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PROGRAM DEVELOPMENT

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THE SOCIAL WORKER'S ROLE IN SCHOOL VISITS

National Hemophilia Foundation Orientation Manual for Healthcare Professionals

THE SOCIAL WORKER'S ROLE IN SCHOOL VISITS Bobbie Steinhart, LCSW, Children's Hospital Oakland, Oakland, California Updated in 2001 by Susan Kocik, MSW, CSW

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INTRODUCTION Clinical social work with families of children and adolescents living with chronic, genetic medical conditions is a unique practice opportunity. Focus is often on the effectiveness of the family's coping skills at crisis points. This article discusses the social worker's role during one of the periods of increased family stress: enrollment in school or a program outside the home or transfer to a new school or program. The long-established system of federally funded comprehensive hemophilia care centers provides the opportunity for continuity of social work involvement. The natural history of hemophilia results in considerable clinic contact during the preschool years. Routinely offering school visits normalizes this preventive intervention for parents who might otherwise misperceive the center's offer as somehow related to a critical judgment of them or their child. By the time a youngster is ready for daycare, nursery school, or kindergarten, the relationship between the family and the social worker is well established. Thus, parents are often receptive to a school visit with hemophilia treatment center personnel when the child or adolescent is enrolling in or transferring to a new school. Collaboration between the hemophilia treatment center (HTC) social worker, the nurse, and the family is integral to planning a school visit. At some treatment centers, the nurse is the primary contact with daycare providers and schools. At other centers, the social worker coordinates the visit. Collaboration among HTC personnel reinforces team relationships and increases the likelihood of an effective presentation. Consider dividing the presentation, having the nurse present medical and first aid issues and the social worker present developmental and social adjustment issues. A childcare or school site visit requires parental consent, and the child's assent to the visit is also valuable. Talk to the parents before the visit to determine the extent to which the child is participating in the process, and to clarify the objectives of the presentation, and any special concerns they or the child may have. It is important to make sure the child's concerns are included. If the child lacks the necessary language development to participate, talk with the parents about when they will actively involve him/her. If the social worker assesses the child or adolescent is inappropriately excluded, discuss with the parents how they plan to eventually include the child in decisions affecting him/her. This information helps the social worker assess the parents' expectations for their child. For example, if they think of him/her as handicapped, they may consider it essential to run interference for him/her at the school and other systems. If they believe he/she is developmentally normal with potential to be successful, they are more likely to involve

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him/her in ways that promote positive self-esteem, independence, and effective communication.

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There are times when a family may request a school visit. The presenting problems may include teasing by peers, or questions from staff about absences, late school assignments, or learning needs. The questions and teasing may be related to the child's bleeding history and the recovery process, including the use of crutches, or the inexplicably quick recovery from a bleed. Whoever requests the visit and regardless of the presenting problem, the planning process is essentially the same. Discuss the content of the presentation with the parents and patient. During the planning, learn from them what issues concern them, what topics they want covered, and whether they want to be present at the school meeting. Discuss whom you will meet with at the school, such as the school nurse and/or teachers. Encourage the family to actively participate. For specific details of the medical content, recommend the parents speak directly with the HTC nurse. Explain the nature of the HTC nurse's presentation, which includes a review of the child or adolescent's bleeding disorder and individual management. Inform them the HTC nurse may talk about the improved safety of treatment options, and the protective value of prophylaxis. Take advantage of opportunities to explain universal precautions. Because the school staff is often predominantly female, it may also be appropriate to include information about bleeding disorders affecting women. No confidential information should be revealed about the family or the child without specific, written parental consent. When a child or adolescent is a ward of the court, consult with the agency and social worker responsible for the youngster, during the initial planning stages. Encourage parents to talk directly with the appropriate school contact person. Make sure that school personnel know how to reach parents at all times, and that the school understands when they must make contact. It is also helpful to know if the school will allow parents or adolescents trained in home infusion to administer factor replacement products on-site. Some schools allow for storage of one or two doses in their infirmary and will agree to have school nurses learn infusion techniques. Work with the family to facilitate the child's academic progress during periods of disability, if any, by encouraging the parents to maintain contact with the teacher and home and hospital school programs. SOCIAL WORK ISSUES The social worker represents the family's perspective, presents information relevant to the child's and adolescent's developmental stage, and reinforces the importance of normalizing his/her experiences. The social worker contributes essential psychosocial information, emphasizing the value of collaborative, comprehensive, and multidisciplinary planning in order to optimize the child's learning. If parents attend the

