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Seen and Heard

Engaging children and young people

with long term conditions and

complex needs

Professor Jane Coad

Professor in Children and Family Nursing/Director

Centre for Children and Families Applied Research

Coventry University

jane.coad@coventry.ac.uk

Aims

1. Set the scene on participation of children and young

people in order to improve the setting and measuring of

standards for service delivery

2. Share common challenges in engagement to provoke new

thinking and solutions in providing a sustainable child

health workforce

3. Draw on real life case exemplars

“Its good for us to take

in different views – it’s

a whole new way of

looking at things”

Alice from Alice in

Wonderland

Where are we now?

Over last two decades numerous

articles and policies in the UK and

internationally highlight that

children and young people

should be consulted with in terms

of the ‘services’ they receive

No decision about me

without me?

Where are we now?

Number of narrative literature reviews and grey literature

e.g. Coad and Shaw (2007); RCPCH (2010);

Coad et al (2013); NCB (2013)

Types of techniques

Age (Development)

Spectrum of activities

Representation/Conditions

Levels

Techniques

Arts-based e.g. draw & write/graffiti/symbols

Use of technology (blog, skype, mobile applications)

Questionnaires

Interviews/ Focus Groups

Photographs/Scrapbooks/Diaries

Video filming. IT work.

Fun days /Trips

Story telling/Puppets

Drama /Theatre

Age

0

1

2

3

4

5

6

7

8

9

10

< 2 ye

ars

2-4 ye

ars

4-10

yea

rs

11-18 ye

ars

Paren

ts/C

arers

Number of

Trusts

Representation/Conditions

Most evidence found was in public health and acute

care/illness. Many under-represented :

– Transitional care (Across services; outreach)

– Community/Respite Care

– Children and young people with disabilities

– Profound complex care and long term health needs

– Children and young people with palliative care needs

De Vries MC, Wit JM, Engberts DP, Kaspers GJL, Van LE. Pediatric oncologists' attitudes

towards involving adolescents in decision-making concerning research participation.

Pediatric Blood and Cancer 2010; 55(1):123-128.

… Seen and Heard !

Ways we do this needs to

be engaging if we are going

to improve health services

Long term conditions and

complex needs does not have

to mean COMPLICATED

(or impossible!)

Challenges?

Practical • Level of involvement and engagement • Techniques used • Practical issues e.g. environment or space; informed consent & ethics committees • Project resources (Financial/Staff/Time) • Skills and confidence Wider issues • Protection - (Ethics/Legal) & Representation • Gatekeepers - Professionals and parents – power! • Dissemination and outputs

What structures need to be in

place to overcome challenges?

THREE suggestions!

• Develop an advisory groups or panel

• Develop systems that support engagement

including ethics and governance

• Have a range of techniques and skills (or

someone who can) to ensure engagement is

facilitated

1. Developing an

advisory group

or panel

Case Exemplar

In 2010 West Midlands region were awarded over 55 projects

and £5.5 million from DH to improve care for children and

families with life limiting illness and complex care

Over £1.4 million to CCFAR, Coventry University across a

Programme of 7 projects supported by Acorns Children’s

Hospice

One was an evaluation of West Midlands projects

Developed an advisory group (panel)

Case Example

• Aim of our Advisory Group

– Data collection methods/tools and analysis

– Web site design and content itself

• Two groups

– One for young people (8) and one for parents (11):

– We were careful not to ‘over use’. So we also

accessed existing advisory groups who were

confident to engage with each other / already

considered and formed opinions?

– Enabled a wide area of West Midlands to be included

• We had a ‘gatekeeper’

– An advocate for the TWO groups (Warwick University)

– Attended research steering group

• Where and when to ‘meet’?

– Trust, dept, centre and hotels

– Web meetings

= Parents opted for meeting together and our Advisory

Group chose on line advisory meetings with one family

event

Case Example

Key Learning in our Project Advisory Group –

• Clear explanations of what the project involved/needed

• Ground rules of respect

• Lots of planning and time

• Needed more adult ‘facilitators’ to support

• Reward and fun

Case Example

2. Develop systems

that support

engagement

including ethics and governance

for Life-limited Children and their Families in the

West Midlands

Case Exemplar

Identify the prevalence of need for children’s palliative and supportive care within the West Midlands area.

Identify the extent to which families’ needs were met

Understand how professional networks support the co-ordination, co-operation and collaboration of services.

Explore the costs of care to providers and families.

Facilitate involvement of parents, carers, children and young people in underpinning, advising and supporting the research.

Case Exemplar

Case Study

• Information Giving

– Information in partnership (CYP’s/Parents)

– Consent/Assent & parental consent (<16yrs)

– Report development, dissemination and outputs

• Governance and guidance

– Team understanding of the wider literature and

RCPCH/RCN/MCRN work

• Organisation/Institutions

– Developed a glossary

– Team Powerpoint presentation

Key Learning about systems that support engagement

• Clear information about the ‘process’ and terms

• Balancing the advocate role

• Challenged our own ways of thinking about sharing

evidence and explaining systems

• Making it interesting

Case Example

3. Have a range of

techniques and

skills (or someone

who can) to ensure

engagement is facilitated

Case Exemplar

The numbers of children ventilated at home

in the UK has increased tenfold to

around 933 (Wallis et al 2010). Many

carers are not adequately trained or

competent in the care of Long Term

Ventilated (LTV) children and young

people (Briscoe et al, 2010).

The “Breathing Matters” project focused

on improving training /evaluating caring

for LTV children/young people living at

home.

Case Example

We used a range of methods of engagement that

met the needs of the condition and care/treatment

– Interviews (one to one/focus groups with parent

in attendance)

– Questionnaires (Use of technology/Filemaker)

– Arts-based focus groups

– On line (Blog)

Tell us three things you like and three things that could be better about xxxxxx?

Key Learning about engagement

• Planning and preparation is crucial

• That you have in your skill set a range of methods of

engagement that meet the needs of the child or young

person (or you know someone who can….)

• Build engagement into your costs and use it for the

purpose you proposed

• Engagement should be focused but fun

• Engagement that flows but is also facilitated

Case Example

Seen and Heard

Engagement with children

and young people to

improve health care service

is happening and is

possible!

But …

We still need …(NiHR Evans; Coad et al 2013):

• More collaborative sharing of realistic engagement

• Link to outcomes e.g. standard setting; quality measures

• Greater understanding of ‘cost’ - staff/resources/time

• Improve training & support (confidence)

• Improve our collaborative dissemination

• Value children and young people’s contribution in making

a difference

Finally

Engaging with children

and young people

and their families is at

times like a journey

Despite all the planning

you may encounter

uncharted

experiences and

territory ….

....But thats all part of the ‘fun’!

Thank you

Any questions?