Advertising Disclaimer »

Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

This policy is a revision of the policy in

From the American Academy of PediatricsClinical Report

Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families

Gerri Mattson, Dennis Z. Kuo, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH and COUNCIL ON CHILDREN WITH DISABILITIES
Pediatrics January 2019, 143 (1) e20183171; DOI: https://doi.org/10.1542/peds.2018-3171
Download PDF

Abstract

Children and youth with special health care needs (CYSHCN) and their families may experience a variety of internal (ie, emotional and behavioral) and external (ie, interpersonal, financial, housing, and educational) psychosocial factors that can influence their health and wellness. Many CYSHCN and their families are resilient and thrive. Medical home teams can partner with CYSHCN and their families to screen for, evaluate, and promote psychosocial health to increase protective factors and ameliorate risk factors. Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families. A team-based care approach may entail collaboration across the care spectrum, including youth, families, behavioral health providers, specialists, child care providers, schools, social services, and other community agencies. The purpose of this clinical report is to raise awareness of the impact of psychosocial factors on the health and wellness of CYSHCN and their families. This clinical report provides guidance for pediatric providers to facilitate and coordinate care that can have a positive influence on the overall health, wellness, and quality of life of CYSHCN and their families.

  • Abbreviations:
    AAP —
    American Academy of Pediatrics
    ACE —
    adverse childhood experience
    ADHD —
    attention-deficit/hyperactivity disorder
    CMC —
    children with medical complexity
    CYSHCN —
    children and youth with special health care needs
    NSCH —
    National Survey of Children’s Health
    SDH —
    social determinants of health

    • Introduction

    Children and youth with special health care needs (CYSHCN) are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required for children generally.”1 This definition has been used to guide the development of family‐centered, coordinated systems of care for children with special needs and families who are served by many public and private health systems, most notably by state Title V block programs administered by the federal Maternal and Child Health Bureau. This report highlights psychosocial internal (emotional or behavioral) and external (interpersonal, housing, and financial) risk and protective factors that impact growth and development, health and wellness, and quality of life for CYSHCN and their families.2 The report offers guidance for pediatric providers to address psychosocial risk and protective factors as part of comprehensive, coordinated care within the medical home. Such care should be delivered in partnership with families, mental and behavioral health providers, child care settings, schools, social services, and other professionals and community agencies across the care spectrum. This report complements other pediatric literature in which screening and surveillance, discussion, and the management of threats to social, behavioral, emotional, and mental health in all children are addressed.3–7

    Changing Epidemiology of CYSHCN

    According to the 2016 National Survey of Children’s Health (NSCH), 19.4% of children and youth have special health care needs.8 This is an increase from 15.1% found in the 2009–2010 National Survey of Children with Special Health Care Needs.9 Racial and ethnic disparities are seen in prevalence, resource use, and survival rates between children who have more medically complex and less complex physical, mental health, and developmental conditions.10–16 Studies reveal that families caring for CYSHCN experience more significant financial and caregiving demands than families of children without special health care needs.8,9,17 Few CYSHCN (3.8%) were reported to be uninsured on the 2016 NSCH, but 29.6% of parents of CYSHCN reported inadequate insurance coverage, compared with 23.6% of parents of children without special health care needs.8

    National surveys have shown a significant increase in the overall prevalence and severity of specific chronic conditions, including asthma, diabetes mellitus, and obesity.11,18–22 The 2015 data from the National Health Interview Survey of the Centers for Disease Control and Prevention show a current overall asthma prevalence of 8.4% among children younger than 18 years. However, there is racial disparity, as non-Hispanic African American children have a 13.4% prevalence of asthma.18 There have been disproportionate increases in the prevalence of obesity and severe obesity among Hispanic, non-Hispanic African American, and American Indian and/or Alaskan native children.20,21,23 There is also a disproportionate increase in type 2 diabetes mellitus, which is believed to be related to increasing rates of obesity,24,25 especially in African American and American Indian and/or Alaskan native children.22–25

    The prevalence of children with medical complexity (CMC), who represent the most resource-intensive subset of CYSHCN, is also increasing. CMC typically include children with congenital, genetic, or acquired multisystem conditions who have multiple subspecialty needs as well as children with a dependence on technology for daily needs.17,26,27 The increase in CMC is possibly related to advances in neonatal care and additional life-saving technologies.28–30 Despite being a small subset of CYSHCN, CMC account for an increasing proportion of pediatric inpatient admissions, with hospitalization rates that doubled between 1991 and 2005.31,32

    The overall prevalence of children with a behavioral, mental health, learning, or developmental disability as their primary chronic health condition is increasing in the United States.6,7 Parent surveys indicate that the prevalence of attention-deficit/hyperactivity disorder (ADHD) (currently 8.9% of children),8 autism spectrum disorders (2.5% of children),8 and bipolar disorders (2.2% among youth)33 have increased over the last 2 decades.6,7,34 ADHD has been found to be highest in the non-Hispanic multiracial group and lowest among Hispanic children. Behavioral or conduct problems are highest among non-Hispanic African American children, and autism spectrum disorders tend to be higher among non-Hispanic white children.7 Speech disorders, ADHD, and learning disabilities are among the leading causes of limitations in play or school for children attributable to a chronic condition, and there has been a receding in importance between 1979 and 2009 in the numbers of respiratory, eye, ear, and orthopedic conditions that cause limitations for children.35

    According to the 2016 NSCH, 42.4% of CYSHCN were reported to have an emotional, developmental, or behavioral issue.8 Behavioral health can strongly influence health and wellness outcomes for all children and especially for CYSHCN.36 Reviews of the literature have shown that children with chronic physical health and developmental conditions are at an increased risk for having co-occurring mental health or behavioral problems or conditions.37,38 Internalizing problems and conditions, ranging from low self-esteem and worry to depression and anxiety, can occur in CYSHCN. CYSHCN also can experience externalizing problems and conditions, ranging from attention problems and defiant and aggressive behaviors to ADHD, conduct disorder, and oppositional defiant disorder.38–40

    Associations of chronic illnesses with psychological and behavioral conditions, such as anxiety and depression, are well described. Such associations may be explained by biological causes, such as inflammatory processes with asthma or diabetes, and psychological causes, such as the stress of living with an adverse and potentially life-threatening condition.36,41,42 Studies in adults reveal that comorbid mental and physical illnesses can result in more health care service needs, functional impairment, and higher medical costs compared with similar physical illnesses without the co-occurring mental health condition.43 Fewer studies have been conducted in children, but 1 study suggests that mental health encounters may encompass a large proportion of outpatient use for some CMC.44 A focus on psychosocial factors and wellness would appear to be an important addition to the overall chronic care model for CYSHCN.36

    Impact of Psychosocial Factors on Overall Health and Wellness for CYSHCN and Their Families

    The biological, physical, emotional, and social environments strongly affect the capacity for children to be healthy over their life course trajectory.45 External psychosocial factors include social determinants of health (SDH), which are defined by the Kaiser Family Foundation and World Health Organization as the “conditions in which people are born, grow, live, work and age.”46 The Centers for Disease Control and Prevention Essentials for Childhood initiative emphasizes that “[s]afe, stable, nurturing relationships and environments are essential to prevent child maltreatment…and to assure that children reach their full potential” over their lives.47 SDH, such as housing stability and food security, have a positive influence on the health of all children and are recommended to be addressed during well-child visits.5,46,48 Studies suggest that poor housing and neighborhood quality are associated with a greater risk for some CYSHCN experiencing a poorer quality of life.49,50 Food insecurity may also impact CYSHCN specifically if they have increased or specialized nutritional needs or dietary restrictions.51

    CYSHCN have higher rates of exposure to adverse childhood experiences (ACEs) or toxic stress (eg, abuse and domestic violence).8 According to the 2016 NSCH, 37% of CYSHCN had 2 or more ACEs, compared with 18% of children without special health care needs.9 These ACEs are often internalized, but the negative effects may be mitigated over time by protective factors.52–54 In addition, children with 2 or more ACEs are significantly more likely to be considered CYSHCN compared with children with no exposure to ACEs.53 The presence of 2 or more ACEs can be linked to exacerbations of their chronic conditions, an increased risk of developing secondary conditions, poor school engagement, and even an increased risk of repeating a grade in school.52,53 Exposure to 2 or more ACEs may be associated with smoking, using drugs, participating in earlier sexual activity, and performing violent or antisocial acts.53,54 If CYSHCN engage in these risky behaviors, there may be an increased risk for additional short- and long-term physical and mental health problems and difficulties with following treatment recommendations as well as an increased risk for poorer health care outcomes.50,55,56 However, studies show that CYSHCN who learn and show resilience may be able to reduce the negative effects of some ACEs. This mitigation of risk occurs especially when supports are provided for key transition points, such as starting child care, school, and work.52,53

    Children with intellectual or developmental disabilities may be at an increased risk for physical, emotional, and sexual abuse and neglect. The reasons may include inadequate social skills, limited capacity to find help or report abuse, lack of strategies to defend against abuse, or increased exposure to multiple caregivers and settings.57,58 Additional challenges can occur if parents of children with disabilities lack respite, coping skills, or adequate social and community support. These stressors can put some children at risk for failing to receive needed medications or adequate medical care and can lead to abuse or neglect.59

