Early Intervention for Children with Down syndrome
By: Todd, Shayna, Ashley
SW 440
Hypothesis
What is Down syndrome (Ds)?
When engaging in family-based early intervention programs (IV), children with Down syndrome are more likely to have a better quality of life (DV)
- 23 pairs of chromosomes, Down syndrome has a full or partial extra copy of chromosome 21
- Additional genetic material alters the course of development
- 1 in every 691 babies in US (most common genetic condition)
- ~400,000 Americans and 6,000 babies with Ds are born each year
- 3 types of Ds:
- Trisomy 21 - error in cell division called non-disjunction and results in embryo with 3 copies of chromosome 21 instead of the usual 2.
- Mosaicism - occurs when nondisjunction of chromosome 21 takes place in one (but not all) of the initial cell divisions after fertilization
- Translocation - part of chromosome 21 breaks off during cell division and attaches to another chromosome
Research Question
Characteristics of Down syndrome
Is there any relationship between family-based early intervention programs and quality of life among children with Down syndrome?
- Cognitive delays from very mild to severe
- Common physical traits:
- low muscle tone
- small structure
- upward slant to eyes
- single deep crease across the center of palm
- An increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, child leukemia, and thyroid conditions
- Occurs in people of all races and economic levels
Methods
Why is it important for Social Workers?
Design
How Will Our Research Help?
Gaps In Previous Literature
- Families are at the core of influencing their child’s life
- Parents played a vital role as a parent-researcher
- Individuals with Ds are becoming increasingly integrated into society and community organizations
- Children with Ds possess varying degrees of cognitive delays from mild to severe
- • Experimental-Qualitative Study
- • Longitudinal: 6 month span
- • Weekly 2 hour Meetings (Tuesday/Thursdays)
1. Tuesday-w/parents, 2 Social workers, & lead professional for Shriners Hospitals family Centered Care program
*Topics: set of informal open-ended questions, training to implement symbolic play at home, open discussion/support questions
2. Thursdays-w/parent’s & children
Social Interaction in playroom @ Shriners
•*Available support-2 social workers & Lead FCC professional
- Challenge different approaches to family-based early intervention
- Enhanced involvement of parents
- Better definition of roles for parents and professionals
- Difficulty in creating early intervention models due to language issues and other barriers in children with Down syndrome
- Parents and Professionals lack of understanding: more to learn about Down syndrome
- Professionals at forefront
- Lack of differential diagnosis for children with Down syndrome
Conclusion
Sampling
Parent's with Down syndrome: Positive example
- Having parent's (or the primary caretaker) take the lead in the early intervention process would be ideal.
- Parent's and children will be empowered to learn/grow together, with the professionals being available for help as needed.
- Creating a support system for parents of children with Down syndrome with other parents and professionals is essential.
- Fresh insight for future interventions is needed.
Strengths & Weaknesses
Data Collection
- (Non-probability) Convenient Sampling- families involved previously identified as seeking alternative services for children w/DS•
- Recruitment: participants in Shriners FCC progam (Honolulu, HI)
- identified through lead professional of Shriners FCC program seeking alternative interventions
- Out of the group of families, 8 families will be chosen who meet the requirements
- Open to mixed-race families
• Requirements
1. Low-income households
2. Children ages 6-10 yrs old
3. Members of Shriners Hospitals FCC program (residing on Oahu)
- •Gather data through monthly surveys
- Weekly group interviews- recorded & transcribed
- • Initial meeting: Open discussion & Symbolic Play Training
-areas of concern would you like to cover? (Child’s mental and social progress)
*Group interview w/4 Questions (correlated to weekly parent log)
- Followed by continued Parent Training on Symbolic Play Techniques
- Weekly Family Meetings- Photographed
- Home-based Intervention- Weekly logs w/narrative descriptions
Strengths
- • Depths in understanding
- • Flexibility
- • Family empowerment- parents & children
- • Strengths based qualitative
Weaknesses
- • Small group of participants (8 families of children w/DS)
- • Only Low-income households
- • Oahu residents affiliated w/Shriners FCC program
- • limited age group- ages 6-10 yrs old
- no control group for comparison
Family based Intervention (IV)
Parents role as the experts
- Reflections of parents weekly logs
- comparisons in weekly parent meetings
- narrative descriptions of first hand
observations
Opperationalization: the satisfaction of an individual’s values, goals and needs through the actualisation of their abilities or lifestyle” (Emerson, 1985, p. 282). national wellness institute
Conceptualization: The well being of children based off their weekly/monthly progress of strengths and growth through parent reflections.