Sharon L. Spano
In 1993 Floridas Department of Education and the Institute of Child Health Policy, University of Florida, collaboratively developed a self-instructed curriculum for health care providers intended to support statewide implementation of Public Law 99-457, the Individual with Disabilities Education Act of 1986, Part H. This federal legislation marks a turning point in federal and state policy with respect to the service delivery system for young children who are disabled or developmentally delayed by specifically calling for the development and implementation of statewide, comprehensive, coordinated, multidisciplinary, interagency programs of early intervention services for infants and toddlers and their families. In keeping with this national shift from a system of care that is a child-centered approach to one that is family-centered, Florida developed a Developmental Screening and Family Centered Care self-instructed module in an effort to assist health care providers in the utilization of screening methods that will identify developmental strengths and needs of young children utilizing a family-centered approach.
Traditionally, professionals in the medical community have set the pace for how and when the family is involved in the care of their child. The philosophical assumption of family-centered care is that a provider can best meet the needs of the individual when the system revolves around the strengths and needs of the family. This revolutionary approach to health care offers a system that is more flexible, accessible, and responsive to the needs of the child and the family. While the elements of family-centered care were originally intended to impact services for infants and toddlers, it is believed that these elements can be of equal benefit to providers serving adolescent and adult individuals with handicapping conditions.
An extended version of the elements and practices of family-centered care were originally outlined and published under public domain (Reiss and Nackashi, 1993) with behavioral objectives to:
Recognize the key elements of family-centered care.
Describe the activities for implementing each element of family-centered care in practice.
State the benefits of and barriers to collaborative relationships between health care providers and families.
Identify the four skill areas that are essential to building professional/family partnerships.
Describe a family-centered approach to delivering diagnostic news to a family.
The following elements are presented as adapted from Shelton, T.L., Jeppson, E.S., and Johnson, B.H. (1987):
This element recognizes that the family is the constant in the childs life while the service systems and personnel within those systems change. The ultimate responsibility for addressing a childs health, developmental, social and emotional needs lies with the family. The service system and health care providers are, therefore, encouraged to support families in their efforts to function as primary decision makers, caregivers, teachers, and advocates for their child.
Value the judgment of family members.
Respect the concerns and priorities of the family.
Support the family in its care giving role.
Assist family members in the decision making process as it relates to the care of their child.
Explore all available options with the family.
Since parents generally have an innate understanding of the strengths and needs of the child, family members should be encouraged to provide information and offer opinions relative to the health care of their child. Accordingly, health care providers must be willing to listen, support, and respond to the concerns and priorities of the family in order to best meet the needs of the child. Family members are more likely to respond to the recommendations of the provider if they feel their input is respected and valued. Parents should, therefore, be actively involved in the development of care coordination plans or protocols of care.
The development of a collaborative relationship between the family and the health care provider is vital to the delivery of good health care. Health care providers must work toward involving parents as partners at all levels of service. In a system that is family-centered in nature, providers are no longer expected to know all the answers. Parents and professionals work together to create a plan of care that will serve the individual child and that will result in shared responsibility for the health and well being of the child.
Develop an attitude that parents are equal partners in the health care system.
Provide parents with information to increase their knowledge and skills.
Actively involve family members in the design, implementation, and evaluation of the childs plan of care to the degree they choose.
Inform parents about opportunities to affect health care policy at the community, state, and national level.
Health care for the child is greatly enhanced when both the health care provider and the family value and appreciate the unique types of expertise that each has to offer. Family-centered care requires an attitudinal shift in the way in which we think and feel about one another as parents and professionals. It requires a climate of mutual trust and respect that will result in the health care provider and the family uniting in the best interest of the child.
Parents should also be afforded the opportunity to play an active role in the formulation of health care policy. More specifically, parents should be encouraged to serve on state and local advisory boards, participate in advocacy and support groups, attend conferences on health care, and collaboratively work with the medical community on public awareness initiatives that address the unique aspects of health care services for individuals with special health care considerations.