    Additional family stressors not considered ACEs can still negatively affect the health of some CYSHCN. These stressors include, but are not limited to, caregiver burden, poor coping skills, inadequate sleep, limited interactions with extended family and friends, reductions or loss of parental employment, and financial problems.60–65 Family conflict, in particular, can be associated with a greater number of hospitalizations, as seen in 1 study for children with asthma.41 Financial problems may result from multiple and costly medications, equipment, therapies or specialty appointments, and loss of income from taking time off work to care for CYSHCN.17,66 Limited English proficiency in parents and lack of insurance are 2 stressors that may disproportionately affect the health and well-being of some immigrant families of CYSHCN.67 Parenting stress may increase if negative perceptions of their child’s illness occur, potentially leading to additional mental and physical health problems in the parents of some CYSHCN.68 Siblings of some CYSHCN with developmental disabilities and cancer may be at risk for emotional and behavioral problems, difficulties with interpersonal relationships and functioning at school, and psychiatric conditions.69,70 The effects on caregiver and family stress can be even greater in families with children who have higher medical complexity.17,71

    Child care and school settings may struggle to accommodate the needs of CYSHCN, leading to increased stress, poor socialization, and poor school performance.49,50,72–75 Some CYSHCN may lose motivation to do well in school, resulting in lower academic achievement and increased school absences.75 Some CYSHCN may experience bullying, stereotyping, prejudice, or stigmatization from peers or others in their schools or communities. This negative experiences may lead to difficulties in school, including school avoidance.50,76,77 Children with intellectual and developmental disabilities, seizure disorders, and other conditions affecting the central nervous system are at particular risk for school problems because of impairments in brain growth and development78–80 with resultant effects on executive functioning skills.38,78,80,81 Problems with attention, memory, language, and understanding social processes place some CYSHCN at an increased risk for academic failure, poor interpersonal skills, and low self-esteem.38,78,80–82 Negative school experiences may also further exacerbate problems with adherence to medications, therapies, or other health recommendations at school.83

    The cumulative effects of living with and managing a chronic condition may evolve further over the life span of a child.84,85 Certain chronic physical and mental health conditions and treatments, particularly those affecting the central nervous system, may affect neurologic and cognitive function, social development, emotional regulation and awareness, and expressive and receptive communication. These effects may not be readily apparent to families, caregivers, teachers, and health care providers.84–86 Developmental, social, and behavioral problems may be observed when age-appropriate and interpersonal competencies, abilities, and skills are not achieved.38,78,87–90 Escalation in levels of needed medical care can increase the development of additional mental or behavioral health problems or social concerns in children. These developments can present additional challenges in the home and in child care and school settings.38,78,87,88,91,92

    A negative illness perception, low self-esteem, and a belief of a lack of control can increase the risk of a co-occurring mental health concern or diagnosis in some children.93,94 Stress from unrecognized and/or untreated mental health concerns can result in increased cortisol levels, which can negatively affect physiology and metabolism and exacerbate chronic conditions, such as asthma or diabetes.87 Unrecognized and untreated chronic complications among CYSHCN can increase the risk of developing internalizing or externalizing behavioral problems or conditions.95,96 For example, chronic nocturnal symptoms with uncontrolled asthma or undiagnosed sleep apnea with Down syndrome can negatively affect behavioral health and quality of life.97 Co-occurring chronic physical and mental health conditions are associated with an attempted suicide risk in excess of that predicted by the chronic mental health condition alone.98 A focus on behavioral health and wellness as part of chronic care may help improve health outcomes for some CYSHCN and their families.36

    Supporting Psychosocial Protective Factors for CYSHCN and Their Families

    Psychosocial protective factors can be supported at the individual, interpersonal, and community levels. Supportive and stable relationships, processes, and policies that promote resilience benefit children and can buffer against ACEs.99–103 Developmentally appropriate and supported cognitive, language, and communication skills and abilities may be associated with calmer temperament and higher levels of self-esteem, which can aid in coping with a chronic illness.40,104–106 Skills for social competence have been taught by caregivers to encourage cooperation, self-control, assertion, and self-responsibility in children with mobility disorders.99 Protective factors in some children with malignancies include comparing themselves with other children with malignancies instead of healthy peers, using positive reappraisal, spiritual or religious coping, and future-oriented thinking.107–109

    Studies now show the importance of supporting families and communities that help CYSHCN to have positive relationships and interactions.103 Healthy and well-functioning families may offer coping assistance for some CYSHCN.108,110 Cohesive and connected families with stable family structures seem to be most functional.60,110 Studies of children with autism, asthma, and diabetes suggest that instilling positive parenting beliefs helps engage parents in appropriate care.111–114 Education of community members about a child or youth’s medical condition may increase coping and resilience in some families.110 A father’s involvement in the care of a child with a chronic disease has been associated with higher treatment adherence, better psychological adjustment, and improved health for the child.115 Higher social support for caregivers of CYSHCN has been associated with decreased psychological distress in the child and decreased risks for stress, loneliness, depression, and anxiety in caregivers.116

    Schools can be a source of strength when there are positive parent-school partnerships and a supportive, coordinated early intervention system.73–75 Health care providers and schools can collaborate with families on monitoring changes in health status, developing the treatment plan, and ensuring appropriate school staffing.117,118 Schools, in partnership with families and health care providers, can play a significant role in supporting self-management of care for CYSHCN and other elements of health care transition.119 Families, youth, providers, and school and child care staff can develop and modify an Individualized Family Service Plan, Individualized Education Program, 504 plan, or individualized health plan on the basis of medical and psychosocial needs and supports. These supports may include self-management of care and transition to adult health care systems.117,119–122

    Fully supporting protective factors involves the development of community-based systems of care for CYSHCN that address psychosocial aspects of care.123,124 A system of care represents a coordinated network of community-based services and supports, including the family, the medical home, child care providers, and schools. The core values include building on the strengths and needs of the youth and family. This approach has resulted in improvements in multiple domains of individual and family functioning, including the reduction of family stress and strain and increased behavioral and emotional strengths in children.125

    Addressing Psychosocial Factors in the Medical Home

    The pediatric medical home is an ideal setting to address psychosocial factors that impact wellness and resilience for CYSHCN and their families. The medical home can conduct ongoing surveillance and screening for psychosocial factors and promote care coordination of needed services and supports.126,127 Longitudinal, relationship-centered care may facilitate discussions about psychosocial factors, address symptoms, and increase adherence to recommendations.127–130 Pediatric primary care and specialty providers can promote team-based care with partners from multiple disciplines by coordinating psychosocial screening, care planning, and interventions. Additional key partners may include care managers, family navigators, social workers, psychologists, professional interpreters, and public health and social service agencies.131 Access to comprehensive care for CYSHCN through a medical home is associated with improvements in health status, access to care, and family satisfaction. Use of a medical home approach is also associated with fewer missed school days for children, issues with child care, missed days of work, and out-of-pocket costs for families.8,9,126,132–134

    In the 2017 Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, Fourth Edition, the American Academy of Pediatrics (AAP) emphasizes a strength-based approach to comprehensive care and wellness for all children. The need to particularly focus on health and wellness for CYSHCN is also recognized.5 AAP Bright Futures recommendations for preventive pediatric health care include developmental surveillance, general developmental screening, and screening for autism at specific ages during well-child visits.5,135−136 Recommended surveillance and screenings are important even in the presence of an existing chronic physical or mental health condition, a developmental delay, or a disability, when appropriate.

    The AAP Bright Futures recommendations include a psychosocial and behavioral assessment at every well-child visit that is “family centered and may include an assessment of child social emotional health, caregiver depression, and social determinants.”5,135 Bright Futures and the US Preventive Services Task Force recommend screening for both postpartum depression and depression in adolescents at specified well-child visits.5,137–139 Surveillance or screening for parental socioemotional well-being and SDH outside of the postpartum period may identify additional psychosocial risk factors for CYSHCN.19,50,53,54,60,61,63–65 The AAP policy statement “Poverty and Child Health in the United States”48 and an additional article about redesigning health care to address poverty140 provide recommendations and resources for screening tools for SDH (eg, Safe Environment for Every Kid [SEEK]).

    A variety of resources can help pediatric medical home providers address psychosocial risk factors using a team-based approach. These include the AAP Mental Health Initiatives Web site (https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Mental-Health/Pages/Primary-Care-Tools.aspx), a tool kit called Mental Health Screening and Assessment Tools for Primary Care,141 articles and resources from the AAP Task Force on Mental Health published in a June 2010 supplement to Pediatrics,142 and a recent clinical report (“Promoting Optimal Development: Screening for Behavioral and Emotional Problems”4) that provides resources about specific behavioral and emotional tools and processes. The AAP Screening, Technical Assistance, and Resource Center provides a variety of resources about screening, discussion, management, and referral in primary care around child development, maternal depression, and SDH for young children (https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Screening/Pages/default.aspx). These developmental, autism, and social-emotional screening tools were validated in the general population and normalized for typically developing children.4,5,139,141,143,144 Validated quality-of-life screening questions have been used across several conditions, although more in research settings than in primary care.145 Standardized care approaches and tools can be used to facilitate self-management that addresses psychosocial needs, adherence to treatment plans, and leverage of supportive community resources.146,147

    Pediatric providers are encouraged to develop mental health competencies for direct patient care and for coordination with community resources.3 Pediatric providers can use evidence-based techniques (eg, motivational interviewing) to address mental health concerns and social determinants identified with screening in the medical home setting. Such approaches may be used by providers while waiting for further evaluation of the child and even while a child is receiving treatment by a mental health provider.3,130 Interventions may include counseling about family-focused physical activity guidelines, good nutrition, and improved sleep routines.36,131 Common elements among psychosocial interventions include the use of motivational interviewing strategies to communicate hope, empathy, and loyalty; use of plain language; asking permission to ask questions or share information; and partnering with families.130 Such elements have been found to be effective in building alliances, increasing disclosure, and facilitating discussions about psychosocial strengths and concerns.129,130 Pediatric providers on the care team may not serve as the primary provider to deliver mental health counseling and interventions, but they can support integrated interdisciplinary efforts and partnerships.36 A team-based approach may include the use of designated staff for wellness promotion, collocation of services (eg, social workers and psychologists), or referrals to community services for mental health assessment, counseling, and interventions.131

