culture

1. SPIRITUAL and CULTURAL ISSUES
in PEDIATRIC PALLIATIVE CARE
Global HOPE
Hematology Oncology Pediatric Excellence
Dr. Nakirulu Annet, MBChB, MMED
Paediatrics & Child Health, Global HOPE
Dr. Deogratius Bakulumpagi, MBChB
Medical Officer, Global HOPE
Cosiate Abenawe, DHSM, BSN
Nursing Officer, Global HOPE
Immaculate Nassanga, RN
Nursing Officer, Global HOPE

2. Objectives 1. Define spirituality and religion.
2. Discuss spiritual needs.
3. Describe how to perform a
spiritual needs assessment in
children.
4. Review principles of spiritual care.
5. Introduce cultural care strategies.
6. Emphasize the interprofessional
team in children’s palliative care.
7. Introduce a case review for
discussion.

3. Spiritual and
Religious
Issues in
Palliative Care
Spirituality: Whomever or whatever
gives one meaning in life
• Often expressed as religion‐
relationship with God
• Can also refer to other things (nature,
belief in the good of all)
Religion: Structured and organized
group based on shared beliefs
• Often providing a system of rites and
rituals

4. Role of Religion and Spirituality in
Pediatric Palliative Care
Play important roles hand‐in‐
hand in palliative care
• Establishes an ethical foundation
for clinical decision‐making
• Provides a set of core beliefs
about life and its meaning
• Buffers against depression and
fear
• Prepares one for death events
Religion
Religion &
Spirituality Spirituality

5. Spiritual Needs
• Meaning and purpose in life
• Love and reassurance of
God`s love
• Acceptance
• Feeling significant and
worthy
• Hope even in their suffering
• Answers to questions
• Support and care
• Help with their fears e.g., life
after death

6. Signs of Spiritual
Problems in Children
• Despair and hopelessness
• Refusal to take medications and eat
food
• Doubting God’s love
• Depression, sadness and desire to
die
• Withdrawal and loss of interest in
life
• Worries and fears of dying and
death
• Suspicion and mistrust in people
• Anger, irritability, crying, disruptive
• Over dependence acts, loss of self
worth

7. Arising Questions for
Patients and Families
• Why me/now?
• What/who has caused this?
• Why was I placed on earth?
• Is there hope?
• Why do I have to suffer?
• Is it okay to say goodbye, to
let go?
• Is there a God?
• What happens after death?

8. Spiritual Assessment in Children
• Have you known someone/
a pet that has died? How
did you feel?
• When someone dies, where
do they go? Why?
• What do they find there
when they die?
• What are your worries?
• What are your hopes?
• What has this been like for
you?
• Includes reviewing the child’s
hopes, dreams, values,
meaning of life, as well as the
role of prayer and ritual
beliefs
• Useful questions may include
‐ Who/what makes you feel safe?
‐ Who/what is closest to your
heart?
‐ What makes you happy/sad/
frightened?

9. Spiritual Assessment
• Taking a spiritual history allows clinicians to understand
patients more fully
• The FICA Spiritual History Tool ©™ was developed by Dr.
Puchalski and a group of primary care physicians to help
physicians and other healthcare professionals address
spiritual issues with patients
F= Faith and Belief
I= Importance
C= Community
A= Address the Care
Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand
patients more fully. Journal of palliative medicine, 3(1) 129‐137.

10. Spiritual Assessment: Faith And Belief
• Do you consider yourself spiritual or religious?
• Is spirituality something important to you?
• Do you have spiritual beliefs that help you cope with
stress/ difficult times?
‐ Contextualize to reason for visit if it is not the routine history
• If the patient responds "No," the health care provider
might ask, What gives your life meaning?
‐ Sometimes patients respond with answers such as family,
career, or nature
Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand
patients more fully. Journal of palliative medicine, 3(1) 129‐137.

11. Spiritual Assessment: Importance
• What importance does your
spirituality have in our life?
• Has your spirituality influenced
how you take care of yourself,
your health?
• Does your spirituality influence
you in your healthcare decision
making? (e.g., advance directives,
treatment, etc.)
Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand
patients more fully. Journal of palliative medicine, 3(1) 129‐137.

