barriers and facilitators to intervention implementation at the following levels: recipients (patients and providers), clinical encounters, innovation/characteristics of treatment, and the context of the health care system. This framework allows for the identification of disparities in access to care and racially disparate decisions by providers (28). Caregivers were asked about potential barriers and facilitators to developmental services for their child with SCD. Caregivers with children who had not received developmental services were asked what they would expect from a developmental service based on their experience with their child’s medical treatment or education. Providers were asked the same questions and answered based on their knowledge of developmental services and their interactions with caregivers. Additional questions for caregivers were included to learn about their knowledge of SCD and development and their preferences for a proposed intervention (see Supplementary File 1 and Supplementary File 2 for interview guides).

2.3 Quantitative measures

2.3.1 Depression

The Patient Reported Outcomes Measurement Information System (PROMIS) is a collection of item banks made by the National Institute of Health and includes a depression questionnaire about negative mood, decrease in positive affect, information processing deficits, negative views of the self, and negative social cognition. The PROMIS SF v1.0 – Depression 8a, an 8-item depression short form, is highly correlated to the full depression bank (r = 0.96) (29). Items have five response options (Never, Rarely, Sometimes, Often, and Always), and response pattern scoring is used to calculate a raw score that is transformed into a T-score with a general population mean of 50 and standard deviation (SD) of 10. A T-score above 60 indicates moderate depression, and a T-score above 70 indicates severe depression (30). The general population used to norm the T-scores (n = 11,796) is similar in gender, age, race/ethnicity, and education to the 2010 U.S. census (31).

2.3.2 Knowledge of development

The Knowledge of Infant Development Inventory (KIDI) is a 58-item questionnaire that assesses parent knowledge of infant norms and milestones, principles of development, parenting strategies, and health and safety (32). Item responses include Agree, Disagree, and Not sure for 39 questions, and Agree, Younger, Older, or Not sure for 19 questions that make a declarative statement like “Babies say their first real word at 6 months.” Two response scores were calculated (Attempted and Accuracy). The KIDI’s internal consistency across a diverse sample from 10 studies (N = 820) is acceptable (α = 0.88) (32). A study by Hamilton and Orme (33) found that the KIDI had high convergent validity with the Knowledge of Child Development Inventory (r = 0.68) and the Parent Opinion Question (r = 0.51).

2.3.3 Demographic and medical information

A demographics questionnaire and a medical history questionnaire were used to gather background information about the sampled caregivers. The demographics questionnaire asked about caregiver characteristics including education, marital status, income, health care coverage, race, and ethnicity. The medical history questionnaire asked about the child’s SCD-related complications and treatment, prenatal and birth history, and developmental and educational history.

2.4 Qualitative analysis

A qualitative content analysis was performed on the interview data to identify descriptive themes. After the data were transcribed and assessed for quality, each transcript was coded by two independent coders (MT and EM) using Delve Tool software (34). Two coders used a deductive approach for questions derived from the HEIF (25) and questions about caregiver preferences on the proposed interventions. First, a codebook was created that aligned with the barrier and facilitator domains of the HEIF and questions specific to medical experiences and preferences. In addition to the a priori codes, other codes for recurring topics discussed throughout the interviews were inductively derived, including “Caregiver decision making” and “Beliefs about learning and academics.” The two coders met during and after their independent coding processes to discuss their findings and resolve coding discrepancies.

After the codes for each transcript were agreed upon by the two coders, the data were visually reorganized by code in a categorization matrix (35). The categorization matrix is an arrangement of summarized participant responses with a row for each participant and a column for each code. The matrix enabled condensing of the data (i.e., whether a barrier was or was not endorsed, and whether a facilitator was identified). The data were further abstracted from the matrix as the coders analyzed the code columns to write an interpretive summary of responses. Responses were also analyzed by row to identify patterns within individual responses. Analysis of the interpretive summaries allowed for the re-contextualizing of data into descriptive themes that described the experiences, beliefs, and preferences of providers and caregivers (36). To further analyze within each theme for subthemes, responses were transformed into frequencies of endorsed barriers and facilitators as detailed below.

2.5 Quantitative data analysis

Responses to barrier questions derived from the HEIF were quantified by dichotomizing responses that did or did not endorse a specific barrier and analyzed for frequencies. Responses to the inductively-derived codes of “Medical knowledge of SCD,” “Knowledge of SCD and development,” “Sources of knowledge,” “Perceptions of society,” and “Decision making” were quantified for the frequency of topics discussed within each code. For the PROMIS, descriptive statistics were calculated for caregiver responses. For the KIDI, an accuracy score was calculated from the ratio of the total correct of the total attempted items per participant. Mean and SD were used to analyze the accuracy and over/underestimate scores from the KIDI. For the medical and demographic questionnaires, frequencies were used to describe the categorical data and mean and SD were used to analyze the continuous data.

2.6 Data integration

A convergent design was used in this mixed methods analysis (26), beginning with the independent analysis of qualitative and quantitative data, followed by the integration of the two data sets to identify ways in which the two methods of caregiver reporting confirm, contradict, or expand on caregiver experiences. The transformation of interview responses into frequencies informed the construction of descriptive themes. A basic joint display (37) report transformed interview data, interview quotes, and survey data, while also showing the results in the context of the HEIF domains.