    Behavioral health integration has been described as a useful “approach and model of delivering care that comprehensively addresses the primary care, behavioral health, specialty care, and social support needs of children and youth with behavioral health issues in a manner that is continuous and family-centered.”148 Behavioral health integration can aid the medical home as needs occur from infancy through adolescence and into young adulthood.149 Practices with collocated behavioral health providers or real-time access to short-term mental health support have seen improved timely evaluations of child and family functioning, increased referrals for more specialized evaluations, and improved access to direct behavioral health services for CYSHCN.3,150 Mindfulness and relaxation training may also be effective with stress and can be taught to parents and children.151 However, not all practices have collocated or integrated behavioral health providers; therefore, pediatric providers are encouraged, as mentioned earlier, to develop some mental health competencies for use in primary care to enhance their delivery of direct patient care and coordination with community resources.3 Formal care coordinators, as part of the medical home team, can assist with identifying and strengthening protective relationships to help support and monitor strategies and interventions with child care providers, schools, home health agencies, behavioral health providers, social service workers, and a variety of other professionals.152 Care coordinators can be employed by the practice or another entity and can help facilitate management and referral and follow-up related to community resources.3,140,152

    These community relationships can help increase awareness, communication, and transparency of the care directed by the medical home.152 The medical home, in partnership with care coordinators and community partners, may promote planned transition from pediatric to adult health care that addresses psychosocial risk and protective factors. Planned transition includes structured assessments and planning (beginning in early adolescence) addressing SDH as well as guardianship and other legal issues. The goal is to minimize breaks in continuous care and lessen parental concern, particularly for chronic conditions accompanied by cognitive impairment.119

    Implementation of the medical home model entails a quality improvement approach and practice transformation activities. Such activities may include a patient registry, care tracking, team-based care, and special care protocols. Strategies could include a previsit process that may include routine psychosocial screening, scheduling additional time during appointments, and identifying a team member and/or care coordinator. Additional efforts include electronic health record integration and workflow changes to incorporate screening, discussion, referrals, and follow-up as part of a comprehensive, integrated plan of care. Such a plan of care includes patient- and family-identified psychosocial goals and priorities.48,124,153

    Individual provider and practice challenges to the medical home include time, training, and lack of knowledge about available resources.4,154 Community and system barriers include inadequate payments, a shortage of pediatric psychiatrists and developmental-behavioral pediatricians,155 limited community mental health resources, and limited services and abilities in communities to address SDH (eg, housing).48,149 Flexible population-based payment models and the use of payment incentives could help to encourage increased management of psychosocial health and well-being as part of care for chronic conditions and could help to increase the use of more screening tools.48,153

    Additional Strategies to Support Systems Addressing Psychosocial Factors

    Pediatricians represent only 1 stakeholder interested in the comprehensive system of care for CYSHCN and their families. Title V Maternal and Child Health programs, health plans, insurers, state Medicaid and Children’s Health Insurance Program agencies, children’s hospitals, health services researchers, families, and consumers developed national standards for a system of care for CYSHCN in 2014 and then updated these standards in 2017.124

    Recommendations for pediatric medical home teams include developing processes and protocols in collaboration with other community agencies (eg, Part C early intervention and home health) and professionals. These agencies may also perform psychosocial screenings and refer CYSHCN for further assessment of concerns. Collaboration could allow the medical home team to reduce duplication of efforts and ensure referred services regardless of who conducted the screening. Service linkage, timely communication, and appropriate data sharing can be used to promote an integrated plan of care that includes psychosocial goals and priorities from CSYHCN and their families.124 The resource titled Managing Chronic Health Needs in Child Care and Schools72 and the AAP policy statement on the role of school nurses and the medical home117 offer collaborative strategies to support social-emotional health, which influences health, school attendance, and academic performance.117,118

    Pediatric medical home providers and parents can learn about and be linked to several home- and community-based services and supports to help assess and address psychosocial needs for CYSHCN and their families. Respite care, palliative care, and hospice care and home-based services are examples of these services.124 Parents may be supported through home visiting and parenting support programs regardless of whether they are specific for CYSHCN.156–158 One parenting program, called the Positive Parenting Program or Triple P, offers a series of parenting modules called Stepping Stones, which was developed specifically for use with parents of children with developmental disabilities. Stepping Stones modules address self-efficacy, self-sufficiency, self-management, personal agency, and problem solving with parents of children with developmental disabilities. However, not all states offer Triple P Stepping Stones modules, and some states that do offer it have limited access to these modules.159,160 Parent-to-parent support groups may help some families of CYSHCN share a social identity, experience personal growth, and learn coping strategies.161

    Several programs serve as clearinghouses about services and supports for families. One example is the early childhood coordinated referral and system building programs called Help Me Grow (www.helpmegrownational.org/). Help Me Grow is now available in 26 states to help connect providers and families to developmental screening and services.140 The Community Services Locator (https://www.ncemch.org/knowledge/community.php) is another clearinghouse of information that provides Web sites and phone numbers that can be used to assist with accessing national, state, and local resources for child care, early childhood education, special education services, family support, financial support, health and wellness, and parenting programs.140 A third example is the United Way 211 line (http://www.211.org/pages/about), which is a telephone and Internet-based resource that is available 24 hours a day, 7 days a week, throughout most of the United States.140 The 211 line can provide information about a wide variety of resources in multiple languages about housing, food pantries, and utilities in addition to child care, early education, and many other services to address SDH.140

    Recommendations

    Health and wellness for CYSHCN are particularly sensitive to psychosocial risk and protective factors. Pediatric providers, particularly from the primary care–based medical home, are in the position to screen for, manage, and coordinate longitudinal care in which psychosocial factors of health among CYSHCN and their families are addressed. The following suggestions are offered to pediatricians involved in caring for CYSHCN:

    1. Follow Bright Futures recommendations and guidance for CYSHCN and their families. Recommendations include the promotion of health and wellness as well as timely assessments of child social-emotional health, parental and/or caregiver depression, and SDH.

    2. Use practice transformation strategies, such as quality improvement, patient registries, and previsit planning, to promote psychosocial screening and assessment, referrals, and follow-up among CYSHCN and their families. A good resource is the AAP Practice Transformation site (https://www.aap.org/en-us/professional-resources/practice-Transformation/Pages/practice-transformation.aspx).

    3. Use team-based care strategies, care protocols, and dedicated care coordinators (if available) to recognize psychosocial protective factors and ameliorate risk factors. This strategy may involve collocation, consultation, comanagement, and/or integration with behavioral health specialists as part of medical home and specialty care teams.

    4. Consider strategies for working with child care and school staff to monitor progress, reduce absences, and improve learning experiences and academic performance for CYSHCN.

    5. Advocate for flexible payment redesign with Medicaid and other insurers. Payment redesign may better support wellness and chronic care management for CYSHCN and their families. Flexible payment redesign may include payments for mental health treatment, care coordination, and collocation or comanagement with behavioral health and other specialists or disciplines.

    6. Promote evidence-based interventions and strategies in the medical home and subspecialty settings to support psychosocial development of CYSHCN, parenting competencies, and family resilience.

    7. Advocate for research on adaptions of existing psychosocial screening tools and interventions for CYSHCN.

    8. Advocate for community-based resources and strategies to address SDH and the reduction of disparities for CYSHCN and their families.

    9. Pediatric providers and state AAP chapters can partner with Title V Maternal and Child Health CYSHCN programs in supporting implementation of the Association of Maternal and Child Health Program’s Standards for Systems of Care for CYSHCN. These standards include increasing access for CYSHCN to quality medical homes, ease of use of community services, and transitioning across the life span.

    Lead Authors

    Gerri Mattson, MD, MSPH, FAAP

    Dennis Z. Kuo, MD, MHS, FAAP

    Committee on Psychosocial Aspects of Child and Family Health, 2017–2018

    Michael Yogman, MD, FAAP, Chairperson

    Rebecca Baum, MD, FAAP

    Thresia B. Gambon, MD, FAAP

    Arthur Lavin, MD, FAAP

    Gerri Mattson, MD, FAAP

    Raul Montiel Esparza, MD

    Arwa A. Nasir, MBBS, MSc, MPH, FAAP

    Lawrence Sagin Wissow, MD, MPH, FAAP

    Liaisons

    Amy Starin, PhD – National Association of Social Workers

    Edward Christophersen, PhD, FAAP – Society of Pediatric Psychology

    Sharon Berry, PhD, LP – Society of Pediatric Psychology

    Norah L. Johnson, PhD, RN, CPNP-PC – National Association of Pediatric Nurse Practitioners

    Abigail B. Schlesinger, MD – American Academy of Child and Adolescent Psychiatry

    Aaron Pikcilingis – Family Partnerships Network

    Staff

    Karen Smith

    Tamar Magarik Haro

    Council on Children With Disabilities Executive Committee, 2017–2018

    Dennis Z. Kuo, MD, MHS, FAAP, Chairperson

    Susan Apkon, MD, FAAP

    Timothy J. Brei, MD, FAAP

    Lynn F. Davidson, MD, FAAP

    Beth Ellen Davis, MD, MPH, FAAP

    Kathryn A. Ellerbeck, MD, FAAP

    Susan L. Hyman, MD, FAAP

    Mary O’Connor Leppert, MD, FAAP

    Garey H. Noritz, MD, FAAP

    Christopher J. Stille, MD, MPH, FAAP

    Larry Yin, MD, MSPH, FAAP

    Former Council on Children With Disabilities Executive Committee Members

    Amy J. Houtrow, MD, PhD, MPH, FAAP

    Kenneth W. Norwood Jr, MD, FAAP, Immediate Past Chairperson

    Liaisons

    Peter J. Smith, MD, MA, FAAP – Section on Developmental and Behavioral Pediatrics

    Edwin Simpser, MD, FAAP – Section on Home Care

    Georgina Peacock, MD, MPH, FAAP – Centers for Disease Control and Prevention

    Marie Mann, MD, MPH, FAAP – Maternal and Child Health Bureau

    Cara Coleman, JD, MPH – Family Voices

    Staff

    Alexandra Kuznetsov, RD

    Footnotes

    • Address correspondence to Gerri Mattson, MD, MSPH, FAAP. E-mail: gerri.mattson{at}dhhs.nc.gov

    • Clinical reports from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.

