PARENTIPROFESSIONAL PARTNERSHIPS IN CARING FOR CHILDREN WITH SPECIAL. HEALTH CARE NEEDS
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DIANNE L. HAAS,Ph.D., R.N. Children ’s Hospital of Michigan
HERMAN B. G W , Jr, M.D. BEVERLY McCONNELL Michigan Department of Public Health
In order for children with special health care needs to be adequately cared for, a variety of integrated, coordinated services are needed to support the children and their families. To facilitate optimal coordination of care for these children, it is imperative that the professionals who serve them engage in a partnership of care with parents or other family members. To that end, the Division of Children’s Special Health Care Services (DCSHCS), Michigan Department of Public Health has carried out a variety of efforts to foster such partnerships. This article describes the efforts that have been carried out over the last few years in Michigan to develop parent/professional partnerships. It is not intended to be a scholarly review of the literature, but rather an explanation of strategies that have been used successfully to develop this important interface. Particular emphasis is given to describing the establishment of partnerships between parents of children with special health care needs and nurses and physicians. Jt is hoped that the sharing of such information will assist others who are just beginning such efforts.
INTRODUCTION Children with special health care needs present unique challenges not only to their parents and families, but also to those who provide them with care and services. Formerly, particularly in the days when severely ill children were placed in institutions, the input of parents was rarely solicited. Rather, the professionals assumed that they were in charge of the children and, if a good rapport was established, would merely share information about the children’s care. Today, children rarely are placed in long-term institutional settings. However, children who, in the past, would have succumbed to their disease are now surviving and presenting our society with new challenges. This article presents information on how Michigan, through its Division of Children’s Special Health Care Services (DCSHCS) proIssues in Comprehensive Pediatric Nursing, 15:39-53, 1992 Copyright 0 1992 by Hemisphere Publishing Co?poration
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gram, has fostered partnerships between parents and professionals, which are mutually beneficial to all those concerned with the well-being of these children and their families.
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Why Parent/Professional Partnerships? In 1987, Dr. C. Everett Koop challenged those concerned with the care of special needs children to commit themselves to implementing a national agenda (U.S.Department of Health and Human Services, 1987). The focus of this agenda was to develop family-centered, communitybased, coordinated health care structures throughout the country to serve this population. The Surgeon General based this call to action on the elements of family-centered care, which were articulated by the Association for the Care of Children’s Health (Shelton, Jeppson, & Johnson, 1987). To truly implement family-centered care, however, it is imperative to develop partnerships. A brief review of the elements of family-centered care, and how they related to Michigan’s developmental efforts are provided. The nine elements of family-centered care (FCC) are enumerated in Table 1. Although each is important to the development of FCC, three are a b l e 1. Elements of Family-Centered Care 1. Recognizing that the family is the constant in a child’s life, while the service
systems and personnel within those systems fluctuate. 2. Faciliating parent/professional collaboration at all levels of health care: care of an individual child; program development, implementation, and evaluation; and policy formation. 3. Honoring the racial, ethnic, cultural, and socioeconomic diversity of families. 4. Recognizing family strengths and individuality and respecting different methods of coping. 5. Sharing with parents, on a continuing basis and in a supportive manner, complete and unbiased information. 6 . Encouraging and facilitating family-to-family support and networking. 7. Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into health care systems. 8. Implementing comprehensive policies and programs that provide emotional and financial support to meet the needs of families. 9. Designing accessible health care systems that are flexible, culturally competent, and responsive to family-identified needs. From Shelton, T. L., Jeppson, E. S., and Johnson, B. H. (1992). Family-Centered Care for Children with Special Health Care Nee&. washington, D.C.: Association for the Care of Children’s Health,2nd Edition, 3rd Printing.
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particularly germane to the development of parent/professional partnerships. The first recognizes that the family is the constant in a child’s life, whereas the service systems and personnel within those systems fluctuate. Although this concept may appear self-evident, the health care system does not always respond in that way. The second element speaks to facilitating parent/professional collaboration at all levels of care. This article focuses on collaboration at a state level, but it is important to realize that such efforts can occur at every level in the health care system. The sixth element encourages and facilitates family-to-family support and networking. The idea here is that families that are experiencing stress and strain should be encouraged to seek out other helpful support mechanisms. This element has served as the philosophical underpinning to much of our parent/professional collaboration efforts. In an effort to explain the evolution of family-centered care in Michigan, the roles of varying groups engaged in parent/professional partnerships are explored. These include: (a) the parental role; (b) the professional role; and (c) the role played by the system of care.
DEVELOPING PARTNERSHIPS The Parental Role When thinking about the role of parents and families in the lives of children with special needs, there ought to be common themes. Furthermore, these themes should appear true and obvious. However, the obvious sometimes needs to be stated over and over again until it is really understood. Therefore, several key roles that need to be carried out by parents of children with special needs are discussed. The first role for parents is to be the constant in their children’s lives. However, parents of children with complex health care needs are, at times, not able to meet all of their needs, hence they seek help from others. Bombardment with input from multiple professionals may result in parents losing sight of their own important role. Therefore, families may need assistance in accepting their role as the constant figures in the lives of their children with special needs. In addition, families need support and information from professionals to engage effectively with others in relation to their children’s care needs. Disease or disability organizations, such as United Cerebral Palsy or Muscular Dystrophy Association, are another good source of information for families, as are parent-to-parent support groups. The second challenge for parents is to understand and accept the role of an intermediary between their children and the outside world. Families are the ultimate decision makers. They are the ones who decide if, when, and where they are going to take their children for
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treatment. Parents often need assistance in developing the skills necessary to manage the systems of care and services to the benefit of their children. A stated purpose of the Michigan Parent Participation Program was to create a structure in which policies of the DCSHCS would be driven by the people upon whom they had the most significant impact. Families are the ones that have to live with decisions that are made, and that must incorporate those decisions into their lives. It is important that professionals view the significant role of families appropriately. One way of doing this is to develop mechanisms by which parental input can be garnered. These mechanisms are explained in greater detail in a subsequent section. An additional role for families is to engage in partnerships with other members of the health care team. It is everyone’s responsibility to engage in partnerships and work together. When approaching the idea of working with families, one needs to discard the concept of what comprises the “traditional family.” A professional must go beyond the surface and really believe and accept that every family has something positive to bring to a child. Such a perception will lead to the development of a positive atmosphere, in which parents and professionals can engage in partnerships that will support the children in need. What follows is a discussion of the role played by two professional groups in promoting partnerships.