3 Results

Fifteen providers with a range of 5–29 years of experience in the medical, education, and/or advocacy sectors participated in interviews. Roles of the providers included hospital-school coordinators who advocate for medical and educational needs (n = 4), hospital teachers (n = 2), school leadership from the hospital and the community (n = 4), early childhood health and disability specialists (n = 2), an adult SCD advocate, a hematologist, and a hematology administrator. Seventeen caregivers were enrolled and fifteen caregivers completed surveys and interviews (2 caregivers were lost to follow up). Caregivers ranged in age from 23 to 40 years (Mean = 29.4), were primarily female (94%), and all identified as Black or African American. Most caregivers had children who attended preschool (80%) and/or received a developmental service (60%). Characteristics of the caregivers and their children can be found in Table 1.

Table 1

Table 1. Caregiver and child characteristics.

The study team identified three themes as factors that influence caregivers’ access to developmental services: quality of medical and educational experiences, caregiver knowledge and beliefs about SCD and development, and caregiver preferences for developmental services (Figure 1).

Figure 1

Figure 1. Results of the thematic analysis. The themes represent factors that influence caregivers’ access to developmental services.

3.1 Theme 1: quality of medical and educational experiences

3.1.1 Providers reported that caregivers encounter significant barriers

When asked about specific barriers to developmental care, most providers endorsed at least some of the barriers within each HEIF domain (Table 2). The barriers most frequently endorsed were the patient’s housing or living situation (n = 14), caregivers’ unawareness that treatment exists (n = 13), lack of media attention around treatment (n = 12), caregiver stress or depression (n = 12), and lack of transportation (n = 12). Providers also shared experiences of caregivers not understanding a developmental diagnosis or treatment and/or not believing a treatment was necessary.

Table 2

Table 2. Caregiver experience with barriers to developmental treatment.

Some providers further stated that specific barriers are related to systemic issues in hospitals and schools. One such issue is miscommunication between providers and caregivers about why a child needs services or how services can be helpful. This issue arises particularly when providers speak too quickly or use jargon. One health services specialist working in early childhood education explained how she helps caregivers ask questions:

“We actually have forms that we give to parents that, that ask doctors specific questions.. we have found that some parents do not know what to ask. I’ve actually had parents – I say, ‘Well, when you get there, this is my cell number. Call me and hand the phone to the doctor.’” (Provider 16)

Another barrier expressed primarily by education providers is caregiver mistrust of the medical or educational system. Educators described conversations with caregivers who associate early intervention with the stigma around special education. One educator explained that caregivers who received special education services before schools adopted inclusion models may avoid developmental services out of fear that their child may be labeled or ostracized.

Providers also discussed health and socioeconomic inequalities faced by caregivers of children with SCD and how such inequalities impact caregiver motivation, mental health, and trust in developmental providers. One provider explained how low caregiver wellbeing impacts access to services:

“The stress, you know, you have so many stress factors, living in the high crime area, living in a food desert, not having a car, uh, living in an abusive situation, not having enough money to buy food. Yeah. I mean, of course… your hierarchy is not about services for your child; it’s about everyday existence.” (Provider 12)

3.1.2 Caregivers endorsed few barriers but acknowledged the difficulty of balancing priorities

Unlike providers, most caregivers endorsed few, if any, of the HEIF barriers (Table 2). For example, most providers endorsed some or all of the barriers in the patient factor of the HEIF domain, but the only patient-factor barriers that were endorsed by more than one caregiver were distance from the hospital or clinic (n = 3), transportation (n = 3), trusting providers (n = 2) and experiences of stress or depression (n = 3).

To better contextualize caregiver responses to the patient-factor HEIF questions, we asked caregivers to complete a brief depression symptom inventory (PROMIS SF V.1- Depression 8a) Caregiver scores ranged from 38.2 to 64.2 with a mean of 46.1 (SD = 9.4), which is below the standardized T-score of 50 in the general population. Two caregivers (13.0%) scored in the clinical range for depressive symptoms. Another patient factor that may impact access to developmental services is the severity of the child’s SCD symptoms. The majority of caregivers reported that their child had experienced SCD-related pain (n = 13, M = 86.7%) and that their child had been hospitalized for SCD complications before the age of 3 (n = 12, M = 80%).

Caregivers described other personal barriers that were not specifically asked about in the interview. The most discussed personal factors that interfered with their child’s treatment were the caregivers’ own medical conditions and the inability to miss work for appointments. One caregiver explained how their family manages medical appointments:

“Um, maybe my own like health issues and appointments, but I have been, so far everything has worked out as far as scheduling wise. Um, so if I have an appointment or an issue going on myself, then her dad would just step in. Um, it might cost him to take some time off work, but he would step in to make sure she gets her appointment.” (Caregiver 7)

This quote demonstrates a reality described by many caregivers – the problem solving required to prioritize their child’s treatment. A caregiver explained how her efforts to balance her job with her child’s medical treatment has led to negative internalizing:

“Having to lose so many jobs to take care of my child like it just makes you feel like nobody cares about your child but you. But you have to pay the bills so it is really depressing not being able to keep one.” (Caregiver 13)

Few characteristics of treatment were identified as problematic by caregivers who have obtained developmental services for their child (Table 2). All caregivers with experience with early intervention or another developmental service spoke positively about the treatment and providers. Positive comments included that early intervention was highly engaging to their child, that the providers were patient, that providers included them in activities, and that they observed improvement with their child.

