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| About site: Teen Health - Youth In Transition |
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| About site: http://www3.bc.sympatico.ca/steeksma/Medical/transition.htm |
Title: Teen Health - Youth In Transition Youth with chronic health disorders and their caregivers can find information and resources to assist in their transition to independence and self-management.
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Patients In Transition
YOUTH IN
TRANSITION (Transcribed with Permission from Mary
Paone, Nurse Clinician with Youth transition services at British
Columbia's Children's Hospital.)
Patients with chronic health conditions of any kind experience the same
transitions in life as anyone else. The difference is that there are
additional needs and concerns that should be addressed and met by all the
concerned caregivers including the family support system. Unfortunately
this does not always happen as smoothly as one might hope.
The following
article, written and compiled for Contemporary Pediatrics by
consultants Sandy Whitehouse, and Mary C.
Paone, outlines the needs and the possible solutions. In addition,
they provide a Transition
Checklist, which is divided into Early
Stage Transition, Middle
Stage Transition and Late
Stage Transition, which may assist in following the progression of the youth
and ensuring needs are met at every stage.
On Trac - Youth Transition Services at British Columbia's Children's Hospital
also provides a planner called "Your
Plan-It", an excellent resource to assist youth in transition.
Other health resources in Canada are: The Canadian Health Network
Canadian Organization for Rare Diseases
(CORD)
Health Resources Specific to Youth in Transition:
Transition
Revolution: You can make it happen in Health Care (Transition 99). Health
Care Transitions
Extract from: “Contemporary Pediatrics, A Canadian Journal Dedicated
to the Care of Children” Dec. 1998 Pg. 13,15-16
Pediatric resource
"Patients in Transition: Bridging the
health care gap from youth to hood"
A generation ago, few children with severe
chronic illnesses and disabilities survived to hood. Today's
technological and medical advances have increased the life span of these youth
with more than 90% now reaching the age of 20. As a result, the
focus of health care is undergoing a shift from disease treatment to health
promotion and secondary disease prevention. A new emphasis in health care
for youth is on developing their abilities necessary to actively participate in
their own care. Transition planning is a feasible way to accomplish this
goal by providing developmentally appropriate care and health promotion
throughout adolescence to help prepare the individual for the health care
system.
Transition By Definition Youth with chronic health conditions face
two simultaneous transitions: a developmental transition (from childhood to
adolescence to hood) and a situational transition (from pediatric to health
care). They may also have a third transition, from relative health to illness,
depending on the progression of their illness.
The goal of transition is to provide health care that is uninterrupted,
coordinated, developmentally appropriate and psychologically sound prior to and
throughout transfer into the system. Success is determined by the
continuity and use of appropriate health care services and by maintaining the
patients health. Transition planning and preparation involves providing
youth with the knowledge and skills they will need to achieve these ends.
Developmentally Appropriate Care All youth, whatever their
physical, cognitive and/or social circumstances. are confronted with similar
developmental tasks in reaching hood:
1) the development of self-esteem and a healthy identity
2) emancipation from parental control to autonomous behaviours and some level
of independence
3) formation of a ual identity
4) establishing meaningful social and peer relationships, and
5) seeking suitable education or employment.
While all youth have similar issues, and individual's opportunity and ability
to meet their own needs may be significantly altered by health conditions and
their relationship with their families and health care providers.
Adolescents with chronic health conditions identify a multitude of health
concerns, including: discrimination; limitations on future activities; a sense
of dis-empowerment; school and learning problems, and mental health
issues. They must also deal with the usual issues of youth, such as drug,
alcohol, and substance abuse, uality, and dissatisfaction with their
appearance.
How youth with chronic health conditions fare is determined, in part, by
their ability to achieve their developmental milestones while minimizing general
health problems. There is an increasing need to provide health care that
integrates health promotion strategies that not only promote longevity but
enhance quality of life.
Challenge to providing developmentally appropriate care Many
parents who have been the primary caregivers of youth with chronic health
conditions have difficulty in encouraging independence and relinquishing some of
the decision-making to their adolescent. There may be doubts about the
adolescent's ability to achieve partial or total independence, and both the
youth and the families may require assistance in learning to distinguish which
situations the youth can handle him/herself.
The role of the pediatrician In many situations, all of the
medical, social and educational services that support the youth and the family
change with the transition to hood. The pediatrician who is familiar
with the family situation and the treatment implications of the specific health
condition is a vital link in ensuring the patient's needs are met with
continuity and coordination of services. Assisting the youth in choosing a
family physician or primary care physician or primary care physician in his/her
own community is an important step in this transition.