THE PROFESSIONAL ROLE Nurses Nurses comprise the largest group of health care providers in the United States. They practice in a variety of settings, such as hospitals, homes, clinics, schools, extended care facilities, public health agencies, physician’s offices, and independent group or individual practices. They practice as direct care providers, educators, researchers, managers, and clinical specialists. Because of the variety of settings and roles and the magnitude in numbers, the ability of pediatric nurses to impact on the lives of children with special health care needs and their families is significant. Like pediatricians, pediatric nurses have long recognized the pivotal role that families play in the lives of their children. There are many opportunities for partnerships that can be focused on optimizing the health and welfare of the children in need. This discussion focuses on ways in which Michigan’s DCSHCS program has attempted to enhance the understanding of nurses in this state of the potential impact they
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have on developing partnerships with parents of children with special needs. ParentuUNursing Purtnerships in Michigan
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In the mid-l980s, the DCSHCS program adopted the elements of family-centered care as outlined by the Association for the Care of Children’s Health (Shelton, et al., 1987). The second element speaks to facilitation of parent/professional collaboration at all levels of health care. Professional Nursing Roles
The nurse consultants and clinical nurse specialists within DCSHCS have served in a unique role in fostering parenthursing collaboration among nurses practicing in a variety of settings. How that influence has been demonstrated is discussed. Public/Cornrnunity Health Nursing Role
Public health nurses (PHN) throughout the state of Michigan participate in providing care to DCSHCS clients through the Locally Based Services (LBS) program. LBS is a community-based program that provides case finding, family assessments, and case management services to families of children with special health care needs, as described in the Numinen et al. article in this issue. Information and education regarding the elements of family-centered care have been presented and discussed with these nurses during in-service and staff development trainings. Particular focus has been given to the opportunities that these community health nurses have to foster partnerships with families for the benefit of the children. Community health nurses collaborate with families of children with special needs in a variety of ways via the LBS program. Through case finding activities, nurses can refer children for diagnostic evaluations if history and symptoms indicate that they may have a condition that might qualify them for DCSHCS program services. By explaining the diagnostic process to the parents, nurses can help parents question the providers of their children’s care to enhance their own understanding. If diagnosed with a condition that would support medical eligibility for the DCSHCS program, families are again seen by a public health nurse for a family assessment. If areas of concern are uncovered during the assessment process, the PHN provides the parents with information, referrals, or continued direct service. Throughout this process, the focus is on assisting families in decision-making that would optimize their abilities to care for their children with special needs and other family members.
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In some instances, families are in need of substantial support to resolve issues that may be problematic for them. To that end, the local health department PHNs provide case management services. The goal of the case management activities is to help families develop skills in problem solving, advocacy, and management of the human services system. To attain such a goal, it is incumbent on the nurse to develop an understanding of what the families’ priorities are and how they are most comfortable in moving toward resolution of outstanding concerns. It is with such an open and respectful approach that true partnerships between parents and nurses can be developed. A primary supportive influence for the PHNs in Michigan have been the DCSHCS nurse consultants. They are a group of masters-prepared nurses with unique expertise in pediatrics, community/public health, and chronic childhood illness. They provide day-to-day support and ongoing consultation and continuing education to PHNs throughout the state related to the clinical care provision for these children. As a basis for that support, the elements of family-centered care serve as the primary referent. Every opportunity to discuss the pivotal role of the family and to encourage the development of partnerships is utilized. It is believed that through these efforts, at least in part, a substantial influence has been brought to bear on the attitude of community health nurses toward valuing parent/professional partnerships. Although many children are brought to the attention of the program through diagnostic referrals, a greater number are found through inpatient hospital stays. The potential for partnerships that abound in this setting are discussed. Hospital Nursing Roles
In the hospital environment, nurses in a variety of roles interact with the parents of children with special health care needs. Unit based staff nurses and clinical managers, clinical nurse specialists, and discharge coordinators all potentially have contact with this population. Each can be instrumental in collaborating with families. For the staff or primary nurse, it is important that he or she have an attitude that indicates awareness that the true experts in the needs of the children are the parents. Supporting and encouraging parents to participate in the planning and execution of their children’s care helps to establish an open, trusting relationship between the nurse and the parents. Such a partnership can only ultimately benefit the children. Clinical nurse specialists (CNS) often play a multifaceted role of advocate, advisor, mentor, and consultant both to in-patient and out-patient staff, as well as to families. Because of the scope of expanded practice in which the CNSs often function, and their advanced clinical knowledge,
they are in a good position to foster, support, and nurture parent/ professional collaboration. Many hospital settings utilize CNSs as discharge coordinators. The role of the discharge coordinator takes on a unique characteristics when the client is a child. To effect a safe and clinically sound plan for home follow-up, children’s parents, or other family members, must be involved. Through this approach, once again, nurses are provided with an opportunity to engage in partnerships with parents. Open communication and support must be a valued component of the planning process for discharge. Without it, hospital stays can be prolonged, and families can be left feeling as though their concerns and ideas are of little value. Issues Compr Pediatr Nurs Downloaded from informahealthcare.com by Nyu Medical Center on 02/20/15 For personal use only.
m e Role of Specialized Care Managers
Another unique role for the CNS has been developed by the DCSHCS. This unique CNS role is referred to as specialized care managers (SCM). These clinical nurse specialists are assigned to the Specialized Home Care Program (SHCP). The goal of the SHCP is to assist in the development of a supported home care program for children who are medically fragile and technology dependent. Although requiring extensive care, these children are nonetheless stable enough to be cared for at home with adequate supports. The SCM is a critical link between the hospital discharge planning team, the community providers who will assist the families at home, and the families themselves. SCMs have attained high levels of sophistication in helping families acquire skills in playing a primary role in the care of these children. All of these children have complicated medical conditions and high health needs. Most are discharged home directly from Intensive Care Units (ICU). ICUs historically have not been environments where parents were encouraged to actively participate in the care of their children. This is changing, however. Technological advances have prolonged or saved the lives of children who, in the past, would have succumbed to their conditions or been placed in institutions for long-term care. Currently, long-term care often occurs in the ICU itself, with stays of up to a year or more. Parents need to be involved in their children’s care while in the ICU. In addition, as supported home care plans are developed, the team of nurses must work together to prepare the children and their families for discharge. The DCSHCS SCMs use every opportunity to instill the elements of family-centered care into the home care planning process. They instruct the hospital-based nurses in the importance of listening to families to discern their wishes, desires, strengths, concerns, and fears. They encourage the hospital staff to pay attention to the resources that may or may not be available to the families and community providers in the
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home environment. By doing so, they can work as partners with the families and community team to avoid establishing unrealistic expectation in the home environment. Likewise, the SCMs often serve as interpreters of information for the community team. These teams are often a great distance from the tertiary center, and struggle with the constraints of long-distance planning to receive the children. The SCMs serve a facilitative and coordinating role with the families to ensure that all parties who care for the children are adequately trained in responding to the children’s needs. Most importantly, they value, respect, and encourage the families’ input about what they believe is necessary to create a successful, supported home care structure. Very important partnerships are formed between parents and nurses who are employed in Home Health Agencies, particularly for those children who receive specialized home care program services. A discussion of the role of the home care nurse follows. The Home Health Nursing Role
Once children are successfully discharged, the role of the home health nurse (HHN) is prominent. Generally, there are two distinct roles taken on by home health agency (HHA) staff with children receiving specialized home care. One is that of the staff nurse who comes to the family’s home and assists them in the daily care of the child. The other is the supervising or skilled nurse who has particular expertise in pediatrics and home health. The skilled nurse, in cooperation with the SCM, is responsible for assuring that a safe and appropriate plan of care is developed and carried out in the home environment. Often adjustments need to be made in the plan of care. These issues can occur not only because of a change in the child’s condition, but also because of other circumstances surrounding the family. Home health nurses are invaluable resourqes to a family that is attempting to manage a child with complex care needs while simultaneously integrating them into their normal family routine. Another portion of the DCSHCS population, not on SHCP, also receive skilled nursing interventions. These children and their families need limited supports that assist them in acquiring skills to manage the children’s health needs. These services are educative and supportive in nature and assume that the parents are capable of becoming the children’s primary caregivers after acquiring adequate skills. The skilled pediatric nurses approach families with the attitude that their primary role is to assist the families in gaining competency in all facets of their children’s care. Facilitating the development of knowledge and skills in families in the care of their children can be a very exciting process for
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the nurse. Together, in partnerships with families, nurses in various settings have a major role to play in facilitating the discharge and ongoing home care of children with high health needs.