Caregivers without experience with developmental services endorsed few concerns about the treatment itself or its accessibility, with two exceptions. Three caregivers expressed that they would expect the cost of the treatment to be a barrier to care, and two caregivers expected to feel misunderstood by a developmental provider. As one of them explained,

“I feel that providers don’t really take personal experiences into consideration when they’re offering treatments… like if you’re not just taking their advice or wanting to like give medicine that they’re suggesting for your child, I feel like they don’t really listen to your point of view.” (Caregiver 5)

3.1.3 A positive caregiver-provider relationship facilitates access

Both providers and caregivers spoke about how the relationship between caregivers and providers facilitates caregiver access to services. Caregivers explained their desire to be heard and understood by providers, and providers explained how trust increases the likelihood that caregivers will pursue treatment for their child. Caregivers stated that providers need to listen to caregivers, make them feel comfortable asking questions, and ask families for feedback. One caregiver described the positive communication with her provider as follows:

“…they always make us feel comfortable… I guess, the way they communicate with us. Um, they tell us everything. They sit down. That’s the number one thing … They make us feel like, you know, we’re just having a, a regular conversation and it’s not uncomfortable” (Caregiver 2)

Providers also discussed the need for strong communication between caregivers and providers, and some emphasized the need for providers to speak clearly and concisely. One provider explained that, ideally, the relationship between providers and caregivers is one of partnership:

“I can learn from you and you can learn from me, kind of shared, um, thought partner model would help caregivers, um, kind of let their guard down and be open to, um, services and listening to what’s going on and really asking the parent or caregiver their experience and… reminding them, you know, they’re the expert with their child and building up their confidence in the partnership and work.”(Provider 10)

Another provider explained how caregiver motivation, or “buy-in,” along with trust in providers, is essential for children who need early intervention services:

“I believe buy-in is essential when it comes to intervention support. One, the parent has to have buy-in that their child actually needs support. And then, two, that the parent has to have a trust factor that the provider is actually going to support their child in that area… I feel a way to alleviate that is for outreach to be paired in tandem with the referral, um, kind of like an appropriate handoff, you know, instead of a call this number.. kind of like, we’re going to walk with you in this journey until everyone agrees that this is, this is happening.” (Provider 8)

As this provider noted, caregivers who are highly motivated to secure developmental services for their child may still struggle to navigate enrollment in early intervention or school services. Providers explained that developmental services are more accessible for patients who have a strong connection to a school or hospital system with staff dedicated to helping parents navigate those services. This statement was supported by caregiver anecdotes, as many caregivers who had obtained services for their child credited hospital staff or school educators for helping them schedule appointments.

3.2 Theme 2: caregiver knowledge and beliefs about SCD and development

3.2.1 Breadth of knowledge about SCD varied by professional and personal experience

The most commonly discussed features of SCD were the associated pain and risk of stroke. Most providers could provide more precise answers about the developmental aspects than about the medical aspects of SCD, as most providers had a background in education rather than medicine. Providers identified several developmental delays that children with SCD may be at higher risk for, including issues with memory, attention, adaptive behavior, self-regulation, processing speed, social learning, speech/language, and motor skills. The concerns most often addressed by providers involved attention and speech. Providers also volunteered explanations for why such developmental delays may occur in children with SCD, including pain as a barrier to learning, time in the hospital or low attendance at school, and silent cerebral infarcts or stroke. Four providers were hesitant to attribute developmental delays to SCD itself, noting that the presence of delays in children with SCD is often confounded by other variables, such as low income or limited access to high-quality education. Regarding associated delays, one provider said,

“…a lot of it is, maybe not disease related, but complicated by disease.” (Provider 12)

Most caregivers (80%) had heard of hydroxyurea and more than half (53%) had heard of TCD. Most caregivers who were aware of hydroxyurea or TCD attributed their familiarity to their child’s use of hydroxyurea or TCD. Caregivers also offered knowledge about hydroxyurea, with three noting that it can help with avoiding pain crises or hospitalization and three explaining that it is used to prevent blood cells from sickling. Caregivers were less descriptive about their understanding of TCD, with only two caregivers explaining its use to detect stroke.

Four caregivers were unaware that children with SCD are at a higher risk of delays in development than are their peers. Four other caregivers were aware that children with SCD are at risk for developmental delays but did not explain further. Three caregivers noted that speech may be impacted by SCD. Walking delays, difficulties with focus or memory, and problems with everyday activities were each mentioned once.

