A Case Study of the Infants and Children in the Infant Development Program of British Columbia, Cana

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A Case Study of the Infants and Children in the
Infant Development Program of British Columbia,
Canada Preliminary findings

• Mari Pighini, Ph.D. student, Faculty of
  Education, The University of British Columbia,
  Research Coordinator, The CHILD Project, Human
  Early Learning Partnership
• Hillel Goelman, Ph.D., Director, The CHILD
  Project, Senior Scholar, Human Early Learning
  Partnership, Professor, Faculty of Education, The
  University of British Columbia
• Research funded by
• Social Development Partnerships Program
• (Social Development Canada, Government of Canada)
• HELP Summer Seminar Series
• UBC Robson Square - July 5, 2007

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www.earlylearning.ubc.ca
www.idpofbc.ca
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Outline for Todays Presentation

• The Infant Development Program (IDP) of B.C.
• SDPP Project
• Rationale for Study
• Framing of Study
• Meaning and Importance of Study
• Objectives and Purpose of Study Research
  Questions
• Methods and Procedures
• Data Analysis
• Preliminary Findings
• Preliminary Conclusions and Follow-Up

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The Infant Development Program (IDP) of B.C.

• The Infant Development Program of British
  Columbia is a Provincial, home-based,
  family-centered program serving families with
  children ages 0 - 3 years identified as at-risk
  for --or diagnosed with-- developmental
  disabilities.
• Funded by the BC Ministry of Children and Family
  Development
• Sponsored by non-profit agencies throughout the
  Province (e.g. the Developmental Disabilities
  Association)
• There are currently 73 IDP Programs throughout
  the Province this number includes the Aboriginal
  Infant Development Programs
• Levels of services include home visitation
  monitoring, drop-in programs like language
  stimulation groups

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Rationale for Study

• Absence of systematic data gathering in early
  childhood development -- this creates a gap in
  ability to conduct longitudinal research for
  children who are developmentally at risk.
• The IDP Programs have collected invaluable
  medical, developmental and family information on
  more than 40 000 children in British Columbia
  since 1975 (Brynelsen, 2003).
• Information entered manually and stored in
  different files until recently
• Currently Key information is being entered under
  a Central Registry database (e.g. fields like
  date of intake, reason for referral)
• Academic and community partnership First time
  for IDP to participates in a study of this kind

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Collaborative partnership study guided and
inspired by

• Discussions with an IDP Program Coordinator IDP
  consultants, and with the IDP Provincial Advisor
• Informal discussions with a few parents Tell us
  about your experience with IDP used the IDP
  Post Service Evaluation Questionnaire
• These statements
• how help is provided matters as much, if not
  more, than what is done if positive consequences
  are to be realized(Karuza, Rabinowitz Zevon,
  1986), and
• in effective home-based, family-centred early
  intervention programs parents complement the
  intervention program instead of supplementing
  it (Mahoney et al, 1998)

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Objectives of Study
This qualitative, retrospective, longitudinal
case study looked into the lived experiences of
families with children with identified special
needs from their childs birth to their entry
into school.
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Framing the Study

• Literature with previous research on and/or
  descriptions of
• Children at-risk for developmental
  disabilities, children with developmental
  delays, and children who develop typically
  (Synnes et al, 1994 Walther, den Ouden,
  Verloove-Vanhorick, 2000)
• Early intervention programs effectiveness of
  early intervention (Mahoney, 2003 McCollum,
  2002)
• Special needs services and programs in British
  Columbia
• Family centred programs
• Therapy/Center focused programs
• (Brynelsen, Cummings Gonzales, 1993 Goelman et
  al, 2005)
• Academic-Community Collaboration/Partnerships
• (Goelman et al, 2005)

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Meaning and importance of study

• As a researcher coming from the professional
  practice
• As a researcher involved in academic/community
  collaborations and Partnership
• A longitudinal, qualitative study that informs a
  set of larger longitudinal, population-based,
  quantitative studies
• Unique perspectives through the voices of parents
  (different tradition in literature concerning
  special needs)

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Research Questions

• In what ways does early intervention impact on
• early child development, and
• on family parenting and family dynamics
• in families with a child at-risk for or diagnosed
  with developmental disabilities?
• More specifically,
• What are some of the unique experiences lived by
  at-risk children and their families who
  participate in the IDP,
• in terms of access to resources and programs
• in terms of their child current developmental
  needs, given present preschool/school demands,
  demands from other family members, financial/work
  pressures
• All of these linked to parenting a child at risk
  for or diagnosed with developmental delays?

