Parental Satisfaction: Indicator for servicing of young children with autism

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Parental Satisfaction Indicator for servicing of
young children with autism?

• Dr. Cory Shulman
• The Hebrew University of Jerusalem
• International Society for Child Indicators-
• Inaugural Conference

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Indicators of Child Well-Being

• Indicators of child well-being
• Method for assessing the impact of welfare
  reform.
• Evaluating the effect of social policy on
  children and their families.
• Used by federal, state and local governments.
• Used by nonprofit organizations.

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Indicators of Child Well-Being

• Indicators of child well-being
• Assess health status
• Assess cognitive functioning
• Assess social and emotional status
• Assess educational opportunity
• Assess economic and food security
• Assess family/neighborhood environments

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Indicators of Child Well-Being

• Statistical indicators are useful
• Describing demographic information
• Delineating important characteristics
• Monitoring the impact of programs
• Holding agencies accountable for
• a. progress towards objectives
• b. attaining identified program outcomes
• c. establishing and tracking indicators can
• be used as outcome measures.

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Indicators of Child Well-Being for special needs

• Diagnosis
• Initial intervention and treatment
• Educational services
• Formal support
• Informal support
• (Shulman, 2000)

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Stress reduction for parents

• Families of children with a disability experience
  stress.
• Factors have been identified which mediate
  stress
• 1. social support
• 2. spousal support
• 3. family support (e.g. grandparents)
• (Johnston, 2003 Snowdon, 1994 Trute, 2003
  White Hastings, 2004)

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Stress reduction for parents

• Factors have been identified which mediate
  stress
• 4. informal support including
• a. neighbors
• b. volunteers
• c. religious groups
• (Trivette and Dunst, 1992)

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Statutory services in stress reduction

• Studied less and results less clear.
• Families do not always receive useful support
  from statutory services.
• Families report that servicing is not necessarily
  tuned to their needs or to the needs of their
  child.
• (Florian Krulik, 1991 Sloper Turner, 1992)

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Statutory services in stress reduction

• Parents expect help and support from the service
  providers.
• Parents consider professional support important.
• Specific help and support have been identified by
  listening to the voices of the parents of
  special needs children.

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Professional support

• Providing information
• Training parents
• Employing problem solving strategies
• Relieving some of the daily demands
• Linkage among families
• Linkage between families
• Linkage of families to services
• (Taanila,2002)

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Indicators

• Professional support can contribute if it is
  appropriate.
• Therefore, it is of the utmost importance to tune
  professional support to the needs of the families
  of a child with a disability.

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Indicators

• First step
• Evaluation of service users (families of children
  with special needs)
• Exploration of their needs.
• Their views can be used to inform policymakers
  and professionals toward better services and
  support systems.

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Indicators

• Measurement
• Significance of parental satisfaction as an
  indicator for the effectiveness of intervention
  programs.
• Use of parental satisfaction as an outcome
  measure in intervention studies.
• (Boyd Corley, 2001 Hancock Kaiser, 2002
  Mesibov, 1997)

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Indicators-Present study

• Previous studies focused on evaluation of
  particular interventions.
• Purposes of present study is
• Evaluate parental satisfaction in general
  regarding
• accessibility of services
• quality of services
• support provided by services.

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Population

• Parents of children with autism spectrum disorder
  (ASD).
• Autism spectrum disorders include
• Autism
• Asperger syndrome
• Rett syndrome
• Childhood disintegrative disorder
• Pervasive developmental disorder- Not otherwise
  specified.

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Autism (DSM-IV APA, 1994)

• Impairment in social interaction (at least two of
  the following
• Impairment in the use of nonverbal behaviors (eye
  contact, posturing).
• Developmentally inappropriate peer relationships.
• Failure in shared enjoyment.
• Poor social/emotional reciprocity.

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Autism (DSM-IV APA, 1994)

• Impairment in communication (at least one of the
  following
• Delay in development of speech.
• Significant difficulty in initiating and/or
  maintaining conversations.
• Idiosyncratic or stereotyped language usage.
• Lack of social imitation or make believe play
  appropriate to developmental level.

