A Reading on

SPINA BIFIDA

A Journal Reading Presented to the Faculty of San Pedro College

In Partial Fulfillment of the Requirements in NCM 209 - RLE

PEDIATRIC WARD NURSING ROTATION

Submitted to:

Charmaine A. Orocio, RN

Clinical Instructor

Submitted by:

Immanuel John G. Jurilla, St. N

BSN 2L – GROUP 2

April 15, 2023

Title: Self-management and independence guidelines for the care of people with spina
bifida

Bibliography:
Logan, L. R., Sawin, K. J., Bellin, M. H., Brei, T., & Woodward, J. (2020). Self-
management and independence guidelines for the care of people with spina
bifida. Journal of Pediatric Rehabilitation Medicine, 13(4), 583–600.
https://doi.org/10.3233/prm-200734

‌Summary:

Studies suggest that more than 75% of spina bifida (SB) babies in America are
able to survive into adulthood with the evidence implying the significance of self-
management for lengthening life expectancy. Health conditions such as bowel and
bladder management and skin integrity are related to spina bifida and can be improved
with self-management and independence behaviors. While most spina bifida children
eventually achieve basic self-care skills such as; organizing activities with peers,
dressing appropriately, and preparing meals that are planned before hand, they usually
lag behind their typically-developing peers by 2-5 years in these activities.

In this review article, the authors provide guidelines regarding the self-
management and independence of those affected by SB from infancy to adulthood with
aspirational and practical objectives. The guidelines were created and designed by the
authors based on reviewed literature aquired by using the search terms, “independence
and spina bifida” or “independence and myelomeningocele”, which yielded 18 studies
and “spina bifida and self-management or spina bifida and independence” which yielded
an additional 25 studies. The forty-eight studies were then combined to form the
recommendations listed in the journal with the use of clinical questions that guided the
organization of the guidelines.

Their results state that evidence still leads to support of education and
assessment of families and those with SB regarding self-management issues. Evidence
also emerges for the success of community based educational and training programs to
improve self-management. However, the authors state that more research is needed to
improve and polis these programs and that they have yet to discover the most efficient
developmental steps that promote independence from youth in their population.

Reaction:

After reading the article and its guidelines, I can say that I personally agree with
the with it overall. The authors introduced their guidelines and recommendations
thoroughly and discussed their study accurately. Their objectives were also clear and
generally attainable but admitted that specific cases still required specific interventions
which was good. I was also convinced by their discussion of the importance of
independence and self-management in youth with spina bifida (SB), especially ones
who are transitioning to adulthood.

Also during my read, I have only just learned that some babies born with SB can
actually reach adultdood, my initial impression was that it was a severe complication
that dramatically decreased life expectancies of newborns. But now gaining this
knowledge, I have realized how advanced clinical practices have become to be able to
support these people with SB to reach adulthood. This realization also brought about
more questions than answers now that I found a whole new area of care for patients
with SB, which was fortunately addressed by the discussion and guidelines presented
by the authors.

For my personal experience regarding SB, I have not experienced or observed it

first hand before but what I can share is the knowledge I’ve gained from researching the
topic. The significant thing I found and would like to share is the situation of SB in the
context of the Philippines, where it is quite rare but is in the top 20 causes of death
across the lifetime of a person and is one of the third leading cause of death in the
infancy period.

A positive impact that I see the article having is the more effective enhancement
of independent and self-management of SB youth with the use of the guidelines and
recommendations of the authors. These guidelines were made with thorough research
and review of different literatures which makes them reliablie and generally effective.
Although, being a list of general recommendations makes it so that more specific issues
are not quite tackled or addressed by the guidelines which is, I would say, a negative
aspect of the article.

The article main content is the self-management and indepence guidelines for
the care of people with SB and as a student nurse, these guidelines are useful and
valuable since they equip me with knowledge regarding the care for people with SB. But
I am not the only person who can benefit from this article, registered nurses, nursing
and healthcare practitioners, and even professionals may use these guidelines in the
instances they are dealing with a case of SB. And with all the beneficial information
given by the authors, readers of the article will surely take a piece of knowledge with
them to be used in future purposes.