Parental Satisfaction: Indicator for servicing of young children with autism?

Parental Satisfaction: Parental Satisfaction: Indicator for servicing Indicator for servicing of young children with of young children with autism?autism?

Dr. Cory ShulmanDr. Cory ShulmanThe Hebrew University of The Hebrew University of JerusalemJerusalem

International Society for Child International Society for Child Indicators-Indicators-

Inaugural ConferenceInaugural Conference

Indicators of Child Indicators of Child Well-BeingWell-Being Indicators of child well-being: Indicators of child well-being:

1.1. Method for assessing the impact of Method for assessing the impact of welfare reform.welfare reform.

2.2. Evaluating the effect of social policy Evaluating the effect of social policy on children and their families. on children and their families.

3.3. Used by federal, state and local Used by federal, state and local governments. governments.

4.4. Used by nonprofit organizations. Used by nonprofit organizations.

Indicators of Child Indicators of Child Well-BeingWell-Being Indicators of child well-being: Indicators of child well-being:

1.1. Assess health status Assess health status

2.2. Assess cognitive functioning Assess cognitive functioning

3.3. Assess social and emotional statusAssess social and emotional status

4.4. Assess educational opportunityAssess educational opportunity

5.5. Assess economic and food securityAssess economic and food security

6.6. Assess family/neighborhood Assess family/neighborhood environments environments

Indicators of Child Indicators of Child Well-BeingWell-Being Statistical indicators are useful:Statistical indicators are useful:1.1. Describing demographic informationDescribing demographic information2.2. Delineating important characteristicsDelineating important characteristics3.3. Monitoring the impact of programs Monitoring the impact of programs 4.4. Holding agencies accountable for:Holding agencies accountable for:

a. progress towards objectives a. progress towards objectives b. attaining identified program outcomesb. attaining identified program outcomesc. establishing and tracking indicators c. establishing and tracking indicators can can

be used as outcome measures.be used as outcome measures.

Indicators of Child Indicators of Child Well-Being – for Well-Being – for special needsspecial needs DiagnosisDiagnosis Initial intervention and treatment Initial intervention and treatment

Educational servicesEducational services Formal supportFormal support Informal support Informal support

(Shulman, 2000)(Shulman, 2000)

Stress reduction for Stress reduction for parentsparents Families of children with a disability Families of children with a disability

experience stress.experience stress. Factors have been identified which Factors have been identified which

mediate stress:mediate stress:1. social support1. social support2. spousal support2. spousal support3. family support (e.g. grandparents)3. family support (e.g. grandparents)

(Johnston, 2003; Snowdon, 1994; Trute, 2003; White & (Johnston, 2003; Snowdon, 1994; Trute, 2003; White & Hastings, 2004)Hastings, 2004)

Stress reduction for Stress reduction for parentsparents Factors have been identified Factors have been identified

which mediate stress:which mediate stress:

4. informal support including4. informal support including

a. neighborsa. neighbors

b. volunteersb. volunteers

c. religious groupsc. religious groups(Trivette and Dunst, 1992)(Trivette and Dunst, 1992)

Statutory services in Statutory services in stress reductionstress reduction Studied less and results less clear.Studied less and results less clear. Families do not always receive Families do not always receive

useful support from statutory useful support from statutory services.services.

Families report that servicing is not Families report that servicing is not necessarily “tuned” to their needs necessarily “tuned” to their needs or to the needs of their child.or to the needs of their child.

(Florian & Krulik, 1991; Sloper & Turner, 1992)(Florian & Krulik, 1991; Sloper & Turner, 1992)

Statutory services in Statutory services in stress reductionstress reduction

Parents expect help and support Parents expect help and support from the service providers.from the service providers.

Parents consider professional Parents consider professional support important.support important.

Specific help and support have Specific help and support have been identified by “listening” to been identified by “listening” to the voices of the parents of the voices of the parents of special needs children. special needs children.

Professional supportProfessional support

Providing informationProviding information Training parentsTraining parents Employing problem solving strategiesEmploying problem solving strategies Relieving some of the daily demandsRelieving some of the daily demands Linkage among familiesLinkage among families Linkage between familiesLinkage between families Linkage of families to servicesLinkage of families to services

(Taanila,2002)(Taanila,2002)

IndicatorsIndicators

Professional support can Professional support can contribute if it is appropriate.contribute if it is appropriate.