    • The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.

    • All clinical reports from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.

    • FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

    • FUNDING: No external funding.

    • POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

    References

    1. ↵
      1. McPherson M,
      2. Arango P,
      3. Fox H, et al
      . A new definition of children with special health care needs. Pediatrics. 1998;102(1 pt 1):137–140pmid:9714637
      OpenUrlFREE Full Text
    2. ↵
      1. Fee RJ,
      2. Hinton VJ
      . Resilience in children diagnosed with a chronic neuromuscular disorder. J Dev Behav Pediatr. 2011;32(9):644–650pmid:22008789
      OpenUrlCrossRefPubMed
    3. ↵
      1. Committee on Psychosocial Aspects of Child and Family Health
      2. Task Force on Mental Health
      . Policy statement–the future of pediatrics: mental health competencies for pediatric primary care. Pediatrics. 2009;124(1):410–421
      OpenUrlAbstract/FREE Full Text
    4. ↵
      1. Weitzman C,
      2. Wegner L; Section on Developmental and Behavioral Pediatrics; Committee on Psychosocial Aspects of Child and Family Health; Council on Early Childhood; Society for Developmental and Behavioral Pediatrics; American Academy of Pediatrics
      . Promoting optimal development: screening for behavioral and emotional problems [published correction appears in Pediatrics. 2015;135(5):946]. Pediatrics. 2015;135(2):384–395pmid:25624375
      OpenUrlAbstract/FREE Full Text
    5. ↵
      1. Hagan JF,
      2. Shaw JS,
      3. Duncan PM
      , eds. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. 4th ed. Elk Grove Village, IL: American Academy of Pediatrics; 2017
    6. ↵
      1. Boyle CA,
      2. Boulet S,
      3. Schieve LA, et al
      . Trends in the prevalence of developmental disabilities in US children, 1997-2008. Pediatrics. 2011;127(6):1034–1042pmid:21606152
      OpenUrlAbstract/FREE Full Text
    7. ↵
      1. Perou R,
      2. Bitsko RH,
      3. Blumberg SJ, et al; Centers for Disease Control and Prevention (CDC)
      . Mental health surveillance among children–United States, 2005-2011. MMWR Suppl. 2013;62(2):1–35pmid:23677130
      OpenUrlPubMed
    8. ↵
      1. Child and Adolescent Health Measurement Initiative
      2. Data Resource Center for Child and Adolescent Health
      . 2016 National Survey of Children’s Health (NSCH) data query. Available at: http://childhealthdata.org/browse/survey/results?q=4562&r. Accessed March 5, 2018
    9. ↵
      1. US Department of Health and Human Services
      2. Health Resources and Services Administration
      3. Maternal and Child Health Bureau
      . The National Survey of Children With Special Health Care Needs Chartbook 2009–2010. Rockville, MD: US Department of Health and Human Services; 2013
    10. ↵
      1. Berry JG,
      2. Bloom S,
      3. Foley S,
      4. Palfrey JS
      . Health inequity in children and youth with chronic health conditions. Pediatrics. 2010;126(suppl 3):S111–S119pmid:21123473
      OpenUrlAbstract/FREE Full Text
    11. ↵
      1. Akinbami LJ,
      2. Moorman JE,
      3. Garbe PL,
      4. Sondik EJ
      . Status of childhood asthma in the United States, 1980-2007. Pediatrics. 2009;123(suppl 3):S131–S145pmid:19221156
      OpenUrlAbstract/FREE Full Text
      1. Wu YW,
      2. Croen LA,
      3. Shah SJ,
      4. Newman TB,
      5. Najjar DV
      . Cerebral palsy in a term population: risk factors and neuroimaging findings. Pediatrics. 2006;118(2):690–697pmid:16882824
      OpenUrlAbstract/FREE Full Text
      1. Lipton R,
      2. Good G,
      3. Mikhailov T,
      4. Freels S,
      5. Donoghue E
      . Ethnic differences in mortality from insulin-dependent diabetes mellitus among people less than 25 years of age. Pediatrics. 1999;103(5 pt 1):952–956pmid:10224171
      OpenUrlAbstract/FREE Full Text
      1. Centers for Disease Control and Prevention (CDC)
      . Racial disparities in median age at death of persons with Down syndrome–United States, 1968-1997. MMWR Morb Mortal Wkly Rep. 2001;50(22):463–465pmid:11414598
      OpenUrlPubMed
      1. Boneva RS,
      2. Botto LD,
      3. Moore CA,
      4. Yang Q,
      5. Correa A,
      6. Erickson JD
      . Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997. Circulation. 2001;103(19):2376–2381pmid:11352887
      OpenUrlAbstract/FREE Full Text
    16. ↵
      1. Linabery AM,
      2. Ross JA
      . Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999. Cancer. 2008;113(9):2575–2596pmid:18837040
      OpenUrlCrossRefPubMed
    17. ↵
      1. Kuo DZ,
      2. Cohen E,
      3. Agrawal R,
      4. Berry JG,
      5. Casey PH
      . A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020–1026pmid:22065182
      OpenUrlCrossRefPubMed
    18. ↵
      1. Centers for Disease Control and Prevention
      . Most recent asthma data. Available at: https://www.cdc.gov/asthma/most_recent_data.htm. Accessed April 3, 2017
    19. ↵
      1. Perrin JM,
      2. Bloom SR,
      3. Gortmaker SL
      . The increase of childhood chronic conditions in the United States. JAMA. 2007;297(24):2755–2759pmid:17595277
      OpenUrlCrossRefPubMed
    20. ↵
      1. Kelly AS,
      2. Barlow SE,
      3. Rao G, et al; American Heart Association; Atherosclerosis, Hypertension, and Obesity in the Young Committee of the Council on Cardiovascular Disease in the Young; Council on Nutrition, Physical Activity and Metabolism; Council on Clinical Cardiology
      . Severe obesity in children and adolescents: identification, associated health risks, and treatment approaches: a scientific statement from the American Heart Association. Circulation. 2013;128(15):1689–1712pmid:24016455
      OpenUrlAbstract/FREE Full Text
    21. ↵
      1. Skinner AC,
      2. Skelton JA
      . Prevalence and trends in obesity and severe obesity among children in the United States, 1999-2012. JAMA Pediatr. 2014;168(6):561–566pmid:24710576
      OpenUrlCrossRefPubMed
    22. ↵
      1. Dabelea D,
      2. Mayer-Davis EJ,
      3. Saydah S, et al; SEARCH for Diabetes in Youth Study
      . Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. JAMA. 2014;311(17):1778–1786pmid:24794371
      OpenUrlCrossRefPubMed
    23. ↵
      1. Adams AK,
      2. Quinn RA,
      3. Prince RJ
      . Low recognition of childhood overweight and disease risk among Native-American caregivers. Obes Res. 2005;13(1):146–152pmid:15761174
      OpenUrlPubMed
    24. ↵
      1. Reinehr T
      . Type 2 diabetes mellitus in children and adolescents. World J Diabetes. 2013;4(6):270–281pmid:24379917
      OpenUrlPubMed
    25. ↵
      1. Goran MI,
      2. Ball GD,
      3. Cruz ML
      . Obesity and risk of type 2 diabetes and cardiovascular disease in children and adolescents. J Clin Endocrinol Metab. 2003;88(4):1417–1427pmid:12679416
      OpenUrlCrossRefPubMed
    26. ↵
      1. Cohen E,
      2. Kuo DZ,
      3. Agrawal R, et al
      . Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529–538pmid:21339266
      OpenUrlAbstract/FREE Full Text
    27. ↵
      1. Berry JG,
      2. Hall M,
      3. Neff J, et al
      . Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood). 2014;33(12):2199–2206pmid:25489039
      OpenUrlAbstract/FREE Full Text
    28. ↵
      1. van der Lee JH,
      2. Mokkink LB,
      3. Grootenhuis MA,
      4. Heymans HS,
      5. Offringa M
      . Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA. 2007;297(24):2741–2751pmid:17595275
      OpenUrlCrossRefPubMed
      1. Stiller C
      . Epidemiology of cancer in adolescents. Med Pediatr Oncol. 2002;39(3):149–155pmid:12210442
      OpenUrlCrossRefPubMed
    30. ↵
      1. van der Veen WJ
      . The small epidemiologic transition: further decrease in infant mortality due to medical intervention during pregnancy and childbirth, yet no decrease in childhood disabilities [in Dutch]. Ned Tijdschr Geneeskd. 2003;147(9):378–381pmid:12661454
      OpenUrlPubMed
    31. ↵
      1. Simon TD,
      2. Berry J,
      3. Feudtner C, et al
      . Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126(4):647–655pmid:20855394
      OpenUrlAbstract/FREE Full Text
    32. ↵
      1. Burns KH,
      2. Casey PH,
      3. Lyle RE,
      4. Bird TM,
      5. Fussell JJ,
      6. Robbins JM
      . Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126(4):638–646pmid:20855383
      OpenUrlAbstract/FREE Full Text
    33. ↵
      1. Merikangas KR,
      2. Cui L,
      3. Kattan G,
      4. Carlson GA,
      5. Youngstrom EA,
      6. Angst J
