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Strengthen the Evidence for Maternal and Child Health Programs

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Evidence Tools
Medical Home: Family-Centered Care

Introduction

This toolkit summarizes content from the Medical Home: Family-Centered Care Evidence Accelerator and the MCHbest database. The peer-reviewed literature supporting this work can be found in the Established Evidence database. Use the resources below as you develop effective evidence-based/informed programs and measures.

This NPM is one of five measures in support of the Medical Home Overall Measure (a Universal Measure); access each of the individual Accelerators here: the percent of children with and without special health care needs, ages 0 through 17, who have a personal doctor or nurse; have a usual source of sick care; receive needed referrals; and receive needed care coordination.

From the MCH Block Grant Guidance. The American Academy of Pediatrics (AAP) specifies seven qualities essential to medical home care, which include accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally effective. Providing comprehensive and coordinated care to children in a medical home is the standard of pediatric practice. Research indicates that children with a stable and continuous source of health care are more likely to receive appropriate preventive care, are less likely to be hospitalized for preventable conditions, and are more likely to be diagnosed early for chronic or disabling conditions.

Goal. To increase the percent of children with and without special health care needs who have a medical home.

Note. Access other related measures in this Population Domain through the Toolkits page.

Overview: Read a summary of the issue related to Title V

  • The Institute for Patient and Family Centered Care defines patient- and family-centered care (FCC) as an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.2 FCC is working “with” children, youth, and families, rather than just doing “to” or “for” them.2 In FCC, families define their “family” and determine how they will participate in care and decision-making.2 Studies show that both children and youth with and without SHCN benefit from FCC.2,3,4

    The Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) further delineates the principles of FCC, including the following: families and professionals working together; respect for the skills and expertise brought to the relationship, trust, and open and objective communication; joint decision making; and a willingness to negotiate.4 Core concepts that should exist between families and professionals is dignity and respect, information sharing, participation, and collaboration.2,4

    FCC is viewed as a primary component of the pediatric medical home. Across all FCC models, the consistent goal is to develop and implement care plans in partnership with families.5 To accomplish this overarching goal, FCC models require collaboration between family members and providers, consideration of family contexts, education for patients, families, and providers, and dedicated policies and procedures.5 Research shows that FCC leads to better health outcomes, wiser allocation of resources, and greater satisfaction.2

    Interventions and policies that support family partnership at various levels across the health care system—direct care, organizational design and governance, and policy making—can improve health and health care.6,7 According to family leaders, successful family partnerships during the health care experience require the following:

    • Empower. Try to neutralize inherent power dynamics.
    • Implement. Practice partnership and shared decision-making.
    • Communicate. Take time to ask what is most important to the child and family and really listen.
    • Support Family Leadership. Meaningfully collaborate with and develop ways for families to assess and advise on FCC.
    • Connect. Recognize the importance of high-quality, community-based services and create new pathways to missing resources.8

Detail Sheet: Start with the MCH Block Grant Guidance

DEFINITION

Numerators:

Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to meet the criteria for having a medical home (personal doctor or nurse, usual source for care, family-centered care, referrals if needed, and care coordination if needed)
Number of children with and without special health care needs, ages 0 through 17, who have a personal doctor or nurse
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have a place they usually go when the child is sick or needs advice about their health (excluding the hospital emergency room)
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent that the child’s doctor or other health care provider always/usually 1) spent enough time with the child, 2) listened carefully to the child, 3) showed sensitivity to family values, 4) provided the specific information needed concerning the child, and 5) helped the family feel like a partner in the child’s care
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have no problem getting needed referrals
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have received all needed help with care coordination

Denominators:

Number of children with and without special health care needs, ages 0 through 17
Number of children with and without special health care needs, ages 0 through 17
Number of children with and without special health care needs, ages 0 through 17
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have had a visit with a health care professional in the past 12 months
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have needed a referral to see any doctors or receive any services in the past 12 months
Number of children with and without special health care needs, ages 0 through 17, who are reported by a parent to have needed care coordination past 12 months

Units: 100

Text: Percent

HEALTHY PEOPLE 2030 OBJECTIVE

Related to Maternal, Infant, and Child Health (MICH) Objective 19: Increase the proportion of children and adolescents who receive care in a medical home. (Baseline: 48.6% in 2016-17, Target: 53.6%)

DATA SOURCES

National Survey of Children's Health (NSCH)

MCH POPULATION DOMAIN

Children with Special Health Care Needs, All Children (CSHCN and non-CSHCN), or All Adolescents (CSHCN and non-CSHCN)

MEASURE DOMAIN

Clinical Health Systems

Data Sources: Learn more about the issue and access the data directly

1. Accelerate with Evidence—Start with the Science

The first step to accelerate effective, evidence-based/informed programs is ensuring that the strategies we implement are meaningful and have high potential to affect desired change. Read more about using evidence-based/informed programs and then use this section to find strategies that you can adopt or adapt for your needs.

