Advancements in Evidence-informed Family Support for People with

Autistic Spectrum DisorderDr. Sandra Kit-man TSANG

JP, Associate Professor

Department of Social Work and Social Administration

Faculty of Social Sciences, The University of Hong Kong

International Conference on Parenting in the 21st Century (ICP21)

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Aims and Outline

1. Highlight importance of timely and needed evidence-informed family support for people with Autism Spectrum Disorder (ASD)

2. Report on existing family support services

3. Explore enhancements on evidence-informed family support

4. Discuss implications for practice and research

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Risks and needs of families of people with ASD

ASD in Diagnostic and Statistical Manual – V (DSM-V)

• A born-with neurological disorder

• A “spectrum” disorder, not manifested in any typical model, with diverse difficulties in:Social interaction

Communication

Restricted interests or repetitive behaviors

• Incurable

• Brings life long conditions and influences

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American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub.

Rising prevalence in the World:1 in 68, 1.5 to 2% in populations!

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Centers for Disease Control and Prevention. (2013). Change in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011–2012. National Center for Health Statistics, 1–8.

Overview of Family Challenges• Physical

• Exhaustion in 24-hr care/watch

• No break, no holiday, no time for self

• Financial • Living space

• A parent might need to give up job

• Psychological • Worry, shame, stigmatization

• Social • Child and whole family not welcome

• Need to learn how to use services immediately

• Spiritual • Loss of faith and hope: not sure of support services in HK when they age

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The JC A-Connect Family Support Project

2015-2018 JC A Connect 喜伴同行計劃 : Holistic Support for Children with Autism and Families

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Background

• Hong Kong Jockey Club Charities Trust funded the JC A-Connect Autism Holistic Support Project from June 2015-2018

• HK$167.79 million

• 3 components: Family, School, Community

• 6 NGOs

• Website: www.jca-connect.hk

Public Education

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School Support

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Family Support

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Objectives of Family Support Team

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• Identify family needs across the life span

•Review existing family services and projected service gaps

•Collect stakeholders’ views on effective family support

1. Understand

family needs

•Evaluate support services provided by three designated NGOs

• Identify and compile other less-known family support services

2. Evaluate existing services and identifyless-known services

•Propose a family support framework

•Promote family support

•Disseminate good practices

3. Enhance support for such families

Types of programs developed to enhance:Multi-session group programs:

Type A: ASD-specific coping

- e.g. Memory drill, study skills

Type B: Parenting sense of competence

- e.g. Positive parenting, parent-child art/exercise

Type C: Parent general health

- e.g. Yoga for parents only

Mass programs: Talks, OutingsType D: Family functioning and support

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Evaluation on Existing support for such families in Hong Kong

Quantitative evaluation on Selected programs: Measures1. Pre-post structured questionnaire

a) Eyberg Child Behavior Inventory (Eyberg & Ross, 1978)

b) General Health Questionnaire -12 (Goldberg & Williams, 1988)

c) Parental Stress Scale (Berry & Jones, 1995)

d) Parenting Sense of Competence (Gibaud-Wallston & Wandersmann, 1978)

e) Kansas Marital Satisfaction Scale (Schumm, et al., 1986)

f) Functional Social Support Questionnaire (Broadhead, et al., 1988)

2. Program Satisfaction Rating

3. Fidelity check

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Quantitative evaluation on Selected programs: Sample

9 months since project commencement:136 Completed sets of pre-post questionnaire

Type A: ASD-specific coping (n=38)

Type B: Parenting sense of competence (n=56)

Type C: Parent general health (n=42)

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Quantitative evaluation on Selected programs: Preliminary results

• Program satisfaction: most participating parents were very appreciative of the programs

• Type B programs which focused on enhancing parents’ general (instead of ASD-specific) competence brought best results in perceived

• Management of child’s behaviour

• Family functioning and social support

• Level of parental sense of competence

• Psychological well-being

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Qualitative evaluation on Selected programs

• Program-end focus groups• The last session of each program

• Around 45 minutes

Involved 120 service users from 24 programs

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Expectations on the programs

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Type A: Get more information about ASD; Understand child’s thoughts in a better way

Type B: Equip with skills to manage child’s behavioural and emotional problems more effectively

Type C: Equip with skills to manage child’s behavioural and emotional problems more effectively

Type A: ASD-specific coping

Type B: Parenting sense of competence

Type C: Parent general health enhancement

How the programs affected the ParentsChanges in parents

1. Knowledge and skills enhancement• Better understand the nature of ASD and their own children (Type A)

• More confident to manage and support their child; More competent in solving problems in daily parenting (Type B)

2. Stress and emotional relief• Have learnt through others’ experience and sharing of their own

thoughts; Peer support gained (Type C)

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Type A: ASD-specific coping

Type B: Parenting sense of competence

Type C: Parent general health enhancement

How the programs affected Family relationship

Parent-child relationship improved• More adaptive dyadic interactions

• Improved communication between parent-child dyads

• More able to appreciate the positive attributes of child

Relationship with other family members improved• Able to generalize skills from one child to the other, as well as on the

interaction with spouse

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Type A: ASD-specific coping

Type B: Parenting sense of competence

Type C: Parent general health enhancement

Observation: Evidence-informed family support is needed to optimize service input!