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Physicians Physicians traditionally have been viewed as the driving force of the health care system. Historically, the position that physicians have held in society has been one of highest esteem, with the physician literally making life and death decisions. Patients and their families were “cared for” in a well-meaning, but paternalistic manner. This approach to care has been changing in recent years, as a result of consumer activism and social trends. Family-centered care is certainly a reflection of this evolution. Family-centered care shifts the traditional balance of power within the health care system. Family-centered care is redirecting the focus of service delivery, so that the needs of families are first and foremost, rather than the needs and expectations of the health care providers. This can be challenging, and indeed uncomfortable, for physicians and others who work within the health care system. Some may believe that familycentered care gives families too much power or control. However, we recognize the central, critical role families have as the constant in the children’s lives. Pediatricians have understood the important influence that the children’s environment , largely their families, has on long-term social, behavioral, cognitive, and physical well-being. Although it is apparent that children live in families, and that their lives are shaped by those families, it is essential that we acknowledge this simple fact of life. Roles and Responsibilities of the Pediatrician
The role of the pediatrician varies, dependent upon the professional setting. The role of the primary care provider might be quite different from that of the tertiary care subspecialist. There are, however, certain roles or responsibilities that are universal to all pediatricians, regardless of their practice setting or their training. Respect the family. Pediatricians must examine their attitudes and actions to determine whether they truly respect families with which they work. Do they place values on what families tell them? Do they listen attentively? Do they give credence to the validity of their individual and collective experience? Do they recognize parents as experts in the unique characteristics of their children? A good pediatrician is competent, well trained, and knowledgeable; anything less is unacceptable. This, however, is not enough. The quality
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pediatrician must be able to, as a colleague put it, “pass their mommy boards.” The good pediatrician must be able to relate to people at a personal level; he or she must be an effective communicator. Being technically competent, but unable to communicate with families, is as unfulfilling as being a highly effective communicator with inadequate technical skills. Families need to receive accurate information. Education is an important tool in the empowerment of families, allowing them to be effective advocates for their children and active participants in their children’s care. Information can be given in a variety of ways, including the use of written or audiovisual materials, direct communication, or referral to a specialist or parent support group. Pediatricians, particularly in their role as providers for children with special health care needs, may provide coordination and/or provision of on-going care in conjunction with medical and nonmedical specialists and relevant community resources. This care coordination role is increasingly being recognized as an important role for the communitybased pediatrician. The American Academy of Pediatrics, in its prornotion of the medical home concept, has acknowledged the value of this activity. Pediatricians must be supportive of families. The physician can be a powerful ally and partner for families. As medical regiments become increasingly complex, and as scientific advances progress at a dizzying pace, care must be taken not to allow the technology of medicine to overwhelm the “art” of medicine. That is, physicians need be ever mindful that the most important tools they possess are their humanity as caring, giving people; their empathy; their compassion; and their ability to see the people and not just the disease process. Only then might they truly fulfill their mission of becoming partners in care.
THE SYSTEM ROLE To identify “the system” is difficult at best. To define its role in concrete terms is an illusive task. The system, after all, is composed of people and the attitude that they take, and the collective understanding of any issue can have a profound impact on innovation, progress, or stagnation. Fortunately, the Michigan program for children with special care needs has been privileged to have had leaders, both past and present, who believed in the concept of family-centered care. It is they who sparked the ideas and lent support to the staff who struggled with the implementation of new and emerging ideas. In Michigan, the system is also composed of a strong advocacy network for children. This network has been extremely helpful in com-
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municating important issues across the state. Furthermore, we are fortunate in having enlightened members among our provider community who were willing to engage with the Division in the long-term process of changing attitudes related to our recipients of service. The best way to define the role of the system is to describe the activities that successfully implemented parent/professional partnerships and familycentered care.
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STRATEGIES FOR IMPLEMENTATION To develop parent/professional partnerships, and thus implement the elements of family-centered care, varying strategies were employed. These strategies included integration, collaboration, support, and information. Definitions were based on knowledge of the current state-of-the-art and both local and national efforts to implement family-centered care through parent/professional partnerships. Although all programs have elements of each strategy, select examples are discussed to highlight certain themes.
Integration Integration demands that state agencies have a written policy that reflects the pivotal role of families. In Michigan, there are at least three program areas that reflect integration. Each one is discussed briefly. In 1988, the Parent Participation Program was implemented to strengthen the relationship between the Michigan Department of Public Health, Division of Children’s Special Health Care Service and families. The primary goals of the program are to: (a) provide a mechanism for parental input to DCSHCS policy development and program implementation, and (b) develop a network of parent-to-parent support statewide. This program is staffed by the parent of a child with special health care needs who acts as a Division consultant on family issues. Additionally, each DCSHCS regional office is staffed by a paid parent consultant (supported by grants from the Skillman Foundation and the Bureau of Maternal and Child Health, Department of Health and Human Services). A new project, “Project Uptown,” is designed to more fully involve families from minority communities in the Parent Participation Program. A second means of integrating families fully into Division activities is through the Children’s Special Health Care Services Advisory Committee. This standing committee’s responsibility is to advise on matters of consequence to clients of the program. This committee is important because it is composed of significant players in our community, but it is
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also significant because it has parent participation. The co-chairperson is a parent of a special needs child and approximately 20% of the committee is composed of parents. This provides parents with a setting in which they can make meaningful contributions to the workings of the Division, but, more importantly, to the welfare of their children. A third means of integrating parents into the functional decisions of the Division is involving them in the interview process. A parent is invited to become a member of the interview team for each significant position that is filled. This gives validity to the importance of parental input on the front end by asking them to participate in the decisionmaking regarding new employees. This also gives a clear but simple message to the interviewee that parents are important in this program.