      . Mania with and without depression in a community sample of US adolescents. Arch Gen Psychiatry. 2012;69(9):943–951pmid:22566563
      OpenUrlCrossRefPubMed
    34. ↵
      1. Visser SN,
      2. Danielson ML,
      3. Bitsko RH, et al
      . Trends in the parent-report of health care provider-diagnosed and medicated attention-deficit/hyperactivity disorder: United States, 2003-2011. J Am Acad Child Adolesc Psychiatry. 2014;53(1):34–46.e2pmid:24342384
      OpenUrlCrossRefPubMed
    35. ↵
      1. Halfon N,
      2. Houtrow A,
      3. Larson K,
      4. Newacheck PW
      . The changing landscape of disability in childhood. Future Child. 2012;22(1):13–42pmid:22550684
      OpenUrlCrossRefPubMed
    36. ↵
      1. Boat TF,
      2. Filigno S,
      3. Amin RS
      . Wellness for families of children with chronic health disorders. JAMA Pediatr. 2017;171(9):825–826pmid:28738131
      OpenUrlPubMed
    37. ↵
      1. Hysing M,
      2. Elgen I,
      3. Gillberg C,
      4. Lie SA,
      5. Lundervold AJ
      . Chronic physical illness and mental health in children. Results from a large-scale population study. J Child Psychol Psychiatry. 2007;48(8):785–792pmid:17683450
      OpenUrlCrossRefPubMed
    38. ↵
      1. Pinquart M,
      2. Shen Y
      . Behavior problems in children and adolescents with chronic physical illness: a meta-analysis. J Pediatr Psychol. 2011;36(9):1003–1016pmid:21810623
      OpenUrlCrossRefPubMed
      1. Inkelas M,
      2. Raghavan R,
      3. Larson K,
      4. Kuo AA,
      5. Ortega AN
      . Unmet mental health need and access to services for children with special health care needs and their families. Ambul Pediatr. 2007;7(6):431–438pmid:17996836
      OpenUrlCrossRefPubMed
    40. ↵
      1. Theunissen SC,
      2. Rieffe C,
      3. Netten AP, et al
      . Self-esteem in hearing-impaired children: the influence of communication, education, and audiological characteristics. PLoS One. 2014;9(4):e94521pmid:24722329
      OpenUrlCrossRefPubMed
    41. ↵
      1. Goodwin RD,
      2. Bandiera FC,
      3. Steinberg D,
      4. Ortega AN,
      5. Feldman JM
      . Asthma and mental health among youth: etiology, current knowledge and future directions. Expert Rev Respir Med. 2012;6(4):397–406pmid:22971065
      OpenUrlPubMed
    42. ↵
      1. Hood KK,
      2. Beavers DP,
      3. Yi-Frazier J, et al
      . Psychosocial burden and glycemic control during the first 6 years of diabetes: results from the SEARCH for Diabetes in Youth study. J Adolesc Health. 2014;55(4):498–504pmid:24815959
      OpenUrlCrossRefPubMed
    43. ↵
      1. Melek S,
      2. Norris D
      . Chronic Conditions and Comorbid Psychological Disorders. Seattle, WA: Milliman; 2008
    44. ↵
      1. Kuo DZ,
      2. Melguizo-Castro M,
      3. Goudie A,
      4. Nick TG,
      5. Robbins JM,
      6. Casey PH
      . Variation in child health care utilization by medical complexity. Matern Child Health J. 2015;19(1):40–48pmid:24740726
      OpenUrlPubMed
    45. ↵
      1. Fine A,
      2. Kotelchuck M,
      3. Adess N,
      4. Pies C
      . Policy Brief. A New Agenda for MCH Policy and Programs: Integrating a Life Course Perspective. Martinez, CA: Contra Costa Health Services; 2009
    46. ↵
      1. Heiman HJ,
      2. Artigo S
      . Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity. San Francisco, CA: Kaiser Family Foundation; 2015. Available at: https://www.issuelab.org/resources/22899/22899.pdf. Accessed October 24, 2018
    47. ↵
      1. Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Violence Prevention
      . Essentials for childhood: steps to create safe, stable, nurturing relationships and environments. Available at: https://www.cdc.gov/violenceprevention/pdf/essentials_for_childhood_framework.pdf. Accessed November 4, 2017
    48. ↵
      1. Council on Community Pediatrics
      . Poverty and child health in the United States. Pediatrics. 2016;137(4):e20160339pmid:26962238
      OpenUrlAbstract/FREE Full Text
    49. ↵
      1. Coutinho MT,
      2. McQuaid EL,
      3. Koinis-Mitchell D
      . Contextual and cultural risks and their association with family asthma management in urban children. J Child Health Care. 2013;17(2):138–152pmid:23455872
      OpenUrlCrossRefPubMed
    50. ↵
      1. Atkinson M,
      2. Rees D,
      3. Davis L
      . Disability and economic disadvantage: facing the facts. Arch Dis Child. 2015;100(4):305–307pmid:25739943
      OpenUrlFREE Full Text
    51. ↵
      1. Rose-Jacobs R,
      2. Fiore JG,
      3. de Cuba SE, et al
      . Children with special health care needs, supplemental security income, and food insecurity. J Dev Behav Pediatr. 2016;37(2):140–147pmid:26836641
      OpenUrlPubMed
    52. ↵
      1. Bethell CD,
      2. Newacheck PW,
      3. Fine A, et al
      . Optimizing health and health care systems for children with special health care needs using the life course perspective. Matern Child Health J. 2014;18(2):467–477pmid:24101437
      OpenUrlCrossRefPubMed
    53. ↵
      1. Bethell CD,
      2. Newacheck P,
      3. Hawes E,
      4. Halfon N
      . Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience. Health Aff (Millwood). 2014;33(12):2106–2115pmid:25489028
      OpenUrlAbstract/FREE Full Text
    54. ↵
      1. Anda RF,
      2. Felitti VJ,
      3. Bremner JD, et al
      . The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology. Eur Arch Psychiatry Clin Neurosci. 2006;256(3):174–186pmid:16311898
      OpenUrlCrossRefPubMed
    55. ↵
      1. Bonnie RJ,
      2. Stratton K,
      3. Kwan LY
      , eds; Committee on the Public Health Implications of Raising the Minimum Age for Purchasing Tobacco Products; Board on Population Health and Public Health Practice; Institute of Medicine. Public Health Implications of Raising the Minimum Age of Legal Access to Tobacco Products. Washington, DC: National Academies Press; 2015
    56. ↵
      1. Weitzman ER,
      2. Ziemnik RE,
      3. Huang Q,
      4. Levy S
      . Alcohol and marijuana use and treatment nonadherence among medically vulnerable youth. Pediatrics. 2015;136(3):450–457pmid:26668849
      OpenUrlAbstract/FREE Full Text
    57. ↵
      1. Murphy NA,
      2. Elias ER
      . Sexuality of children and adolescents with developmental disabilities. Pediatrics. 2006;118(1):398–403
      OpenUrlAbstract/FREE Full Text
    58. ↵
      1. Martinello E
      . Reviewing risks factors of individuals with intellectual disabilities as perpetrators of sexually abusive behaviors. Sex Disabil. 2015;33(2):269–278
      OpenUrl
    59. ↵
      1. Hibbard RA,
      2. Desch LW; American Academy of Pediatrics Committee on Child Abuse and Neglect; American Academy of Pediatrics Council on Children With Disabilities
      . Maltreatment of children with disabilities. Pediatrics. 2007;119(5):1018–1025pmid:17473105
      OpenUrlAbstract/FREE Full Text
    60. ↵
      1. Churchill SS,
      2. Villareale NL,
      3. Monaghan TA,
      4. Sharp VL,
      5. Kieckhefer GM
      . Parents of children with special health care needs who have better coping skills have fewer depressive symptoms. Matern Child Health J. 2010;14(1):47–57pmid:19034634
      OpenUrlCrossRefPubMed
    61. ↵
      1. Hatzmann J,
      2. Peek N,
      3. Heymans H,
      4. Maurice-Stam H,
      5. Grootenhuis M
      . Consequences of caring for a child with a chronic disease: employment and leisure time of parents. J Child Health Care. 2014;18(4):346–357pmid:23990657
      OpenUrlCrossRefPubMed
      1. Meltzer LJ,
      2. Booster GD
      . Sleep disturbance in caregivers of children with respiratory and atopic disease. J Pediatr Psychol. 2016;41(6):643–650pmid:27017428
      OpenUrlCrossRefPubMed
    63. ↵
      1. Siden H,
      2. Steele R
      . Charting the territory: children and families living with progressive life-threatening conditions [published correction appears in Paediatr Child Health. 2015;20(8):466–467]. Paediatr Child Health. 2015;20(3):139–144pmid:25914572
      OpenUrlPubMed
      1. Fedele DA,
      2. Grant DM,
      3. Wolfe-Christensen C,
      4. Mullins LL,
      5. Ryan JL
      . An examination of the factor structure of parenting capacity measures in chronic illness populations. J Pediatr Psychol. 2010;35(10):1083–1092pmid:20484329
      OpenUrlCrossRefPubMed
    65. ↵
      1. Cidav Z,
      2. Marcus SC,
      3. Mandell DS
      . Implications of childhood autism for parental employment and earnings. Pediatrics. 2012;129(4):617–623pmid:22430453
      OpenUrlAbstract/FREE Full Text
    66. ↵
      1. Romley JA,
      2. Shah AK,