This element recognizes that unbiased and complete information about the childs care should be shared with the family on an ongoing basis and in an appropriate and supportive manner. Family members are best prepared to make reasonable decisions about the care of their child when they have full knowledge and understanding of the condition of that child. Health care professionals have always been faced with the dilemma of how best to provide diagnostic information to the family. It is important to remember that it is the familys hope for the child that will enable them to face the day-to-day challenges of rearing a child with special health care needs. Family members who have met this challenge repeatedly state that how information is given is as crucial as what information is given. Families want providers to share relevant information in a caring and compassionate manner and to assist them in making reasonable choices with respect to the health and well-being of their child.
Express your own vulnerability when faced with a challenging health care need and assure the family that you will work with them to meet the needs of the child to the best of your ability.
Be open and honest in what you know as well as what you do not know.
Explain to the family the purpose and reason for information requested or for specific procedures to be performed.
Provide information both orally and in writing.
Openly discuss diagnostic news and choices with the family.
Explain medical terminology.
Do not make assumptions about the familys ability to comprehend the information given.
Provide the family with additional sources of information relevant to their childs condition.
Ensure that family members have ready access to medical records of the child.
Family members often shut down when medical information is being delivered about their child and consequently only hear part of what is being said. It is important for the health care professional to realize that this is a natural coping strategy and does not necessarily mean that the family is in denial about their childs condition. Rather, it means that they need more time to understand and assimilate what is being said. Providers should not censor information out of doubt or fear that the family is unable to handle bad news. It is crucial for family members to be made aware of all information and options so that they can begin the process of adjusting their lives to meet the needs of the child and ultimately make informed decisions about the care for that child.
This element recognizes the importance of implementing appropriate policies and programs that are comprehensive and that provide emotional and financial support to the family. The philosophical framework of family-centered care recognizes that the challenge of a child with special health care needs not only impacts the psychosocial status of the child, but it also has an impact on the parents, siblings, and extended family members. Comprehensive programs and services for families should include, but not limited to: in home health care, care coordination services, respite care, parent-to-parent support, parent information centers, transportation, equipment loan or exchange, and financial assistance.
Have knowledge of and review the range of services available.
Refer the family to comprehensive programs and appropriate services.
Identify needs of the family that are not being met.
It is often difficult for family members to determine what services are needed or available for their child. The service delivery system is a complex maze, and parents generally look to the provider to recommend appropriate services for their child and family. Health care providers play an important role because they can not only refer the family for comprehensive services, but they can also serve as a community voice for the ongoing development of additional resources.
This element recognizes parent-to-parent support as one of the cornerstones of family-centered care. In a health care system that is family-centered, professionals look beyond the medical needs of the child and empower the family to identify and utilize ongoing support systems in the community. The basis premise of parent-to-parent support is that families are better able to meet the complex medical needs of the child if they are afforded the opportunity to network with others who face similar challenges. Health care providers acknowledge that many family members who have taken advantage and actively participated in community support networks are better able to accept and adjust to the circumstances surrounding a child with special health care needs.
Validate the importance of parent-to-parent support to colleagues.
Facilitate an on-going partnership between the medical community and parent-to-parent support networks.
Refer family members to parent-to-parent support networks.
Since the health care professional is typically the one whom first informs the family about the nature of their childs disability, it is crucial for the provider to offer opportunities for support to the family along with interventions for the child. Because parents are initially overwhelmed by the unique challenges of their child, they often fail to recognize the importance of addressing their own emotional needs. Providers can play a vital role by validating the importance of parent-to-parent support to the family, offering options of available resources, and facilitating their involvement in local support networks.
While the primary goal of the health care provider is to address the medical needs of the child, it is crucial for the medical system to remain flexible, accessible, and responsive to the needs of the family. Traditionally, family members have had to adapt their lives to meet the scheduling requirements and regulations of the system. The pressure of having to comply with the inner workings of such a complex system often creates undue stress on the family. In a family-centered approach to health care, family members are provided with options and choices about when and where to access services. Ideally, family members will be provided comprehensive health care services that use a multidisciplinary approach. A system that is flexible in meeting the needs of the child and responsive to the challenges of the family as a whole will ultimately result in less stress on the family and greater results for the child.
Provide parents with options and choices for health care.
Encourage a multidisciplinary approach to health care.
