Parents As Partners In The Medical Home: Helping Children with Special Healthcare Needs.

Helping Children with Special Healthcare Needs

"I enjoy being involved in the Medical Home Project because it gives me a chance to share my experience in a positive way with the hopes of making a difference in someone else's life. For the first time I feel like I have a voice in my child's healthcare. Doctors and nurses actually listen to what I say" Mae Moore, parent participating in Phoenix Pediatrics' Medical Home Project.

For years parents of children with serious, chronic, complex healthcare problems have been struggling with problems that parents of healthy children do not face. Because these children often require multiple services, they spend a lot of time in different offices and clinics coping with multiple sets of paperwork. Because these children are medically complex, they have to seek out physicians who are experienced and willing to work with them. Because these children are not only medically complex, but financially costly, they have to deal with health maintenance organizations too often reluctant to provide them and their physicians with the support needed for adequate care.

Medically complex children

Children with special healthcare needs (CSHCN) have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type and amount beyond that required by children generally (MCHRB, 1997). These conditions may limit their growth, development, or ability to do the usual activities of children their age, and often require special medical and other support services. They are a diverse group, having over 3,700 chronic conditions. The three most common conditions are: respiratory disorders, musculoskeletal disorders, and attention deficit disorders. Newacheck and Taylor (1992) estimated that one or more of these conditions affect over 20 million children and youth, or 31 percent of the total population of individuals under 18 in the US. This population is typically divided into three groups: 1) mild, i.e., having little adverse effect on activities of daily living, and accounting for 20 percent of the population; 2) moderate, i.e., ongoing limitations of daily activities, 9 percent of the population; and 3) severe, resulting in serious limitations of all activities, 2 percent of the population.

The Medical Home

The American Academy of Pediatrics (AAP), the federal agency Maternal Child Health Bureau (MCHB), and parent organizations recognized these problems and worked to establish guidelines for improving healthcare. The AAP and MCHB developed the concept of the Medical Home: services provided by the pediatrician's practice that are responsive to the special needs of these children and their families. The MCHB convened a conference at Egg Harbor attended by parents and professionals. The results of this conference were a set of criteria for the Medical Home based on parents' perspectives. The Medical Home is a concept of how pediatricians should provide the types and extent of services needed by CSHCN and their families. Overall, the AAP believes that the medical care of infants, children, and adolescents should be delivered or directed by well-trained physicians who are able to manage or facilitate all aspects of pediatric care (Ad Hoc Task Force on Definition of the Medical Home, 1992). Pediatric practices that qualify as a Medical Home are:

Accessible

* Practice is community based, located in proximity to primary residence of patients.

* Practice offers assistance with transition from fee-for-service to managed care through counseling, the services of an ombudsman, and patient education.

* Practice identifies assistance resources, information to families about public programs serving CSHCN, including state Medicaid programs, SSI-Assistance programs, Title V programs for CSHCN, state and private early intervention programs, special educations services, children's mental health programs, and private, community-based support services.

Continuous

* Practice provides medical support 24 hours a day, 7 days a week.

Comprehensive

* Practice provides primary, acute, extended, and family-services care.

* Health service includes medical, psychological, educational and behavioral help.

* Pediatrician has knowledge of the full range of child health problems.

Family-centered

* Pediatrician recognizes that parents are the child's primary source of support and experts on their own children.

* Pediatrician recognizes that families and professionals working together best shape practices and improve healthcare.

Coordinated

* Practice centralizes information from service providers in the practice's office.

* Pediatrician communicates effectively and collaborates on plan for child's care with all service providers.

Compassionate

* Pediatrician expresses concern for the well-being of the child and family.

* Pediatrician demonstrates cultural competence by respecting family's values, beliefs, and behaviors.

* Pediatrician actively listens to families and validates families' feelings.

Phoenix Pediatrics

The MCHB funded several projects in order to educate pediatricians and families about the concept of the Medical Home. One of the projects funded by MCHB in 1997 was the Phoenix Pediatrics, Ltd., Medical Home Project, Parents as Partners in the Medical Home. This project, funded through the Phoenix Pediatrics, Ltd., Practice, engaged a team of parents and professionals who collaborated in a series of research studies. The team's goal was to have parents systematically define the characteristics of the Medical Home, thereby outlining solutions to every day healthcare problems from the perspectives of families of CSHCN. (We will describe the work in upcoming issues of EP.)