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school visit, enable them to appropriately interject information about the child's unique needs and their own concerns. Some social workers use slides of children with hemophilia to facilitate the talk. Reassure school personnel that the social worker is always available to help solve problems that may arise. Present the treatment center providers as resources interested in supporting the child's intellectual, social, emotional, and physical development. FOLLOW-UP Subsequent to the treatment center presentation, reinforce the identified goals by maintaining periodic communication with the family and the school. Assess the need to modify any agreements made at the time of the visit. Empower parents to effectively collaborate with the school and avoid being a spokesperson with the potential to interfere in the communication between parents and the school. SUMMARY The most effective school presentations are the result of multidisciplinary collaboration. Social workers, nurses, parents, and others in the hemophilia network are available for consultation. Take advantage of their experience and familiarity with issues specific to the care of the children in group settings. Distribute NHF publications to daycare providers, classroom teachers, and school nurses who have direct contact with the child. To optimize your effort, integrate the parents and children into the planning process. Keep in contact with the principle players after the visit to follow-up on shared goals and to assist with conflict resolution. It may be appropriate to make repeat visits. Remember to include the entire team - the treatment center staff, the family, and school personnel in the planning process. Resources and References: National Hemophilia Foundation. Hemophilia Sports and Exercise. New York, NY, 1996. School Issues Packet. available from HANDI the information service of NHF

National Hemophilia Foundation Orientation Manual for Healthcare Professionals

GUIDE TO PREPARING FOR SCHOOL VISITS Part of comprehensive care routinely offered A. Collaboration 1. HTC/MSW 2. HTC/RN 3. Family a. Parents b. Child or adolescent 4. School Primary contact with whom to arrange visit B. Content 1. Basic hemophilia a. History b. Inheritance c. Levels of severity d. Importance of prompt intervention e. Consequences of delayed treatment 2. Safety a. Contact sports (limitations) b. Climbing structures c. Recommended vs. discouraged activities d. Safety equipment (e.g., helmets) 3. Treatment and First aid a. Prophylaxis (if appropriate) b. Types of injuries (from minor to life-threatening) c. Routine interventions i. When to call parents ii. How to reach parents iii. When to call the HTC iv. How to access specific providers v. When to call 911 vi. Universal precautions 4. Child's developmental stage a. Importance of normalizing experiences b. Reintegration following absence c. Encouraging responsible self-care

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5. Confidentiality a. Consent of social service agency (for school visit) if child is a ward of the court b. No disclosure of sensitive family information without parents consent C. Site visit participants 1. HTC-MSW and RN 2. Parents 3. Child 4. Classroom teacher 5. School nurse 6. School secretary, if there is no school nurse 7. Others - may include classroom aide, family educator, principal, psychologist D. Role of HTC providers 1. On-going availability as resources 2. Resources for educational publications 3. Assistance with problem-solving and conflict resolution 4. Patient advocacy 5. Empower parents as advocates for the child or children

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HOW TO START A SUPPORT GROUP

National Hemophilia Foundation Orientation Manual for Healthcare Professionals

HOW TO START A SUPPORT GROUP Dana Francis, MSW, UCSF, San Francisco, California Jackie Fineberg, MFCC, formerly of Hemophilia Council of California, Oakland, California

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Some good questions to ask yourself before trying to start a support group are the following familiar ones: WHAT, WHO, WHEN, WHERE, and certainly WHY. And that leaves only one other HOW? WHAT A support group is a time for people with similar issues, experiences and problems to get together and share feelings, provide and receive support, problem solve where it is appropriate, and trade coping strategies. If a person is in need of more intense individual or group psychotherapy, he or she should be referred to those services. Each new member should be screened in advance of coming to the support group to be sure that the person and the group are a good match. WHO This depends on the focus of the group. Is it for men only? Women only? Couples? Teens? Parents? A mixture? The focus needs to be clearly stated. If it is for men, is it for any man with hemophilia, or is the focus on men with hemophilia, hepatitis C, and HIV? Can these two groups be mixed with successful results? This may be a question to put to some of the men who are interested in attending. If the group is for women, what are the parameters? Are they female partners who are Hepatits C positive, mothers of men/boys who are hepatitis C and HIV positive, sisters and/or female family members of men with hemophilia? No matter what the focus of the group or the demographics of the group members, the important issue is that the participants and the group facilitator are in clear agreement about what the focus of the group will be. It is also important to approach these groups with an open mind. HIV negative men with hemophilia can be wonderfully supportive to their HIV positive counterparts. Mothers who have lost a son to AIDS can attend a group that has women with sons who are asymptomatic, and with strong facilitation, all parties can have their needs met. WHEN A time that is reasonable for the largest number of interested participants is preferred. This usually means either an evening or weekend and not during weekday working hours. Prospective members also need to be polled regarding the frequency of the meetings. The group might meet once a month, twice a month, or weekly. (For the group to develop a sense of continuity and trust, meeting monthly is probably a minimum standard.) A consistent meeting time is also helpful for establishing a sense of rhythm. If you meet