Share information relevant to the childs care with other disciplines.
Assist the family in accessing services and in the development of a single, integrated plan of care in collaboration with appropriate agencies and organizations.
A family-centered approach to health care affords family members a sense of control over their own lives. Parents who have children with special health care needs often feel that they have little or no choice about when appointments are made, which health care provider they see, or what services their child receives. In a system that is family-centered, the family is the driving force of service delivery. All disciplines come together to assist the family in determining an appropriate plan of care for the child that addresses the concerns, resources, and priorities of the family.
Every family is unique. In a family-centered approach to health care, families are valued for their unique qualities and differences. Health care providers are encouraged to creatively meet the needs of the child and the family as they demonstrate sensitivity to the racial, ethnic, cultural, and socioeconomic diversity of the family. Accordingly, family members are not judged for their different parenting styles, nor are they expected to conform to an ideal approach to child rearing. Rather, providers strive to promote family independence. Consequently, the medical environment is appropriately adapted to assure the familys role in the decision-making process by addressing such considerations as language barriers, cultural values and beliefs, and economic constraints.
Develop knowledge about cultural values and beliefs thereby learning to appreciate the diversity of family structures and lifestyles within the community.
Develop respect and understanding for individual differences.
Avoid judging families.
Acknowledge that each family has strengths and resources and build upon the positive aspects of the family.
Respect and encourage family autonomy.
The ultimate goal of family-centered care is to empower family members to take responsibility for their own lives. The philosophical framework of family-centered care emphasizes the value of respecting diversity in families. The underlying assumption of service delivery should be that every family member is doing the best he or she can, given what they know. The health care provider has the challenge of assisting the family to meet the unique needs of the child. This challenge must be met with emphasis on the strengths and resources within the family.
This element also recognizes the importance of respecting the unique aspects of the individual family. The idealized family of a mother (at home), father (at work), and 2.5 children no longer exists in our modern society. Therefore, health care providers must develop creative ways of addressing the circumstances surrounding the child if the health care demands of that child are to be appropriately met in partnership with the family. The philosophy of family-centered care acknowledges that each family is diverse in its structure, roles, values, beliefs, and coping styles. Respect for this diversity in families places great emphasis on the strengths and resources within the family unit. In contrast to the traditional approach wherein providers were taught to determine the weaknesses of the family and to resolve issues for the family, a family-centered approach requires that providers reach a solution with the family. Health care professionals are encouraged to move away from the belief that it is their responsibility to fix the familys problems. Rather, the provider should accept the opinions and beliefs of the family and assist the family in building upon the existing strengths in an effort to achieve their goals for the child.
Listen to the family.
Be open to ideas, opinions, values, beliefs, and decisions of the family.
Recognize that each family will cope differently with the health care needs of their child.
Assist the parents in determining the existing strengths and priorities of the family.
Health care providers are encouraged to listen to the family and make a determination as to how the family is coping with the health care needs of their child. Each family will cope with the challenge of a child with special needs in a different way. It is important that the provider be accepting and nonjudgmental about where the family is in the process of meeting these challenges. Family members should never be judged for where they are in the process. Further, families should not be told that they have unrealistic expectations for their child since it is often those expectations that give the family the strength and hope they need to meet the day-to-day challenges of caring for a child with special health care considerations.
In a family-centered approach to health care, providers are encouraged to make determinations, based on their expertise, regarding appropriate services for the child. This should be done with consideration of where the family is in the process of acceptance and grief. Families are then assisted in identifying their strengths, resources, and priorities in a way that will result in the best possible care for their child.
Sharon L. Spano has successfully advocated for legislative reform and educational services for children with disabilities since 1983. As a mother of a fifteen-year-old son who is physically challenged, she is committed to comprehensive services in the community that emphasize and value a family-centered environment for children and youth. Her dedicated efforts have resulted in the coordination and development of such projects as The Physicians Training Project of Florida and implementation of The Individual Family Support Plan. Her most recent work, The Miracle of Michael, is published in Collaborative Medical Education Models: Families, Physcians, and Children with Special Health Needs.
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Sharon L. Spano
957 Wesson Drive
Casselberry, FL 32707