Children and young people with cerebral palsy and communication disabilities: charting the course for

safe care

Bronwyn Hemsley, Ph.D.

The University of Newcastle

@CP_CRE Symposium 2015 #CPpathways15

Melbourne, May 4th, 2015

AcknowledgementsO Stuart PalmerO Stephen DannO Linda WorrallO Leanne TogherO and all other

associated investigators

O and all participants in our research to date

O Susan BalandinO Andrew GeorgiouO Sophie HillO Ben KraalO Meredith AllanO Isabel HigginsO Shaun McCarthyO Megan RolloO Joanne SteelO Natalie Adams

NHMRC funding, Australian Research Council Funding, funding of The University of Queensland and The University of Newcastle

Are you in Twitter? De-Lurk for today to find each other #CPpathways15

#WeSpeechies #HospitalComms #TweetReach @bronwynhemsley @CRE_CP

Overview of this talk

O Health care communication experiences of children and young people with cerebral palsy and their families

O The potential for communication technologies to improve engagement in health from a young age.

O Clinical implications for children, parents, and health professionals will be presented along with directions for future research.

Parent Feedback• To be involved in decision-making process• Open dialogue on risks and benefits of therapy;• To choose the most applicable and feasible therapy• Info on any necessary post-therapy support and

funding and its availability; and any additional impact of the therapy (on load; life).

Would eHealth technologies and decision-aids help? PCEHR + Decision Aids on Interventions

Better evidenceBetter access to evidence + its appraisal

Would communication aids / health literacy aids help children to take part?

• Families would like more emphasis on family centred goals that are mutually agreed on by clinicians, therapists and families.

• This would ideally involve discussions about other aspects of the child’s life, and set appropriate and achievable goals accordingly.

Naturalistic interventions that are feasible in the everyday life of children with cerebral palsy and their

families

Child’s priorities and goals?

Parent Feedback

O Consider the impacts of therapies on the child and family more broadly:O current family capacity and mental

health, O social and participation

consequences, and O overall quality of life.

‘Cost’ ‘Benefit’ Analysis of interventions (compared to current)

‘social cost’ and ‘social benefit’ of interventions

Parent Feedback: Costs and Benefits of All Options

Book is In Press

Chapter:Powrie, B., & Hemsley, B.Goal setting when communication is a challenge

Older parent carers of adults with cerebral palsy and complex communication needs in hospital

Doctoral Research of Hemsley, B.

Supervision of Balandin, S, & Togher, L.

An NHMRC Project Grant 2013-2016 APP1042635

Communication in hospital for people

with developmental disabilities

Postdoctoral research of Hemsley, B.

Advisors and collaborators: Worrall, L., & Balandin, S.

An NHMRC Postdoctoral Research Fellowship 2009-2013

eHealth

Keeping people with communication disability safe in hospital

Hemsley, B Georgiou, A Hill, S Balandin, S. et al

An NHMRC Project Grant 2013-2016 APP1042635

eHealth

#TweetReach: Using Twitter to increase information exchange for people with

communication disabilities

Hemsley, B, Balandin, S, Palmer, S, & Dann, S.

An ARC Discovery Early Career Research Award 2014-2017

eHealtheSocial

5 people who use AAC

Hemsley et al., 2015 “We definitely need an audience” ...

Special Issue: Social Media and Communication Disability (2015)

Special Issue edited by Bronwyn Hemsley

and Janice Murray8 papers

Children with multiple service providers/supports

O The family and its supportsO The community and its services / membersO Disability service providers / supportsO Education services / supportsO Health service providers / public health

supports

Conversations about or affecting health (and health literacy) happen everywhere.

Children with CP encounter many ‘unfamiliar listeners’ in health settings

• The parent is key (common)• The child is key (central)• The methods of communication may vary• The need and opportunity to communicate

will vary (demands, chances)• Communication access will vary:

environmental barriers & facilitators to communication (knowledge, attitudes, time, confidence, tools)

The ‘Child Transitional Communication Model’

(Lambert)OThe parent’s role is often to ‘speak for

the child’ in health appointments. Some things cannot be known by proxy, but parent interprets/guesses.O However, children are also asked

questions directly “how did that happen to you?”