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monthly, for instance, you might meet on the third Monday of each month at 7 PM. Or if your meeting is weekly, it might be every Wednesday at 6:30 PM. WHERE The meeting site is important. Feedback we have received from consumers indicates that they prefer a meeting site that is not on the grounds of the Treatment Center or the Foundation Chapter Offices. People seem to enjoy the comfort and familiarity of meeting in the homes of their peers if possible. In some areas, geography seems to prevent this, but there are many examples of people making the long trip for an evening, if they want to make the connection with other people. In some instances when meeting in private homes, the other family members leave the house for the duration of the group so that the group members can have privacy. A quiet private meeting space in the home is essential and needs to be negotiated in advance. Serving food, either in the form of light snacks and non-alcoholic drinks, or sharing a potluck dinner for an hour before beginning the support group portion of the evening, is recommended. Sharing food is always a nice way to bring people together, and it is implicitly a nurturing gesture as well. The food should be kept simple, however, and not become the main focus of the gathering. WHY The nature of living with chronic health conditions and illnesses, whether hemophilia, HIV, hepatitis C or another condition, is that some people feel alone, isolated, and lacking resources and coping skills. A support group offers people the chance to get together and, with time and trust, break down the isolation that has kept them apart and feeling immobilized. Generally, women seem to have an easier time coming to and participating in support groups. This may be because they feel more kinship and trust with other women when it comes to sharing feelings and strategies for coping with emotions. Men seem to be more protective of themselves emotionally and therefore more reticent about trying out a support group. Some men have said that they were not sure what to expect and felt nervous about attending a group, but once they got there and realized that other people were dealing with similar issues, they decided that they could handle it and would probably come again. Another gender-based theme about support groups is that women seem to visit a group earlier on. Some men tend to wait until they get difficult medical news and decide at that point to attend a support group session. This speaks to the importance of persistence and continuity with regards to holding the group meeting on a regular basis. The group has the potential to become a permanent fixture on the local hemophilia community calendar. Just because someone isn't ready to attend this month doesn't mean she/he won't check it out in six months time.

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When planning for a support group, it is important not to focus on the number of group participants attending a meeting. Groups can range in size from two or three people to ten or twelve people. Often a smaller group provides more intimacy and opportunity for discussion and sharing. So don't play the numbers game. And finally HOW 1. Enlist the assistance of a person in the hemophilia community who is interested in getting a support group started

This shifts the genesis of the group to the community from merely another attempt by the social worker to get something going. Work with the community person to build a nucleus of members for the group. This takes time and patience. 2. Interview potential group members privately prior to their attending the group.

The support group format is not the best option for every person in the community. Some people may need more of a one-on-one relationship, at least initially. 3. Publicize and do outreach on a regular basis.

Flyers need to be sent out before each group session, written directions and maps need to be provided to all prospective group members, food needs to be coordinated where necessary, and follow-up phone calls need to be made to determine who will be attending. The peer leader who helped get the group started would be a great person to help with these calls. (Once the group has established itself, the follow-up phone calls may become less necessary.) 4. Establish a structure for the group process.

Even if the structure is loose, it is important to have structure to differentiate the gathering from a social event. For instance, some groups have a short check-in period where each person talks for a few minutes about how they are doing. Some members then may voluntarily talk at length about a particular issue, once all group members have checked in. Develop a structure that works for the group. 5. Develop ground rules for the support group.