Therefore, it is of the utmost Therefore, it is of the utmost importance to tune professional importance to tune professional support to the needs of the support to the needs of the families of a child with a families of a child with a disability.disability.


First step:First step:1.1. Evaluation of service users (families of Evaluation of service users (families of

children with special needs)children with special needs)2.2. Exploration of their needs.Exploration of their needs.

Their views can be used to Their views can be used to inform policymakers and inform policymakers and professionals toward better professionals toward better services and support systems. services and support systems.


Measurement:Measurement:

1.1. Significance of parental satisfaction Significance of parental satisfaction as an indicator for the effectiveness as an indicator for the effectiveness of intervention programs.of intervention programs.

2.2. Use of parental satisfaction as an Use of parental satisfaction as an outcome measure in intervention outcome measure in intervention studies. studies. (Boyd & Corley, 2001; Hancock & Kaiser, 2002; Mesibov, (Boyd & Corley, 2001; Hancock & Kaiser, 2002; Mesibov,

1997)1997)

Indicators-Present Indicators-Present studystudy Previous studies focused on Previous studies focused on

evaluation of particular evaluation of particular interventions.interventions.

Purposes of present study isPurposes of present study isEvaluate parental satisfaction in Evaluate parental satisfaction in general regarding:general regarding:

1.1. accessibility of services accessibility of services 2.2. quality of services quality of services 3.3. support provided by services.support provided by services.

PopulationPopulation

Parents of children with autism Parents of children with autism spectrum disorder (ASD).spectrum disorder (ASD).

Autism spectrum disorders include:Autism spectrum disorders include:1.1. AutismAutism

2.2. Asperger syndromeAsperger syndrome

3.3. Rett syndromeRett syndrome

4.4. Childhood disintegrative disorderChildhood disintegrative disorder

5.5. Pervasive developmental disorder- Not Pervasive developmental disorder- Not otherwise specified.otherwise specified.

Autism Autism (DSM-IV: APA, (DSM-IV: APA, 1994)1994)

Impairment in social interaction (at Impairment in social interaction (at least two of the following:least two of the following:

1.1. Impairment in the use of nonverbal Impairment in the use of nonverbal behaviors (eye contact, posturing).behaviors (eye contact, posturing).

2.2. Developmentally inappropriate peer Developmentally inappropriate peer relationships.relationships.

3.3. Failure in shared enjoyment.Failure in shared enjoyment.4.4. Poor social/emotional reciprocity. Poor social/emotional reciprocity.


Impairment in communication (at Impairment in communication (at least one of the following:least one of the following:

1.1. Delay in development of speech.Delay in development of speech.2.2. Significant difficulty in initiating Significant difficulty in initiating

and/or maintaining conversations.and/or maintaining conversations.3.3. Idiosyncratic or stereotyped Idiosyncratic or stereotyped

language usage.language usage.4.4. Lack of social imitation or make Lack of social imitation or make

believe play appropriate to believe play appropriate to developmental level. developmental level.


Repetitive, restricted, stereotyped Repetitive, restricted, stereotyped interests, activities and behaviors (at interests, activities and behaviors (at least one of the following):least one of the following):

1.1. Preoccupied with restricted interests Preoccupied with restricted interests (abnormal in focus or intensity).(abnormal in focus or intensity).

2.2. Inflexible adherence to nonfunctional Inflexible adherence to nonfunctional routines or rituals.routines or rituals.

3.3. Repetitive motor movements.Repetitive motor movements.4.4. Persistent preoccupation with parts.Persistent preoccupation with parts.

Nature of ASDNature of ASD

Need for structureNeed for structure ClearnessClearness ContinuityContinuity PredictabilityPredictability

Research indicates that ASD-specific Research indicates that ASD-specific interventions show best outcomes.interventions show best outcomes.

(Panerai, 2002)(Panerai, 2002)

Nature of ASDNature of ASD

Appropriate intervention Appropriate intervention requires:requires:

1.1. Specialist knowledgeSpecialist knowledge

2.2. Special trainingSpecial training

3.3. Distribution of resourcesDistribution of resources

(Renty & Roeyers, 2005; Sperry, 1999)(Renty & Roeyers, 2005; Sperry, 1999)

Shortcomings:Shortcomings:

Early identificationEarly identification Information about available Information about available

service provisionservice provision Specialist knowledge about ASDSpecialist knowledge about ASD Availability of appropriate Availability of appropriate

support.support.

