WORKING WITH FAMILIES WHEN CHILDREN HAVE
SPECIAL HEALTH NEEDS:
EXAMPLES FROM THE SOMALI COMMUNITY IN
MINNESOTA
Asli Ashkir, MPH,RN,PHN
Children & Youth with Special Health Needs
Minnesota Department of Health
Objectives
1. Provide an overview of best practices in Children and Youth with
Special Health Needs (CYSHN)
2. Gain insights into Somali cultural barriers associated with accessing
CYSHN services
3. Share available resources for families of children with special health
needs in MN
Children with special
health needs are:
those children who have or are at increased risk for a chronic physical,
developmental, behavioral, or emotional condition and who also require
health and related services of a type or amount beyond that required by
children generally.
Maternal Child Health Bureau
Number of CYSHCN in Minnesota
(14.3%)
Increased from 2001 (12.4%)
National Survey of Children with Special Health Care Needs 2009/10
Overarching CYSHN Themes
FamilyCentered
Care
Data Driven
DecisionMaking
Proactive &
Preventive
Investment
Culturally
Responsive
Best
Practice
National Best Practices:
CYSHN
1.
2.
3.
4.
5.
6.
7.
Family Centered Care
Community Based Care
Coordinated Care
Culturally Competent
Medical Home
Family Professional Collaboration
Health care Transition for Youth with
Special Health Care Needs:
Somalia
The Somali Civil War
• Began in 1990
• Ongoing for 25 years
• Est. 500,000 deaths
• Est. >1 million refugees
• Majority of Somalis live as refugees in neighboring
countries primarily in Kenya .
• Most are in Dadaab Refugee Camp (One of the Largest
refugee camps in the world)
• 30%-50% experienced trauma
• Witnessed death in family
• Rape
• Torture
• Forced migration
Many Somalis in Minnesota Lived in Dadaab
Refugee Camp for 5-20 years Prior to Arrival
The Somali Culture and Disability
Common Beliefs about Causes of
Illnesses Including Disabilities
• Allah’s (God’s) will: prevention??
• Suffering leads forgiveness of sins
• Germs in air, food, or drinks
• Tuberculosis, cholera, cold/flu
• Exposure to strong winds/spirits
• Polio, bronchitis/pneumonia, pleural effusion
• Evil eye: children are more vulnerable to evil eye
• Witchcraft or possession:
• Mental illness
Disability Within the Somali Context
• Disability translates to physical problems:
- Unable to walk, being blind, being deaf etc.
• Developmental disabilities are new to Somalis :
Autism, attention deficit hyperactivity disorder among others
• Many Somalis view disability either as a blessing from Allah -
appreciate whatever Allah offers them.
• Punishment from Allah- results from a sin committed by a parent
such as adultery etc.
• Protection for the community-Allah makes a man purposely disabled
(blind, deaf etc.) so that he/she won’t or couldn’t harm the community.
Mental Health
• In the Somali language, mental disorder means “crazy”:
• A Somali is either sane or insane (crazy): no Somali words for
depression, anxiety etc.
• The stigma associated with mental health including developmental
disabilities prevent many Somalis from seeking care.
Barriers to Accessing CYSHN
Services
• Many Somalis are not familiar with services available to disabled
children, rare services back home.
• Some disabilities are taboo: Autism and other intellectual disabilities;
families might be reluctant to speak about these issues openly to care
providers
• Language barrier: unable to speak English & not trusting interpreters
• Difficulty navigating a complex healthcare system
Working with Somali Families of
CYSHN
• Strengthen Provider/parent relationships
-Build trust with the parents: You and your time
• Personalize the encounter – use the child’s name
-Speak at the parent, not the interpreter
-Learn to say hello in Somali – “Iska waran”
-Ask them something personal before “getting down to business”
• Parents trust the provider for factual medical information
-Provide advice with confidence – options are confusing
• Predicting future consequences is not meaningful – the future
belongs to Allah
Family Decisions:
• If a mother is reluctant to care, invite the father to the
discussion.
• Interpreters:
• Confidentiality
• Use same interpreter if possible
Scheduling appointments:
-Avoid appointments at early AM & at prayer times
-Interpreter to do the reminder calls
http://www.health.state.mn.us/cyshn/
Somali Culture: General
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Males and females have defined roles
Marriage and children are universal
Somalis are oral
Elders have strong say in family decisions
Males are head of the family
Same sex providers and interpreters are preferred
Hand shaking is preferred between same sex.
• Asli Ashkir
Senior RN Consultant
CYSHN Section
651.201.3653
[email protected]
Questions??