In providing care that promotes autonomy and self-advocacy, the first step is
to relate to the youth as an individual- encouraging the patient to ask
questions an acknowledging their capacity for making choices on their own.
focusing conversations on the youth will encourage active involvement in his/her
own care.
Since learning occurs largely by emulating someone who is admired, the most
significant impetus for maintaining health will come from family members with
whom the adolescent spends the majority of his/her time. The pediatrician
can therefore help by promoting positive health behaviors in the parents as well
as the youth.
Transition planning involves helping youth and their families recognize that
they have some control over and responsibility for their health care
relationships. Often a small gesture, such as handing the youth the
prescription or discussing the next appointment with him/her, promotes
independence and gradually shifts health care responsibility to the
patient., Similarly, asking for questions and concerns during regular
visits or meeting with the youth alone will encourage independence and
self-reliance.
A survey of physically disabled adolescents 1 to 14 years of years found that
57% were unable to describe their disability; of the 50% who were taking
medications, none could explain why. Adolescents who have been 'cared for'
since birth may feel that the condition and its care are the responsibility of
others. This can make it difficult for them to learn to take ownership of the
situation. Formal re-education regarding their condition helps them
advocate for themselves and seek health care when needed.
The heath care system expects young s to function autonomously and
promotes independent health care decisions. The pediatrician should
provide the youth with information about services, settings, and
patient role expectations and give him/her the opportunity to practise
behaviours related to decision-making, acquiring information and giving
consent. The pediatrician can also prepare the family for the
system- a mainly problem-oriented, procedural and client-centered system that
often fails to encompass the families needs or concerns. Unless prepared,
many familiar may feel excluded and abandoned. It helps if the
pediatrician meets with service providers in the community who have
experience working with young s, to discuss efficient protocols for
transfer of care (e.g. forwarding records, anticipated routine follow-up care,
and mechanisms to ensure continuous care). The youth would also benefit
from a visit with the care provider prior to discharge from pediatric care
to learn about the new physician's approach to management and ensure the
transfer is suitable to both parties.
Strategies for effective transition planning A transition
framework can be conceptualized that follows normal adolescent development with
early, middle and late transitional stages (see
checklist on page 16). Placed within the adolescent's time frame, the
process should begin around 10 years of age (grade five or entry into
puberty) and proceed until the age of 18 (graduation from high school or
transfer from pediatric care). Transition planning should proceed at the
youth's pace according to their physical and cognitive abilities, psychological
and emotional stability, family and social supports, and general health
stability.
Within this framework, specific developmentally appropriate strategies can be
placed in six main content areas: self-advocacy and self-esteem, independent
health care behaviours, ual identity and health, psychosocial
supports, educational and vocation planning, and health and
life-style behaviours.
Conclusion The transition from pediatric to care requires
that youth, family and health care providers work collaboratively to ensure the
best possible health outcome. The pediatrician who has been involved with
the family since early childhood plays an important role in providing
information and direction to youth and families on issues affecting health care
choices and life-style. Transition planning can help reduce secondary
disability and teach life-long skills fore accessing and making optimal use of
available health care resources.
REFERENCES Available on Request.
Consultants: Sandy Whitehouse, MD,
FRCPC is Clinical Associate Professor of Pediatrics at British
Columbia's Children's Hospital. Mary C.
Paone MSN is Nurse Clinician with Youth transition services at British
Columbia's Children's Hospital.
TRANSITION PLANNING CHECKLIST
EARLY STAGE
TRANSITION (10-12 years/Grade
5-7)The youth and family are introduced to the transition
process and the youth begins to participate in his/her own care. Skills
are supported and practised at home with the family.
Self-advocacy p Educate the youth in describing the chronic health
condition. Review with family p Encourage the
youth to ask questions during each office visit
Independent Health care behaviours
p Discuss the medications and treatments youth
needs daily, including problems or barriers to compliance. p Discuss purpose of Medical Alert ID bracelet; how to
seek help from others
ual Health p Discuss puberty changes, differences from peers and
impact on health condition. p Discuss where
youth and parents can obtain information about uality
Psycho-social support p Provide parents with the opportunity to discuss their
feelings about loss of control, concerns about the future and increasing the
adolescents independence. p Talk to youth about
social activities, peer involvement and supportive relationships.