      3. Chung PJ,
      4. Elliott MN,
      5. Vestal KD,
      6. Schuster MA
      . Family-provided health care for children with special health care needs. Pediatrics. 2017;139(1):e20161287pmid:28028202
      OpenUrlAbstract/FREE Full Text
    67. ↵
      1. Singh GK,
      2. Yu SM,
      3. Kogan MD
      . Health, chronic conditions, and behavioral risk disparities among U.S. immigrant children and adolescents. Public Health Rep. 2013;128(6):463–479pmid:24179258
      OpenUrlCrossRefPubMed
    68. ↵
      1. Cousino MK,
      2. Hazen RA
      . Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol. 2013;38(8):809–828pmid:23843630
      OpenUrlCrossRefPubMed
    69. ↵
      1. Goudie A,
      2. Havercamp S,
      3. Jamieson B,
      4. Sahr T
      . Assessing functional impairment in siblings living with children with disability. Pediatrics. 2013;132(2). Available at: www.pediatrics.org/cgi/content/full/132/2/e476pmid:23897909
      OpenUrlAbstract/FREE Full Text
    70. ↵
      1. Houtzager BA,
      2. Oort FJ,
      3. Hoekstra-Weebers JE,
      4. Caron HN,
      5. Grootenhuis MA,
      6. Last BF
      . Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients. J Pediatr Psychol. 2004;29(8):591–605pmid:15491981
      OpenUrlCrossRefPubMed
    71. ↵
      1. Rehm RS
      . Nursing’s contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012. Nurs Outlook. 2013;61(5):266–290pmid:23809600
      OpenUrlCrossRefPubMed
    72. ↵
      1. Donoghue EA,
      2. Kraft CA
      , eds. Managing Chronic Health Needs in Child Care and Schools. Elk Grove Village, IL: American Academy of Pediatrics; 2010
    73. ↵
      1. Murdock KK,
      2. Robinson EM,
      3. Adams SK,
      4. Berz J,
      5. Rollock MJ
      . Family-school connections and internalizing problems among children living with asthma in urban, low-income neighborhoods. J Child Health Care. 2009;13(3):275–294pmid:19713409
      OpenUrlCrossRefPubMed
      1. O’Connor M,
      2. Howell-Meurs S,
      3. Kvalsvig A,
      4. Goldfeld S
      . Understanding the impact of special health care needs on early school functioning: a conceptual model. Child Care Health Dev. 2015;41(1):15–22pmid:24912552
      OpenUrlCrossRefPubMed
    75. ↵
      1. Forrest CB,
      2. Bevans KB,
      3. Riley AW,
      4. Crespo R,
      5. Louis TA
      . School outcomes of children with special health care needs. Pediatrics. 2011;128(2):303–312pmid:21788226
      OpenUrlAbstract/FREE Full Text
    76. ↵
      1. Vranda MN,
      2. Mothi SN
      . Psychosocial issues of children infected with HIV/AIDS. Indian J Psychol Med. 2013;35(1):19–22pmid:23833337
      OpenUrlPubMed
    77. ↵
      1. Van Cleave J,
      2. Davis MM
      . Bullying and peer victimization among children with special health care needs. Pediatrics. 2006;118(4). Available at: www.pediatrics.org/cgi/content/full/118/4/e1212pmid:17015509
      OpenUrlAbstract/FREE Full Text
    78. ↵
      1. Pinquart M,
      2. Teubert D
      . Academic, physical, and social functioning of children and adolescents with chronic physical illness: a meta-analysis. J Pediatr Psychol. 2012;37(4):376–389pmid:22173882
      OpenUrlCrossRefPubMed
      1. Leitner Y
      . The co-occurrence of autism and attention deficit hyperactivity disorder in children - what do we know? Front Hum Neurosci. 2014;8:268pmid:24808851
      OpenUrlCrossRefPubMed
    80. ↵
      1. Liogier d’Ardhuy X,
      2. Edgin JO,
      3. Bouis C, et al
      . Assessment of cognitive scales to examine memory, executive function and language in individuals with Down syndrome: implications of a 6-month observational study. Front Behav Neurosci. 2015;9:300pmid:26635554
      OpenUrlPubMed
    81. ↵
      1. Schott N,
      2. Holfelder B
      . Relationship between motor skill competency and executive function in children with Down’s syndrome. J Intellect Disabil Res. 2015;59(9):860–872pmid:25688672
      OpenUrlPubMed
    82. ↵
      1. Hajek CA,
      2. Yeates KO,
      3. Anderson V, et al
      . Cognitive outcomes following arterial ischemic stroke in infants and children. J Child Neurol. 2014;29(7):887–894pmid:23760990
      OpenUrlCrossRefPubMed
    83. ↵
      1. Gidman W,
      2. Cowley J,
      3. Mullarkey C,
      4. Gibson L
      . Barriers to medication adherence in adolescents within a school environment [abstract]. Arch Dis Child. 2011;96(suppl 1):A64
      OpenUrlAbstract/FREE Full Text
    84. ↵
      1. Berg AT
      . Epilepsy, cognition, and behavior: the clinical picture. Epilepsia. 2011;52(suppl 1):7–12pmid:21214534
      OpenUrlCrossRefPubMed
    85. ↵
      1. Packer RJ,
      2. Gurney JG,
      3. Punyko JA, et al
      . Long-term neurologic and neurosensory sequelae in adult survivors of a childhood brain tumor: childhood cancer survivor study. J Clin Oncol. 2003;21(17):3255–3261pmid:12947060
      OpenUrlAbstract/FREE Full Text
    86. ↵
      1. Reiter-Purtill J,
      2. Vannatta K,
      3. Gerhardt CA,
      4. Correll J,
      5. Noll RB
      . A controlled longitudinal study of the social functioning of children who completed treatment of cancer. J Pediatr Hematol Oncol. 2003;25(6):467–473pmid:12794525
      OpenUrlPubMed
    87. ↵
      1. Cottrell D
      . Prevention and treatment of psychiatric disorders in children with chronic physical illness. Arch Dis Child. 2015;100(4):303–304pmid:25784735
      OpenUrlFREE Full Text
    88. ↵
      1. Hocking MC,
      2. McCurdy M,
      3. Turner E, et al
      . Social competence in pediatric brain tumor survivors: application of a model from social neuroscience and developmental psychology. Pediatr Blood Cancer. 2015;62(3):375–384pmid:25382825
      OpenUrlPubMed
      1. Walterfang M,
      2. Bonnot O,
      3. Mocellin R,
      4. Velakoulis D
      . The neuropsychiatry of inborn errors of metabolism. J Inherit Metab Dis. 2013;36(4):687–702pmid:23700255
      OpenUrlCrossRefPubMed
    90. ↵
      1. Rantanen K,
      2. Eriksson K,
      3. Nieminen P
      . Social competence in children with epilepsy--a review. Epilepsy Behav. 2012;24(3):295–303pmid:22595143
      OpenUrlPubMed
    91. ↵
      1. Ingerski LM,
      2. Modi AC,
      3. Hood KK, et al
      . Health-related quality of life across pediatric chronic conditions. J Pediatr. 2010;156(4):639–644pmid:20117793
      OpenUrlCrossRefPubMed
    92. ↵
      1. Kirk S,
      2. Glendinning C
      . Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev. 2004;30(3):209–218; discussion 219pmid:15104576
      OpenUrlCrossRefPubMed
    93. ↵
      1. Zeltner NA,
      2. Huemer M,
      3. Baumgartner MR,
      4. Landolt MA
      . Quality of life, psychological adjustment, and adaptive functioning of patients with intoxication-type inborn errors of metabolism - a systematic review. Orphanet J Rare Dis. 2014;9:159pmid:25344299
      OpenUrlPubMed
    94. ↵
      1. Rizou I,
      2. De Gucht V,
      3. Papavasiliou A,
      4. Maes S
      . Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy. Epilepsy Behav. 2015;46:144–150pmid:25900225
      OpenUrlPubMed
    95. ↵
      1. May ME,
      2. Kennedy CH
      . Health and problem behavior among people with intellectual disabilities. Behav Anal Pract. 2010;3(2):4–12pmid:22532888
      OpenUrlPubMed
    96. ↵
      1. Sivertsen B,
      2. Hysing M,
      3. Elgen I,
      4. Stormark KM,
      5. Lundervold AJ
      . Chronicity of sleep problems in children with chronic illness: a longitudinal population-based study. Child Adolesc Psychiatry Ment Health. 2009;3(1):22pmid:19712458
      OpenUrlCrossRefPubMed
    97. ↵
      1. Boergers J,
      2. Koinis-Mitchell D
      . Sleep and culture in children with medical conditions. J Pediatr Psychol. 2010;35(9):915–926pmid:20332222
      OpenUrlCrossRefPubMed
    98. ↵
      1. Barnes AJ,
      2. Eisenberg ME,
      3. Resnick MD
      . Suicide and self-injury among children and youth with chronic health conditions. Pediatrics. 2010;125(5):889–895pmid:20385631
      OpenUrlAbstract/FREE Full Text
    99. ↵
      1. Alriksson-Schmidt AI,
      2. Wallander J,
      3. Biasini F
      . Quality of life and resilience in adolescents with a mobility disability. J Pediatr Psychol. 2007;32(3):370–379pmid:16751636
      OpenUrlCrossRefPubMed
      1. McLeroy KR,
      2. Bibeau D,
      3. Steckler A,
      4. Glanz K
      . An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4):351–377pmid:3068205
      OpenUrlCrossRefPubMed
      1. Barros L,
      2. Gaspar de Matos M,
      3. Batista-Foguet JM
