CULTURAL CHALLENGES/DISASTER PREPAREDNESS
| CULTURAL CHALLENGES OF CHILDREN WITH CHRONIC DISABILITIES: A PEDIATRICIAN’S
PERSPECTIVE— Lindia Willies-Jacobo, MD, Associate Clinical Professor of Pediatrics, University of California, San Diego,
School of Medicine
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| Diversity data: United States—according to 2000 census, ≈32 million people speak language other than English at
home (of those, almost half have difficulty speaking English); ≈10% of US population foreign born; estimated that by
2020 40% of school-aged children will be minorities; California—≈37 million people; 1 of 4 “majority-minority” states
(no distinct ethnic majority); 49% white; 27% Latino; 12% Asian-Americans and Pacific Islanders; Latinos fastest-growing
group
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| Definitions: culture—way of life of group of people; behaviors, beliefs, values, and symbols that group accepts (generally,
without thinking about them); often passed from one generation to next; cultural groups—individuals who share common
beliefs, attitudes, values, and behaviors; cultural sensitivity—knowing that cultural differences as well as similarities exist,
without assigning values to them (better or worse, right or wrong)
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| Why concept of culture important in delivery of health care: more important to know what sort of patient has
disease than what disease patient has (William Osler); culture often affects how chronic and disabling conditions treated; in
some cultural groups, disabilities viewed as part of normal life cycle; culturally based health beliefs and practices determine
which problems recognized as needing medical care and whether someone will follow through with prescribed treatment;
language and cultural differences can hinder communication between physician, child, and family; persons from minority
groups may delay seeking health care because of historic inequalities in health care system; cultural sensitivity critical to effective
care
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| Considerations in determining level of acculturation: time patient has been in country and community; language
spoken at home (language barrier?); health beliefs and practices; values about education, work, and family structure
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| Take care not to stereotype families: within any cultural group, significant heterogeneity; self-identification with
particular culture does not mean that individual subscribes to any health beliefs or practices that culture may endorse
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| Definition of disability (Americans with Disabilities Act): physical or mental impairment that substantially limits
or restricts condition, manner, or duration under which average person in population can perform major life activity
(eg, walking, seeing, hearing, speaking, breathing, learning, working, taking care of oneself)
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| Prevalence of disability: by age—according to 2000 data, 18% to 20% of population in United States disabled; in 5-
to 15-yr of age group, almost 6%; in 16- to 64-yr of age group, ≈18%; data for children <5 yr of age difficult to obtain
(estimated at 3%-5%); ethnicity—blacks, American Indians, Latinos, and Pacific Islanders disproportionately represented
in disabled age group ≥5 yr of age; family income—patients <18 yr of age (the poorer the family, the more likely
disability)
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| Challenges of disabled child: feeling of disadvantage based on being different; stigma attached to disability; children
who experience disability and chronic illness often marginalized by attitudes and behaviors of others; disabled children at
3-fold greater risk for abuse than those without disabilities; healthy siblings may get less attention because parents busy
caring for disabled child; significant physical and emotional burden on parents
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| Challenges of disabled minority child: double jeopardy (parallel between ethnic minority status and disability; proposed
mechanisms less access to care and greater exposure to violence); Institute of Medicine—people with disabilities
who are from ethnic minority groups do not receive medical services equal to those received by white counterparts; Kalyanpur
and Rao (1991)—minority-status parents described their relationships with health professionals as unempowering
due to disrespect, provider focus on deficits, and discounting of differences in parenting styles; parents often feel “looked
down on” and that their concerns not acknowledged
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| Cultural beliefs about disabled child: vary by cultural group
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 | Caveat: speaker not suggesting that everyone from cultural backgrounds discussed subscribes to beliefs described
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| Latinos: concept of “fatalismo” (disability seen as “God’s will”); God “selected” family for child (badge of honor);
sometimes blame assigned to mother; disability may be thought of as contagious; most activity and support for child
centers around family, with significant reliance on extended family to care for child; religion may play important role,
with church providing emotional and spiritual support; external sources of long-term care may not be sought out
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| Blacks: disabled child may be viewed as “blessing”; parents often distrustful of physicians and other health care professionals;
families often private and reluctant to share true concerns; faith and spirituality may play important role in how
disability viewed (coping strategies include prayer); for many, church center of community life; possible resistance to
external sources of long-term care, except as last resort; extended family and friends included in circle of care
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| Asians: disabled children may be viewed as moral retribution by ancestors or deities for misdeeds; shame may be associated