The mean accuracy score on the KIDI (total correct divided by total attempted) was 61% (SD = 0.07). In comparison, the mean KIDI accuracy score was 83% (SD = 0.16) among participants in a large study of infant/child development (n = 1,358), conducted in the same metropolitan area as the current study (38). Caregivers’ accuracy on the KIDI was 1.78 SD below the accuracy observed in the prior study, suggesting knowledge gaps among our sample of SCD caregivers. The mean accuracy score of the current sample was also 1.20 SD below that of mothers whose children attended Head Start (n = 207, M = 70.7, SD = 11.4) (32).

3.2.2 Knowledge comes from direct and professional experiences

Participants learned about SCD, developmental delays, or treatment for developmental delays in one of four ways: direct experience, professional experience, expertise of medical or educational professionals, or formal education. Direct experience was the most frequently discussed source of knowledge, with providers describing workplace interactions with children who have SCD and caregivers describing their own child or family member’s experience. Most caregivers who were aware of TCD or hydroxyurea attributed this knowledge to their child’s medical experience. Professional experience was largely discussed by providers, who learned about SCD by collaborating with other health professionals. Most caregivers cited expertise from medical or educational experts as their source of knowledge about SCD and development, with many emphasizing their reliance on the hospital’s doctors and school program to learn about these topics. One caregiver described how her child’s hospital shared information in a way that helped her to retain the new knowledge and build a relationship with hospital staff:

“Each visit that I go to [children’s research hospital], they teach me a little bit more every time. It’s kind of, it’s, it’s so much better than, you know, slamming all that knowledge on a parent when we first, you know, when we first get there.” (Caregiver 13)

Formal education as a source of knowledge about SCD was only mentioned by one provider and one caregiver.

The type and specificity of knowledge about SCD differed between providers and caregivers. Providers had a wider breadth of knowledge about potential risks of SCD, whereas caregivers had a more intimate knowledge of day-to-day life with SCD that was specific to their child’s medical and developmental needs.

3.2.3 Society lacks SCD awareness

Most providers did not endorse the statement that society lacks caring for those living with SCD. However, all providers who responded this way clarified their response, stating that people with SCD do not get the attention that they need from society. Nine of those providers said that there is a lack of knowledge about people living with SCD, and one provider described SCD as a low priority to those who disseminate knowledge:

“…most of the people with money and resources don’t look like the people with sickle cell disease.. I can’t say it’s a lack of caring about sickle cell disease, but more about… other priorities.” (Provider 12)

Most providers noted a lack of media coverage about SCD, and multiple providers linked the lack of knowledge and media coverage to the marginalization of Black people in society.

Most caregivers said there was not a lack of caring, but several noted that there is a lack of knowledge about the disease. Some caregivers further explained how the lack of knowledge in society is compounded by the invisible nature of the disease, such that others often trivialized their child’s experience with the disease. One parent explained that her answer was informed by experiences of bias against her child with SCD at the hospital and at school. Caregivers almost unanimously said that there is not enough media coverage about SCD or representation of those living with the disease. One caregiver emphasized how the lack of awareness puts the burden on her to justify her child’s needs:

“You mostly hear about children with cancer, you don’t too much hear anybody trying to help anybody with sickle cell… When I had my son, nobody, they, they heard of it, but they just don’t know anything about it. So, I’m having to constantly tell people what struggles he go through… It’s like nobody cares.” (Caregiver 13)

Providers and caregivers almost unanimously called for increased awareness of SCD and increased media representation for those who live with it.

3.3 Theme 3: caregiver preferences for developmental services

3.3.1 Caregivers make decisions based on quality, provider trust, and accessibility

Providers and caregivers identified three factors that would influence caregiver acceptance and participation in a developmental education program for preschool-aged children with SCD. All 15 caregivers expressed interest in developmental education programs. Although interested, most caregivers cautioned that they would need to consider additional factors before committing to participate. When asked about how they would make a final decision about participation, their responses fell into the following categories: quality of the program, recommendations, and logistics. Caregiver responses regarding the quality of the program included discussions of the program’s content and its perceived relevance to their child’s needs. For example, one caregiver explained,

“…me personally, um, I just ask more about the program, what the program consists of… I would just want to see what I’m putting me and my son into it before I just jumped into the – I want to make sure it’s something good for him and not just okay for him.” (Caregiver 1)

Some caregivers placed high value on recommendations, explaining that they would be willing to try a program if it was suggested by a professional they trusted. Program accessibility was the most frequently discussed factor in decision making. Caregivers mentioned logistic considerations including work schedule conflicts, childcare needs, virtual or in-person participation, and time constraints. Providers endorsed the same decision-making considerations, but more frequently pointed out access issues such as lack of transportation or lack of technology.

3.3.2 Logistic preferences vary by family

There was variability in how caregivers described the characteristics of a developmental education program that would be most accessible to their family, suggesting that no single format for intervention programming will meet all caregivers’ needs. Although some caregivers were interested in virtual participation, other caregivers stated that they learn better in person. Similarly, some caregivers would prefer to meet regularly on a weeknight, but others stated that their work did not follow a traditional 9 am to 5 pm schedule. To accommodate the diverse needs of families, providers suggested offering virtual/in-person hybrid sessions, offering sessions at multiple times, and providing transportation or daycare to increase in-person attendance.

