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D e c e m b e r 1 2 - 1 3 , 2 0 1 8 | A b u D h a b i , U A E
Journal of RNA and Genomics
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Volume 14
General Pediatrics Congress 2018
Current Pediatric Research
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ISSN: 0971-9032
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Volume 22
GENERAL PEDIATRICS, ADOLESCENT
MEDICINE AND NEONATOLOGY CONGRESS
OF EXCELLENCE
IN INTERNATIONAL
MEETINGS
alliedacademies.comYEARS
Maha Atout, Curr Pediatr Res 2018, Volume 22 | DOI: 10.4066/0971-9032-C3-009
CHANGING PRIORITIES IN THE CARE OF
CHILDREN WITH CANCER: THE EXPERIENCE
OF JORDANIAN PARENTS
Maha Atout
Philadelphia University, Jordan
Background:
When a child has a terminal illness, parents reach a stage of
acceptance of their forthcoming bereavement, refocusing their efforts on
providing the best end-of-life (EOL) care that is possible. This comes when
all treatment options have been explored, and there is no cure found for the
illness. Cancer is the most common illness that requires EOL care in West-
ern countries, with life-prolonging treatments explored. It is more and more
becoming the norm in Western countries for EOL care to take place out of
hospitals and in the patients’ homes which is in response to the wishes of the
patients and their families, as well as the medical professionals involved in
their care. However, the Arab culture significantly differs in numerous ways
fromWestern culture. There have been no prior studies in Palestine on differ-
ent issue related to parenting for children with cancer, but is something that
requires attention.
Purpose:
The purpose of the current study is to explore the experience of
parenting among parents who care for children with cancer.
Methods:
A Phenomenological hermeneutic approach was conducted in-
formed by the philosophy of Martin Heidegger. The study was conducted
in one oncology unit a Jordanian hospital. Parents of children aged (6-18)
years old or with all types of cancer were considered eligible. A purposeful
sampling strategy was adopted to recruit the participants. Maximum varia-
tion sampling will be employed. Data was collected using semi-structured
interviews.
Findings:
Thirty-two interviews were collected involving mothers (n=29), fa-
thers (n=3). The parents changed their focus during the care of their children
from an initial emphasis on normalising their children’s lives, to relieving their
physical and psychological discomfort. This change of focus accompanied
changes in the parents’ understanding of their children’s disease over time.
They became more realistic regarding the future of their children, and there-
fore attempted to make their lives as enjoyable and comfortable as possible.
Moreover, they evaluated any activity their children performed according to
howmuch it affected their levels of comfort. When these activities resulted in
further physical or psychological effort, the parents prioritised the comfort of
their children over the benefits of the activities.
Conclusion:
The parents’ experiences should be taken into consideration
when the medical teams establish the children’s treatment plans. Additional-
ly, the continuous education and specialised training for professionals, which
provides staff with specialised communication
skills and emotional support for children and
parents are imperative in improving the clinical
practice in the healthcare settings with limited
access to specialist palliative care.
Maha Atout completed my PhD at the University of Not-
tingham in 2017. I work as an Assistant Professor at the
Philadelphia University of Jordan. My experiences work-
ing with children with life-threatening and life-limiting
illnesses led to my interest in understanding communi-
cation between children with life-threatening conditions
and their parents and health-care professionals. Thus, my
PhD work focused on investigating communication in the
care of children with palliative care needs from the per-
spectives of Jordanian mothers, physicians, and nurses.
I have published several papers in this field. I am also in-
terested in investigating parental experiences of decision
making at the end of life for children with life-threatening
and life-limiting conditions. Currently, I am investigating
children’s awareness of death, a subject that is largely ne-
glected in the literature. During my training in the Universi-
ty of Nottingham, I gained a solid foundation in qualitative
and mixed method research. I have presented at several
international conferences and became increasingly pro-
ductive in disseminating the findings of my research.
Maha.atout@hotmail.comBIOGRAPHY