with having child with disability (blame sometimes assigned to mother); women often responsible for care of
child; strong sense of duty among family members to care for each other; sometimes, fatalistic attitude (many issues
surrounding care of child left to fate); concept of disability often not well understood; possible reluctance to seek medical
services or other assistance
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| American Indians: many American Indian societies have great tolerance based on holistic approach to life and health;
disabilities framed as special strengths, rather than deficiencies; unlike many cultures that shun people with disabilities,
many American Indian cultures honor and respect disabled children, seeing them as weak in body, but strong in
mind and spirit
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| Sources of culture clash: Western cultures individualistic, with less collectivism; health care providers part of medical
culture in which autonomy and self-determination valued and rewarded; patients from more collectivist cultures may feel
threatened and disoriented by individualistic approaches; western-trained health care providers tend to explain disability
solely in medical terms; body language may be misinterpreted (in some American Indian cultures, firm handshake
viewed as disrespectful, while limp handshake symbol of humility and respect); misunderstandings based on language
barriers
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| Awareness–assessment–negotiation model for cultural competence (adapted from Pachter)
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| Awareness: of commonly held beliefs and practices in community; how disability viewed in population served—
significant body of medical anthropology literature; Web-based resources include National Center for Cultural Competence
(gucdc.georgetown.edu)
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| Assessment: whether patient or family relates to specific health beliefs and practices and under what circumstances;
open-ended nonthreatening questions (eg, Kleinman’s Tool to Elicit Health Beliefs in Clinical Encounters)
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| Negotiation: integrating patient-held beliefs and practices with biomedical treatment, health education, and health maintenance;
case—child from very traditional Latino family; speaker had known family 2 yr and had cared for child since
birth; mother distraught about having disabled child and even blamed by family for chromosome-based disability
(many clinical encounters needed to reverse situation); mother resisted assistance from outside caregivers; through negotiation,
caregivers allowed into home as long as mother present and active in therapeutic interventions for child
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| Summary: better understanding of minorities with disabilities critical as ethnic, racial, and cultural portrait of United
States continues to change; effective health care demands acknowledgment of importance of culture in people’s lives and
respect for cultural differences; while cultural sensitivity can be practiced with each clinical encounter, clinical competence
takes time to master
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| DISASTER PREPAREDNESS: LESSONS LEARNED FROM KATRINA —Joan E. Shook, MD, Professor of Pediatrics
and Head, Section of Emergency Medicine, Baylor College of Medicine, and Medical Director, Emergency Department,
Texas Children’s Hospital, Houston, TX
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| Disaster preparedness: if properly prepared, people can prevent cascading terror and mitigate damage caused by disaster;
health care resiliency—includes surveillance for unusual organisms and reporting of, eg, cluster of unusual pneumonia
during anthrax outbreak; coordination and communication; training; protective equipment; surge capacity, ie,
ability to handle sudden influx of large numbers of patients
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| Hurricane as model of disaster: Hurricane Katrina occurred August 2005, leaving >1300 people dead, countless injured,
>1 million displaced; >4500 children initially reported missing; critical lesson from hurricanes Katrina and Rita that
major natural disasters likely to overwhelm capacity of states and localities to respond
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| Hurricane Katrina (initial events): August 29—category 5 hurricane struck Gulf coast, including Port St. Louis and
Biloxi; August 30—levees broke and New Orleans flooded; August 31—intensive evacuation of hospitalized patients
(hospitals evacuated pediatric intensive care units [PICUs] and cardiovascular intensive care units [CVICUs]); critically
ill patients ferried out; Texas Children’s Hospital (TCH) absorbed 42 children from ICUs and ≈60 inpatients; September
1—evacuation of New Orleans initiated
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Houston’s Katrina Experience
| September 1: buses began to arrive at Astrodome complex; children often arrived without parents or identification; initially
one triage station at entrance to Astrodome (public health system and public hospital district initial managers of
process); identification at registration, then small clinic set up on floor of Astrodome; 27000 people arrived at Astrodome
in first 24 hr (≈30% needed care); medical staff quickly overwhelmed; at 11:30 PM , televised plea for additional physicians;
Paul Sirbaugh and speaker first pediatricians to arrive on site; initially, registration requirement brought process to
standstill; 2700 prescriptions written in <24 hr (to be filled by county pharmacy); first pediatric clinic 3 chairs
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| September 2: buses continue to arrive; volunteer pediatricians (mostly retired) start to arrive; “real estate” obtained and
retained to provide care; clinic set up using plastic sheets and barriers used in trade shows; volunteer nurses arrive; registration
requirement temporarily discontinued; pediatric clinic became successful model for others; ill patients referred to