      . Chronic diseases, social context and adolescent health. Revista Brasileira de Terapias Cognitivas. 2008;4(1):123–141
      OpenUrl
      1. Rutter M
      . Psychosocial resilience and protective mechanisms. Am J Orthopsychiatry. 1987;57(3):316–331pmid:3303954
      OpenUrlCrossRefPubMed
    103. ↵
      1. Sege R,
      2. Bethell C,
      3. Linkenbach J,
      4. Jones JA,
      5. Klika B,
      6. Pecora PJ
      . Balancing Adverse Childhood Experiences With HOPE: New Insights Into the Role of Positive Experience on Child and Family Development. Boston, MA: The Medical Foundation; 2017. Available at: www.cssp.org. Accessed November 4, 2017
    104. ↵
      1. Blackman JA,
      2. Conaway MR
      . Developmental, emotional and behavioral co-morbidities across the chronic health condition spectrum. J Pediatr Rehabil Med. 2013;6(2):63–71pmid:23803339
      OpenUrlPubMed
      1. Hintermair M
      . Self-esteem and satisfaction with life of deaf and hard-of-hearing people–a resource-oriented approach to identity work. J Deaf Stud Deaf Educ. 2008;13(2):278–300pmid:17971343
      OpenUrlCrossRefPubMed
    106. ↵
      1. Pinquart M
      . Self-esteem of children and adolescents with chronic illness: a meta-analysis. Child Care Health Dev. 2013;39(2):153–161pmid:22712715
      OpenUrlCrossRefPubMed
    107. ↵
      1. Harter S
      . The Construction of the Self: A Developmental Perspective. New York, NY: The Guilford Press; 1999
    108. ↵
      1. Hildenbrand AK,
      2. Alderfer MA,
      3. Deatrick JA,
      4. Marsac ML
      . A mixed methods assessment of coping with pediatric cancer. J Psychosoc Oncol. 2014;32(1):37–58pmid:24428250
      OpenUrlPubMed
    109. ↵
      1. Sansom-Daly UM,
      2. Wakefield CE
      . Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Transl Pediatr. 2013;2(4):167–197pmid:26835313
      OpenUrlPubMed
    110. ↵
      1. Hall HR,
      2. Neely-Barnes SL,
      3. Graff JC,
      4. Krcek TE,
      5. Roberts RJ,
      6. Hankins JS
      . Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues Compr Pediatr Nurs. 2012;35(1):24–44pmid:22250965
      OpenUrlCrossRefPubMed
    111. ↵
      1. Bekhet AK,
      2. Johnson NL,
      3. Zauszniewski JA
      . Effects on resilience of caregivers of persons with autism spectrum disorder: the role of positive cognitions. J Am Psychiatr Nurses Assoc. 2012;18(6):337–344pmid:23139377
      OpenUrlCrossRefPubMed
      1. Johnson N,
      2. Frenn M,
      3. Feetham S,
      4. Simpson P
      . Autism spectrum disorder: parenting stress, family functioning and health-related quality of life. Fam Syst Health. 2011;29(3):232–252pmid:21928891
      OpenUrlPubMed
      1. Idalski Carcone A,
      2. Ellis DA,
      3. Weisz A,
      4. Naar-King S
      . Social support for diabetes illness management: supporting adolescents and caregivers. J Dev Behav Pediatr. 2011;32(8):581–590pmid:21904213
      OpenUrlCrossRefPubMed
    114. ↵
      1. Ellis DA,
      2. King P,
      3. Naar-King S,
      4. Lam P,
      5. Cunningham PB,
      6. Secord E
      . Effects of family treatment on parenting beliefs among caregivers of youth with poorly controlled asthma. J Dev Behav Pediatr. 2014;35(8):486–493pmid:25186121
      OpenUrlPubMed
    115. ↵
      1. Wysocki T,
      2. Gavin L
      . Psychometric properties of a new measure of fathers’ involvement in the management of pediatric chronic diseases. J Pediatr Psychol. 2004;29(3):231–240pmid:15131140
      OpenUrlCrossRefPubMed
    116. ↵
      1. Morelli SA,
      2. Lee IA,
      3. Arnn ME,
      4. Zaki J
      . Emotional and instrumental support provision interact to predict well-being. Emotion. 2015;15(4):484–493pmid:26098734
      OpenUrlPubMed
    117. ↵
      1. Council on School Health
      . Role of the school nurse in providing school health services. Pediatrics. 2016;137(6):e20160852
      OpenUrlAbstract/FREE Full Text
    118. ↵
      1. Perrin JM,
      2. Anderson LE,
      3. Van Cleave J
      . The rise in chronic conditions among infants, children, and youth can be met with continued health system innovations. Health Aff (Millwood). 2014;33(12):2099–2105pmid:25489027
      OpenUrlAbstract/FREE Full Text
    119. ↵
      1. Cooley WC,
      2. Sagerman PJ; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group
      . Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200
      OpenUrlAbstract/FREE Full Text
      1. Lipkin PH,
      2. Okamoto J; Council on Children With Disabilities; Council on School Health
      . The individuals with disabilities education act (IDEA) for children with special educational needs. Pediatrics. 2015;136(6). Available at: www.pediatrics.org/cgi/content/full/136/6/e1650pmid:26620061
      OpenUrlAbstract/FREE Full Text
      1. Adams RC,
      2. Tapia C; Council on Children With Disabilities
      . Early intervention, IDEA part C services, and the medical home: collaboration for best practice and best outcomes. Pediatrics. 2013;132(4). Available at: www.pediatrics.org/cgi/content/full/132/4/e1073
    122. ↵
      1. Cartwright JD; American Academy of Pediatrics Council on Children With Disabilities
      . Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions. Pediatrics. 2007;119(6):1218–1223pmid:17545394
      OpenUrlAbstract/FREE Full Text
    123. ↵
      1. Stroul BA,
      2. Blau GM,
      3. Friedman RM
      . Updating the System of Care Concept and Philosophy. Washington, DC: National Technical Assistance Center for Children’s Mental Health, Georgetown University Center for Child and Human Development; 2010. Available at: https://gucchdtacenter.georgetown.edu/resources/Call%20Docs/2010Calls/SOC_Brief2010.pdf. Accessed March 7, 2018
    124. ↵
      1. Association of Maternal and Child Health Programs
      2. Lucile Packard Foundation for Children’s Health
      . Standards for Systems of Care for Children and Youth With Special Health Care Needs Version 2.0. Washington, DC: Association of Maternal and Child Health Programs;2017 . Available at: http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0.pdf. Accessed September 15, 2017
    125. ↵
      1. Texas System of Care
      . A better future for Texas children: the impact of system of care. Available at: www.txsystemofcare.org/wp-content/uploads/2013/02/TXSOC_outcomes.pdf. Accessed March 7, 2018
    126. ↵
      1. Turchi RM,
      2. Berhane Z,
      3. Bethell C,
      4. Pomponio A,
      5. Antonelli R,
      6. Minkovitz CS
      . Care coordination for CSHCN: associations with family-provider relations and family/child outcomes. Pediatrics. 2009;124(suppl 4):S428–S434pmid:19948609
      OpenUrlAbstract/FREE Full Text
    127. ↵
      1. Little P,
      2. Everitt H,
      3. Williamson I, et al
      . Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ. 2001;323(7318):908–911pmid:11668137
      OpenUrlAbstract/FREE Full Text
      1. Thom DH,
      2. Kravitz RL,
      3. Bell RA,
      4. Krupat E,
      5. Azari R
      . Patient trust in the physician: relationship to patient requests. Fam Pract. 2002;19(5):476–483pmid:12356698
      OpenUrlCrossRefPubMed
    129. ↵
      1. Wissow LS,
      2. Larson SM,
      3. Roter D, et al; SAFE Home Project
      . Longitudinal care improves disclosure of psychosocial information. Arch Pediatr Adolesc Med. 2003;157(5):419–424pmid:12742876
      OpenUrlCrossRefPubMed
    130. ↵
      1. Wissow L,
      2. Anthony B,
      3. Brown J, et al
      . A common factors approach to improving the mental health capacity of pediatric primary care. Adm Policy Ment Health. 2008;35(4):305–318pmid:18543097
      OpenUrlCrossRefPubMed
    131. ↵
      1. Katkin JP,
      2. Kressly SJ,
      3. Edwards AR, et al; Task Force on Pediatric Practice Change
      . Guiding principles for team-based pediatric care. Pediatrics. 2017;140(2):e20171489pmid:28739656
      OpenUrlAbstract/FREE Full Text
    132. ↵
      1. Kuhlthau KA,
      2. Bloom S,
      3. Van Cleave J, et al
      . Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011;11(2):136–143pmid:21396616
      OpenUrlCrossRefPubMed
      1. Cooley WC,
      2. McAllister JW,
      3. Sherrieb K,
      4. Kuhlthau K
      . Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics. 2009;124(1):358–364pmid:19564320
      OpenUrlAbstract/FREE Full Text
    134. ↵
      1. Arauz Boudreau AD,
      2. Van Cleave JM,
      3. Gnanasekaran SK,
      4. Kurowski DS,
      5. Kuhlthau KA
      . The medical home: relationships with family functioning for children with and without special health care needs. Acad Pediatr. 2012;12(5):391–398pmid:22884797
      OpenUrlCrossRefPubMed