These guidelines should be drawn up in conjunction with the group members. They include things like observing and respecting the confidentiality of all group members, listening to people as they speak and not interrupting, respecting other people's ideas and feelings even when you disagree, and not criticizing or trashing another group member for his/her point of view. This does not mean that members cannot challenge one another

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regarding attitudes or behaviors, but it must be done with respect. The facilitator plays an important role in seeing that all group members are heard and respected. SUMMARY The support group can be a powerful model for people with hemophilia, hepatitis C, and/or HIV and their family members to gather and share strategies for coping with the physical and emotional issues that they face. Community involvement in the process is essential to the success of any support group, as is location, frequency, food, structure, and ground rules. Large numbers of participants are not necessary for a successful group. However, the group needs to be publicized regularly in order to accommodate people as they feel the need to see what the group has to offer.

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PLANNING A RETREAT

National Hemophilia Foundation Orientation Manual for Healthcare Professionals

PLANNING A RETREAT Susan Cutter, ACSW, Penn Comprehensive Hemophilia Program, Presbyterian Medical Center, Philadelphia, Pennsylvania Ray Dinoi, ACSW, LSW, New England Hemophilia Center, Umass/Memorial Health Care, Worcester, Massachusetts Reprinted from HemAware (National Hemophilia Foundation, October 1996)

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Retreats in the bleeding disorders community have become an important mechanism for members of this community to meet, learn from, and support one another in a unique way. It has been difficult for consumers and their social network to come together for a number of reasons. Retreats offer participants a valuable opportunity to achieve goals not possible in other formats. This article is an effort to assist those who have not organized retreats to do so, as well as to stimulate further reflection for those who have held retreats. We offer several thoughts based on our experiences with various types of retreats. We have tried to be concrete in order to give the reader examples of the retreat process. Prior to planning a retreat, it is helpful to consider the following: consumer needs, staff and participant selection, retreat goals, content, logistics, funding, and evaluation. CONSUMER NEEDS ASSESSMENT Conducting a consumer-needs assessment can help you ascertain the need for a retreat, and for what type of retreat. Who would attend? Why do they feel a retreat would be beneficial? What issues/topics interest them? Are they interested in participating in the planning process? SELECTION OF PLANNERS, FACILITATORS, AND SPEAKERS The selection of the planning committee is an important part of the retreat process. This group defines the retreat's scope and relevance. Much energy and teamwork is required in the planning stage. One of the first tasks is the division of labor. The coordination of logistics can be a formidable task and requires effective organizational skills. Although it is not necessary for the committee chair to have psychosocial clinical skills, he/she should possess basic knowledge of group dynamics and should establish a good working relationship with the primary facilitator. Content is a key element to a successful retreat. The person overseeing this component should be an experienced psychosocial clinician. If one is not available, consider using a consultant with experience in this area. HTCs, chapters, and members of the NHF Social Work Working Group who have already run retreats can serve as resources.

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The retreat goals should be clarified at the beginning of the planning process (see section on Retreat Goals). If the committee agrees on clinically related goals, i.e., to increase the effectiveness of a couple's communications, then certain clinical considerations are required in order to facilitate this task. If there is more than one facilitator and speaker, a coordinator should be selected. While he/she does not have to lead every meeting, the coordinator will be responsible for overseeing the content of the retreat. If you are a member of a small HTC, consider conducting a regional retreat. Collaboration with other HTCs increases the pool of participants and available resources. Thought should be given to the ratio of staff to participants. If there are a number of patients with increased medical needs, there should be at least one nurse available and access to a physician. Speakers should be chosen for their known expertise, not only in the subject to be presented, but also in their ability to get the material across in a retreat environment. Past participants have expressed the opinion that speakers should be available following their presentations to answer questions and interact with the group informally. If possible, speakers should attend sessions prior to and following their presentations in order to get the feel of the retreat and indicate their interest to the participants. Therefore, we recommend inviting speakers to the entire retreat while keeping in mind that some may be unable to stay all weekend. We emphasize the need for in-depth planning. The planning committee should meet in person several times. If this is not possible, then telephone conference calls are recommended. At least one of the meetings ought to be face to face. SELECTION OF CONSUMERS Consumer involvement in the planning process may encourage buy in from other consumers and can help ensure that the retreat is designed to meet consumer needs. Should the consumers involved in the planning be internal or external participants? There are pros and cons to either option. Selecting consumer planners from an HTC not in your area may enhance diversity and add new insights but may risk program cohesiveness. The role of the consumer in the planning process should be clear at the outset. Consumers who are flexible are better suited than those who may use this opportunity to pursue their own personal agendas. How many consumers will be attending the retreat? How many staff members? We suggest a staff to consumer ratio of 1 to 9. If the retreat is designed for children and adolescents, a smaller ratio may be necessary, and parental consent must be obtained. Other questions to consider include: how will consumers be selected? Is the retreat for children, adolescents, adults, families, couples, sexual partners, siblings, HIV-positive and/or HIV-negative patients? Will the consumers be new retreat participants, ongoing retreat participants, or a combination of the two?