3.3.3 Caregivers want SCD education and SCD community

Although caregivers had different preferences about the program logistics, they largely agreed on the desired qualitative aspects of the program. Caregivers frequently discussed development and school readiness from an SCD perspective, with a focus on elements to monitor in their child’s development and risk factors common in children with SCD. They also discussed what to expect in kindergarten and how to teach their child to communicate their physical needs to teachers, particularly regarding staying hydrated throughout the day and communicating a pain crisis. One caregiver expressed anxiety about her child being in a larger class with less attention from the teacher:

“So, public school, you know, they don’t really baby them.. working with 20 plus kids… I know he’s not going to have as much attention on him, and I was paying attention to him… having a, a crisis since he’s so little he’s… still learning… what to tell me and how… he feels so that’s a concern of mine. But we’re working with him to try to communicate with us better…” (Caregiver 13)

Another recurring desire from caregivers was to learn about strategies to maintain their own mental health while coping with the stress of their child’s transition to kindergarten. One caregiver explained this need:

“…I’d want more so, like, a support system to show, you know, manners in which that help as a, as a caregiver to, you know, keep moving forward and, you know, the steps that you can take then as much as you’re taking care of the children, but, like, giving us the education on how to keep ourselves whole in the midst of it.” (Caregiver 14)

Caregivers and providers discussed the idea of using a caregiver educational course as a support group. Multiple providers suggested using a coaching or cohort model rather than lectures. When asked who caregivers wanted to learn from, most suggested that the caregiver educational program be taught by a parent of a child with SCD. Caregivers expressed the need to hear from someone who has successfully gone through the process of preparing their child with SCD for school. Some caregivers also stated their willingness to hear from medical or educational professionals in the sessions. As one caregiver explained, parents should lead the session and then incorporate medical or educational professionals who can “back them up on the facts.” Regarding interventions for children, almost all participants agreed that the main criteria for instructors should be experience with early childhood education, but some caregivers suggested incorporating participation of older children with SCD as role models for the younger children.

4 Discussion

Patients with SCD comprise a historically marginalized population that face substantial health disparities (22, 39, 40). To establish an equitable developmental intervention for families of young children with SCD, we conducted a mixed-methods investigation through a health equity lens (25). Through analysis of both qualitative and quantitative data, we identified three broad themes that frame how caregivers and providers view developmental services (i.e., services to promote children’s cognitive, language, and physical development). These themes include the quality of medical and educational experiences, caregiver knowledge and beliefs about SCD and development, and caregiver preferences for developmental services.

There were notable discrepancies in the barriers endorsed by caregivers and providers. Most caregivers did not endorse expecting or experiencing significant barriers to obtain developmental services for their child, whereas providers frequently endorsed numerous barriers for patient families. Providers described negative medical and educational experiences of caregivers. In contrast, caregivers mostly emphasized their own positive experiences. These discrepancies are consistent with prior literature assessing medical adherence in patients with SCD based on caregiver and provider reporting. Caregivers of children with SCD tend to overestimate rates of medical adherence (41, 42) and report fewer barriers to disease management (43) than do providers. Our results suggest that this response pattern extends to developmental services for children with SCD. Caregivers may not endorse these barriers due to stigma and fear of judgement or racism (44, 45). The differing lived experiences of providers and caregivers can lead to feelings of stigma and discrimination among families of patients with SCD (22). These feelings result in strained relationships and limited trust that can impact how barriers are reported (46). Furthermore, caregivers can only provide their own personal experience, whereas providers may have observed a wider range of barriers among caregivers. Conversely, although providers may have observed certain barriers in a few families, they may generalize these barriers to all families of children with SCD. Discrepancies in racial and ethnic backgrounds between providers and caregivers may also partially explain their experiences with these barriers.

Several caregivers highlighted the difficulties of balancing priorities when seeking developmental services for their child. For example, some caregivers noted that they often must prioritize their child’s medical care or their own medical care, and others shared that it was difficult to maintain employment because their jobs do not provide the flexibility needed to attend appointments. Some caregivers (n = 3) and most providers (n = 12) shared that transportation or distance from the provider was a barrier to care. To overcome these barriers, developmental programs for children with SCD may prioritize virtual/telehealth services and offer more services outside working hours. Virtual/telehealth services may also have barriers due to limited internet access, but these issues can be addressed by providing hotspots or other low-cost internet options. Telehealth-based developmental services have been deemed feasible and acceptable for underserved and low-income families (47, 48). Telemedicine approaches for children and adolescents with SCD have received high levels of satisfaction from patients, providers, and caregivers (49–51).