    135. ↵
      1. Committee on Practice and Ambulatory Medicine
      2. Bright Futures Periodicity Schedule Workgroup
      . 2017 recommendations for preventive pediatric health care. Pediatrics. 2017;139(4):e20170254pmid:28213605
      OpenUrlAbstract/FREE Full Text
    136. ↵
      1. Myers SM,
      2. Johnson CP; American Academy of Pediatrics Council on Children With Disabilities
      . Management of children with autism spectrum disorders. Pediatrics. 2007;120(5):1162–1182
      OpenUrlAbstract/FREE Full Text
    137. ↵
      1. Earls MF; Committee on Psychosocial Aspects of Child and Family Health; American Academy of Pediatrics
      . Incorporating recognition and management of perinatal and postpartum depression into pediatric practice. Pediatrics. 2010;126(5):1032–1039
      OpenUrlAbstract/FREE Full Text
      1. O’Connor E,
      2. Rossom RC,
      3. Henninger M,
      4. Groom HC,
      5. Burda BU
      . Primary care screening for and treatment of depression in pregnant and postpartum women: evidence report and systematic review for the US Preventive Services Task Force. JAMA. 2016;315(4):388–406pmid:26813212
      OpenUrlCrossRefPubMed
    139. ↵
      1. Forman-Hoffman V,
      2. McClure E,
      3. McKeeman J, et al
      . Screening for major depressive disorder in children and adolescents: a systematic review for the U.S. Preventive Services Task Force. Ann Intern Med. 2016;164(5):342–349pmid:26857836
      OpenUrlPubMed
    140. ↵
      1. Fierman AH,
      2. Beck AF,
      3. Chung EK, et al
      . Redesigning health care practices to address childhood poverty. Acad Pediatr. 2016;16(suppl 3):S136–S146pmid:27044692
      OpenUrlCrossRefPubMed
    141. ↵
      1. American Academy of Pediatrics
      . Mental health screening and assessment tools for primary care. In: Addressing Mental Health Concerns in Primary Care: A Clinician’s Toolkit. Elk Grove Village, IL: American Academy of Pediatrics; 2012
    142. ↵
      1. Foy JM,
      2. Perrin J; American Academy of Pediatrics Task Force on Mental Health
      . Enhancing pediatric mental health care: strategies for preparing a community. Pediatrics. 2010;125(suppl 3):S75–S86
      OpenUrlFREE Full Text
    143. ↵
      1. Council on Children With Disabilities
      2. Section on Developmental Behavioral Pediatrics
      3. Bright Futures Steering Committee
      4. Medical Home Initiatives for Children With Special Needs Project Advisory Committee
      . Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening [published correction appears in Pediatrics. 2006;118(4):1808–1809]. Pediatrics. 2006;118(1):405–420
      OpenUrlAbstract/FREE Full Text
    144. ↵
      1. Johnson CP,
      2. Myers SM; American Academy of Pediatrics Council on Children With Disabilities
      . Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183–1215
      OpenUrlAbstract/FREE Full Text
    145. ↵
      1. Varni JW,
      2. Limbers CA,
      3. Burwinkle TM
      . Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43pmid:17634123
      OpenUrlCrossRefPubMed
    146. ↵
      1. Modi AC,
      2. Pai AL,
      3. Hommel KA, et al
      . Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129(2). Available at: www.pediatrics.org/cgi/content/full/129/2/e473pmid:22218838
      OpenUrlAbstract/FREE Full Text
    147. ↵
      1. Lozano P,
      2. Houtrow A
      . Supporting self-management in children and adolescents with complex chronic conditions. Pediatrics. 2018;141(suppl 3):S233–S241pmid:29496974
      OpenUrlAbstract/FREE Full Text
    148. ↵
      1. Substance Abuse and Mental Health Services Administration and Health Resources and Services Administration Center for Integrated Health Solutions
      . Integrating Behavioral Health and Primary Care for Children and Youth: Concepts and Strategies. Washington, DC: Substance Abuse and Mental Health Services Administration and Health Resources and Services Administration Center for Integrated Health Solutions; 2013. Available at: https://static1.squarespace.com/static/545cdfcce4b0a64725b9f65a/t/553e7ef4e4b09e24c5c935db/1430159092492/13_June_CIHS_Integrated_Care_System_for_Children_final.pdf. Accessed November 11, 2017
    149. ↵
      1. Tyler ET,
      2. Hulkower RL,
      3. Kaminski JW
      . Behavioral health integration in pediatric primary care: considerations and opportunities for policymakers, planners, and providers. 2017. Available at: https://www.milbank.org/wp-content/uploads/2017/03/MMF_BHI_REPORT_FINAL.pdf. Accessed November 11, 2017
    150. ↵
      1. Kuehn BM
      . Pediatrician-psychiatrist partnerships expand access to mental health care. JAMA. 2011;306(14):1531–1533pmid:21990291
      OpenUrlCrossRefPubMed
    151. ↵
      1. Fjorback LO,
      2. Arendt M,
      3. Ornbøl E,
      4. Fink P,
      5. Walach H
      . Mindfulness-based stress reduction and mindfulness-based cognitive therapy: a systematic review of randomized controlled trials. Acta Psychiatr Scand. 2011;124(2):102–119pmid:21534932
      OpenUrlCrossRefPubMed
    152. ↵
      1. Council on Children With Disabilities
      2. Medical Home Implementation Project Advisory Committee
      . Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics. 2014;133(5). Available at: www.pediatrics.org/cgi/content/full/133/5/e1451pmid:24777209
      OpenUrlAbstract/FREE Full Text
    153. ↵
      1. Landon BE
      . Structuring payments to patient-centered medical homes. JAMA. 2014;312(16):1633–1634pmid:25335142
      OpenUrlCrossRefPubMed
    154. ↵
      1. Hochstein M,
      2. Sareen H,
      3. Olson L,
      4. O’Connor K,
      5. Inkelas M,
      6. Halfon N
      . Periodic Survey #46. A Comparison of Barriers to the Provision of Developmental Assessments and Psychosocial Screenings During Pediatric Health Supervision. Elk Grove Village, IL: American Academy of Pediatrics; 2001. Available at: https://www.aap.org/en-us/professional-resources/Research/Pages/PS46_AcomparisonofBarrierstotheProvisionofDevelopmentalAssessmentsandpsychosocialscreeningsduringpediatrichealthsupervision.aspx. Accessed March 7, 2018
    155. ↵
      1. Bridgemohan C,
      2. Bauer NS,
      3. Nielsen BA, et al
      . A workforce survey on developmental-behavioral pediatrics. Pediatrics. 2018;141(3):e20172164pmid:29453235
      OpenUrlAbstract/FREE Full Text
    156. ↵
      1. Tschudy MM,
      2. Toomey SL,
      3. Cheng TL
      . Merging systems: integrating home visitation and the family-centered medical home. Pediatrics. 2013;132(suppl 2):S74–S81pmid:24187126
      OpenUrlAbstract/FREE Full Text
      1. Jones K,
      2. Daley D,
      3. Hutchings J,
      4. Bywater T,
      5. Eames C
      . Efficacy of the Incredible Years Basic parent training programme as an early intervention for children with conduct problems and ADHD. Child Care Health Dev. 2007;33(6):749–756pmid:17944785
      OpenUrlCrossRefPubMed
    158. ↵
      1. Sanders MR,
      2. Turner KM,
      3. Markie-Dadds C
      . The development and dissemination of the Triple P-Positive Parenting Program: a multilevel, evidence-based system of parenting and family support. Prev Sci. 2002;3(3):173–189pmid:12387553
      OpenUrlCrossRefPubMed
    159. ↵
      1. Mazzucchelli TG,
      2. Sanders MR
      . Stepping Stones Triple P: A Population Approach to the Promotion of Competent Parenting of Children With Disability. Queensland, Australia: University of Queensland; 2012
    160. ↵
      1. Tellegen C
      . Outcomes From a Randomised Controlled Trial Evaluating a Brief Parenting Intervention With Parents of Children With an Autism Spectrum Disorder. Queensland, Australia: University of Queensland; 2012
    161. ↵
      1. Shilling V,
      2. Morris C,
      3. Thompson-Coon J,
      4. Ukoumunne O,
      5. Rogers M,
      6. Logan S
      . Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev Med Child Neurol. 2013;55(7):602–609pmid:23421818
      OpenUrlPubMed
    Back to top

    In this issue

    Pediatrics
    Vol. 143, Issue 1
    1 Jan 2019
    View this article with LENS
    Email Article
    Request Permissions
    Article Alerts
    Citation Tools
    Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families
    Gerri Mattson, Dennis Z. Kuo, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, COUNCIL ON CHILDREN WITH DISABILITIES
    Pediatrics Jan 2019, 143 (1) e20183171; DOI: 10.1542/peds.2018-3171
    del.icio.us logo Digg logo Reddit logo Twitter logo CiteULike logo Facebook logo Google logo Mendeley logo
    Print
    Download PDF
    Insight Alerts

    Jump to section

    Subjects