Phoenix Pediatrics, Ltd., is a community-based medical practice, located in Phoenix, Arizona, that provides primary medical care to more than 20,000 children, including more than 2,600 CSHCN. Phoenix Pediatrics adopted the practices described in the Medical Home concept over 14 years ago under the auspices of Dr. David Hirsch and his associates. Dr. Hirsch is the medical director on the project. To provide the services outlined in the Medical Home, Phoenix Pediatrics created a "Clinical Care Coordinator" position, which is filled by Diana Frieberg, RN, BSN. Ms. Frieberg also serves on the Project team. Dr. Hirsch and Ms. Frieberg invited 20 parents and foster parents of CSHCN who are patients of Phoenix Pediatrics to work on the Project. The children have a wide range of problems, including asthma, seizure disorder, cerebral palsy, mental retardation, autism, traumatic brain injury, Down syndrome, spina bifida, hydrocephalus, and dwarfism. Most of the children have multiple, chronic, and sometimes life-threatening problems. Raising Special Kids, a grass-root organization of parents of children with disabilities in Arizona is a partner in the project. Judie Walker, professional development coordinator at RSK, brings expertise on working directly with families and parent coaching to the team.

Steering Committee. A committee of eleven parents and guardians of CSHCN and 10 health- and related-services professionals was established to represent the medical profession, managed care providers, community-based service agencies, hospitals, and parents. The Committee reviews the work of the research team and provides input from their organizations' perspectives, makes recommendations for project directions, and helps to disseminate the products produced by the Project.

The Role of the Parent-Professional Research Team. In this project the parents of children with special healthcare needs are included as active members of the research team, and, therefore, have a direct impact on the importance of the questions asked, the integrity of measures used, and the validity of the interpretation of results. The research model reduces the time to disseminate the results to families because the information has already been tested for the usefulness to families on an ongoing basis. Parents find participation de-mystifies the scientific process and teaches effective problem- solving strategies. For the parents, participation in the research process was a means of "beginning to know" rather than just "hoping" that positive changes can come about. By involving families who are most likely to be affected and have the most to gain from the results, we identify concrete, usable remedies that families find appropriate and feasible--remedies that fit in day-to-day family living. Working in a small group, with parents and professionals sharing responsibility and helping one another, the group has become a nurturing unit.

Parents as Partners in the Medical Home Project goals

The Parents as Partners Project was funded by MCHRB to improve the health status of CSHCN by making parents more effective collaborators with the pediatric practice. We did this by systematically identifying effective practices within the Medical Home. One of the criteria the team researched was communication. Research in this area has been concentrated on physicians' skills in communicating with parents. In the Parents as Partners project, the research team directed its attention to developing parents' communication skills, and defining effective strategies parents can use to communicate with healthcare providers. As part of this effort, parents tape-recorded and analyzed their communication strategies in their child's visits to pediatricians' and specialists' offices. We will describe the skills this team of experienced parents developed to navigate doctors' offices. The research team also developed a second method for improving parents' communication skills. The Children's Health Status Assessment (CHSA) is a portable medical record and Daily Planner that has parents collecting data on a daily basis to monitor changes in their child's health status. The goal of the communication studies is to help parents communicate more effectively (i.e., learn medical lingo, identify problems early, have an ongoing record of health episodes). Parents use the CHSA to track events that might trigger health changes and the consequences of treatment across time. In addition, parents keep track of the cost to the family of related activities and resources needed to support the child. We will describe how parents use the CHSA to monitor changes in their child's health, communicate with physicians and others about their child's health, and keep track of out-of-pocket costs of healthcare.

A second area covered in the upcoming series is the accessibility of health care facilities for CSHCN. Although the 10-year-old Americans with Disabilities Act (ADA) specifies how buildings must accommodate adults, families of CSHCN have some special needs not included in the ADA. The parent research team defined their needs in physical settings and rated the healthcare facilities that serve their children. We will share the Physical Environment Survey form used by parents to evaluate healthcare facilities.

Third, because CSHCN are complex and rare, parents have to seek out doctors who are experienced and willing to work with their children. The research team developed a set of criteria that parents of CSHCN can use in selecting a pediatrician. The criteria have been put into survey format other parents can use to select physicians and that physicians can use to evaluate their practice. Many "horror" stories made it clear that hospitals also are not necessarily prepared to meet the needs of families and CSHCN. The research team developed the Family-Centered Patient's Bill of Rights, a set of standards for providing services to CSHCN and their families during hospital stays. The Bill of Rights was put into survey form so that hospitals can use it to establish policies and services, train staff, and evaluate services. Parents can use it to understand and access good healthcare for their children during hospital stays.

Karen Burstein, PhD, and Tanis Bryan, PhD, both of the University of Arizona, are Co-principal Investigators for the Medical Home Project Team. As a parent of a CSHCN and former CEO of a children's rehabilitation facility, Dr. Burstein brings expertise on the problems of families and children as well as research design to the team. Dr. Bryan brings extensive knowledge and experience in conducting community-based investigators to the team.