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If the retreat is designed for a homogeneous group such as HIV-infected adult males with hemophilia and hepatitis C, the planning process is much simpler. The agenda is the same for all participants, thus, singular activities can be planned for each content area. The planners may choose to vary this theme for one of the sessions by offering simultaneous workshops that allow participants to focus on areas of particular interest. If the retreat is designed for a heterogeneous group, the planning process is more complex. For example, if a family retreat is planned, simultaneous activities need to be planned for the various age groups, or separate activities may be planned depending on participants' HIV status, relationship to the patient, etc. RETREAT GOALS The organizing question for any retreat is what are the goals? Making goals measurable fosters accurate program evaluation. If one of the primary goals is to improve a couple's communications, the first task is to look at the way the goal is stated. The verb improve may not be easily measured. One way to improve upon the expressed goal is to add the word effectiveness." Improved effectiveness helps us think more precisely. Consider the word communications. This is a catch-all term without specificity. What are you going to communicate? A modification might be to communicate thoughts and feelings regarding HIV. Therefore, the revised goal might be to improve each partner's effectiveness in expressing thoughts and feelings about HIV. In addition, clarity of agenda is important. If you are interested in teaching communication skills and this was not indicated in the needs-assessment, you are faced with a decision. Do you add this to the agenda? It might be a welcomed addition that no one considered during the assessment process. Consult with your consumer representative to the planning committee (if you have one) or call several potential participants to get their opinions. If no one is interested, table it for another time. CONTENT Just as the goals are established in concert with the evaluation process, so too is the content. The content is the vehicle for meeting the goals; it either increases or decreases one's ability to meet those goals. As the retreat offers people a unique opportunity to connect and grow, the schedule should foster time together to interact on both formal and informal levels. Most retreats have a common goal to bring people together and increase their support network. It is toward this end that your program schedule should consider bringing all the people together whenever feasible. An example of this is the use of a community meeting. A community meeting is attended by all participants and staff. This meeting helps set the tone of community. One of the derivatives of a retreat is a deepened knowledge of the other person. This applies to a number of relationships including couple, patient/provider, and partner/provider. We recommend that you conduct community meetings to open and close the retreat. In addition, daily community meetings are helpful for planning recreational/free-time activities. There are sessions that work better with subgroups. However, returning to the

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community meeting to share subgroup learning as well as ongoing housekeeping issues facilitates a sense of continuity and cohesiveness to the total weekend experience. Further specific questions to address are length of each session, didactic versus interactive or a mix of both formats, types of teaching aids, and activities. Free time is not always down time. Participants learn from one another and give support by recreating with one another. Staff participation can be negotiated. Much amusement can come out of these shared, informal experiences. It can be a time when official boundaries are relaxed and people can add to an overall supportive relationship. Another guiding principle will be the monitoring of the group's readiness to handle material. Internal subject matter should follow previous activities during which the community members have gained a degree of comfort and trust. This is one of the events in which facilitator skills are critical. If one of your goals is to help people discuss sensitive issues, and they have agreed to it both in the assessment phase and in the contracting phase, then experience is required in helping people appropriately express their emotions and in facilitating acceptance of support. LOGISTICS Paying close attention to details can alleviate problems. The individual coordinating the logistics should be familiar with the population and the results of the needs-assessment. He/she ought to coordinate with the lead facilitator. Logistics covers everything from site selection to closing the doors at the end of the retreat. The physical location as well as the emotional environment must be considered in selecting a site. A country setting may promote greater group cohesion as a result of fewer distractions, while an urban site may offer a diversity of activities, easier travel access, and easier access to the physically challenged. FUNDING A variety of public and private funding sources can be pursued. Possible funding sources include local chapters of NHF, pharmaceutical companies, hospital trust funds, grants from private foundations, and grants from organizations or governmental agencies such as the CDC. Although the CDC funding has been generous, the granting and reporting guidelines are very time consuming. You may want to consider asking participants to contribute to the cost, based on a sliding-scale fee. Most HTC retreats have been planned using a combination of funding sources. Funding sources may require a certain amount of accountability and input. These sources may stipulate how, where, and when the money can be used. For instance, federal grant money may disallow certain retreat-related expenses while private funding sources may be an option to cover these expenses. After confirming the amount and type of funding, more specific details can be arranged. Cost considerations include location site, duration