OChildren like to move back and forth from the ‘background’ to the ‘foreground’ in their interactions with parent/healthcare provider.

Communication between children and health professionals in a child hospital setting: a Child Transitional Communication Model; Veronica Lambert, Michele Glacken & Mary McCarron, 2010.

Journal of Advanced Nursing

Passive bystander

Active participant

Family centred care

Shifting power relations

Universal progression v Guided participation

Rights negotiation: Protection v Participation

Being overshadowed

Being at the forefront

Child as becoming

Child as being

VisiblenessChild ‘being’

and ‘becoming’

Artistic representation of model/adapted from original.

Strategic Competence

O Healthcare settings offer a variety of unique opportunities to develop and use skills to develop• Health literacy• Engagement in supported decisions• Self-advocacy and Self-determination• Digital literacy / documentation / information

exchange / information managementO How will the child gradually develop

‘healthcare communication competence’ ?O Which opportunities are to be made/taken as

the child grows with a lifelong condition?

Communicating in health settings

Lit Review

We located 18 studies meeting the inclusion criteria (16 adult / 2

child):In English, Peer Reviewed Journal

Article, Original Research, Including all 3 concepts: Severe

communication disability / Communication / Hospital

16 Qualitative Studies

1 Survey1 Medical Record

Review

We made a ‘table of included studies’ showing

characteristics of the studies

We looked across these

studies to create

‘Content Theme’

Categories

Six Core Strategies Across Studies:Suggested to improve communication

1. develop services, systems, and policies that support improved communication

2. devote enough time to communication 3. ensure adequate access to communication

tools (call systems and communication aids)4. access personally held written health

information 5. collaborate effectively with carers, spouses,

and parents6. increase the communicative competence of

healthcare staff

Personally Controlled Electronic Health Records

(PCEHR)

Hemsley, B, Georgiou, A, Hill, S, & Balandin, S.

An NHMRC Project Grant 2013-2016 APP1042635

eHealth

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“A personally controlled eHealth record is a secure online summary of your health information. You control what goes into it, and who is allowed to access it. Your eHealth record allows you and your doctors, hospitals and other healthcare providers to view and share your health information to provide you with the best possible care.”

http://www.ehealth.gov.au/internet/ehealth/publishing.nsf/content/home

“eHealth Records explained” by Metro North Brisbane Medicare Local https://www.youtube.com/watch?v=e9gkl98EphI

What is a Personally Controlled Electronic Health Record? (PCEHR)

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Many aspects of life in society have evolved from paper to…

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A life online … connected systems

All Personally Controlled

Digital Information & Sharing: What to share, with whom?

O In hospitals / health settings: voluntary reporting of incidents into an online system IIMS (for accreditation) culture of reporting and sharing increasing safety; spreading knowledge across sites.

O In eHealth records (Electronic medical records; Personally controlled eHealth records)

O In Social Media (e.g., Facebook, Twitter, Skype, Instagram)

How the PCEHR operates

Source: Hunter Medicare Local

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Personally Controlled Electronic Health Record

PCEHR“it is envisaged that the PCEHR will improve the

interaction between service providers and patients and will empower patients with their own

healthcare related information to make informed decisions.”

Muhammad & Wichramasinghe, 2013

Substitute Decision-Making

Supported

Decision-Making

Guardianship

Nominated Representativ

es

Authorised Representativ

es

Safeguards

Opt - InOpt - Out

Aspects of PCEHR

Personally Controlled Electronic Health Records Act 2012 (Cth): An Act to provide for a system of access to electronic

health records, and for related purposes.

(April 2015) PCEHR is currently ‘opt-in’ – recommended to become

‘opt-out’.

Applying for a PCEHR

as the patient; Part A of Application Form

for a dependent as an Authorised Representative

Once you have a PCEHR, you can request that a ‘Nominated

Representative’ have access to your record (this is done within the

PCEHR system).

People can apply for a PCEHR for a ‘dependent’ (e.g., a person over

18 who does not have legal capacity). (Part B of application form)

• Wherever you appear in the health system your history will be available electronically.

