overview enabling participation in childhood disability · king, imms, stewart, freeman, nguyen,...

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Enabling participation in childhood disability:

Challenges & opportunitiesProfessor Christine Imms

• NDIA goals – where does participation research fit?

• Aiming for positive participation outcomes

• A participation framework

• Building evidence for effective participation interventions

Overview

• deliver the National Disability Insurance Scheme (NDIS) so as to, amongst other things, support the independence, and social and economic participation, of people with disability and enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports;

• manage, advise and report on the financial sustainability of the NDIS;

• develop and enhance the disability sector;

• Build community awareness of disabilities and the social contributors to disabilities;

• collect, analyse and exchange data about disabilities and the supports for people with disability; and

• undertake research relating to disabilities, the supports for people with disability and the social contributors to disabilities.

NDIA Statutory Functions

https://www.ndis.gov.au/about-us/governance/functions-ndia-including-decision-making

• The NDIS aims to give people with disability better access to personalised, high quality and innovative supports and services.

• A specific focus is to enhance the independence, social and economic participation of people with disability and their carers.

NDIS Service Charter

https://www.ndis.gov.au/about-us/our-service-charter.html

Not defined in the glossary but the main objective is to provide the reasonable and necessary

supports to live an ordinary life

• WHO’s International Classification of Functioning Disability and Health (ICF)

• Participation = “involvement in a life situation”

• Participation is a ‘growing concern’ in disability research

Participation in childhood disability research

• Are interventions that aim to increase participation effective?


2015

7 RCTs

Build skills & functions

Coaching

Group & Individual

Goal focused

3 showed effect: Increased

engagement, school attendance,

recreational diversity

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• What has our research focused on when investigating change in participation?


Shutterstock images

But what constitutes participation?

• What do intervention researchers mean by ‘participation’ when they study it?


2016

25 intervention studies

4 defined participation

6 referred to ICF

38 different measures

6 Themes

Mapped to measures

Thematic language analysis (Imms et al 2016)

Activity competence

Sense of self

Preferences

Environment

Attendance

Involvement

Environment: Availability; Accessibility; Affordability; Accommodating; Acceptability

Family of participation related constructs

Most common outcome measured was activity competence

• Participation is involvement in a life situation (WHO, 2001) that has two essential elements: attendance and involvement (Imms et al 2016)

• Attendance is defined as ‘being there’ • Measured as frequency of attending, and/or the

range or diversity of activities in which an individual takes part.

• Involvement is defined as the experience of participation while attending

• Including elements of engagement, persistence, perhaps social connection, and affect.

Participation definition

WHO, 2001; Imms et al, 2016

• We need to change our perspective


Boy with binoculars: Alarmy stock photo; google images

Purpose: • To use current knowledge to examine and

further develop the theoretical framework initially proposed in the SR

• To enhance conceptual clarity for research and practice when considering participation as both a ‘means’ and an ‘ends’

Family of Participation Related Constructs (fPRC)

2017

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Transactions / Processes Participation ↔ Intra-personal

Transactions / Processes Individual in the environment

• Participation attendance and/or involvement

• Influenced by• Environment• Context• Intra-personal

• Activity competence• Sense of self• Preferences• Body function/structure

Participation as outcome

Images used with permission

• Participation attendance and/or involvement

• Influences • Activity competence• Sense of self• Preferences• Body functions• Context • Environment

Participation as process

• Frequency

• Time spent

• Diversity or range of activities

• Patterns of attendance in home, school, community activities across the life course

Changes in attendance

How much is enough?

What is a desirable pattern?

• Experience while attending• …engagement, persistence, affect,

perhaps social connection…

Changes in involvement

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• Engaging in• Focus • Persistence• Effort

• Engaging with

Changes in involvement

Engagement

Images used with permission

• Systematic review to identify measures of participation

• attendance • involvement

Do we have measures of participation?

Adair, Imms, Granlund, Ullenhag, Keen, Rosenbaum (ongoing)

Total retrieved (n = 32,767)After removing duplicates (n = 20,394)

Reviewed titles (n = 17,370)

Reviewed full texts (n = 1,213)

Identified participation measures:- Named measures (n = 122) → 44 ≥ twice

- Study specific measures (n = 81)- Counts of frequency/behaviour (n = 128)

Reviewed abstracts (n = 3,673)

Full texts included in data extraction (n = 578)

Participation framework (n=25 named measures)Attendance Involvement Activity

competenceSense of

SelfPreferences Context/

EnvironmentOther

16 8 13 1 1 7 6

• What does this framework ‘say’ about change?