Collaboration Through collaboration, families participate fully with professionals in policy development, program implementation, coordination of services, and evaluation of programs. State agencies financially support parent involvement in these activities. The following are examples of Michigan’s efforts in this regard. The Locally Based Services (LBS) program utilizes a care coordinator in each local health department around the state. The primary function of LBS is to identify and enroll children into Division programs, and to coordinate care for those families who need such assistance. A primary means of assisting families is to empower them, via information and resources,to develop the skills necessary to advocate for themselves and their children. LBS is an arena in which a member of a system can interface with families and work out all aspects of children’s care at a community-based level. Provider Approval Task Force, another example of collaboration, was convened in Michigan to develop new criteria for approval of providers who operate in our system. This included hospitals, home health agencies, children’s multidisciplinary specialty clinics, and physicians. A common thread interwoven in all of the approval criteria was the providers’ ability to implement family-centered care in their offices, hospitals, agencies, or interfaces occurring in a family home. This recognized the important role families have in meeting the psychosocial needs of children requiring services from the provider community. Criteria have been developed that provide a structure to assist providers in showing clear evidence that they understand what it means to develop family-centered care.
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support Support requires that state agencies nurture and facilitate the development of a statewide coalition of parents and parent support groups across disabilities. State agencies must encourage referrals to these groups. In Michigan, families are supported in a variety of ways. It also requires that programs develop in areas that have unique and extraordinary needs. Clear evidence exists that support groups composed of like peers do help people manage difficult situations in their lives. The Family Support Network of Michigan (FSN) is in the process of developing community-based systems of family-to-family support. These support groups are unique in that they are cross-disability. It is held that the functional needs of families override diagnostically specific needs. FSNs are parent driven and linked to the local health department. In addition, there is a strong commitment to training. Each year, training conferences are provided for parents who are interested in assuming a leadership role in the development of an FSN in their local community. Through the training process, support parents are provided with a good understanding of the elements and expectations of the leadership role. Currently, there are about 200 parents across the state who are trained to provide parent-to-parent support. These parent leaders are contacted for input and technical expertise by the Division. They sit on task force and advisory committees and support Division staff as they attempt to move forward with the implementation of a family-centered care structure that reflects parent/professional collaboration. Next, support is delivered through the Specialized Home Care Program, which, in Michigan, serves children who are technology dependent. This program strongly exemplifies the strategy of support. The primary goal of the program is to provide families with support that is adequate enough to allow them to care for their highly medically fragile children at home. It is clearly an important area of our program for a small number of children with highly specialized needs.
Information Information sharing is a reciprocal process. State agencies should establish effective, routine mechanisms for receiving information from parents and for disseminating information to them. Agencies should provide: (a) written information describing program services and mechanisms for accessing those services; and (b) ready access to unbiased and complete information from their children’s records. In Michigan, such two-way communication linkages have been pro-
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vided. In addition, efforts have moved forward to implement this strategy through the efforts of local agencies and individual providers. In the context of DCSHCS approved clinics, criteria require that multidisciplinary care is rendered and that information from all staff experts is provided to the families. It is further held that these experts be receivers of important information from families, thus family input should be taken into account when considering care for the children. Several years ago, parents expressed frustration during a FSN meeting that they often had to make a long-distance call to obtain information from the Division, or worse yet, they placed an expensive call, and then did not receive the information they needed or were placed on hold. In response to this, a toll-free hotline was implemented for parents. The goal was to make the Division more responsive to parents, either by providing general information or for trouble shooting and crisis intervention. Information is maintained on the nature of the calls and the ability of staff to be responsive. Therefore, the hotline also has evolved into a useful mechanism for data collection related to problem areas within the Division that need attention. Additional sources of information include the development of several informational brochures for both families and the community at large. In addition, a training manual has been developed for the Parent Participation Project’s FSN to provide guidance to parents who serve as support parents. Each of the strategies described have been useful in moving toward the development of parent/professional partnerships. To the level that these partnerships evolve, so will the implementation of family-centered care progress.
CONCLUSION AND FUTURE DIRECTIONS Some examples have been provided of what can be implemented to develop family-centered services, policies, and programs. There is a sense of commitment to the importance of these principles and truth in the statement that “what you believe is what you do and what you do is what you believe.” Outcomes are determined by what one’s values are, therefore it is important that principles are articulated. The more that family-centered principles are put into action, the more they will become an underlying behavior. It is a fairly simple, but terribly important concept. Attitude is extraordinarily important. The receptionist who sits at the front desk and asks a parent “Yeah, what do you want?” needs an attitude adjustment or a job change. That first encounter influences what a family thinks about a clinic, office, hospital, or staff. It cannot be
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overly emphasized that values determine outcomes. This is important in this era of restricted resources and limited budgets. Many of the programs proposed or in process do not necessarily require money. They require a shift in the way people think and share power. These are things that can be done regardless of the characteristics of a community or a state. Sensitivity to families does not mean that families are psychoanalyzed; it just means that they should be respected. Parents are the experts on the experiences of using systems of care. No one knows more about what it is like to receive a service than the person who is receiving that service. Parents, of course, as the spokespersons for their children, represent that expert point of view. Last, and most important, is that the person who is most flexible will be the catalytic element in the system. If leaders can restructure the way they think and expand their horizons, change within the system can be realized, whether it be at the state, local, or individual provider setting. To predict the future is not within the realm of any person or system, but a question arises as to where all these efforts will lead. Is this family-centered, community-based, coordinated care just a flash in the pan? Will it go the way of hula hoops, pet rocks, and Nehru jackets? Probably not. The partnerships that are being built will last because families are natural allies with health care providers and the systems in which they work. The goals involve the development and expansion of the health and welfare of children, allowing them to develop to their maximum potential and to live in strong, intact families and communities. Simply, family-centered care is natural. Health care professionals have the obligation, as well as the privilege, of assisting families of children with special health care needs on their journeys toward growth, whatever the final destination might be.
REFERENCES Shelton, T. L., Jeppson, E. S . , & Johnson, B. H. (1987). Family-centered-care for children with special health care needs (2nd ed.). Washington, DC: Association for the Care of Children’s Health. U.S. Department of Health and Human Services. (1987). Surgeon General’s Report: Children with special health care needs, Campaign ’87, Commitment to family-centered coordinated care for children with special health care needs (DHHS Publication N o . HRSIDIMC 87-2). Washington, DC: U.S. Government Printing Office.