Early identificationEarly identification

Time which elapsed until firm ASD Time which elapsed until firm ASD diagnosis was established was diagnosis was established was considerable. considerable.

Effort spent getting the diagnosis Effort spent getting the diagnosis was exhausting.was exhausting.

Professionals did not use Professionals did not use established diagnostic protocols.established diagnostic protocols.

(Shulman, 2000; Young, 2003)(Shulman, 2000; Young, 2003)


Parents report concern when their Parents report concern when their children are around 18 months old.children are around 18 months old.

Seek professional help when their Seek professional help when their children are around 2 years old.children are around 2 years old.

Average age of diagnosis is still Average age of diagnosis is still reported as 3 ½ to 5 years of age.reported as 3 ½ to 5 years of age.– Symptoms are now being recognized in Symptoms are now being recognized in

infancy.infancy.– Prospective studies of at-risk siblings. Prospective studies of at-risk siblings.


Professionals often respond to Professionals often respond to parental concerns dismissively.parental concerns dismissively.

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


Other factors related to parental Other factors related to parental satisfaction:satisfaction:

1.1. Age of diagnosisAge of diagnosis

2.2. Quality of information during Quality of information during disclosuredisclosure

3.3. Clarity or certainty of diagnosis.Clarity or certainty of diagnosis.

(Howlin & Moore, 1997; Mandell, 2002, NIASA, 2003)(Howlin & Moore, 1997; Mandell, 2002, NIASA, 2003)

What we know …What we know …

Research claims that parents should Research claims that parents should be given direct support in the early be given direct support in the early years, concomitant with diagnosis.years, concomitant with diagnosis.

Development of appropriate skills Development of appropriate skills and strategies which have been and strategies which have been shown to affect quality of life of the shown to affect quality of life of the child. child.

(Howlin, 1997)(Howlin, 1997)


Parents are uninformed about Parents are uninformed about service provisions and how to service provisions and how to access them:access them:

1.1. EducationEducation2.2. Social servicesSocial services3.3. Leisure servicesLeisure services4.4. Health servicesHealth services

(Nesbitt, 2000; Whitaker, 2002)(Nesbitt, 2000; Whitaker, 2002)


Parents of preschooler with autism Parents of preschooler with autism expressed a need for more expressed a need for more information about service optionsinformation about service options..

National Plan for Autism in National Plan for Autism in Children recommend:Children recommend:families with children with ASD families with children with ASD should have a key worker who should have a key worker who supports the family. supports the family.

(NIASA, 2003)(NIASA, 2003)


Knowledge of the features of ASD Knowledge of the features of ASD has been found to be crucial in has been found to be crucial in establishing and maintaining good establishing and maintaining good practice. practice.

The quality of life of an individual The quality of life of an individual with ASD may largely depend on with ASD may largely depend on the manner in which we adapt the the manner in which we adapt the environment and our expectations.environment and our expectations.

Present studyPresent study

Israeli diagnostic systemIsraeli diagnostic system Israeli educational systemIsraeli educational system Israeli system of non-profit Israeli system of non-profit

organizationsorganizations Israeli system of financial supportIsraeli system of financial support


Participants (all parents of Participants (all parents of preschoolers with ASD):preschoolers with ASD):

The sample was drawn from three The sample was drawn from three sources:sources:

1.1. Advertisement in the journal of ALUT Advertisement in the journal of ALUT (Israel Autism Society).(Israel Autism Society).

2.2. Participants in other research projects Participants in other research projects were asked if they would take part.were asked if they would take part.

3.3. Invitations left at the Support Center Invitations left at the Support Center for families with children with ASD. for families with children with ASD.


Measures:Measures:1.1. Interview based on Randall and Interview based on Randall and

Parker (1998) questionnaire.Parker (1998) questionnaire.