clinic area; dehydration and malnutrition common (infants without formula for 3 days); presentations—lacerations,
sprains, and minor trauma; with discontinuation of routine medication, asthma symptoms; rashes; fever and colds; psychiatric
and social issues, including problem of abandoned children
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| September 2-3: pediatric numbers continued to increase; county command structure provided more space
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| Texas Children’s Hospital (TCH): provided support; administrative leadership released resources; hospital guaranteed
around-the-clock staffing, supplies, and equipment for clinic; pediatric clinic started to take shape (ultimately, 11 examination
rooms); on busiest day, 400 children seen (3700 in <2 wk); hospital set up pharmacy; medications included
antibiotics, topical medications, metered-dose inhalers; as supplies used, replenished by TCH
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| More developments: county pharmacy system overwhelmed; drug stores (CVS pharmacies) arrived and set up mobile
pharmacies, operating on promise of payment; state approved new emergency guidelines for prescription refills; psychiatric
and social service personnel arrive
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| Pediatric clinic: nurses with pediatric emergency medicine experience vital; clinic actually small pediatric emergency department;
rapid triage and deployment skills critical; nurses with other backgrounds; unit secretary (for infectious disease
staff and to manage floor staff); environmental services provided bathing facilities and clean clothes; runners
available; staffing 24/7
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| Diarrhea outbreak: cases recorded and number compiled; Centers for Disease and Control and Prevention (CDC) contacted
to assess outbreak; isolation begins—area provided and quickly filled; some patients required intravenous (IV)
intervention; isolation expanded; cases climb—separate toilet facilities for staff and evacuees; showers and fresh
clothing provided
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| September 4: many volunteers on site (accurate identification of clinical staff difficult); rogue clinics set up around
town—well-intended, but shut down by county because of lack of quality control
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| September 5-11: clinic “humming” (400 patients/day seen); diarrhea outbreak—Norovirus only pathogen identified
(from exposure to contaminated floodwater; many isolates); outbreak control—outbreak continued >1 wk in Astrodome,
and ended as evacuees vacated complex
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| September 12-16: clinic hours reduced to 12 hr/day; departure of TCH staff staggered; September 16—all clinics
closed and patients redeployed to other care centers in Houston
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| Assessment of intervention by TCH: benefits—few patients transported to area hospitals; TCH inpatient units not
overcrowded, and emergency department never on divert; costs—temporary loss of personnel; financial costs
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| 2 wk later Hurricane Rita: category 5 storm that struck Houston directly; >2.5 million people evacuated from
Texas coast; 120 people died; >24 died in evacuation; TCH evacuated portions of neonatal intensive care unit (NICU)
and PICU
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| Aftermath (Litaker Group Report): Texas Department of Health hired group to analyze medical response to Hurricanes
Katrina and Rita; initially, no pediatricians included in interviews, but pediatricians provided input for final version
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Lessons Learned
| Preparedness: meet with hospital planners to ensure that children’s needs met; organize pediatric community to ensure
appropriate distribution of expertise; develop educational packets for families; work with hospitals and schools to develop
decision trees for initial steps
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| Pediatrician as expert resource: in community—role in regional disaster planning critical; emergency medical services
(EMS) planning—to ensure that specific needs of children addressed; educate families about disaster
preparedness—what to do; whom to seek for help; location of safe places to gather; concrete steps to take should disaster
strike for those at work, at school, and at home; strategies to minimize parent-child separation; children with special
health care needs—during Rita, no comprehensive list of people on home ventilators or of technologically dependent
children; backup medication and supplies; adequate training so that family members can step in should health care
worker be unavailable
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| Pediatric office preparedness: during Katrina, because hospitals in affected areas not operational, medical offices became
sites of care; participate in community disaster drills
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| Mitigation: mental health needs often unmet; after 9/11, 18% of children in New York City developed severe posttraumatic
stress disorder (PTSD), but only 10% received counseling; surge capacity must be addressed
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| Summary: planning critical, relationships key, and pediatrician involvement essential; needs of children may not be met
unless pediatricians advocate for them
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Suggested Reading
Bonnner MR, Mintz ED: Household water disinfection in hurricane-affected communities of Louisiana: implications
for disaster preparedness for the general public. Am J Public Health 97:S130, 2007; Davis SP et al: Cultural considerations
for treatment of childhood obesity. J Cult Divers 7:128, 2000; Gavigan TF et al: Hurricane Katrina: medical response
at the Houston Astrodome/Reliant Center Complex. South Med J 99:933, 2006; Gnauck KA et al: Do pediatric
and adult disaster victims differ? A descriptive analysis of clinical encounters from four natural disasters DMAT deployments.