Evidence-based/Informed Strategies: MCHbest Database

The following strategies have emerged from studies in the scientific literature as being effective in advancing the measure. Use the links below to read more about each strategy or access the MCHbest database to find additional strategies.

Chart of Evidence-Linked Strategies and Tools

Evidence-Informed

Evidence-Based

Mixed Evidence

Emerging Evidence

Expert Opinion

Moderate Evidence

Scientifically Rigorous

Field-Based Strategies: Find promising programs from AMCHP’s Innovation Hub

Cutting Edge:

Emerging:

Promising:

Best:

Key Findings and Emerging Issues: Read more from the literature

The following are key findings emerging from the literature:

  1. Key components of effective programs that advance FCC include cultural sensitivity,26 structured communication (including language translation), understanding and validating parents’ experiences, shared decision-making, and providing support and resources.27
  2. Parent participation programs, family-integrated care models, and the use of new technologies (as part of a digital health environment) such as bedside boards can improve communication, engagement, attachment, and health outcomes in neonatal care settings.27
  3. Multimodal approaches to communication skills training, including deliberate practice and patient feedback, can be effective in improving FCC experiences.28
  4. Parents expressed the need for emotional support, education, connection with peers, and assistance in navigating the healthcare system. They emphasized the importance of parent-infant bonding, education on caregiving, and connecting with other parents and families.27
  5. Provider training stressed the importance of family members as partners in care, the establishment of common ground with peers, honest communication, consistent messaging, and an emotional connection with all involved in care.29

Research. Multiple strategies are emerging as potential approaches to advance this NPM, but haven’t been studied with enough rigor to be included in the evidence-based continuum. Additional research is needed to verify outcomes, but initial studies have shown promise of these strategies in MCH settings:

  • Supporting family navigators to provide direct contact related to advocacy, care coordination, community resources, and emotional support.30
  • Establishing patient and family advisory councils to provide experience that can help enhance service delivery and improve overall quality.31
  • Promoting health literacy to assist families in participating in the care of their children.32
  • Incorporating family feedback and satisfaction surveys into care and interactions.33
  • Supporting parent-to-parent networks for families to connect and share experiences.34
  • Integrating FCC content into telehealth visits to facilitate two-way communication.35

Research Gaps: Learn where more study is needed

Topical Area Knowledge Gaps. Lack of studies on:

  • Understanding how parents successfully take up their role as collaborative partners in their child's specialist care.

Specific Intervention Research Gaps. Lack of studies on:

  • Assessing the effectiveness of family integrated care bundles with parents as care team members in improving infant outcomes. 
  • Evaluating the effectiveness of family-centered communication educational interventions using deliberate practice and patient feedback.
  • Assessing the effectiveness of parent participation improvement programs.
  • Supporting family navigators to provide direct contact related to advocacy, care coordination, community resources, and emotional support for children and families. 
  • Establishing patient and family advisory councils to enhance service delivery and improve overall quality of FCC. 
  • Promoting health literacy to assist families in participating in the care of their children.
  • Supporting parent-to-parent networks for families to connect and share experiences. 
  • Integrating FCC content into telehealth visits to facilitate two-way communication.

Methodological Gaps. Lack of studies on:

  • Conducting more research on the effectiveness of interventions to improve FCC in different contexts, such as neonatal intensive care units.

Strategy Video: Watch a summary of evidence-based/informed strategies

Watch a short video discussing state-of-the-art, evidence-based/informed strategies that can be used or adapted as ESMs. Experts in the field discuss approaches, the science, and specific ways that Title V agencies can implement and measure these approaches.

2. Think Upstream with Planning Tools—Lead with the Need

The second step in developing effective, evidence-based/informed programs challenges us to plan upstream to ensure that our work addresses issues early and is measurable in “turning the curve” on big issues that face MCH populations. Read more about moving from root causes to responsive programs and then use this section to align your work with the data and needs of your populations.

A. Move from Need to Strategy

Use Root-Cause Analysis (RCA) and Results-Based Accountability (RBA) tools to build upon the science to determine how to address needs.

Planning Tools: Use these tools to move from data to action

B. Align with the Needs of the Population

Consider the following findings related to this performance measure.