2.2. Demographic information about Demographic information about children and parents.children and parents.

3.3. Family characteristics.Family characteristics.


Interview included:Interview included:1.1. Information about diagnosisInformation about diagnosis

2.2. Information about educational Information about educational servicing.servicing.

3.3. Information about supplementary/ Information about supplementary/ additional servicing.additional servicing.

4.4. Information about accessibility of ASD Information about accessibility of ASD specific services.specific services.

5.5. Information about received support.Information about received support.


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

Parents were also asked to rate Parents were also asked to rate autism specificity of the service.autism specificity of the service.


Results and Conclusions:Results and Conclusions:

Diagnostic Process:Diagnostic Process:

Three groups emerged-children Three groups emerged-children first diagnosed (1) under the age first diagnosed (1) under the age of three; (2) age three or four; of three; (2) age three or four; (3) at the age of 5 or above. (3) at the age of 5 or above.

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosisDiagnostic labelDiagnostic label < 3< 3 3 - 43 - 4 5 +5 +

AutismAutism 28 %28 % 43 %43 % 52%52%

Asperger Asperger syndromesyndrome

00 2 %2 % 13%13%

PDDPDD 58 %58 % 46 %46 % 32%32%

Autistic behaviorAutistic behavior 10 %10 % 9 %9 % 3%3%

Autistic-relatedAutistic-related 4 %4 % 0 %0 % 0%0%

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosisProfessional Professional CenterCenter

< 3< 3 3 - 43 - 4 5 +5 +

PediatricianPediatrician 9%9% 14%14% 3%3%

Child and Family Child and Family CentersCenters

49%49% 53%53% 38%38%

Hospital Hospital 42%42% 33%33% 59%59%

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosisProfessional Professional < 3< 3 3 - 43 - 4 5 +5 +

PediatricianPediatrician 7%7% 6%6% 6%6%

Child PsychiatristChild Psychiatrist 0%0% 1%1% 8%8%

PsychologistPsychologist 16%16% 23%23% 52%52%

Speech TherapistSpeech Therapist 8%8% 5%5% 0%0%

Multi-disciplinary Multi-disciplinary staffstaff

69%69% 65%65% 34%34%

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosis The relationship between The relationship between

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

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosis Overall, higher rates of satisfaction Overall, higher rates of satisfaction

were related to ,lower age of were related to ,lower age of diagnosis, more information and diagnosis, more information and perceived specificity of perceived specificity of professionalism in the area of ASD.professionalism in the area of ASD.

Furthermore, the higher the age at Furthermore, the higher the age at diagnosis, the higher the number of diagnosis, the higher the number of consultations before obtaining consultations before obtaining diagnosis.diagnosis.

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosis The younger the child was the more The younger the child was the more

specific the intervention was specific the intervention was (p<.05), which was surprising as (p<.05), which was surprising as school servicing begins at age three school servicing begins at age three in Israel.in Israel.

Satisfaction with the intervention Satisfaction with the intervention chosen was significantly correlated chosen was significantly correlated with the specificity regarding ASD with the specificity regarding ASD (p<001).(p<001).

Results and Results and Conclusions:Conclusions:DiagnosisDiagnosis More than half of the parents More than half of the parents

reported that their child received reported that their child received autism-specific support from one or autism-specific support from one or more service providers (e.g. home-more service providers (e.g. home-based treatment) based treatment)

Of those who were in a non ASD-Of those who were in a non ASD-specific program, higher degrees of specific program, higher degrees of satisfaction were reported from satisfaction were reported from integration programs. integration programs.

Results and Results and ConclusionsConclusions Satisfaction with support and Satisfaction with support and

education depended on:education depended on:

1.1. Communication between the Communication between the program and the parents, program and the parents, specifically about daily functioning.specifically about daily functioning.

a. notebooka. notebook

b. evening meetings b. evening meetings

c. short chatsc. short chats

Results and Results and ConclusionsConclusions Satisfaction with support and Satisfaction with support and

education depended on:education depended on:

1.1. The information exchange must be The information exchange must be reciprocal.reciprocal.

2.2. It is important because it is difficult It is important because it is difficult fr the child with ASD to report.fr the child with ASD to report.

3.3. Communication is seen as the base Communication is seen as the base for cooperation and continuity.for cooperation and continuity.

Results and Results and ConclusionsConclusions The information exchange must The information exchange must

be reciprocal.be reciprocal.1.1. Professionals must listen to the Professionals must listen to the

parents.parents.

