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Supporting Families with Chronically Ill Children

Listen-
o Listen to patients and families
gives you insight into their
lives and helps to build trust
Show Understanding-
o Validate their wide range of
emotions and clarify
information
Ensure Understanding-
o Reduce stress by making sure
information is fully understood
Be Honest-
o Provide truthful answers no
matter the question in order to
build a sincere relationship

Promote Breaks for Parents-
o Express to them it is ok to take
time to themselves, that you or
another caregiver is available to
monitor their child
Provide Resources-
o Provide a variety of resources to
help parents know they are not
alone
Dont Judge-
o Accept each family as they are
and find strategies that work with
their way of life

Support Strategies YOU Can Use
Enhanced support system decreases stress and depression
Children with Chronic
Illness
What Happens
within Families
Parents deal with range
of emotions; fear, denial,
guilt, grief
Siblings can feel
neglected because
more time and energy is
devoted to sick child
Ill child has necessary
medical treatments that
interrupt their usual
activities

7-18% of children have a
chronic illness
Diagnosis in children is on the
rise
Diagnosis shifts the working
family structure
Diagnosis adds stress to lives
of sick child, parents and
siblings
Interventions to
Relieve Stress
Introduce to a social
worker or member
of psychosocial
team
Involve both
parents, if possible,
when educating and
providing new
information
Teach positive
coping mechanisms,
such as
o Writing journal
o Setting goals
o Making a plan
o Finding good in
a bad situation
Set up home care or
respite services


Reflective Note-
For this project, I modeled this informative flyer after many I have seen around Boston
Childrens Hospital during my co-op. These flyers are geared towards health professionals
and support staff in the hospital and are found in places such as the break room, conference
room and bathroom. It could also be emailed individually or part of a newsletter. The one
page layout makes the information easy to find without having to flip through multiple
pages, which is unlikely to occur in a busy environment like a hospital. The information in
this flyer can apply to anyone that has contact with chronically ill patients and their families
because anyone can provide support to a family, not just nurses or doctors. For example,
sometimes the administrative staff becomes very close with families and this flyer will give
them background and suggestions to better support them. Family centered care is a big
initiative in many hospitals today and this flyer provides fundamental information to aid this
initiative. It shows the readers what a glimpse of what life is like with a chronically ill child,
how they can support them and suggestions for parents so they can help themselves. The
information in this flyer is slightly more basic because it is directed at a wide audience, not
just medical professionals.



References
Adams, B. (Photographer). Couple Treats both children with Cystic Fibrosis and tries to raise money for event
(Photograph) (2012) Retrieved June 3, 2014 from
http://www.lehighvalleylive.com/nazareth/index.ssf/2012/05/upper_nazareth_township_couple.htm
l
Boston Childrens Hospital Logo: Horizontal 72 dpi screen resolution (Logo). (n.d.) Retrieved June 7, 2014 from
http://www.childrenshospital.org/legal/brand-style-guidelines
Boyse, K & Laundy, J. (2012). Children with Chronic Conditions. Retrieved from
http://www.med.umich.edu/yourchild/topics/chronic.htm#familydo
Cousino, M.K, & Hazen, R. A. (2013). Parenting Stress Among Caregivers of Children With Chronic Illness: A
Systematic Review. Journal of Pediatric Psychology 38(8), 809-828. doi: 10.1093/jpepsy/jst049
Goodshall, M. (2003). Caring for families of chronically ill kids. Retrieved from
http://www.modernmedicine.com/modern-medicine/news/caring-families-chronically-ill-kids
Knafl, K.A., Deatrick, J.A., Knafl, G.J., Gallo, A.M., Grey, M., & Dixon, J. (2013). Patterns of family
management of childhood chronic conditions and their relationship to child and family functioning.
Journal of Pediatric Nursing, 28(6), 523-535. Retrieved from
http://www.sciencedirect.com.ezproxy.neu.edu/science/article/pii/S0882596313001103
Lamarche, K & Newton, K. (2012). Take the Challenge: Strategies to Improve Support for Parents of
Chronically Ill Children. Home Healthcare Nurse 30(5) E1-E8. Retrieved from
http://www.nursingcenter.com/lnc/Static-Pages/Take-the-Challenge-Strategies-to-Improve-
Support-f#FF2
Life with a Trach (Photograph). (2013). Retrieved June 3, 2014 from
http://www.pediatrichomeservice.com/blog/tag/life-with-a-trach
Leis-Newman, E. (2011) Caring for chronically ill kids. Monitor on Psychology 42(3), 36. Retrieved from
http://www.apa.org/monitor/2011/03/ill-children.aspx
Spina Bifida Information for Families (Photograph). (2011). Retrieved June 3, 2014 from
http://www.cdc.gov/ncbddd/spinabifida/families.html