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Methods and Procedures

• Naturalistic qualitative research design
  multiple case study approach (Creswell, 1998,
  2003)
• Purposefully targeted sample of 12 participants
  of four families (8 parents, four children)
• Two mail-outs to 28 IDP families
• Criteria for Inclusion for participant families
  comprised, among others
• Received IDP home visitation services for their
  children between the ages of zero to three years
• Expressed their wish to be re-contacted for
  research purposes during the discharge process (
  IDP Post Service Evaluation Questionnaire)
• Two-step ethics approval for participation in
  study

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Table 1Family Demographics
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Data collection

• Reviews of childrens files conducted at IDP
  Program site
• No personal names and/or identifiers included
• Three to four 45 minutes open ended individual
  interviews - digitally recorded
• Final individual session with participating
  parents revising information from reviewed files
• Two focus groups (before and after interviews)
• Only parents participated in interviews and focus
  groups
• Transcriptions combination of verbatim and
  summaries (Quinn-Patton, 1999)
• Post-data collection Member-check in sessions to
  ensure integrity of transcribed interviews

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Table 2Overview of Parent Participation in the
Focus Groups, Interview Sessions and File
Revision Sessions
FFather M Mother X no attendance/participati
on N/A no session
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Data Analysis

• Data sources File reviews digitally recorded
  and transcribed interviews, focus groups, memos
• Thematic and semantic content analysis to
  interpret the identified themes (Krippendorf,
  2004)
• Ensuring integrity of study, through rigorous
  three-step process of
• Inter-coded reliability with 90 agreement
  inter-coding disagreement was reported and
  alternatives presented
• Inter-coder audibility -- until themes,
  categories and subcategories established (Use of
  NVIVO software)
• Second set of member-checks with participants
  confirming their agreement with identified themes

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Preliminary Findings File Reviews Information
Fields

• Referral source
• Identified condition
• Medical history
• IDP intake
• Wait time
• Developmental status
• IDP home visitation (frequency)
• Therapy/ies
• Other Programs (accessed)

• Other Referrals
• Other Services (provided)
• Assessment
• Transition
• Discharge
• Excerpts Consultants comments
• Family feedback
• Artifacts

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Summary of Researchers Perceptions of Family
Profiles

• Memos added to information fields re
• Family profile (memo)
• Level of family involvement with program
• Responses to reviews
• Unique connections between families and
  consultants,
• e.g., Highlight comments, artifacts, letters

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Preliminary Findings File Reviews Across
families

• Age of referral to the IDP by 6 months
• Referral sources Pediatrician (2), Community
  Health Nurse (2)
• Wait-times before intake under four months
• Home visits monthly (IDP consultant, IDP
  physiotherapy consultant or both.
• Medical/developmental diagnosis by year 1
  developmental delays Moderate to severe level of
  intensity (All)
• Ongoing medical surveillance by a pediatrician
  (All)

• Additional complications or conditions -
  specialists, physio-, occupational,
  speech-language therapists (All)
• Other programs, e.g., Parent-Child Mother Goose
  (3)
• Designation special needs designation by age
  three (special funding for support) (All)
• Referrals to Therapy program 3-12 Program
  after their discharge (3)
• Transition into an inclusive preschool/daycare
  setting (age 3)
• Family childcare support (1)

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Preliminary FindingsTable 3 Most Frequently
(and Common) Coded Themes Categories in Focus
Group 1
Compare and contrast
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Table 4 Most Frequently Coded Interview
categories (1, 2, 3) --Across Interviews for
All Families, Listed by Themes
compare and contrast importance and
availability of Parents' perceptions
experiences
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Common Themes for All Families per Interview
Identified Categories

• Categories C
• Parents perceptions and experiences T3,4,5,6
• Continuity of services/ of relationship T 4
• Program model of services compare and contrast
  T 3,4,5
• Parents' values T3,5
• Awareness of special needs T2
• Changing needs T2
• Meeting child's needs T2
• Wait lists and wait time for funding T 5
• Family issues T 1,6
• Job related (financial) T1,6
• Health issues T 6
• Networking (lack of) T 1
• Information (importance of) T 2
• Parents fears and concerns T6