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Autism (DSM-IV APA, 1994)

• Repetitive, restricted, stereotyped interests,
  activities and behaviors (at least one of the
  following)
• Preoccupied with restricted interests (abnormal
  in focus or intensity).
• Inflexible adherence to nonfunctional routines or
  rituals.
• Repetitive motor movements.
• Persistent preoccupation with parts.

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Nature of ASD

• Need for structure
• Clearness
• Continuity
• Predictability
• Research indicates that ASD-specific
  interventions show best outcomes.
• (Panerai, 2002)

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Nature of ASD

• Appropriate intervention requires
• Specialist knowledge
• Special training
• Distribution of resources
• (Renty Roeyers, 2005 Sperry, 1999)

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Shortcomings

• Early identification
• Information about available service provision
• Specialist knowledge about ASD
• Availability of appropriate support.

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Early identification

• Time which elapsed until firm ASD diagnosis was
  established was considerable.
• Effort spent getting the diagnosis was
  exhausting.
• Professionals did not use established diagnostic
  protocols.
• (Shulman, 2000 Young, 2003)

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Early identification

• Parents report concern when their children are
  around 18 months old.
• Seek professional help when their children are
  around 2 years old.
• Average age of diagnosis is still reported as 3 ½
  to 5 years of age.
• Symptoms are now being recognized in infancy.
• Prospective studies of at-risk siblings.

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Early identification

• Professionals often respond to parental concerns
  dismissively.
• Brogan and Knussen (2003) demonstrated that the
  length of time parents had to wait until
  receiving a final diagnosis was related to
  parental satisfaction with the diagnostic
  process.

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Early identification

• Other factors related to parental satisfaction
• Age of diagnosis
• Quality of information during disclosure
• Clarity or certainty of diagnosis.
• (Howlin Moore, 1997 Mandell, 2002, NIASA,
  2003)

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What we know

• Research claims that parents should be given
  direct support in the early years, concomitant
  with diagnosis.
• Development of appropriate skills and strategies
  which have been shown to affect quality of life
  of the child.
• (Howlin, 1997)

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What we know

• Parents are uninformed about service provisions
  and how to access them
• Education
• Social services
• Leisure services
• Health services
• (Nesbitt, 2000 Whitaker, 2002)

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What we know

• Parents of preschooler with autism expressed a
  need for more information about service options.
• National Plan for Autism in Children recommend
• families with children with ASD should have a
  key worker who supports the family.
• (NIASA, 2003)

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What we know

• Knowledge of the features of ASD has been found
  to be crucial in establishing and maintaining
  good practice.
• The quality of life of an individual with ASD may
  largely depend on the manner in which we adapt
  the environment and our expectations.

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Present study

• Israeli diagnostic system
• Israeli educational system
• Israeli system of non-profit organizations
• Israeli system of financial support

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Present study

• Participants (all parents of preschoolers with
  ASD)
• The sample was drawn from three sources
• Advertisement in the journal of ALUT (Israel
  Autism Society).
• Participants in other research projects were
  asked if they would take part.
• Invitations left at the Support Center for
  families with children with ASD.

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Present study

• Measures
• Interview based on Randall and Parker (1998)
  questionnaire.
• Demographic information about children and
  parents.
• Family characteristics.

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Present study

• Interview included
• Information about diagnosis
• Information about educational servicing.
• Information about supplementary/ additional
  servicing.
• Information about accessibility of ASD specific
  services.
• Information about received support.

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Present study

• Parents were requested to describe the service
  and then rate their satisfaction from the service
  and the professional who provided the service. If
  there was a discrepancy the parents were asked to
  explain.
• Parents were also asked to rate autism
  specificity of the service.

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Present study

• Results and Conclusions
• Diagnostic Process
• Three groups emerged-children first diagnosed (1)
  under the age of three (2) age three or four
  (3) at the age of 5 or above.

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Results and ConclusionsDiagnosis
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Results and ConclusionsDiagnosis
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Results and ConclusionsDiagnosis
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Results and ConclusionsDiagnosis

• The relationship between diagnostic process, and
  the age of first consultation, number of
  consultations before diagnosis was obtained, age
  of diagnosis, amount of information received and
  perceived professionalism in the area of ASD was
  analyzed.