2.2. They must take the parents seriously They must take the parents seriously as partners.as partners.

3.3. This is the base for parental This is the base for parental involvement-thinking and working involvement-thinking and working together for the child’s benefit.together for the child’s benefit.

Results and Results and ConclusionsConclusions Parental perceptions of the Parental perceptions of the

professional:professional:

1.1. Level of commitmentLevel of commitment

2.2. Level of enthusiasmLevel of enthusiasm

3.3. Level of motivationLevel of motivation

4.4. Continuity of staffingContinuity of staffing

5.5. Professional knowledge of ASDProfessional knowledge of ASD

Results and Results and ConclusionsConclusions Parental perceptions of the Parental perceptions of the

professional:professional:

6. Viewing the child as an individual 6. Viewing the child as an individual and getting to know him/her as such.and getting to know him/her as such.

7. Individualizing the activities is also 7. Individualizing the activities is also important.important.

8. Creating an Individualized 8. Creating an Individualized Educational Program was seen as a Educational Program was seen as a professional necessity.professional necessity.

Results and Results and ConclusionsConclusions

ASD-specific knowledge and trainingASD-specific knowledge and training Sharing knowledge about ASD.Sharing knowledge about ASD. Sharing knowledge about Sharing knowledge about

intervention options.intervention options. Continuing education and Continuing education and

knowing up-to-date information knowing up-to-date information and research findings.and research findings.

Thoughts about child Thoughts about child indicators:indicators:Assuming that parents who receiveAssuming that parents who receive

support report a higher degree ofsupport report a higher degree of

satisfaction about the servicing theirsatisfaction about the servicing their

children receive and are more involvedchildren receive and are more involved

in making decisions which affect theirin making decisions which affect their

child, an aim of this research was tochild, an aim of this research was to

identify child indicators affecting theidentify child indicators affecting the

well-being of both the child with ASDwell-being of both the child with ASD

and his parents.and his parents.

Thoughts about child Thoughts about child indicators:indicators:Early diagnosis is problematic, according to Early diagnosis is problematic, according to

parental report:parental report:1. relatively late age of diagnosis1. relatively late age of diagnosis

Parental satisfaction is related to age of Parental satisfaction is related to age of diagnosis.diagnosis.

2. delay in receiving the diagnosis2. delay in receiving the diagnosis

On the average there was a delay of On the average there was a delay of more than one year between the first more than one year between the first consultation and the receipt of diagnosis.consultation and the receipt of diagnosis.

Thoughts about child Thoughts about child indicators:indicators:Early diagnosis is problematic, according to Early diagnosis is problematic, according to

parental report:parental report:This delay is problematic asThis delay is problematic as

1. Autism can be diagnosed as early as 2.1. Autism can be diagnosed as early as 2.

2. Early intervention has resulted in better 2. Early intervention has resulted in better outcome.outcome.

Thus, it is important that professionals are Thus, it is important that professionals are more informed and act more speedily.more informed and act more speedily.

Thoughts about child Thoughts about child indicators:indicators:Accessibility to services was reported asAccessibility to services was reported as

problematic. Despite accessibility problems,problematic. Despite accessibility problems,

most parents were satisfied with educationalmost parents were satisfied with educational

services, particularly those which were ASDservices, particularly those which were ASD

specific. The parents who reported higherspecific. The parents who reported higher

degrees of satisfaction were those who knewdegrees of satisfaction were those who knew

about ASD and got a diagnosis quickly, at a about ASD and got a diagnosis quickly, at a

young age and was seen by professionals young age and was seen by professionals

knowledgeable about ASD.knowledgeable about ASD.

Thoughts about child Thoughts about child indicators:indicators:

Parental satisfaction was associated with Parental satisfaction was associated with

1.1. Parental involvement in formal Parental involvement in formal supportsupport

2.2. Knowledge of available servicesKnowledge of available services

3.3. Time between first consultation and Time between first consultation and final diagnosis.final diagnosis.

Thoughts about child Thoughts about child indicators:indicators:

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

ThanksThanks

Analia RabinovichAnalia Rabinovich

Ayala GeldmanAyala Geldman

Shachaf SalomonShachaf Salomon

Staff of ALUT and Bet LorenStaff of ALUT and Bet Loren

All the families who participated in All the families who participated in this research!this research!

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Parental Satisfaction: Indicator for servicing of young children with autism?