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DIANNE L. HAAS,Ph.D., R.N. Children ’s Hospital of Michigan
HERMAN B. G W , Jr, M.D. BEVERLY McCONNELL Michigan Department of Public Health
In order for children with special health care needs to be adequately cared for, a variety of integrated, coordinated services are needed to support the children and their families. To facilitate optimal coordination of care for these children, it is imperative that the professionals who serve them engage in a partnership of care with parents or other family members. To that end, the Division of Children’s Special Health Care Services (DCSHCS), Michigan Department of Public Health has carried out a variety of efforts to foster such partnerships. This article describes the efforts that have been carried out over the last few years in Michigan to develop parent/professional partnerships. It is not intended to be a scholarly review of the literature, but rather an explanation of strategies that have been used successfully to develop this important interface. Particular emphasis is given to describing the establishment of partnerships between parents of children with special health care needs and nurses and physicians. Jt is hoped that the sharing of such information will assist others who are just beginning such efforts.
INTRODUCTION Children with special health care needs present unique challenges not only to their parents and families, but also to those who provide them with care and services. Formerly, particularly in the days when severely ill children were placed in institutions, the input of parents was rarely solicited. Rather, the professionals assumed that they were in charge of the children and, if a good rapport was established, would merely share information about the children’s care. Today, children rarely are placed in long-term institutional settings. However, children who, in the past, would have succumbed to their disease are now surviving and presenting our society with new challenges. This article presents information on how Michigan, through its Division of Children’s Special Health Care Services (DCSHCS) proIssues in Comprehensive Pediatric Nursing, 15:39-53, 1992 Copyright 0 1992 by Hemisphere Publishing Co?poration
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gram, has fostered partnerships between parents and professionals, which are mutually beneficial to all those concerned with the well-being of these children and their families.
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Why Parent/Professional Partnerships? In 1987, Dr. C. Everett Koop challenged those concerned with the care of special needs children to commit themselves to implementing a national agenda (U.S.Department of Health and Human Services, 1987). The focus of this agenda was to develop family-centered, communitybased, coordinated health care structures throughout the country to serve this population. The Surgeon General based this call to action on the elements of family-centered care, which were articulated by the Association for the Care of Children’s Health (Shelton, Jeppson, & Johnson, 1987). To truly implement family-centered care, however, it is imperative to develop partnerships. A brief review of the elements of family-centered care, and how they related to Michigan’s developmental efforts are provided. The nine elements of family-centered care (FCC) are enumerated in Table 1. Although each is important to the development of FCC, three are a b l e 1. Elements of Family-Centered Care 1. Recognizing that the family is the constant in a child’s life, while the service
systems and personnel within those systems fluctuate. 2. Faciliating parent/professional collaboration at all levels of health care: care of an individual child; program development, implementation, and evaluation; and policy formation. 3. Honoring the racial, ethnic, cultural, and socioeconomic diversity of families. 4. Recognizing family strengths and individuality and respecting different methods of coping. 5. Sharing with parents, on a continuing basis and in a supportive manner, complete and unbiased information. 6 . Encouraging and facilitating family-to-family support and networking. 7. Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into health care systems. 8. Implementing comprehensive policies and programs that provide emotional and financial support to meet the needs of families. 9. Designing accessible health care systems that are flexible, culturally competent, and responsive to family-identified needs. From Shelton, T. L., Jeppson, E. S., and Johnson, B. H. (1992). Family-Centered Care for Children with Special Health Care Nee&. washington, D.C.: Association for the Care of Children’s Health,2nd Edition, 3rd Printing.
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particularly germane to the development of parent/professional partnerships. The first recognizes that the family is the constant in a child’s life, whereas the service systems and personnel within those systems fluctuate. Although this concept may appear self-evident, the health care system does not always respond in that way. The second element speaks to facilitating parent/professional collaboration at all levels of care. This article focuses on collaboration at a state level, but it is important to realize that such efforts can occur at every level in the health care system. The sixth element encourages and facilitates family-to-family support and networking. The idea here is that families that are experiencing stress and strain should be encouraged to seek out other helpful support mechanisms. This element has served as the philosophical underpinning to much of our parent/professional collaboration efforts. In an effort to explain the evolution of family-centered care in Michigan, the roles of varying groups engaged in parent/professional partnerships are explored. These include: (a) the parental role; (b) the professional role; and (c) the role played by the system of care.
DEVELOPING PARTNERSHIPS The Parental Role When thinking about the role of parents and families in the lives of children with special needs, there ought to be common themes. Furthermore, these themes should appear true and obvious. However, the obvious sometimes needs to be stated over and over again until it is really understood. Therefore, several key roles that need to be carried out by parents of children with special needs are discussed. The first role for parents is to be the constant in their children’s lives. However, parents of children with complex health care needs are, at times, not able to meet all of their needs, hence they seek help from others. Bombardment with input from multiple professionals may result in parents losing sight of their own important role. Therefore, families may need assistance in accepting their role as the constant figures in the lives of their children with special needs. In addition, families need support and information from professionals to engage effectively with others in relation to their children’s care needs. Disease or disability organizations, such as United Cerebral Palsy or Muscular Dystrophy Association, are another good source of information for families, as are parent-to-parent support groups. The second challenge for parents is to understand and accept the role of an intermediary between their children and the outside world. Families are the ultimate decision makers. They are the ones who decide if, when, and where they are going to take their children for
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treatment. Parents often need assistance in developing the skills necessary to manage the systems of care and services to the benefit of their children. A stated purpose of the Michigan Parent Participation Program was to create a structure in which policies of the DCSHCS would be driven by the people upon whom they had the most significant impact. Families are the ones that have to live with decisions that are made, and that must incorporate those decisions into their lives. It is important that professionals view the significant role of families appropriately. One way of doing this is to develop mechanisms by which parental input can be garnered. These mechanisms are explained in greater detail in a subsequent section. An additional role for families is to engage in partnerships with other members of the health care team. It is everyone’s responsibility to engage in partnerships and work together. When approaching the idea of working with families, one needs to discard the concept of what comprises the “traditional family.” A professional must go beyond the surface and really believe and accept that every family has something positive to bring to a child. Such a perception will lead to the development of a positive atmosphere, in which parents and professionals can engage in partnerships that will support the children in need. What follows is a discussion of the role played by two professional groups in promoting partnerships.