Caregivers of young children with SCD showed limited knowledge of infant and child development, and providers identified these knowledge gaps as a barrier to accessing services. On a standardized questionnaire (KIDI) assessing parent knowledge of infant norms and milestones, principles of development, and parenting strategies, the caregivers in our study showed more limited knowledge than other caregivers living in the same metro area or caregivers with children enrolled in Head Start (32, 38). If caregivers are unfamiliar with normative expectations and principles of development, they may struggle to identify whether their child is delayed or to implement positive parenting strategies. Many caregivers were also unaware that children with SCD are at a higher risk of experiencing developmental delays or how these delays may manifest. Multiple providers reported observing these knowledge gaps and noted that a lack of knowledge about child development may limit follow-through with developmental services. Specifically, providers raised concerns that caregivers may not acknowledge that their child has a developmental delay or may not believe that such delays warrant further action. The discrepancy between caregivers’ perceptions and normative expectations highlights a significant barrier to the utilization of developmental services. If caregivers are referred for a developmental evaluation or service, follow-through may be poor if they do not view their child’s development as a concern. Caregivers of young children with SCD need education on normative child development and parenting strategies, but knowledge alone is unlikely to lead to significant behavior change (52). Instead, providers can use strategies such as motivational interviewing (53, 54) to promote caregivers’ self-efficacy (55, 56) allowing caregivers to feel confident in their ability to follow through with provider recommendations. Culturally tailored parent education programs that utilize motivational interviewing and emphasize cultural pride may be particularly effective (57, 58).

Although providers and caregivers gave contradictory responses about barriers to developmental services, the two groups agreed on facilitators to participation. Both groups highlighted the importance of a positive caregiver–provider relationship to facilitate access to developmental services. Previous studies have documented distrust and poor communication between families of patients with SCD and their providers (59–61). Poor caregiver–provider communication is associated with more hospitalizations and worse health literacy (62). Thus, to facilitate access and engagement in developmental services, the medical team and developmental providers must use communication strategies that build trust. This may be accomplished by implementing family-centered communication, which involves obtaining and understanding the families’ perspectives, considering psychosocial and cultural context, and reaching a shared understanding of health concerns and treatment options (59, 63). Interventions emphasizing family centered communication engage families as partners in designing and implementing interventions and seek routine feedback.

Few caregivers reported symptoms of depression on the PROMIS and most denied stress or depression as a barrier to accessing services. In contrast, most providers endorsed caregiver stress and/or depression as a barrier to accessing services. Compared to normative expectations, both caregivers of (64) and child/adolescent (65) patients with SCD do not display elevated rates of depression. Yet, caregiver stress and depression is associated with their child’s pain intensity and functional impairment (64), which may become more apparent as their child grows older. Assessing caregiver mental health and promoting coping strategies should be incorporated into family-centered communication (59, 63) with providers.

Caregivers consistently endorsed a strong preference to learn from other families and to build a community of caregivers with shared experiences. The desire to learn from other caregivers or patients with SCD is consistent with findings from other studies (66, 67). These findings may reflect cultural values, as African Americans families tend to be more communalistic and value interdependence more than do European American families (68). Caregivers noted that other families with SCD can comment on the challenges of the lived experience and provide solutions that are practical and approachable. Caregivers expressed a desire to interact with other families for social connectedness and community building, as they experience feelings of isolation related to their child’s SCD diagnosis and have limited interactions with other families with shared experiences. These feelings of isolation were exacerbated by the perception that there is a lack of caring or media coverage of SCD within the hospital system and broader society, due in part to racism. Caregivers expressed the burden of having to frequently educate others about SCD. Families living with a chronic disease may develop a strong social identity related to the disease (69–71). Peer-to-peer or group interactions that build upon this identity provide a sense of shared meaning, support, and efficacy that can reduce depression and loneliness (72). Thus, developmental services that foster these connections among caregivers may have better engagement and may more successfully promote caregiver self-efficacy and mental health.

By collecting information from both providers and caregivers, we obtained unique perspectives on developmental services for young children with SCD. The convergent mixed-methods approach incorporating standardized quantitative assessments and qualitative data comprehensively captured potential barriers and facilitators and caregiver knowledge of developmental norms. However, several study limitations exist. Not all caregivers had experience with developmental services and therefore could only relay expectations based on medical care or preschool experiences for their child. We intentionally included caregivers with or without these exposures to gain perspectives from a diverse sample of caregivers rather than from only those who had concerns about their child’s development. All data were collected from caregivers served at a single institution and from providers in the surrounding area, potentially limiting generalizability of the results. Caregiver and provider experiences may differ based on geographical location, hospital resources, and broader community resources. Therefore, further investigation is needed through multi-center studies using diverse geographic sampling to evaluate if results are consistent across centers.

5 Conclusions

Patients with SCD and their families experience health disparities that negatively impact quality of life. Using the Health Equity Implementation Framework (25), we identified determinants of access to and quality of developmental services according to caregivers and providers. There were notable discrepancies in barriers to care based on caregiver and provider responses. Caregivers of young children with SCD showed limited knowledge of infant and child development, and providers identified these knowledge gaps as a barrier to accessing and utilizing services. To increase engagement and follow-through of developmental services, interventions should use family-centered communication to facilitate shared understanding and incorporate peer support to foster self-efficacy among caregivers. These findings will support the creation of accessible developmental interventions for children with SCD.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics statement

This study was approved by the St. Jude Children’s Research Hospital institutional review board. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

MT: Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing – original draft, Writing – review & editing. EM: Data curation, Formal analysis, Investigation, Project administration, Writing – original draft, Writing – review & editing. NC: Data curation, Writing – original draft, Writing – review & editing. EK: Conceptualization, Writing – original draft, Writing – review & editing, Methodology. MF: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. JSP: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. HMC: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. AAK: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. JSH: Conceptualization, Methodology, Writing – original draft, Writing – review & editing. AMH: Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – original draft, Writing – review & editing.