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of the retreat, number of participants, housing, meals, transportation, honoraria, activities, supplies, and other ancillary expenditures. EVALUATION Evaluation is very important as it enables the planners and funding sources to measure the success of the retreat. The results of the evaluations are useful for future program planning and can assist in obtaining future funding. One may want to consider two different types of evaluations. A program evaluation is helpful in evaluating the content, presenters, facilitators, teaching aids, facilities, preferences for interventions, meals, and location. Additionally, the effectiveness of the retreat can be evaluated by participants' completion of pre-, immediate post-, and three-month posttests. The pre- and immediate posttests are administered at the beginning and end of the retreat. One of the facilitators should be assigned the task of explaining the evaluation, emphasizing its importance, and gathering the completed evaluations. This will help ensure 100% participation in the evaluation process. At the three-month interval, participants should receive written and verbal encouragement to complete the posttest. There is likely to be a lower level of compliance with the three-month posttest, and participants may require repeated encouragement to complete the final evaluation. Pre- and posttest evaluations should be designed to measure participants' knowledge, attitudes, and ability to sustain behavioral changes over an extended period of time. The results of the evaluation enable the planners to determine the short and long-term successes of the retreat. Key areas to consider in planning a retreat: Careful selection of the planning committee is an important factor in a successful retreat. Consider including retreat participants) on the committee. Seek participant involvement in setting clearly-defined goals and in developing the agenda at the outset. Choose a site that is conducive to the needs and capabilities of the participants. Establish specific criteria to measure and evaluate the success in meeting the retreat's goals. Keep in mind the overall objectives of the retreat when selecting facilitators, speakers, and participants.

In summary, retreats offer a unique and valuable opportunity for participants to share learning, exchange ideas, and support one another in a relaxed setting. Planning a retreat requires much time and resources. However, with proper planning, it can be a very successful and rewarding experience.

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LETTING GO: THE TRANSITION FROM PEDIATRIC TO ADULT HEALTHCARE IN TWO TREATMENT CENTERS

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LETTING GO: THE TRANSITION FROM PEDIATRIC TO ADULT HEALTHCARE IN TWO TREATMENT CENTERS Jane Shaipro, MSW, ACSW, Comprehensive Center for Bleeding Disorders, Michigan State University, East Lansing, Michigan Danna Merritt, MSW, CSW, Hemostasis and Thrombosis Center, Detroit, Michigan Reprinted from HemAware, July 1998 Block towers, dollhouses, and plastic dinosaurs line the shelves. A toddler plays, kicking loudly at the wall. A three-year-old receives an infusion, his shrieks reverberating. This is the pediatric hemophilia clinic. But in saunters the next patient, Mike, 19 years old, wearing a backpack over his college sweatshirt. He swerves to clear the path for a fiveyear-old and a mother chasing a runaway toy truck. Sound familiar? In region Five-East, the 1997-1998 Hemophilia Treatment Center Directory list 35 active patients aged 20 and over at one pediatric center. Another childrens hospital treats 26 patients 20 and above, and a third pediatrics center mentions 61 20 plus patients. Letting go of adolescents and assisting them in moving on to adult healthcare apparently continue to be difficult issues at many pediatric centers today. Despite everyones best interest and professionalism, treatment teams do sometimes get ensnarled by their emotional attachments to certain patients, says Dana Francis, MSW.1 Robert Blum reports that the majority of health professionals, however, are either unsure of the issues or are only peripherally involved. Systemic inertia, fueled by insufficient information about transition options and outcomes, helps maintain an outdated status quo.2 During research for this paper other possible incentives to resist adolescent transition to adult care have been mentioned. One is the lack of a working relationship between pediatric and adult centers, and the second is the financial remuneration that each patient generates. Future discussion in these areas appears warranted. Two hemophilia treatment centers in Michigan are currently examining their systems and policies regarding transition to adult healthcare. What works? What is lacking? Michigan State University, which has combined services and staff for both pediatrics and adult treatment, uses an informal plan of transition. Are there patients or issues that are overlooked when the structure of the system is missing? Children's Hospital in Detroit has been reviewing and refining its transition process since 1991. When ready for adult care, their patients, aided by a formal plan begun in childhood that promotes independence, make the transition to a new treatment center. In the long term of life management, systemic intervention may prove to be a good option. A LIFE-SPAN TREATMENT CENTER Life-span treatment centers, such as the one at Michigan State University in East Lansing, have paid little attention to transition to adult care. The progression from