THE PROFESSIONAL ROLE Nurses Nurses comprise the largest group of health care providers in the United States. They practice in a variety of settings, such as hospitals, homes, clinics, schools, extended care facilities, public health agencies, physician’s offices, and independent group or individual practices. They practice as direct care providers, educators, researchers, managers, and clinical specialists. Because of the variety of settings and roles and the magnitude in numbers, the ability of pediatric nurses to impact on the lives of children with special health care needs and their families is significant. Like pediatricians, pediatric nurses have long recognized the pivotal role that families play in the lives of their children. There are many opportunities for partnerships that can be focused on optimizing the health and welfare of the children in need. This discussion focuses on ways in which Michigan’s DCSHCS program has attempted to enhance the understanding of nurses in this state of the potential impact they
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have on developing partnerships with parents of children with special needs. ParentuUNursing Purtnerships in Michigan
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In the mid-l980s, the DCSHCS program adopted the elements of family-centered care as outlined by the Association for the Care of Children’s Health (Shelton, et al., 1987). The second element speaks to facilitation of parent/professional collaboration at all levels of health care. Professional Nursing Roles
The nurse consultants and clinical nurse specialists within DCSHCS have served in a unique role in fostering parenthursing collaboration among nurses practicing in a variety of settings. How that influence has been demonstrated is discussed. Public/Cornrnunity Health Nursing Role
Public health nurses (PHN) throughout the state of Michigan participate in providing care to DCSHCS clients through the Locally Based Services (LBS) program. LBS is a community-based program that provides case finding, family assessments, and case management services to families of children with special health care needs, as described in the Numinen et al. article in this issue. Information and education regarding the elements of family-centered care have been presented and discussed with these nurses during in-service and staff development trainings. Particular focus has been given to the opportunities that these community health nurses have to foster partnerships with families for the benefit of the children. Community health nurses collaborate with families of children with special needs in a variety of ways via the LBS program. Through case finding activities, nurses can refer children for diagnostic evaluations if history and symptoms indicate that they may have a condition that might qualify them for DCSHCS program services. By explaining the diagnostic process to the parents, nurses can help parents question the providers of their children’s care to enhance their own understanding. If diagnosed with a condition that would support medical eligibility for the DCSHCS program, families are again seen by a public health nurse for a family assessment. If areas of concern are uncovered during the assessment process, the PHN provides the parents with information, referrals, or continued direct service. Throughout this process, the focus is on assisting families in decision-making that would optimize their abilities to care for their children with special needs and other family members.
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In some instances, families are in need of substantial support to resolve issues that may be problematic for them. To that end, the local health department PHNs provide case management services. The goal of the case management activities is to help families develop skills in problem solving, advocacy, and management of the human services system. To attain such a goal, it is incumbent on the nurse to develop an understanding of what the families’ priorities are and how they are most comfortable in moving toward resolution of outstanding concerns. It is with such an open and respectful approach that true partnerships between parents and nurses can be developed. A primary supportive influence for the PHNs in Michigan have been the DCSHCS nurse consultants. They are a group of masters-prepared nurses with unique expertise in pediatrics, community/public health, and chronic childhood illness. They provide day-to-day support and ongoing consultation and continuing education to PHNs throughout the state related to the clinical care provision for these children. As a basis for that support, the elements of family-centered care serve as the primary referent. Every opportunity to discuss the pivotal role of the family and to encourage the development of partnerships is utilized. It is believed that through these efforts, at least in part, a substantial influence has been brought to bear on the attitude of community health nurses toward valuing parent/professional partnerships. Although many children are brought to the attention of the program through diagnostic referrals, a greater number are found through inpatient hospital stays. The potential for partnerships that abound in this setting are discussed. Hospital Nursing Roles
In the hospital environment, nurses in a variety of roles interact with the parents of children with special health care needs. Unit based staff nurses and clinical managers, clinical nurse specialists, and discharge coordinators all potentially have contact with this population. Each can be instrumental in collaborating with families. For the staff or primary nurse, it is important that he or she have an attitude that indicates awareness that the true experts in the needs of the children are the parents. Supporting and encouraging parents to participate in the planning and execution of their children’s care helps to establish an open, trusting relationship between the nurse and the parents. Such a partnership can only ultimately benefit the children. Clinical nurse specialists (CNS) often play a multifaceted role of advocate, advisor, mentor, and consultant both to in-patient and out-patient staff, as well as to families. Because of the scope of expanded practice in which the CNSs often function, and their advanced clinical knowledge,
they are in a good position to foster, support, and nurture parent/ professional collaboration. Many hospital settings utilize CNSs as discharge coordinators. The role of the discharge coordinator takes on a unique characteristics when the client is a child. To effect a safe and clinically sound plan for home follow-up, children’s parents, or other family members, must be involved. Through this approach, once again, nurses are provided with an opportunity to engage in partnerships with parents. Open communication and support must be a valued component of the planning process for discharge. Without it, hospital stays can be prolonged, and families can be left feeling as though their concerns and ideas are of little value. Issues Compr Pediatr Nurs Downloaded from informahealthcare.com by Nyu Medical Center on 02/20/15 For personal use only.
m e Role of Specialized Care Managers
Another unique role for the CNS has been developed by the DCSHCS. This unique CNS role is referred to as specialized care managers (SCM). These clinical nurse specialists are assigned to the Specialized Home Care Program (SHCP). The goal of the SHCP is to assist in the development of a supported home care program for children who are medically fragile and technology dependent. Although requiring extensive care, these children are nonetheless stable enough to be cared for at home with adequate supports. The SCM is a critical link between the hospital discharge planning team, the community providers who will assist the families at home, and the families themselves. SCMs have attained high levels of sophistication in helping families acquire skills in playing a primary role in the care of these children. All of these children have complicated medical conditions and high health needs. Most are discharged home directly from Intensive Care Units (ICU). ICUs historically have not been environments where parents were encouraged to actively participate in the care of their children. This is changing, however. Technological advances have prolonged or saved the lives of children who, in the past, would have succumbed to their conditions or been placed in institutions for long-term care. Currently, long-term care often occurs in the ICU itself, with stays of up to a year or more. Parents need to be involved in their children’s care while in the ICU. In addition, as supported home care plans are developed, the team of nurses must work together to prepare the children and their families for discharge. The DCSHCS SCMs use every opportunity to instill the elements of family-centered care into the home care planning process. They instruct the hospital-based nurses in the importance of listening to families to discern their wishes, desires, strengths, concerns, and fears. They encourage the hospital staff to pay attention to the resources that may or may not be available to the families and community providers in the
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home environment. By doing so, they can work as partners with the families and community team to avoid establishing unrealistic expectation in the home environment. Likewise, the SCMs often serve as interpreters of information for the community team. These teams are often a great distance from the tertiary center, and struggle with the constraints of long-distance planning to receive the children. The SCMs serve a facilitative and coordinating role with the families to ensure that all parties who care for the children are adequately trained in responding to the children’s needs. Most importantly, they value, respect, and encourage the families’ input about what they believe is necessary to create a successful, supported home care structure. Very important partnerships are formed between parents and nurses who are employed in Home Health Agencies, particularly for those children who receive specialized home care program services. A discussion of the role of the home care nurse follows. The Home Health Nursing Role
Once children are successfully discharged, the role of the home health nurse (HHN) is prominent. Generally, there are two distinct roles taken on by home health agency (HHA) staff with children receiving specialized home care. One is that of the staff nurse who comes to the family’s home and assists them in the daily care of the child. The other is the supervising or skilled nurse who has particular expertise in pediatrics and home health. The skilled nurse, in cooperation with the SCM, is responsible for assuring that a safe and appropriate plan of care is developed and carried out in the home environment. Often adjustments need to be made in the plan of care. These issues can occur not only because of a change in the child’s condition, but also because of other circumstances surrounding the family. Home health nurses are invaluable resourqes to a family that is attempting to manage a child with complex care needs while simultaneously integrating them into their normal family routine. Another portion of the DCSHCS population, not on SHCP, also receive skilled nursing interventions. These children and their families need limited supports that assist them in acquiring skills to manage the children’s health needs. These services are educative and supportive in nature and assume that the parents are capable of becoming the children’s primary caregivers after acquiring adequate skills. The skilled pediatric nurses approach families with the attitude that their primary role is to assist the families in gaining competency in all facets of their children’s care. Facilitating the development of knowledge and skills in families in the care of their children can be a very exciting process for
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the nurse. Together, in partnerships with families, nurses in various settings have a major role to play in facilitating the discharge and ongoing home care of children with high health needs.
