Case study #2

Case Studies:
1. Jessie is a 3-year-old boy who was diagnosed with Duchenne muscular dystrophy. Jessies
parents have been struggling with the diagnosis but have slowly been adapting their lives to
support Jessie. Jessies mother quit her job and decided to remain home to provide care for Jessie
and his older siblings. Jessies father as a computer analyst has allowed Jessies mother to be a
stay-at-home mother, but the finances are tight at times.
a. What are the effects of special needs on Jessie?

Children with this disease tend to become socially isolated as their physical
condition deteriorates to the point that they can no longer keep up with friends
and classmates. Their physical capabilities diminish, and their dependency
increases at the age at which most children are expanding their range of interests
and relationships. When Jessie gets older, he may also need psychiatric or
psychologic counseling to deal with issues such as depression, anger, and quality
of life. (pg. 1729)

b. What are the effects of special needs on Jessies family?

The family is faced with physical limitations of housing, transportation and

mobility. Housing accommodations must be made so the wheel-chair bound
child can be mobile in the home settings. Transportation in a car restraint seat
adapted for the child with weakened neck and back musculature is necessary,
and eventually a wheel-chair accessible vehicle will be requires. (pg. 1728)

c. What is involved in the nursing management of a medically fragile child?

The major emphasis of nursing care is to assist the child and family in coping
with the progressive, incapacitating, and fatal nature of the disease; to help
design a program that will afford a greater degree of independence and reduce
the predictable and preventable disabilities associated with the disorder; and to
help the child and family deal constructively with the limitations the disease
imposes on their daily lives. Because of advances in technology, children with
this disease may live into early adulthood; therefore the goals of care should also
involve decisions regarding quality of life, achievement of independence and
transition into adulthood. (pg. 1728)
o Nutritional needs and nutrition modification according to the needs of the
child and the family.
 o The nurse as a case manager can also assist in decision making regarding
home care when the child becomes increasingly incapacitated.
o Nurses can assist with decision making by exploring all available options
and resources and supporting the child and family in the decision.
(pg.1729)

2. Sally is a 17-year-old girl who is diagnosed with cystic fibrosis (CF). Sally has been
hospitalized numerous times for complications related to CF. Two years ago she received a
bilateral lung transplant but has struggled with rejecting the lungs. Her health is declining rapidly
and she is not a candidate for another lung transplant at this time. She is currently at the local
childrens hospital that has provided her care since diagnosis. The nurse and pulmonologist
speak to the parents about the likelihood that Sally will die in the near future, and plans for this
event need to be made.
a. What does palliative care for Sally involve?

Palliative care for sally involves the focus on interventions that will address all
aspects of not just her but also her familys comfort. This requires attention to
sallys physical comfort and the social, emotional, and spiritual needs of her as
well as the family. Based on the decision by sally and her family regarding their
wishes for care, the family has several options from which to choose. (pg. 886)

b. What does hospice care for Sally involve?

If sallys family wish to take her home during the final phases of her illness,
hospice would be great option for them. Hospice is a community health care
program that specializes in the care of dying patients by combining the hospice
philosophy with the principles of palliative care. Hospice philosophy regards
dying as a natural process and views the care of dying patients as including
management of the physical, psychological, social, and spiritual needs of the
patient and family; therefore, they will provide care in sallys home or an
inpatient facility that follows the hospice philosophy.
Their goal is for sally to live life to the fullest without pain, with choices and
dignity, in the familiar environment of their homes, and with the support of their
families.
Hospice is also concerned with the familys post death adjustment, and
bereavement care may continue for a year or more. (pg. 886)

c. What are the nursing responsibilities for the management of a dying child?
 Nurses should use a holistic approach to symptom management that includes
pharmacologic and non-pharmacologic interventions when possible to optimize
treatment.
The nurse should use the least traumatic method during medication
administration.
Nurses should give pain control for children in terminal stages of illness or injury
the highest priority.
The nurse should assess frequently for any symptoms that might be causing the
child physical distress. Assessment includes information regarding the
symptoms onset, severity, duration, and effect on the childs quality of life.
These symptoms are consistently managed with appropriate medications or
treatments and interventions such as repositioning, relaxation, massage, and
other measures to maintain childs comfort and quality of life. (pgs. 887-888)

References:

Hockenberry, M. (2013). Wongs nursing care of infants and children (9th ed., pgs., 886-888, 1728-1729).
St. Louis, Missouri, Mosby, Inc.