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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?

www.ndss.org

  • 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

www.ndss.org

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)

  • • Following meetings:

*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

Measurements

Cont. Measurements

Family based Intervention (IV)

Quality of Life (DV)

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.

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