Funding

The author(s) declare that financial support was received for the research and/or publication of this article. This work was supported by the American Lebanese Syrian Associated Charities (ALSAC). AMH was supported by K23HL166697 (National Heart, Lung, and Blood Institute) during the time of this study. AAK was supported by K12HL137942 and K24HL148305 (National Heart, Lung, and Blood Institute) during the time of the study.

Acknowledgments

The authors thank the caregivers and providers for their study participation.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Generative AI statement

The author(s) declare that no Generative AI was used in the creation of this manuscript.

Publisher’s note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fped.2025.1530457/full#supplementary-material

Supplementary File 1 | Caregiver interview guide. This semi structured interview guide was used with each of the caregivers interviewed for the present study.

Supplementary File 2 | Provider interview guide. This semi structured interview guide was used with each of the providers interviewed for the present study.

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By: Richard J. Chung, MD, FAAP

If your teenage child is dealing with anxiety, depression or any other mental health concern right now, you’re not alone. More than three years after the American Academy of Pediatrics (AAP) joined with other organizations to declare a national emergency in youth mental health, many teens are still struggling.

Still, you may wonder whether the symptoms are part of the biological and social changes all young people go through on their way to adulthood, or something more. As a parent or caregiver, how do you know when to talk with your teen and their doctor about mental health?

Read on to learn more about teen mental health, including signs your child is struggling and may need more support.

You can also visit the AAP YouTube channel for a series of videos for teens on mental health. The videos address topics including depression, anxiety, eating disorders, self-harm and other topics. Share with someone you care about:

Pressures teens face

Youth mental health experts raised concerns about the extreme pressures on children and teens during the COVID-19 pandemic. Yet the lasting effects of school closures and other COVID-related stressors are not the only factors in teen stress. Many young people are also dealing with:

Overwhelming pressure to figure out their future, get good grades or gain admission to elite colleges and universities

The need to be superstars in sports, the performing arts or other extracurriculars

Tough schedules that don’t allow enough time for self-care such as rest, relaxation and unstructured fun

Bullying (whether in person, via social media in the form of cyberbullying, or both)

Persistent fears about climate change, global conflict and other weighty issues

Discrimination based on race, gender, sexual orientation, weight, religion, disability or other factors

Problems related to a poverty or lack of money for safe, stable housing and enough nutritious food

How will I know if my teen is struggling?

The mental health symptoms you might see in your child will, of course, be unique to them. But as a parent or caregiver, you have a good sense of what their “normal” looks like.

Signs your teen may be having mental health difficulties

In addition to more overt symptoms like mood swings, irritability, anger and tearfulness, you may see:

Notable changes in sleep, weight, eating habits or other everyday patterns

Loss of interest in the things they usually love or quitting activities that they enjoy

Withdrawing more than usual from friends, family and community

Canceling plans with their closest friends with little or no explanation

Academic struggles that seem different or more intense: for example, failing quizzes in their favorite subject or refusing to do homework that once would have seemed easy

Running thoughts or worries that won’t leave them alone

A whole new set of friends you’ve never met before

Refusing to talk about what’s bothering them, even after you’ve made it as safe as possible to discuss hard issues openly

Obsession with a certain goal, possibly with the belief that if they don’t achieve it, their life will never be the same

Signs of drug, alcohol or other substance use

Signs of self-harm such as cuts, burns, bruises, etc. that your teen tries to hide or can’t explain fully and credibly

Sexual activity or interest that seems new or more intense than before

Keep in mind that having just one symptom on this list doesn’t mean your teen is experiencing a full-blown crisis. Biological changes, including the hormone shifts all tweens and teens go through, can affect your child’s mood, school performance and more. But if you consistently see one or more of these signs, it’s time to open a conversation about mental health with your teen.

What mental health conditions are most common for teens?

Young people face pretty much the same array of mental health challenges that adults do. However, these are the most common mental health conditions seen in U.S. tweens and teens:

Attention deficit/hyperactivity disorder(ADHD) affects nearly 10% of all U.S. kids aged 3 to 17.

Nearly 9.5% experience anxiety that interferes with their everyday functioning.

Around 4.5% live with depression. In teens, depression may or may not look like the stereotyped tearful blues. Symptoms of depression can sometimes look more like anger/irritability.

Though they are less common, eating disorders such as anorexia nervosa and bulimia nervosa can cause major health problems for teens and young adults. Self-harm,thought to be underreported, is another serious concern for tweens and teens.

Are drinking and drugs part of the problem?

Substance use is very common among teens. It can combine with mental health issues (and in most cases, making them worse).