The Role of Title V: Get ideas on how to implement strategies

Title V programs are uniquely situated to support FCC and strengthen and advance family partnerships by:
Building Capacity:

  • Training health care providers in FCC principles and practices.25
  • Providing formal and informal support for children, youth, and families, such as peer support, to advocate for their FCC needs.24

Engaging Families and Communities:

  • Assuring families are key partners in health care decision-making at all levels.7
  • Partnering with families and organizations in needs assessments, program planning, service delivery, and monitoring.7
  • Developing referral networks to community resources.24
  • Utilizing culturally sensitive outreach strategies to ensure diverse communities are aware of and have access to FCC resources and support.24

Promoting System and Policy Change:

  • Supporting FCC-friendly policies, such as family presence, information sharing, and shared decision-making.25
  • Expanding measurement and evaluation systems.5

SDOH and Health Equity Considerations: Identify ways to advance health for all

Social Determinants of Health (SDOH).

Family partnerships are essential in addressing the SDOH that directly impact the health, mental health, and well-being of families and communities.16 Parents are most likely to report lack of partnerships with providers if their children have functional limitations, are from racial or ethnic minority backgrounds, have low incomes, do not have health insurance, and have limited English language skills.16 The systemic issues leading to lack of partnership are the result of persistent racism, classism, and ableism.17 The consequences for families without perceived partnerships with providers are poorer outcomes (more missed school days, harder to obtain referrals for services, and unmet child and family needs)18 and less satisfaction with care.19 FCC offers an important opportunity to promote population health through systematically addressing SDOH.20

Health Equity

Unequal access to high-quality primary care amplifies pervasive economic, mental health, and social health disparities.21 Health equity must be explicitly integrated into the core of a culture that truly engages children, youth, and families in care.Achieving this goal will require an examination of policies perpetuating systemic racism and a cultural shift to honor diversity and relationships by:

  • Supporting better integration of diverse patient and family advisory councils to bring the voices of families experiencing inequity into the development of solutions.
  • Implementing initiatives around health literacy to enable organizations to learn how to address and align health information and services with the knowledge, skills, and needs of families. 
  • Diversifying the workforce and integrating culturally responsive training approaches that recognize implicit biases and the need for cultural humility in the delivery of care. 
  • Increasing access to care with new models of outreach and extension of health care provision into communities through technologies such as video conferencing and telehealth.22

Special Considerations: Tease out ways to zoom in on populations of focus

CYSHCN

FCC is widely acknowledged as supporting positive outcomes in CYSHCN and their parents.23 The American Academy of Pediatrics (AAP) regards FCC as an integral component of the medical home, and HRSA MCHB regards FCC as a core objective for care of CYSHCN within state Title V programs and Healthy People 2030 objectives.24

3. Work Together with Implementation Tools—Move from Planning to Practice

The third step in developing effective, evidence-based/informed programs calls us to work together to ensure that programs are movable within the realities of Title V programs and lead to health equity for all people. Read more about implementation tools designed for MCH population change and then use this section to develop responsive strategies to bring about change that is responsive to the needs of your populations.

Additional MCH Evidence Center Resources: Access supplemental materials from the literature

Implementation Resources: Use these field-generated resources to affect change

Practice. The following tools can be used to translate evidence to action to advance this NPM:

Partnership. The following organizations focus efforts on advancing FCC:

References

Introductory References: From the MCH Block Grant Guidance

1 American Academy of Pediatrics. National Resource Center for Patient/Family-Centered Medical Home. (n.d.) https://medicalhomeinfo.aap.org

Toolkit References: From the Evidence Accelerator

1 Retrieved from https://www.census.gov/content/dam/Census/programs-surveys/nsch/tech-documentation/questionnaires/2022/NSCH-T1.pdf

2 Retrieved from https://ipfcc.org/about/pfcc.html - Institute for Patient and Family Centered Care

3 Kuo DZ, Frick KD, Minkovitz CS. Association of family-centered care with improved anticipatory guidance delivery and reduced unmet needs in child health care. Matern Child Health J. 2011 Nov;15(8):1228-37.

4 Kuhlthau KA, Bloom S, Van Cleave J, Knapp AA, Romm D, Klatka K, Homer CJ, Newacheck PW, Perrin JM. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011 Mar-Apr;11(2):136-43.

5 Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019 Aug 13;19(1):564.

6 Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013 Feb;32(2):223-31.