Achievements from this evaluation study:

1. Enhanced awareness on evidence-informed services• Agency’s awareness on planning• Participant’s understanding on filling

2. Enhanced sensitivity on service evaluation outcome indicators: • Program satisfaction rating• Fidelity check• Structured questionnaire• Interview/focus group• Parent feedback meeting

Limitations from the current evaluation study:

Sample size on program assessment• Centre-based services only• Access to hard-to-reach parents, fathers• Unstable attendance 20

Visits to Less-known services

• Documented relevant services by other agencies and private service providers, for example:

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K’s Kids Toy Company

The Absolutely Fabulous Theatre

Connect

Professional Music Therapy Centre

International Centre for Gifted and Talented

Louis Program

Observations on Less-known services

• Rich experience on serving different target groups• Different living area• Different socioeconomic status• Different strengths and interests

• Innovative support ideas are present • Collaboration to document these theory and practice

impact

• Issue on sustainability of services• Documentation of services• Evidence-informed intervention• Professional training of service providers

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Other works by the Family Team

Family Needs Survey

395 parents with child under 6

Aims:

• Explore categories of needs experienced by parents of children with ASD in Hong Kong

• Understand important and unmet needs perceived by parents

Found 4 major types of needs:

• Professional support for child

• Child’s social health support

• Parent psychosocial support

• Government and community Support

Systematic Review on Family Interventions

Aims:

• Provide an overview of all existing interventions for parents of children with ASD

• Synthesize essential elements of these parent interventions

• Evaluate the effectiveness of these parent interventions

Found:

• Increasing studies since 2011

• Study qualities varied

• Need for more robust studies

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Implications

James Heckman in BGCA 80th

Anniversary Dinner, October 7, 2016Recommendations• Early investment on young

families and children produces best yields for the society

• Children from disadvantaged families and children with special educational needs benefit most from quality parent and children programs

• Poor program do harm, not just no effect: waste their precious development time

• Outcome indicators should go beyond IQ and academic performance. Should include health, sociability, good habits etc.

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Implications from the Family Team studies:Family Support Framework needed!

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Services Needs Research Needs Public Education Needs

• Multiple levels: universal, selected, indicated

• Multiple ways of service delivery

• Developmental stage sensitive

• Culture, gender and age-sensitive

• Evidence-informed

• Step up pre and in-service professional training for service providers

• More systematic exploration of family needs in local contexts

• More informants

• More outcome indicators: physical, psychosocial

• Longer follow-up

• Public health model: use of psychological screening tool to identify at-risk families

• Evidence to guide service development and research

• Bank on strengths

• Remove stigmatization

• Early help-seeking

Singapore ASD Designer Jeh’sdinosaur pattern products brought to White House by PM’s wife

2016 Relevant Conferences at HKU

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January 9th 2017 ASD Conference!!http://www.socsc.hku.hk/hkasd2017/

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American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub.

Benjak, T., Vuletić Mavrinac, G., & Pavić Šimetin, I. (2009). Comparative Study on Selfperceived Health of Parents of Children with Autism Spectrum Disorders and Parents of Nondisabled Children in Croatia. Croatian medical journal, 50(4), 403-409.

Brown, H. K., Ouellette‐Kuntz, H., Hunter, D., Kelley, E., & Cobigo, V. (2012). Unmet Needs of Families of School‐Aged Children with an Autism Spectrum Disorder. Journal of Applied Research in Intellectual Disabilities,25(6), 497-508.

Centers for Disease Control and Prevention. (2013). Change in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011–2012. National Center for Health Statistics, 1–8.

Chan, K. S. (2016). Survey: Most Parents of Children with Autism Report Discriminatory Experiences. The Education University of Hong Kong.

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Firat, S., Diler, R. S., Avci, A., & Seydaoglu, G. (2002). Comparison of psychopathology in the mothers of autistic and mentally retarded children. Journal of Korean medical science, 17(5), 679.

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References (2)Foo, Yap & Sung (2014). The experience of Singaporean caregivers with a child diagnosed with ASD and challenging behaviors. Qualitative Social Work 14(5) . DOI: 10.1177/1473325014558662

Hastings, R. P., Kovshoff, H., Ward, N. J., Degli Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of autism and developmental disorders, 35(5), 635-644.

Ilias, K., Liaw, J. H. J., Cornish, K., Sang-Ah Park, M. & Golden, K. J. (2016). Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual and Developmental Disability. DOI: 10.3109/13668250.2016.1196657

Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214-1227.

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Myers BJ, Mackintosh VH, Goin-Kochel RP. (2009) “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ live. Reseach in Autism Spectrum Disorders, 3, 670-684.

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Russa, M. B., Matthews, A. L., & Owen-DeSchryver, J. S. (2014). Expanding supports to improve the lives of families of children with autism spectrum disorder. Journal of Positive Behavior Interventions, 1098300714532134.

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