Hemophilia Assn

7/31/2019 Hemophilia Assn

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National Hemophilia Foundation

Orientation Manual for Healthcare Professionals

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PROGRAM DEVELOPMENT


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THE SOCIAL WORKER'S ROLE IN SCHOOL VISITS


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THE SOCIAL WORKER'S ROLE IN SCHOOL VISITS

Bobbie Steinhart, LCSW, Children's Hospital Oakland, Oakland,

CaliforniaUpdated in 2001 by Susan Kocik, MSW, CSW

INTRODUCTIONClinical 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 ofthe 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 programoutside 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 ofhemophilia results in considerable clinic contact during the preschool years. Routinely

offering school visits normalizes this preventive intervention for parents who mightotherwise 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, orkindergarten, the relationship between the family and the social worker is well

established. Thus, parents are often receptive to a school visit with hemophilia treatmentcenter 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 socialworker coordinates the visit. Collaboration among HTC personnel reinforces team

relationships and increases the likelihood of an effective presentation. Consider dividingthe 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 visitis 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, andany 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 thesocial worker assesses the child or adolescent is inappropriately excluded, discuss withthe 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 isdevelopmentally 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.

There are times when a family may request a school visit. The presenting problems mayinclude 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 historyand the recovery process, including the use of crutches, or the inexplicably quick

recovery from a bleed. Whoever requests the visit and regardless of the presentingproblem, 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 theschool, 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, whichincludes a review of the child or adolescent's bleeding disorder and individualmanagement. Inform them the HTC nurse may talk about the improved safety of

treatment options, and the protective value of prophylaxis. Take advantage ofopportunities to explain universal precautions. Because the school staff is often

predominantly female, it may also be appropriate to include information about bleedingdisorders 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 schoolunderstands 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 replacementproducts 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 tofacilitate 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 thechild's and adolescent's developmental stage, and reinforces the importance of

normalizing his/her experiences. The social worker contributes essential psychosocialinformation, 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 withhemophilia to facilitate the talk. Reassure school personnel that the social worker is

always available to help solve problems that may arise. Present the treatment centerproviders as resources interested in supporting the child's intellectual, social, emotional,

and physical development.

FOLLOW-UPSubsequent to the treatment center presentation, reinforce the identified goals by

maintaining periodic communication with the family and the school. Assess the need tomodify 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 interferein the communication between parents and the school.

SUMMARYThe 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 tothe 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 andto 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


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GUIDE TO PREPARING FOR SCHOOL VISITS

Part of comprehensive care routinely offered

A. Collaboration1. HTC/MSW2. HTC/RN

3. Familya. Parents

b. Child or adolescent4. School Primary contact with whom to arrange visit

B. Content1. Basic hemophilia

a. History

b. Inheritancec. Levels of severity

d. Importance of prompt interventione. Consequences of delayed treatment

2. Safety

a. Contact sports (limitations)b. Climbing structures

c. Recommended vs. discouraged activitiesd. 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 parentsiii. When to call the HTC

iv. How to access specific providersv. When to call 911

vi. Universal precautions

4. Child's developmental stagea. Importance of normalizing experiences

b. Reintegration following absencec. 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 thecourt

b. No disclosure of sensitive family information without parents consent

C. Site visit participants1. HTC-MSW and RN

2. Parents3. Child

4. Classroom teacher5. School nurse

6. School secretary, if there is no school nurse7. Others - may include classroom aide, family educator, principal, psychologist

D. Role of HTC providers1. On-going availability as resources2. Resources for educational publications

3. Assistance with problem-solving and conflict resolution4. Patient advocacy

5. Empower parents as advocates for the child or children


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HOW TO START A SUPPORT GROUP


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HOW TO START A SUPPORT GROUP

Dana Francis, MSW, UCSF, San Francisco, California

Jackie Fineberg, MFCC,formerly of Hemophilia Council of California, Oakland,California

Some good questions to ask yourself before trying to start a support group are thefollowing familiar ones: WHAT, WHO, WHEN, WHERE, and certainly WHY. And that

leaves only one other HOW?

WHATA 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 isappropriate, 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 membershould be screened in advance of coming to the support group to be sure that the person

and the group are a good match.

WHOThis 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 forany 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 tosome of the men who are interested in attending.

If the group is for women, what are the parameters? Are they female partners who areHepatits 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 thegroup 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 thegroup 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 positivecounterparts. 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 theirneeds 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. Thegroup 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.) Aconsistent 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.

WHEREThe 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 theFoundation 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 privatehomes, 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 essentialand needs to be negotiated in advance.

Serving food, either in the form of light snacks and non-alcoholic drinks, or sharing apotluck dinner for an hour before beginning the support group portion of the evening, isrecommended. 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 notbecome 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 gettogether 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 supportgroups. 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 moreprotective 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 feltnervous 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 wouldprobably come again.

Another gender-based theme about support groups is that women seem to visit a groupearlier on. Some men tend to wait until they get difficult medical news and decide at thatpoint 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 hasthe 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'tcheck 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 tenor twelve people. Often a smaller group provides more intimacy and opportunity for

discussion and sharing. So don'tplay the numbers game.

And finally HOW

1. Enlist the assistance of a person in the hemophilia community who is interested ingetting 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 anucleus 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 tobe 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 beattending. 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 callsmay 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 periodwhere 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 havechecked 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 memberfor 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.

SUMMARYThe 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 thephysical 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 asthey feel the need to see what the group has to offer.