7 U.S. Department of Health and Human Services, Health Resources Administration, Maternal and Child Health Bureau, Division of State and Community Health. Title V Maternal and Child Health Services Block Grant to State Program: Guidance and Forms for the Title V Application/Annual Report. Retrieved from https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadContent?fileName=BlockGrantGuidance.pdf&isForDownload=False

8 https://www.aap.org/en/practice-management/providing-patient--and-family-centered-care/family-professional-partnerships-in-pediatric-health-care

9 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Medical Home Component: Family-centered care, Nationwide (nschdata.org)

10 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Medical Home Component: Family-centered care, Nationwide, Special health care needs status (nschdata.org)

11 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Doctors spent enough time with the child, Nationwide (nschdata.org)

12 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2021 22: Doctors listened carefully, Nationwide (nschdata.org)

13 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Doctors showed sensitivity to family's values and customs, Nationwide (nschdata.org)

14 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Doctors provided specific information for parental concerns, Nationwide (nschdata.org)

15 Child and Adolescent Health Measurement Initiative. 2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved [05/10/2024] from [www.childhealthdata.org]. NSCH 2022: Doctors helped parents feel like partners in child's care, Nationwide (nschdata.org)

16 Deatrick JA. Where Is “Family” in the Social Determinants of Health? Implications for Family Nursing Practice, Research, Education, and Policy. Journal of Family Nursing. 2017;23(4):423-433.

17 Rosenfeld, L., & Litt, J. S. (2023). To achieve equitable, integrated care for children, family-centered work must focus on systems. Families, systems & health: the journal of collaborative family healthcare, 41(4), 547–549.

18 Kenney MK, Denboba D, Strickland B, Newacheck PW. Assessing family-provider partnerships and satisfaction with care among US children with special health care needs. Acad Pediatr. 2011 Mar-Apr;11(2):144-51.

19 Smalley LP, Kenney MK, Denboba D, Strickland B. Family perceptions of shared decision-making with health care providers: results of the National Survey of Children With Special Health Care Needs, 2009-2010. Matern Child Health J. 2014 Aug;18(6):1316-27.

20 Garg, A., Jack, B., & Zuckerman, B. (2013). Addressing the social determinants of health within the patient-centered medical home: lessons from pediatrics. JAMA, 309(19), 2001–2002.

21 Robinson SK, Meisnere M, et al., eds. Implementing High-Quality Primary Care: Rebuilding the Foundation of Health Care. Washington DC: National Academies Press; 2021 May 4.

22 Simon M, Baur C, Guastello S, Ramiah K, Tufte J, Wisdom K, Johnston-Fleece M, Cupito A, Anise A. Patient and Family Engaged Care: An Essential Element of Health Equity. NAM Perspect. 2020 Jul 13;2020.

23 Geri M. Lotze, Melissa H. Bellin & Donald P. Oswald (2010) Family-Centered Care for Children With Special Health Care Needs: Are We Moving Forward? Journal of Family Social Work, 13:2, 100-113.

24 Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012 Feb;16(2):297-305.

25 Seniwati T, Rustina Y, et al. Patient and family-centered care for children: A concept analysis. Belitung Nurs J. 2023 Feb 12;9(1):17-24.

26 Koch M, Grier K. Communication and Cultural Sensitivity for Families and Children with Life Limiting Diseases. J Hospice & Palliative Nursing. 22(4)270-275.

27 Lemmon ME, Glass HC, et al. Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents. Pediatr Neurol. 2021 Nov;124:26-32.

28 Marsh M, Lauden SM, et al. Family-centered communication: A pilot educational intervention using deliberate practice and patient feedback. Patient Educ Couns. 2021 May;104(5):1200-1205.

29 Doherty RF, Knab M, Cahn PS. Getting on the same page: an interprofessional common reading program as foundation for patient-centered care. J Interprof Care. 2018 Jul;32(4):444-451.

30 Godoy L, Hodgkinson S, et al. Increasing Mental Health Engagement From Primary Care: The Potential Role of Family Navigation. Pediatrics April 2019; 143 (4): e20182418.

31 Retrieved from https://nichq.org/resource/creating-patient-and-family-advisory-council-toolkit-pediatric-practices

32 Clay AM, Parsh B. Patient- and Family-Centered Care: It’s Not Just for Pediatrics Anymore. AMA J Ethics. 2016;18(1):40-44.

33 Hummel K, Presson AP, Millar MM, Larsen G, Kadish H, Olson LM. An Assessment of Clinical and System Drivers of Family Satisfaction in the PICU. Pediatr Crit Care Med. 2020 Oct;21(10):e888-e897.

34 McCrossin J, Lach L. Parent-to-parent support for childhood neurodisability: A qualitative analysis and proposed model of peer support and family resilience. Child Care Health Dev. 2023 May;49(3):544-554.

35 Brody AA, Sadarangani T, et al. Family- and Person-Centered Interdisciplinary Telehealth: Policy and Practice Implications Following Onset of the COVID-19 Pandemic. J Gerontol Nurs. 2020 Sep 1;46(9):9-13.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.