• It’s a summary of your healthcare (not replacement of local clinical systems)

• Less reliance on your memory and paperwork for healthcare history.

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PCEHR key benefits

• Personally Controlled (PC) – designed for the patient to

control their health information.

• System will grow over time with more use & enhanced

functionality as usage grows.

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For further information on PCEHRPCEHR:Australian Government Department of Health – eHealth site:www.eHealth.gov.au

National e-Health Transition Authority (nehta):www.nehta.gov.au

Privacy & Security:Office of the Australian Information Commissionerwww.oaic.gov.au

Stay Smart Online is the Australian Government's online safety and security website, designed to help everyone understand the risks and the simple steps we can take to protect our personal and financial information online.www.staysmartomline.gov.au

O Medicare history

O Medications history

O Adverse reactions

O Allergies

O Procedures / interventions

O Immunisations

O Advance Care (“Living Will”) Directive Custodian

O Australian Organ Donor Register

O Next of kin

O Access Controls

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What information is in the PCEHR ?

Pathology results

Diagnostic imaging

Health record overview

Shared Health Summary

Prescription and Dispense View

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SMS/ Email Alerts

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Breach of Privacy

What can I do if I think someone has breached my privacy?

1) Check the audit trail

2) With evidence of a breach contact the System Operator (Medicare eHealth) by calling 1800 723 471 or visit your local Medicare Services Centre.

3) Following the receipt of your complaint, the System Operator may refer your complaint to the Office of the Australian Information Commissioner or a privacy regulator in a State or Territory.

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How long are records stored?PCEHR Lifetime• The key records that form part of a deactivated eHealth

record, including any Shared Health summaries, will be stored in the National Repositories Service for a period of at least 30 years after death

• if a date of death is unknown, for a period of at least 130 years after the record was uploaded

What do you think of PCEHR? Will it help in transition to

adulthood? Older Children and Young Adults with Cerebral Palsy & Families.We would like to talk to you about your impressions of the PCEHR.Interviews with child / observations at home with computer if NSW.Interviews can also be by Skype.

Contact: Bronwyn.Hemsley@newcastle.edu.au @bronwynhemsley

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PrivacyConfidentiality

Personal control? Help to Use?

What information is stored?

We need to talk .. (social media) (PCEHR)issues arising

Clinical Implications

O Parents need to be involved in what information will assist others to provide good care

O Children need to be involved in goal-setting around communicating with health providers, about health, about themselves.

O Service providers need to give children time to respond, and a choice to be ‘background’ or ‘foreground’ in interactions / to move between these

Clinical Implications

O Clinicians think about being registered with PCEHR and to assist families and children in the process of registration, uploading, and use of the system.

O Clinicians, General Practitioners, need to advocate use of PCEHR where it might help to convey and store information over the lifespan

O Parents need to ask GPs to access the child’s PCEHR and to use it regularly.

Clinical Implications

O Think about goals relating to ‘health literacy’ and ‘conveying health information’

O Think about the concepts of ‘sharing’ and deciding, what information to share with whom, and when?

O Think strategically about how children with CP can gather information about health, using online forums.

Directions for Future Research

O Uptake and use of PCEHR and other online forums including social media

O Health impacts of using Information Communication Technologies

O Supported decision-making in relation to eHealth technologies

O Ask young people with CP: What information is most useful over the lifespan, for storage and update? Who should have access, and how does this help?

O Communicative environment of health settingsO Social research on health systems, policies,

and processes of care.O Patient safety research O Evaluation of communication interventionsO Costs of care in health settings.O Experiences of younger children with

communication disabilitiesin health interactions.

O Caregiver mastery, and transfer of care infoO Occupational health and safety issues O Impact of providing support (for parents /

siblings)

Directions for Future Research

Social Media & In Person

Connectivity

Online + Offline = Real

PCEHR connections

Connectivity and Safety

Information Communication

Technologies

Participation & Inclusion

Communities

connections

O bronwyn.hemsley@newcastle.edu.au

O @bronwynhemsley

#PCEHResearch #TweetReach #HospitalComms

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