12. Spiritual Assessment: Community
• Are you part of a spiritual community?
‐ Communities such as churches, temples, and mosques, or a
group of like‐minded friends, family can serve as strong
support systems for some patients
• Can explore further: Is this of support to you and how?
• Is there a group of people you really love or who are
important to you?
Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand
patients more fully. Journal of palliative medicine, 3(1) 129‐137.

13. Spiritual Assessment: Address In Care
How would you like me, your
healthcare provider, to
address these issues in your
healthcare?
Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand
patients more fully. Journal of palliative medicine, 3(1) 129‐137.

14. Spiritual Care
• Begins at the level of the
patient’s or caregiver’s own
insight
• All interventions should be
agreed with the patient and
family
Qualities required in
providing spiritual care
• Effective communication
• Compassion
• Empathy and understanding
but avoid “I know how you
feel”
• Preparedness to meet their
spiritual needs

15. Spiritual Care
Interventions • Provide a secure caring
environment
• Deep listening
• Reassure and maintain hope
• Allow expression of personal
beliefs and values
• Provide religious and
sacramental care according to
faith
• Be non‐judgmental
• Confront fears with facts
• Prepare for death

16. Importance of Spiritual Care
• Improves quality of life and
promotes health
• Helps one to set goals and
working towards them
• Promotes value for inner
self more than the physical
• Gives freedom from guilt
• Promotes hope

17. Culture Culture: Learned, shared and
transmitted values, beliefs,
norms and ways of life of a group
that guides thinking decisions
and actions in patterned ways
Culture affects
• Views of illness and death
• Social customs
• Relationships
• Decision‐making

18. Components of Culture
• Financial status
• Place of residency
• Child’s role
• Education level
• Social consideration
• Ethnic identity
• Gender
• Age
• Differing abilities
• Sexual orientation

19. Cultural Care Strategies
• Identify cultural beliefs
• Understand and respect all
cultural values
• Effective communication
• Avoid conclusions based on
limited information

20. Building Relationships
The Interprofessional Team

21. Religious Care Team
• Pastoral care staff
• Social workers
• Volunteers
• Community groups

22. Case Study
• Mother and other church members
declined blood/product transfusion
despite intensive counselling and
consultations
• Child at point of death with no
autonomy
• Mother had so far lost 2 children
due to anemia and not willing to
change her mind
• Managed child conservatively with
no products till d/c however will
need splenectomy
KC 11yrs/F (Jehovah Witness
from Congo) with hypersplenism
and recurrent anaemia for 5yrs
• Admitted with epistaxis,
hematemesis and yellow eyes
• Exam: Severely pale, actively
nose bleeding, jaundiced
spleen 16cm BCM
liver 8cm BCM
HB:2.5, Plts:14, WBC:7.66

23. Resources
• Leonard, B. and Carlson, D. (n.d.) Introduction to Spirituality.
Available at http://www.touroinstitute.com.
• Mueller, P. S., Plevak, D. J. & Rummans, T. A. (2001). Religious
involvement, spirituality and medicine: Implications for clinical
practice. Mayo Clinic Proc. 76, 1225‐1235.
• Amery, J., Rose, C. & Byarugaba, C. (2009). Textbook of
children’s palliative care in Sub – Saharan Africa, Hospice Africa
Uganda.
• Lovett, N. (2003). The Role of the Pastoral Worker, Health
Professionals Course Manual, Hospice Africa Uganda, Marianna
Press, Entebbe.

24. Resources Continued
• Hospice Africa Uganda. (2015). Palliative Care Manual for
Initiator of Palliative Care in Africa, 3rd Ed. Kampala, Uganda.
• Hospice Africa Uganda. (2008). Palliative Care Manual for
Health Professionals, 4th Ed. Kampala, Uganda.
• Malawi Ministry of Health. (2015). Introduction to Children
Palliative Care; Manual for service providers, Malawi
Government.
• Princess Marina Hospital Treatment Guidelines. Gaborone,
Botswana.
• End‐of‐Life Nursing Education Consortium (ELNEC), based at
the City of Hope in Duarte, California, initially established the
pediatric end‐of‐life curriculum to train nurses throughout the
United States. The authors of ELNEC have given Global HOPE
permission to use their materials in this course for health care
providers in Sub‐Saharan Africa.

25. Global HOPE
Hematology Oncology Pediatric Excellence
Thank You!
Global HOPE Uganda