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complete pediatric dependence to adult independence, at centers with combined pediatrics and adult treatment teams, flows as easily and effortlessly as the growth and development of each individual patient.

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The only transitional change is to new physicians, but both pediatricians and adult hematologists work closely with the treatment center staff. In this system, the pediatrician is left behind as patients mature into responsible adults and take charge of their own care without parental assistance. Roshni Kulkarni, MD, a pediatrician at MSU, said at a recent regional meeting, It can be difficult to accept that the patients don't need us after a certain age, but they do just fine. According to Blum et al, The optimal goal of transition is to provide health care that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive.2 At MSU this appears to happen magically in the structure provided. At times adolescent patients speak up and request a move on to adult healthcare. But are there issues of independence left behind when patients are offered no formal supportive plan? BILL, A PATIENT AT A LIFE-SPAN CENTER Bill C. is a patient at MSU, now aged 21, whose swim upstream to independence includes the transition to adult healthcare. He struggles with severe hemophilia and HIV and has dealt with the deaths of an uncle and an older brother. Thus was the tension in Bills home in his adolescence, the pull between daily living and the concerns of continual healthcare. When Bill was 17, his father accompanied him to a comprehensive pediatric clinic. On this day both were verbal and expressive. Mr. C. asked Bill to take care of his health and do everything possible to prevent the onset of AIDS. He explained that Bill's health problems remind him of his deceased older son. Bill asked his dad to back off and not be so protective. One year later, after Bill had been briefly hospitalized and had entered a research study, he attended adult clinic for the first time. Bill, now a junior in high school, came to clinic alone and was the center of all the interviews. Although Mr. C. continued his vigilance over Bill's condition and care, Bill was moving on. At the end of the year, after his high school graduation, Bill made the last surge into independence and moved into an apartment to begin supporting himself through employment. His one remaining dependence was the refusal to self-infuse, and even today he is firm that he has no plans to change this. Bill at age 21 is currently asymptomatic, stable, with a CD4 count above 200. Would his trip through adolescence have been different if he received hemophilia treatment in an area with two separate hemophilia treatment centers? Would Bill's growth into adult

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healthcare have differed if he had been a patient at a pediatrics center with a formal, structured plan?

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PEDIATRICS WITH A TRANSITION PLAN At Children's Hospital of Michigan in Detroit, changes in 1991 within the Detroit Medical System and multiple profound realizations of the staff were the sparks that ignited the creation of a transition plan. The structure of the hospital system now included adult hematologists who practiced in hospitals physically separate from Childrens. But the growing awareness of staff was the turning point. Staff began to notice that adult hematological and psychosocial issues were quite different from corresponding ones for children. Adult patients now requested hospitalization in adult hospital rooms with adult patients. Some expressed discomfort sitting in the waiting room with small children. In addition, as awareness grew, staff were startled to learn that they might be contributing to patient and family dependency needs. Nurses, physicians, and the social worker began to reveal, informally, ways in which the system might be helping patients postpone departure from pediatric care. Thus perhaps they were also contributing to delaying individual patient's transition to independence. Staff became aware at this time that as patients and their parents resisted transition to adult healthcare, the families often voiced a preference to remain in pediatrics where they always received wonderful care and services. Such kind words had the power to warm hearts and often to slow the separation process to a halt. These moments also clarified the value of the protective environment in the pediatric setting, which contrasted with the imagined vast, impersonalized adult treatment centers. Was it healthy in the long run for staff and patients/family to sever the well established, trusting relationships that had developed in pediatric care? All staff agreed, without question, that great comfort and security existed in familiarity, nurturance, and protection. No one argued the well-known fact that change is difficult. PATIENT ADVISORY MEETING The next step in the development of a transition process was a meeting to bring together patients, parents, nurses, physicians, and the social worker to examine all the transition issues, including resistance to change. The result of this discussion was the formation of a transition process. All present were comfortable with its creation but hesitant to implement it immediately. As it happened, the actual implementation of the plan would not become reality for almost five more years. AN EARLY AND GRADUAL PLAN FOR BILL If Bill C. were a pediatric patient today at Childrens Hospital of Michigan, he would begin to learn self-empowerment early in individual meetings with clinic staff. If he chose, at age 12 to 14, he could discuss his hemophilia or other important issues while alone with staff members. He could even learn to infuse himself while his parents waited elsewhere.

