The Concept of Child Care

with Chronic Illness/Terminal

Ns. Nopi Nur Khasanah, M.Kep., Sp.Kep.An

Introduce
 All chronic illness are chronic conditions, very few
chronic conditions are chronic illness
 A chronic illness “implies being sick and needing to
recover” (Selekman & Gamel McCormick, 2006), e.g
Cancer, for with the goal is remission of symptoms

 Death of a child is viewed as outside the natural order of

life.
 Children represent hope, energy, and health
 53,000 Pediatric Deaths a year
 Conditions Contributing to Childhood
Death
 Cancer
 Complications of prematurity
 Congenital anomaly
 Cystic fibrosis
 HIV infection
 Major organ dysfunction or failure
 Neurodegenerative diseases
 Severe neurologic and/or physical disability
 Severe gastrointestinal disorder/malformation
 Trauma

PALLIATIVE CARE IN CHILDHOOD

TERMINAL ILLNESS
 Palliative care is now widely recognized as a critical part
of excellent care for children with complex, chronic, or
life-limiting diseases, but patients continue to receive this
care very late in their illness trajectory (Johnston &
Vadeboncoeur, 2012)

•Lack clinical education in the priciples of making

the transition with children from curative to
palliative care
•Lack methods of adequately managing the pain
and suffering experienced by children and their
families during the dying process (Zhukovsky,
Herzog, Kaur, et al, 2009)
Curative and Palliative Care
 Curative care
• Focuses on quantity of life and prolonging of life
 Palliative care
• Focuses on quality of life and death, and views death
as a natural part of life
Definitions
 Active total care of the child’s body, mind, and spirit, and also
involv[ing] giving support to the family (WHO, 2014)
 “active, total approach to care, embracing physical, emotional,
social, and spiritual elements. It focuses on enhancement of the
quality of life for the child and support for the family, and
includes management of distressing symptoms…” Lantos JD,
Arch Dis Child Fetal Neonatal Ed 1994

Interventions
 Provide pain and symptom management
 Attention to issues faced by the child and family with
regard to death and dying
 Promotion of optimal functioning and quality of life
Nursing Roles
 Information brokers
 Emotional support
 Advocates

Importance of Honest Communication

Nurses need to:
 Initiate the process
 Remain neutral
 Avoid giving personal opinions or eperiences
Communicating Bad News to Families
 Provide a setting conductive to communication
 Ensure privacy; Use appropriate body language; make eye
contact
 Have parents choose who will attend
 Determine what the parent knows
 Ask questions “what have you made of all this?”
 Determine what the parent want to knows
 Use questions such as “ are you the sort of person who likes
to know every detail or just the basic facts?”
 Give information (Aligning and educating)
 Use the same vocabulary; give information slowly, concisely, and
in simple language; avoid medical jargon; check regularly
 Communicating...
 Respond to parents’ reactions
 Acknowledge all reactions and feelings particularly using the
emphatic response technique (identifying emotion, identifying
cause of emotion, & responding appropriately)
 Close
 Briefly summarize major areas discussed
 Ask parents if they have other important issues to discuss at
this time
 Make an appointment for the next meeting
Communicating with Dying Children
 Discuss at the child’s level
 Younger children tend to be concrete thinkers
 Begin with the child’s experiences, e.g.You’ve told us how tired
you’ve been lately
 Let the child’s questions guide
 Provide opportunities for the child to express feelings
 Encourage feedback
 Ask the child to summarize what has been heard
 Use other resources (book or movies)
 Use the child’s natural expressive means to stimulate
dialoge (games or music)
Spiritual & Religious Support
 Assess the family’s spiritual or religious needs (Heilfferty,
2004; National Cancer Institute, 2009)
 Facilitate the family’s spiritual or religious ritual (e.g.
prayer)
 Inform family members of quiet area for prayer
 Note signs of spiritual distress (e.g. “Why my child?”;
“Why aren’t my prayers being answered?”)
Challenges

Patient/ Child
 Not legally competent
 Lacks verbal skills to describe needs, feelings, etc.
 Not achieved a "full and complete life”

Family
 Difficulty understanding treatment plans, prognosis, etc.
 Needs relief from burden of care
 Stress on finances
 Difficulty with siblings
Challenges
Caregivers
 sense of “failure”
 lack familiarity with dosages and medications for symptom
management
 lack experience in caring for dying patients
 difficulty of prognostication for children with complex
problems
Palliative Care In Indonesia
 Surat Keputusan Menteri Kesehatan Republik Indonesia,
Nomor 604/MENKES/SK/IX/1989.
 Surat Keputusan Menteri Kesehatan Republik Indonesia No.
812/MenKes/SK/VII/2007
 19 Pebruari 1992,Poliklinik Perawatan Paliatif dan Bebas Nyeri
at RSUD Dr.Soetomo,
 Then, Jakarta, Bandung, Yogyakarta, Denpasar, & Makassar
(Only in 6 provinces for 18 years).
Is Palliative Care Needed?
In 2008, The Singapore International Foundation
- each year there are approximately 600 children develop
cancer in Jakarta.
(>50% penderita kanker datang dalam stadium lanjut).
- In all of Indonesia, this number has reached 1100 new
cases of cancer patients under the age of 18 years old
each year (SIF, 2008).
- High prevalence of children with HIV/AIDS, although
there is not an exact estimate of the number of children
suffering from HIV/AIDS. This data emphasizes the
importance of palliative care services for children.
Barriers

 Focus on infectious diseases.

 Mindset of medical personnel
 Less interesting job
Rachel House
 Indonesia’s first palliative care project for children was launched by Rachel
House
 Established in 2006
 Non-profit organization, care for children from poor families between the
ages of 0-18 years old with terminal illnesses such as cancer and HIV/AIDS.
 With their vision of “never seeing a child die alone without love and care,”
 Initially, in-patient and homecare services. Over time, RH realized that the
model of in-patient care was not well received by the patient’s family.
Inpatient care is not consistent with Indonesian culture as it is every
Indonesian’s dream to leave this world at home
 National Community Health Insurance (Jamkesmas), the Poor
Families Insurance (Gakin) or the Certificate of Being Unable
to Provide for Oneself (SKTM).
 RH is also a palliative care training provider in Indonesia. With
assistance from palliative care professionals from Singapore,
visits from highly experienced palliative care nurses and nurse
educators from Australia,
 http://www.youtube.com/watch?v=5K8uHudyKU0
 SUMMARY
 PEDIATRIC PALLIATIVE CARE: not about dying, it’s about helping
children and families to live to their fullest while facing complex
medical conditions.
 Pediatric palliative care: an interdisciplinary practice
 Coordination of care: critical and a central function of a pediatric
palliative care team
 Palliative care is different from hospice: early from diagnosis.
References
 Ferrell, B.R. & Coyle, N. (Eds.) (2007).Textbook of palliative nursing,
2 nded. New York, NY: Oxford University Press

 Hockenberry, M.J. & Wilson, D. (2015). Wong’s nursing care of infant and
children. Canada: Elsevier Mosby.

 Marrelli, T.M. (2004). Hospice and Palliative Care Handbook: Quality,

Compliance, and Reimbursement. Canada: Elsevier Mosby. ISBN-13: 78-
0323024792