Prehosp Disaster Med 22:67, 2007; Kalyanpur M, Rao SS: Empowering low-income black families of handicapped
children. Am J Orthopsychiatry 61:523, 1991; Mihalic AP et al: Cultural competence teaching in U.S. pediatric
clerkships in 2006. Acad Med 82:558, 2007; Nehring WM: Cultural considerations for children with intellectual and developmental
disabilities. J Pediatr Nurs 22:93, 2007; Pachter LM: Ethnic and cultural influences on child health and
child services. In: Green M et al, eds. Ambulatory Pediatrics. 5th ed. Philadelphia, PA: WB Saunders; 105, 1999; Rogers
AB, Lawhorn E: Disaster preparedness: occupational and environmental health professionals’ response to Hurricanes
Katrina and Rita. AAOHN J 55:197, 2007; Sirbaugh PE et al: Caring for evacuated children housed in the Astrodome:
creation and implementation of a mobile pediatric emergency response team: regionalized caring for displaced children after
a disaster. Pediatrics 117:S428, 2006; Stein MT et al: Cultural and linguistic determinants in the diagnosis and management
of developmental delay in a four year old. J Dev Behav Pediatr 25:S43, 2004; Swienton RE: The National
Disaster Life Support Foundation: local preparedness, global response. J Trauma 62:S94, 2007; Thombs BD et al: Cultural
sensitivity in screening adults for a history of childhood abuse: evidence from a community sample. J Gen Intern Med
22:368, 2007; Thombs BD, Fauerback JA: A cross-cultural study of perceived stress among parents of children with
large burn injuries: a comment on Rose et al. J Burn Care Rehabil 26:444, 2005.
Educational Objectives
| The goals of this program are to improve cultural competence in caring for children with chronic disabilities and to improve
the care of pediatric patients in the event of a natural disaster. After hearing and assimilating this program, the clinician will
be better able to:
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| 1. Assess a family’s cultural background and level of acculturation with tact and sensitivity.
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| 2. Discuss special concerns of minority-status parents of children with disabilities.
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| 3. Describe Pachter’s model for cultural competence.
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| 4. Provide effective medical assistance in the aftermath of a natural disaster.
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| 5. Educate families about disaster preparedness.
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Faculty Disclosure
In adherence to ACCME Standards for Commercial Support, Audio-Digest requires all faculty members to disclose relevant
financial relationships within the past 12 months that might create any personal conflicts of interest. Any identified conflicts
were resolved to ensure that this educational activity promotes quality in health care and not a proprietary business or commercial
interest. For this program, the faculty reported nothing to disclose.
Acknowledgements
Dr Willies-Jacobo was recorded at Essential Topics in Pediatrics, presented May 18-20, 2007, in San Diego, CA, by
the University of California, San Diego, School of Medicine and the Department of Developmental Services; Dr.
Shook was recorded at the 40th Annual Advances and Controversies in Clinical Pediatrics, presented May 31 to June 2,
2007, in San Francisco, CA, by the Department of Pediatrics, University of California, San Francisco, School of
Medicine. The Audio-Digest Foundation thanks the speakers and the sponsors for their cooperation in the production
of this program.
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