• Language (verbs) & bidirectional arrows

• Transactional processes

Conceptual frameworks: fPRC

A transactional framework for rehabilitation• Focuses on the shift in rehabilitation

research/practice to ‘real world’ contexts• Where participation and environment are in focus

more than body function and activity

• Requires a broader/deeper awareness of the lives of children and families and of the transactional processes of change over the life course

• Is consistent with the NDIA/NDIS functions and charter

Conceptual frameworks

King, Imms, Stewart, Freeman, Nguyen, (accepted), Disabil & Rehab

Theoretical tenets of life course change • Transactional processes involving exchanges of

person and context over time lead to adaptive outcomes

• Changing opportunity structures and experiences affect adaptive development

• There are numerous pathways to positive developmental outcomes

• There are periods of differential sensitivity of person-environment relations

Transactional framework

King, Imms, Stewart, Freeman, Nguyen, (accepted), Disabil & Rehab

“Effective ingredients” to improve participation: • Individualised personally meaningful participation goal

setting• Occurs in context – in the activity settings

• That are safe, provide learning, and support family

• Coaching or mentoring • The therapist coaches the individual / family rather than

‘doing for’ or ‘doing to’, and/or • A peer-mentor ‘works with’

• Solution-focused environmental and/or activity adaptation and a skilled facilitator

• Carefully chosen multiple strategy approach

Participation research

Current research from Norway, Canada, Australia, US

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• Measures• Attendance • Involvement

• Participation as process and/or outcome• Methods

• Single case experimental design• Interrupted time series• Randomised trials• Longitudinal follow up

Building evidence

• Deliver the NDIS to support the independence, and social and economic participation, of people with disability …

• Independence – being able to do (or have done for)

• Participation - being able to attend AND be involved in social and economic activities

• undertake research relating to disabilities, the supports for people with disability and the social contributors to disabilities

Participation research and the NDIA are well aligned

https://www.ndis.gov.au/about-us/governance/functions-ndia-including-decision-making

Adair, B., Ullenhag, A. Keen, D. Granlund, M. & Imms, C. (2015). The effect of interventions aimed at improving participation outcomes for children with impairments: A systematic review. Developmental Medicine and Child Neurology. DOI: 10.1111/dmcn.12932

Batorowicz B, King G, Mishra L, Missiuna C. An integrated model of social environment and social context for pediatric rehabilitation. Disabil Rehabil. 2016;38(12):1204-15.

King, G., Imms, C., Stewart, D., Freeman, M., Nguyen, T. (accepted). A transactional framework for pediatric rehabilitation: Shifting the focus to situated contexts, transactional processes and adaptive developmental outcomes. Disability and Rehabilitation.

Imms, C., Granlund, M., Wilson, P.H., Steenbergen, B., Rosenbaum, P., & Gordon, A. (2016). Participation - both a means and an end. A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology, DOI: 10.1111/dmcn.13237

Imms, C. Adair, B., Keen, D., Ullenhag, A., Rosenbaum, P. & Granlund, M. (2016). ‘Participation’: A systematic review of language, definitions and constructs used in intervention research with children with disabilities. Developmental Medicine and Child Neurology. 58(1), 29-38. DOI: 10.1111/dmcn.12932

Maxwell G, Alves I, Granlund M. Participation and environmental aspects in education and the ICF and the ICF-CY: Findings from a systematic literature review. Dev Neurorehabil. 2012;15(1):63-78.

World Health Organization. International Classification of Functioning, Disability and Health. Short Version. Geneva: World Health Organization 2001.

References

• NDIA: https://www.ndis.gov.au/about-us/governance/functions-ndia-including-decision-making

• NDIS: https://www.ndis.gov.au/about-us/our-service-charter.html

• Google images: “boy with binoculars” https://www.google.com/search?site=&tbm=isch&source=hp&biw=1260&bih=569&q=boy+with+binoculars&oq=boy+with+binoculars&gs_l=img.3..0l2.7080.10393.0.10530.19.10.0.5.5.0.401.1564.2-2j2j1.5.0....0...1ac.1.64.img..9.10.1571.rhlNo2hlZwk

• Participant images: All used with consent from the Diversity of Participation Study

Websites & images

Thank you

overview enabling participation in childhood disability · king, imms, stewart, freeman, nguyen,...

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