• Themes T
• Guidance and support received (Interview 4)
• Cycle of disability (Interviews 2,3, 4)
• Effectiveness of services (Interviews 1, 4)
• Role of Consultant/Therapist (Interviews 2, 3)
• Issues with funding (Interviews 2,3 )
• Stressors (Interview 4)

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Preliminary Conclusions emerging from coded
Themes and Categories (from Focus Group Question)

• Focus Group 1 In what ways is it meaningful to
  participate in this study?
• It is healthy and/or empowering to re-examine
  these issues
• It is important to share information with other
  parents in similar situations
• Community Health Nurse Key role in referral and
  initial support (as reported in IDP statistics)
• Lack of information about/insufficient or no
  access /lack of continuity of funding is a concern

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Preliminary Conclusions emerging from coded
Themes and Categories (from Interview Question)

• Interviews 1 Early experiences
• What are things you recalle.g. at the time your
  child was referred to the IDP?
• Early memories and experiences are difficult to
  recall time span, emotional
• Importance of referral to IDP the value of home
  visitation, within a family centred model
  comfort, flexible, safe the value of the
  information, resources consultant as an ally and
  an advocate for other referrals and services

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Preliminary Conclusions emerging from
emerging from coded Themes and Categories (by
Interview Question)

• Interviews 2 3 What were your experiences
  during each transition (to Preschool, to School )
• Changing needs As children grow and develop
  their disability remains, but the special needs
  change
• Awareness of Special Needs Child grows but does
  not become independent, parent MUST grow
  stronger, more, independent --an advocate
• Multiple Roles Perception he/she has to become
  Case Manageron top of their family dutiesas
  service providers move towards an agency-focused,
  therapy centred approach

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Preliminary Conclusions Emerging from emerging
from coded Themes and Categories (by Interview
Question)

• Interview 4 How did you and your family cope
  with transitions and change?
• Stressors were mainly job related and financial
  and juggling with family logistics
• Extended family/community network support was key
• Role of IDP consultant Central case manager
  providing help for access to programs and
  services empowering parents supporting parents
  to become advocates providing information/knowled
  ge translation to understand childs needs and to
  understand system

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Follow up Further interpretation needed to
understand most relevant issues for parents

• Looking at findings, common across interviews and
  themes
• Home based, family centred model appears to be
  preferred one in contrast to centre-based and
  exclusively therapy and child focused
• Relationship with consultant in home based
  services is a key feature for parents e.g.,
  Frequently coded terms (quotes) trust,
  feeling comfortable, and friendship,
  wonderful
• Inclusion and participation of siblings in
  home-visits and therapies are highly valued.
  Example of quote siblings are teachers too

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Follow up Further interpretation needed to
understand most relevant issues for parents

• Transitions from IDP to other centre-based
  programs appear to be hard on parents
• e.g. (quote) Feeling you have been dropped and
  Wanting to be hand held until the school
  years
• Parents suggest a chart showing how system and
  services work
• Hardest transition from preschool to school
• Lack of centralized case management shortage of
  resources insufficient contact with
  teachers/administrators
• Key contact person School Support Worker

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Follow up It appears from these findings that
parents are asking for

• A continuum of centralized early intervention
  services from birth to school entrance, and
  continuing remedial and therapy services through
  the school years
• The need to build a seamless system of inclusive
  early intervention programs from birth to school
  entry

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Follow up Expand case study participants in
multiple case study

• Purpose To present a more comprehensive
  portrayal of the experiences of families
  receiving early intervention support in B.C.
• Representing families with children in the grey
  area contact and recruit two additional
  families
• Children would have been identified as at-risk
  for developmental delays shortly after birth
  (e.g. premature, very low-birth weight (lt 1500
  gr.)
• Would have been followed by the IDP of BC in the
  monitoring level of services
• Discharged by (usually before) age 3 Child
  caught up to norm
• Gilliam, Meisels Mayes (2005) The need for
  screening and surveillance for children who are
  at-risk for developmental disabilities, who do
  not have identifiable special needs by age 3 but
  who exhibit indicators of specific learning,
  behavioural, social-emotional, motor difficulties
  between ages 3 5 and who required some kind of
  special assistance in the Elementary years.

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Thank you!Mari.Pighini_at_ubc.caa
nd Hillel.Goelman_at_ubc.ca
Questions? Comments? Feedback?
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References

• Brynelsen, D., Cummings, H. Gonzalez, V. (1993)
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