1. INVOLVEVEMENT OF YOUTHS
WITH SPINA BIFIDA AND
HYDROCEPHALUS IN LIFELONG
INTERDISCIPLINARY CARE

2. Introduc>on
 Involvement of youth with Spina bifida and
hydrocephalus in lifelong interdisciplinary care
will ensure that:
 Youths have power from within that will enable
them to coordinate well with other people in
society and
 They can come up with new knowledge and ideas
(for their wellbeing) that will be maintained and
passed on from time to time.

4. Peer Programs and Supports
Groups
 Through peer programs, exchange
programs and support groups youths with
SB and HC can:
 Discuss and get solutions to their
challenges
 Such programs can enable young adults to
identify their role models, counselors and
mentors who can guide them.

5. Decision Making
 For a long life interdisciplinary care youth should be
involved in decision making on matters that concern
them.
 This can take up bottom up approach where ideas are
drawn from the youths and channeled up to the main
stakeholders who are involved in their care

6. Self Advocacy
 Youths can be trained on self advocacy
tactics: through talking about their
condition in different context e.g social and
academic.
 This will enable them to advocate and lobby
for their rights
 Furthermore, the public will have enough
knowledge which will be for the wellbeing
of individuals with SB and HC

7. Rela>onships
 Adolescents and young adult with SB
and HC should be trained on the type
of relationship that will promote
healthy development during transition
into adulthood. For example; school
related, disability related, work related,
personal e.t.c

8. Self care
 For a sustainable interdisciplinary care
young adults can be taught on self care
for instance: bladder and bowel
management, grooming, keeping fit
through suitable exercises among
many other activities.

9. Sexuality
 Youths with SB and HC should get factual
information about their sexuality and
reproductive issues. This includes:
 Puberty: if precocious (early than usual)
 Sexual functioning including fertility
 And psychosexual development: social
interaction and self esteem

10. Conclusion
 For the above factors to be achieved all
stakeholders involved in matters that
concern spina bifida and
hydrocephalus should approach the
cases in real and positive attitude since
transition from childhood to
adulthood is crucial to every
individual’s development and growth.

11. References
 Liptak G, (2003) Evidence Based Practice in Spina
bifida; Developing a research agenda. Washington DC.
 Minnesota Department of Health, (2008)
Interdisciplinary Transition Conference. Minnesota
 Presentation by: Rebecca Opetsi