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Results and ConclusionsDiagnosis

• Overall, higher rates of satisfaction were
  related to ,lower age of diagnosis, more
  information and perceived specificity of
  professionalism in the area of ASD.
• Furthermore, the higher the age at diagnosis, the
  higher the number of consultations before
  obtaining diagnosis.

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Results and ConclusionsDiagnosis

• The younger the child was the more specific the
  intervention was (plt.05), which was surprising as
  school servicing begins at age three in Israel.
• Satisfaction with the intervention chosen was
  significantly correlated with the specificity
  regarding ASD (plt001).

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Results and ConclusionsDiagnosis

• More than half of the parents reported that their
  child received autism-specific support from one
  or more service providers (e.g. home-based
  treatment)
• Of those who were in a non ASD-specific program,
  higher degrees of satisfaction were reported from
  integration programs.

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Results and Conclusions

• Satisfaction with support and education depended
  on
• Communication between the program and the
  parents, specifically about daily functioning.
• a. notebook
• b. evening meetings
• c. short chats

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Results and Conclusions

• Satisfaction with support and education depended
  on
• The information exchange must be reciprocal.
• It is important because it is difficult fr the
  child with ASD to report.
• Communication is seen as the base for cooperation
  and continuity.

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Results and Conclusions

• The information exchange must be reciprocal.
• Professionals must listen to the parents.
• They must take the parents seriously as partners.
• This is the base for parental involvement-thinking
  and working together for the childs benefit.

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Results and Conclusions

• Parental perceptions of the professional
• Level of commitment
• Level of enthusiasm
• Level of motivation
• Continuity of staffing
• Professional knowledge of ASD

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Results and Conclusions

• Parental perceptions of the professional
• 6. Viewing the child as an individual and
  getting to know him/her as such.
• 7. Individualizing the activities is also
  important.
• 8. Creating an Individualized Educational
  Program was seen as a professional necessity.

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Results and Conclusions

• ASD-specific knowledge and training
• Sharing knowledge about ASD.
• Sharing knowledge about intervention options.
• Continuing education and knowing up-to-date
  information and research findings.

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Thoughts about child indicators

• Assuming that parents who receive
• support report a higher degree of
• satisfaction about the servicing their
• children receive and are more involved
• in making decisions which affect their
• child, an aim of this research was to
• identify child indicators affecting the
• well-being of both the child with ASD
• and his parents.

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Thoughts about child indicators

• Early diagnosis is problematic, according to
  parental report1. relatively late age of
  diagnosis
• Parental satisfaction is related to age of
  diagnosis.
• 2. delay in receiving the diagnosis
• On the average there was a delay of more than
  one year between the first consultation and the
  receipt of diagnosis.

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Thoughts about child indicators

• Early diagnosis is problematic, according to
  parental reportThis delay is problematic as
• 1. Autism can be diagnosed as early as 2.
• 2. Early intervention has resulted in better
  outcome.
• Thus, it is important that professionals are more
  informed and act more speedily.

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Thoughts about child indicators

• Accessibility to services was reported as
• problematic. Despite accessibility problems,
• most parents were satisfied with educational
• services, particularly those which were ASD
• specific. The parents who reported higher
• degrees of satisfaction were those who knew
• about ASD and got a diagnosis quickly, at a
• young age and was seen by professionals
• knowledgeable about ASD.

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Thoughts about child indicators

• Parental satisfaction was associated with
• Parental involvement in formal support
• Knowledge of available services
• Time between first consultation and final
  diagnosis.

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Thoughts about child indicators

• Although there are many limitations in this
  project, it is important to note that parents of
  children with ASD attach importance to issues
  identified as being characteristic of best
  practices in general (e.g., close cooperation
  between parents and professionals), and
  ASD-specific knowledge.

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Thanks

• Analia Rabinovich
• Ayala Geldman
• Shachaf Salomon
• Staff of ALUT and Bet Loren
• All the families who participated in this
  research!