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PLANNING A RETREAT


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PLANNING A RETREAT

Susan Cutter, ACSW,Penn Comprehensive Hemophilia Program, Presbyterian

Medical Center, Philadelphia, PennsylvaniaRay Dinoi, ACSW, LSW,New England Hemophilia Center, Umass/Memorial Health

Care, Worcester, MassachusettsReprinted from HemAware (National Hemophilia Foundation, October 1996)

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 uniqueway. 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 notpossible in other formats.

This article is an effort to assist those who have not organized retreats to do so, as well asto stimulate further reflection for those who have held retreats. We offer several thoughtsbased 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, staffand 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 theplanning process?

SELECTION OF PLANNERS, FACILITATORS, AND SPEAKERS

The selection of the planning committee is an important part of the retreat process. Thisgroup 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 aformidable 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 theprimary facilitator.

Content is a key element to a successful retreat. The person overseeing this componentshould 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 SocialWork 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 theeffectiveness 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, acoordinator 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 andaccess 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 theirpresentations 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, werecommend 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 inperson 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 CONSUMERSConsumer 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 yourarea 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. Consumerswho 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 andadolescents, 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-positiveand/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 samefor 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 simultaneousworkshops 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 measurablefosters 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 theword effectiveness." Improved effectiveness helps us think more precisely. Consider theword communications. This is a catch-all term without specificity. What are you going to

communicate? A modification might be to communicate thoughts and feelings regardingHIV. 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 teachingcommunication 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 noone considered during the assessment process. Consult with your consumer

representative to the planning committee (if you have one) or call several potentialparticipants 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 thecontent. 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 toconnect 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 increasetheir 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 attendedby 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 anumber of relationships including couple, patient/provider, and partner/provider. We

recommend that you conduct community meetings to open and close the retreat. Inaddition, 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 versusinteractive 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 recreatingwith 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 arerelaxed 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 thecommunity 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 thecontracting phase, then experience is required in helping people appropriately expresstheir emotions and in facilitating acceptance of support.

LOGISTICS

Paying close attention to details can alleviate problems. The individual coordinating thelogistics 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 siteselection 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 offewer distractions, while an urban site may offer a diversity of activities, easier travel

access, and easier access to the physically challenged.

FUNDINGA variety of public and private funding sources can be pursued. Possible funding sources

include local chapters of NHF, pharmaceutical companies, hospital trust funds, grantsfrom private foundations, and grants from organizations or governmental agencies such

as the CDC. Although the CDC funding has been generous, the granting and reportingguidelines 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 grantmoney 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.

EVALUATIONEvaluation 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 programplanning 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' completionof 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 gatheringthe completed evaluations.

This will help ensure 100% participation in the evaluation process. At the three-monthinterval, 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-termsuccesses of the retreat.

Key areas to consider in planning a retreat:

Careful selection of the planning committee is an important factor in asuccessful retreat. Consider including retreat participants) on the committee.

Seek participant involvement in setting clearly-defined goals and indeveloping the agenda at the outset.

Choose a site that is conducive to the needs and capabilities of theparticipants.

Establish specific criteria to measure and evaluate the success in meeting theretreat'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 sharelearning, exchange ideas, and support one another in a relaxed setting. Planning a retreatrequires much time and resources. However, with proper planning, it can be a verysuccessful 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, MichiganDanna 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, kickingloudly 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 five-

year-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 andover 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 issuesat many pediatric centers today. Despite everyones best interest and professionalism,

treatment teams do sometimes get ensnarled by their emotional attachments to certainpatients, says Dana Francis, MSW.

1Robert 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 toadult 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 patientgenerates. 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? MichiganState 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 areoverlooked when the structure of the system is missing?

Children's Hospital in Detroit has been reviewing and refining its transition process since1991. When ready for adult care, their patients, aided by a formal plan begun inchildhood 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 CENTERLife-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 anddevelopment of each individual patient.

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 pediatricianis 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 recentregional 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 isuninterrupted, 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 arethere issues of independence left behind when patients are offered no formal supportiveplan?

BILL, A PATIENT AT A LIFE-SPAN CENTER

Bill C. is a patient at MSU, now aged 21, whose swim upstream to independenceincludes 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 andthe 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 clinicalone 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 throughemployment. His one remaining dependence was the refusal to self-infuse, and eventoday 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 anarea with two separate hemophilia treatment centers? Would Bill's growth into adult


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At age 15 Bill would meet in individual sessions with staff for 20 to 30 minutes to talkabout 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 atthis 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 clinicvisit. 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 hisability 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 anenvironment that is supportive and in a process that is planned and thoughtful."

2In 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 andassistance 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 Age 15 Age 16-17 Age 18 Age 19-21

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.Determinepatient's level of

acceptance re:

bleeding disorder.

3.Determine level of

knowledge re:

bleeding disorder:

a. Begin

self-infusion

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

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-knowledge-

able in LD. of

Patient medically

independent.

Communicates with

staff himself.

Issues of focus:

1.Health insurance

2.Education/career

options

and planning

3.Medical tcare4.Moving and

accessing adult

system.

a. Prepare for

transfer.

5.Problem solving.

6.Prevention

a. Build on/update

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 owndose

5.Communication

bleeds

4. Prevention:

a.Sex/STD's

b.Drugs/alcohol

cHepatitis

d.Joint disease

e.Hygiene

f.Health

Nutrition

5.Issues of careerplanning 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/need9.Plan transition.

References

1 Francis D. Bridging the Gaps: Adolescents with Clotting Disorders Transitioning toAdult 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 ofAdolescentHealth 1993; 14: 570-576.

Documents

Hemophilia Assn