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At age 15 Bill would meet in individual sessions with staff for 20 to 30 minutes to talk about his responsibilities including self-infusion and log sheets. Other health and prevention issues such as sex/STDs and drugs/alcohol could be discussed as needed at this time, and his parents would join him for a family conference with staff at the end of the visit. When Bill reached the age of 16 to 17, he would be alone with staff for most of his clinic visit. His parents would attend the meetings only as needed. He would now be capable of giving his own history while talking directly to clinic staff. He would feel confident of his ability to self-infuse, to record his bleeds, and to call in his factor orders. Bill C. would be a full and participating member of his own treatment team. LETTING GO According to Blum et al, "The greatest gift may be a 'letting go' process in an environment that is supportive and in a process that is planned and thoughtful."2 In both the Michigan State University lifespan clinic and the Detroit Children's Hospital's separate pediatrics/ adult center, plans for the future will include the full cooperation and assistance of treatment center staff in facilitating the growth and development of all pediatric patients to independence in their personal lives and healthcare. ADOLESCENT TRANSITION SCHEDULE
This proposed adolescent transition schedule was prepared at the Regional Diagnostic Hemophilia Treatment Center at Children's Hospital of Michigan through collaborative efforts of parents, adolescent patients, nursing staff, the social worker, and physicians in 1994-1995. Age 12-14 Patient/parent seen together, but staff will also see patient alone far 10-15 minute intervals. Patient issues: 1.Adjustment to being a person with bleeding disorder. 2.Determine patient's level of acceptance re: bleeding disorder. 3.Determine level of knowledge re: bleeding disorder: a. Begin self-infusion Age 15 Patient/parent together w/staff. Parent issues: Patient independence Discipline Prevention Preparation for transfer Patient issues: Alone w/staff for 20-30 minutes. 1.Continued medical education 2.Adjustment to being person w/bleeding disorder. 3.Prevention as age Age 16-17 Patient alone w/staff for most of contact.. Patient Confidentiality key. Parent in only as needed with family conference at the end of contact. 1.Patienf capable of giving own history. 2.Patient/ physician talking directly. 3.Patient totally self-infuses. a.Do own logs b.Home treats c.Self-knowledgeable in LD. of Age 18 Patient medically independent. Communicates with staff himself. Issues of focus: 1.Health insurance 2.Education/career options and planning 3.Medical tcare 4.Moving and accessing adult system. a. Prepare for transfer. 5.Problem solving. 6.Prevention a. Build on/update Age 19-21 Expedite transfer to adult treatment system if it has not already occurred.

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training if indicated b. Prevention as age appropriate: Sexuality Sex/STD's Drugs/Alcohol Hepatitis Joint disease appropriate: Sex/STD's Drugs/Alcohol Hepatitis Joint disease Hygiene Health/diet 4.Home infusion training. Pt. do own logs Pt. do own pokes Pt do own dose 5.Communication bleeds 4. Prevention: a.Sex/STD's b.Drugs/alcohol cHepatitis d.Joint disease e.Hygiene f.Health Nutrition 5.Issues of career planning 6.Prep for transition. all previous learning. b. Educate re:any areas needing attention. 7.Parents consulted on "as needed" basis. 8.Family meeting as requested/need 9.Plan transition.

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References 1 Francis D. Bridging the Gaps: Adolescents with Clotting Disorders Transitioning to Adult Care. Nursing Network/Psychosocial News. Summer 1995; 1 B-19. 2 Blum RW et al. Transition from Child-Centered to Adult Health-Care Systems for Adolescents with Chronic Conditions. Journal ofAdolescent Health 1993; 14: 570576.