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Physicians Physicians traditionally have been viewed as the driving force of the health care system. Historically, the position that physicians have held in society has been one of highest esteem, with the physician literally making life and death decisions. Patients and their families were “cared for” in a well-meaning, but paternalistic manner. This approach to care has been changing in recent years, as a result of consumer activism and social trends. Family-centered care is certainly a reflection of this evolution. Family-centered care shifts the traditional balance of power within the health care system. Family-centered care is redirecting the focus of service delivery, so that the needs of families are first and foremost, rather than the needs and expectations of the health care providers. This can be challenging, and indeed uncomfortable, for physicians and others who work within the health care system. Some may believe that familycentered care gives families too much power or control. However, we recognize the central, critical role families have as the constant in the children’s lives. Pediatricians have understood the important influence that the children’s environment , largely their families, has on long-term social, behavioral, cognitive, and physical well-being. Although it is apparent that children live in families, and that their lives are shaped by those families, it is essential that we acknowledge this simple fact of life. Roles and Responsibilities of the Pediatrician
The role of the pediatrician varies, dependent upon the professional setting. The role of the primary care provider might be quite different from that of the tertiary care subspecialist. There are, however, certain roles or responsibilities that are universal to all pediatricians, regardless of their practice setting or their training. Respect the family. Pediatricians must examine their attitudes and actions to determine whether they truly respect families with which they work. Do they place values on what families tell them? Do they listen attentively? Do they give credence to the validity of their individual and collective experience? Do they recognize parents as experts in the unique characteristics of their children? A good pediatrician is competent, well trained, and knowledgeable; anything less is unacceptable. This, however, is not enough. The quality
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pediatrician must be able to, as a colleague put it, “pass their mommy boards.” The good pediatrician must be able to relate to people at a personal level; he or she must be an effective communicator. Being technically competent, but unable to communicate with families, is as unfulfilling as being a highly effective communicator with inadequate technical skills. Families need to receive accurate information. Education is an important tool in the empowerment of families, allowing them to be effective advocates for their children and active participants in their children’s care. Information can be given in a variety of ways, including the use of written or audiovisual materials, direct communication, or referral to a specialist or parent support group. Pediatricians, particularly in their role as providers for children with special health care needs, may provide coordination and/or provision of on-going care in conjunction with medical and nonmedical specialists and relevant community resources. This care coordination role is increasingly being recognized as an important role for the communitybased pediatrician. The American Academy of Pediatrics, in its prornotion of the medical home concept, has acknowledged the value of this activity. Pediatricians must be supportive of families. The physician can be a powerful ally and partner for families. As medical regiments become increasingly complex, and as scientific advances progress at a dizzying pace, care must be taken not to allow the technology of medicine to overwhelm the “art” of medicine. That is, physicians need be ever mindful that the most important tools they possess are their humanity as caring, giving people; their empathy; their compassion; and their ability to see the people and not just the disease process. Only then might they truly fulfill their mission of becoming partners in care.
THE SYSTEM ROLE To identify “the system” is difficult at best. To define its role in concrete terms is an illusive task. The system, after all, is composed of people and the attitude that they take, and the collective understanding of any issue can have a profound impact on innovation, progress, or stagnation. Fortunately, the Michigan program for children with special care needs has been privileged to have had leaders, both past and present, who believed in the concept of family-centered care. It is they who sparked the ideas and lent support to the staff who struggled with the implementation of new and emerging ideas. In Michigan, the system is also composed of a strong advocacy network for children. This network has been extremely helpful in com-
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municating important issues across the state. Furthermore, we are fortunate in having enlightened members among our provider community who were willing to engage with the Division in the long-term process of changing attitudes related to our recipients of service. The best way to define the role of the system is to describe the activities that successfully implemented parent/professional partnerships and familycentered care.
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STRATEGIES FOR IMPLEMENTATION To develop parent/professional partnerships, and thus implement the elements of family-centered care, varying strategies were employed. These strategies included integration, collaboration, support, and information. Definitions were based on knowledge of the current state-of-the-art and both local and national efforts to implement family-centered care through parent/professional partnerships. Although all programs have elements of each strategy, select examples are discussed to highlight certain themes.
Integration Integration demands that state agencies have a written policy that reflects the pivotal role of families. In Michigan, there are at least three program areas that reflect integration. Each one is discussed briefly. In 1988, the Parent Participation Program was implemented to strengthen the relationship between the Michigan Department of Public Health, Division of Children’s Special Health Care Service and families. The primary goals of the program are to: (a) provide a mechanism for parental input to DCSHCS policy development and program implementation, and (b) develop a network of parent-to-parent support statewide. This program is staffed by the parent of a child with special health care needs who acts as a Division consultant on family issues. Additionally, each DCSHCS regional office is staffed by a paid parent consultant (supported by grants from the Skillman Foundation and the Bureau of Maternal and Child Health, Department of Health and Human Services). A new project, “Project Uptown,” is designed to more fully involve families from minority communities in the Parent Participation Program. A second means of integrating families fully into Division activities is through the Children’s Special Health Care Services Advisory Committee. This standing committee’s responsibility is to advise on matters of consequence to clients of the program. This committee is important because it is composed of significant players in our community, but it is
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also significant because it has parent participation. The co-chairperson is a parent of a special needs child and approximately 20% of the committee is composed of parents. This provides parents with a setting in which they can make meaningful contributions to the workings of the Division, but, more importantly, to the welfare of their children. A third means of integrating parents into the functional decisions of the Division is involving them in the interview process. A parent is invited to become a member of the interview team for each significant position that is filled. This gives validity to the importance of parental input on the front end by asking them to participate in the decisionmaking regarding new employees. This also gives a clear but simple message to the interviewee that parents are important in this program.