Around 15% of all high-school students say they have used street drugs such as cannabis, cocaine, inhalants, heroin, meth, hallucinogens or MDMA (also called ecstasy or molly). Some 14% report they have misused prescription opioids. Nearly 30% say they’ve tried alcohol and 14% admit to binge drinking. A frightening 17% got into a car driven by someone who had been drinking, exposing them to a whole new level of danger.

Substance use is a concern all its own—one you should definitely discuss with your teen, even if you don’t see signs of mental health issues. But noticing it alongside mental health symptoms raises extra concern. Drinking and drugs are often used to cope with difficult feelings or circumstances. This can signal deep emotional pain that needs to be addressed.

What role does social media play?

Young people spend a lot of time on sites such as Instagram, Snapchat, TikTok and others. One study found that 90% of teens aged 13 to 18 use multiple platforms, with more than 60% engaging with social media every day.

We are still learning about the ways social media can affect human health, especially among children and teens. Healthy use of social media can foster positive connections. However, some young people may face greater risks for negative effects. See “Social Media & Your Child’s Mental Health: What the Research Says” for insights that can help you consider social media’s impact on your child.

How can I open conversations with my child?

Here are some points to consider as you open the door to discussing your teen’s mental health. Ideally, this should be a a series of ongoing conversations and “check ins” that you have with your child. This can help support your child’s mental health and also give you a foundation for times your child may be struggling more and need more problem-focused support.

Make it safe for your child to discuss tough issues with you. Kids often avoid talking about touchy subjects, especially if they expect to be judged, lectured or punished. If you haven’t already made this clear, affirm that your teen can tell you anything. Emphasize that these conversations will take place in a judgment-free zone. Explain that you want to understand what they’re going through and provide loving support.

Resolve to listen more than you speak. Nothing will send your teen running the other way faster than failing to see and hear them fully. You will need to manage your own fears during the conversation so you can avoid autobiographical listening. This happens when you filter everything through your own life lens instead of listening for deep understanding.

Consider ways to avoid putting your teen on the defensive. Naturally, you can’t be sure how they will react when you ask about their mental health. But fair, factual statements are usually best. Instead of saying, “You’ve been acting really strange these past few weeks,” you could start with an example: “I noticed you hate coming down to dinner lately – and you don’t seem hungry at other times. I wondered if something in your life is making it hard for you to enjoy stuff you usually love, like my killer oatmeal cookies.”

Accept some silence. Your child might not know what to say at first, especially if they’ve been trying to hide how they’re feeling or manage things on their own. People having mental health struggles often feel shame and fear on top of everything else. This can make it hard to open up to anyone (even someone they trust). Explain that even though you’re worried, you can wait for them to think about what they’d like you to know. If they don’t come back to you on their own, try restarting the conversation in a few days.

Realize that mental health stigma still exists. Despite much progress, some people still believe that having a mental health condition means someone is broken, untrustworthy or potentially violent. In fact, many don’t seek mental health treatment because they’re afraid of what others will think of them. If you’re concerned about the harm stigma can do to your teen, this article may help.

What to remember about mental health as you move forward

Mental health is a key part of human health. Parents and teens do not need to feel ashamed or fearful in seeking treatment. It’s no different from getting care for a broken bone, a serious infection or any other major health concern.

Try not to blame yourself for your child’s struggles. Life is hard, and kids are doing the best they can to manage the pressures they face (just as you are, too). Show compassion for yourself and your child as you move forward.

Even if you have a history of mental health issues yourself, you are not the root cause of your child’s difficulties. Showing love, trust and respect for yourself and your teen is the healthiest way to ensure you both find the resources you need.

How can our pediatrician support us?

Your pediatrician cares about your child’s health and has helped many other parents and caregivers with mental health concerns. Your pediatrician also knows about local resources you can tap to support your teen, now and throughout the healing process.

Pediatricians can explain treatment options, including medications that might help. They can also refer you to mental health specialists who can evaluate your teen. In this way, your pediatrician will become part of a care team that can help you create a treatment plan, as well as a crisis plan that spells out what you will do if things get worse for your child.

What if my teen is having thoughts of suicide?

Suicidal thoughts or actions should NEVER be ignored. If your teen is in crisis right now, call The 988 Suicide & Crisis Lifeline or text ‘TALK” to 741741. Trained lifeline staff will help you figure out immediate steps to protect your child.

If your teen is thinking about suicide but not in crisis, it’s still vitally important to get help. Call your child’s pediatrician or mental health provider right away to find resources and plan for appropriate treatment and support.

If you’re concerned you might be missing the warning signs of suicide, here is an article that may help.

Proactively promote mental health & self-care

Also keep in mind that mental health is not just about responding to problems. It is important to promote positive mental health and resilience in everyday, proactive ways.

Even if your teen is doing fine, help them find time for self care and mood-boosting healthy habits. Make time to enjoy each other as a family. Positive activities and relationships can have a protective, “scaffolding” effect on mental health.

We all have good days and bad days, just as days when we feel healthier than other times. Mental health should stay on our radar; promoting it should be among our day-to-day goals.

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