Educational and vocational planning
p Talk about youth's responsibilities at home
(e.g. chores) p Discuss restrictions (real or
imagined) on youth's educational or recreational activities.
Health and lifestyle p Question youth about smoking, use of alcohol and street
drugs. p Discuss impact of above behaviours on
health condition and general well-being
MIDDLE STAGE
TRANSITION (13-15 years/Grade
8-10)The youth and family gain understanding of the
transition process and the expectations of the system. The youth
practises skills, gathers information and sets goals for participating in
his/her care.
Self-advocacy p Discuss strategies to access information about condition
and treatments (e.g. support groups, Internet, library, condition-specific
health associations)
Independent Health care behaviours
p Youth makes next appointment, talks with
receptionist and discusses transportation.. p
Encourage youth to learn about medication; practise having a prescription
refilled p Have youth discuss when, how and from
whom to seek emergency/medical help.
ual Health p Youth brings questions to clarify impact on condition
and/or medications p Provide/encourage
opportunity to meet with youth and parents alone to discuss concerns/questions.
Psycho-social support p Prompt the youth and parent to express positive goals
for self and health. p Encourage the youth to
join a club at school, a community or peer support group or to attend camp.
Educational and vocational planning
p Focus discussion on school, favourite
subjects, plans for high school, ideas for careers. p Have youth visit school counselors to talk about career
prep courses or volunteering
Health and lifestyle p Discuss plans for driving; identify any restrictions.
p Discuss issues of body image, concerns re:
dieting, exercise weight gain or loss.
LATE STAGE
TRANSITION (16-18 years/Grades
11-12)The youth and family prepare to leave the pediatric
system with confidence; the youth uses independent behaviours (as able) to move
into the system
Self-advocacy p Discuss choices for care
(specialists/hospitals/community services). p
Assist in choosing care providers (family physicians/specialists)
Independent Health care behaviours
p Youth maintains personal health record book to
keep track of medical/dental appointments, health information and history,
medications and treatments, health care providers (including names and telephone
numbers). p Youth meets with
specialist/family physician before discontinuing pediatric care
ual Health p Discuss with the youth genetic risks, ual
capabilities, fertility, ual vulnerability.
Psycho-social support p Identify needs for personal assistance in care, issues
of living away from family.
Educational and vocational planning
p Discuss employment options and plans for
health care benefits. p If choosing college,
discuss medical coverage, transportation, living arrangements, impact on health
condition.
Health and lifestyle p Provide opportunities for youth to discuss feelings of
depression or suicidal thoughts. p Have youth
identify person(s) he/she can contact for help or advice.
Contact
Information
The Transition Service at
British Columbia's Children's Hospital has developed a clinical pathway, youth
health day timer and staff resource materials for distribution. For
more information, go to www.youthhealth.ca,
which has all the youth health tool and programs, call (604) 875-3472 or e-mail
Dr. Roey Malleson - the Director of the
Youth Health Program at C&W about transition issues
"Your Plan-it"
-a health care planner especially designed for youth with a chronic health
conditions to help them
learn and participate in their health care
plan for transition to hood and the health care system.
Individual copies are available from:
The Family Resource Library Third Floor, room 3D24 BC
Children's Hospital Vancouver, BC Canada
Volume Copies (over 5) are available from:
On-Trac A Transition Service for Youth,
Families and Health Care Providers Children's & Womens Health Centre of
British Columbia 4500 Oak St., Room B426 Vancouver, BC V6H 3N1
Tel: (604) 875-3472 Fax: (604) 875-2388 Email:
Dr. Roey Malleson
( the Director of the Youth Health
Program)
Cost: $20.00 each (including GST) plus $5.00/copy
shipping/postage/handling
For more information about Transition Planning or the On-Trac Transition
Service, contact: Dr. Roey Malleson - the Director of the
Youth Health Program (604) 875-3472, Email: rmalleson@cw.bc.ca
This page was transcribed by Colin Steeksma as a service to
children/youth with chronic disorders in transition, and children with X-Linked
Hypophosphatemia (XLH). For information on XLH and other Vitamin D
disorders please visit the website.
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Youth | with | chronic | health | disorders | and | their | caregivers | can | find | information | and | resources | to | assist | in | their | transition | to | independence | and | self-management. |
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http://www3.bc.sympatico.ca/steeksma/Medical/transition.htm
Youth In Transition 2008 August
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Youth with chronic health disorders and their caregivers can find information and resources to assist in their transition to independence and self-management.
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