Collaboration Through collaboration, families participate fully with professionals in policy development, program implementation, coordination of services, and evaluation of programs. State agencies financially support parent involvement in these activities. The following are examples of Michigan’s efforts in this regard. The Locally Based Services (LBS) program utilizes a care coordinator in each local health department around the state. The primary function of LBS is to identify and enroll children into Division programs, and to coordinate care for those families who need such assistance. A primary means of assisting families is to empower them, via information and resources,to develop the skills necessary to advocate for themselves and their children. LBS is an arena in which a member of a system can interface with families and work out all aspects of children’s care at a community-based level. Provider Approval Task Force, another example of collaboration, was convened in Michigan to develop new criteria for approval of providers who operate in our system. This included hospitals, home health agencies, children’s multidisciplinary specialty clinics, and physicians. A common thread interwoven in all of the approval criteria was the providers’ ability to implement family-centered care in their offices, hospitals, agencies, or interfaces occurring in a family home. This recognized the important role families have in meeting the psychosocial needs of children requiring services from the provider community. Criteria have been developed that provide a structure to assist providers in showing clear evidence that they understand what it means to develop family-centered care.
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support Support requires that state agencies nurture and facilitate the development of a statewide coalition of parents and parent support groups across disabilities. State agencies must encourage referrals to these groups. In Michigan, families are supported in a variety of ways. It also requires that programs develop in areas that have unique and extraordinary needs. Clear evidence exists that support groups composed of like peers do help people manage difficult situations in their lives. The Family Support Network of Michigan (FSN) is in the process of developing community-based systems of family-to-family support. These support groups are unique in that they are cross-disability. It is held that the functional needs of families override diagnostically specific needs. FSNs are parent driven and linked to the local health department. In addition, there is a strong commitment to training. Each year, training conferences are provided for parents who are interested in assuming a leadership role in the development of an FSN in their local community. Through the training process, support parents are provided with a good understanding of the elements and expectations of the leadership role. Currently, there are about 200 parents across the state who are trained to provide parent-to-parent support. These parent leaders are contacted for input and technical expertise by the Division. They sit on task force and advisory committees and support Division staff as they attempt to move forward with the implementation of a family-centered care structure that reflects parent/professional collaboration. Next, support is delivered through the Specialized Home Care Program, which, in Michigan, serves children who are technology dependent. This program strongly exemplifies the strategy of support. The primary goal of the program is to provide families with support that is adequate enough to allow them to care for their highly medically fragile children at home. It is clearly an important area of our program for a small number of children with highly specialized needs.
Information Information sharing is a reciprocal process. State agencies should establish effective, routine mechanisms for receiving information from parents and for disseminating information to them. Agencies should provide: (a) written information describing program services and mechanisms for accessing those services; and (b) ready access to unbiased and complete information from their children’s records. In Michigan, such two-way communication linkages have been pro-
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vided. In addition, efforts have moved forward to implement this strategy through the efforts of local agencies and individual providers. In the context of DCSHCS approved clinics, criteria require that multidisciplinary care is rendered and that information from all staff experts is provided to the families. It is further held that these experts be receivers of important information from families, thus family input should be taken into account when considering care for the children. Several years ago, parents expressed frustration during a FSN meeting that they often had to make a long-distance call to obtain information from the Division, or worse yet, they placed an expensive call, and then did not receive the information they needed or were placed on hold. In response to this, a toll-free hotline was implemented for parents. The goal was to make the Division more responsive to parents, either by providing general information or for trouble shooting and crisis intervention. Information is maintained on the nature of the calls and the ability of staff to be responsive. Therefore, the hotline also has evolved into a useful mechanism for data collection related to problem areas within the Division that need attention. Additional sources of information include the development of several informational brochures for both families and the community at large. In addition, a training manual has been developed for the Parent Participation Project’s FSN to provide guidance to parents who serve as support parents. Each of the strategies described have been useful in moving toward the development of parent/professional partnerships. To the level that these partnerships evolve, so will the implementation of family-centered care progress.
CONCLUSION AND FUTURE DIRECTIONS Some examples have been provided of what can be implemented to develop family-centered services, policies, and programs. There is a sense of commitment to the importance of these principles and truth in the statement that “what you believe is what you do and what you do is what you believe.” Outcomes are determined by what one’s values are, therefore it is important that principles are articulated. The more that family-centered principles are put into action, the more they will become an underlying behavior. It is a fairly simple, but terribly important concept. Attitude is extraordinarily important. The receptionist who sits at the front desk and asks a parent “Yeah, what do you want?” needs an attitude adjustment or a job change. That first encounter influences what a family thinks about a clinic, office, hospital, or staff. It cannot be
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overly emphasized that values determine outcomes. This is important in this era of restricted resources and limited budgets. Many of the programs proposed or in process do not necessarily require money. They require a shift in the way people think and share power. These are things that can be done regardless of the characteristics of a community or a state. Sensitivity to families does not mean that families are psychoanalyzed; it just means that they should be respected. Parents are the experts on the experiences of using systems of care. No one knows more about what it is like to receive a service than the person who is receiving that service. Parents, of course, as the spokespersons for their children, represent that expert point of view. Last, and most important, is that the person who is most flexible will be the catalytic element in the system. If leaders can restructure the way they think and expand their horizons, change within the system can be realized, whether it be at the state, local, or individual provider setting. To predict the future is not within the realm of any person or system, but a question arises as to where all these efforts will lead. Is this family-centered, community-based, coordinated care just a flash in the pan? Will it go the way of hula hoops, pet rocks, and Nehru jackets? Probably not. The partnerships that are being built will last because families are natural allies with health care providers and the systems in which they work. The goals involve the development and expansion of the health and welfare of children, allowing them to develop to their maximum potential and to live in strong, intact families and communities. Simply, family-centered care is natural. Health care professionals have the obligation, as well as the privilege, of assisting families of children with special health care needs on their journeys toward growth, whatever the final destination might be.
REFERENCES Shelton, T. L., Jeppson, E. S . , & Johnson, B. H. (1987). Family-centered-care for children with special health care needs (2nd ed.). Washington, DC: Association for the Care of Children’s Health. U.S. Department of Health and Human Services. (1987). Surgeon General’s Report: Children with special health care needs, Campaign ’87, Commitment to family-centered coordinated care for children with special health care needs (DHHS Publication N o . HRSIDIMC 87-2). Washington, DC: U.S. Government Printing Office.
