Information for patients, families and carers · 2020-02-05 · in consults with their...

Information for patients, families and carers

V4,CF team

October 2015

Diagnosis and during infancy

Medical Care Physiotherapy Dietetics Social work Parent/Carer

Education and framing

of:

Diagnosis

Expectations for the

future

Life course approach

Positive outlook

Introduction to the role

of Physiotherapy in CF

Understanding the

function and importance

of airway clearance in CF

Understanding timing of

airway clearance and

establishing a routine

The importance of

nutrition in managing CF

Breastfeeding your child

with CF

Growth and CF

Establishing and

maintaining optimal

Liaise with Genetic

counsellors on

diagnosis/ attend

initial appointments

Establish existing CF

knowledge

Psychosocial

assessment

Attend diagnostic

appointment/

follow up clinic

appointments

Fitting CF into

everyday

Enjoying your baby

and their

development


V4,CF team

October 2015



Confirm diagnosis and

establish genotype

Ensure family has copy

of genetic report

Arrange testing for

siblings as appropriate

Offer genetic

counselling for family

(repeat at 1 and 2

years)

Begin, review and

progress airway

clearance techniques

Establish child’s

respiratory baseline

Learning to monitor and

manage respiratory

illness signs and

symptoms

Understanding the

growth during infancy

Additional energy and

nutrient requirements

Malabsorption and

enzymes

Diagnosing

malabsorption

Commencing enzymes

with infant feeding

Identify any barriers

to good health

management, focus on

the family’s support

systems, coping

strategies, risk and

protective factors,

emotional health of

family members

Family’s health

understanding of

patient's health status

and capacity to

Networking and

becoming

connected; referral

to CFV for

membership

/support and

material aid

Adjustment to

parenthood,

child/parent

attachment /

genetic concerns,

future fertility


V4,CF team

October 2015



Introduce importance

of multidisciplinary

team and therapeutic

relationship

Establish pancreatic

function and screen for

insufficiency

Introduce surveillance

habits

Surveillance, especially

importance and role of

exercise in CF

Monitor development

Introduce nebulised

therapies if required

Optimising enzymes

doses

Monitoring

malabsorption

Reflux and CF –

understanding the signs

and treatment involved

Salt and vitamin

requirements/suppleme

ntation

administer medication

Family and social

network response to

diagnosis

Adjustment to

parenthood,

child/parent

attachment / genetic

concerns, future

fertility

Financial support

Team approach at

Monash CF; goals of

CF care ‘CF

Manager’,

preventing

progression and

living as normal a

life as possible


V4,CF team

October 2015



of the respiratory

system

Discuss antibiotic

regimen options

Overview of exercise/

physio technique,

nutrition, social and

psychological health

Discuss introduction of

solids and healthy

eating relationships

The importance of

monitoring growth and

nutritional status

What to expect after

infancy – growth,

nutrition, food choices

and eating habits,

enzymes, salt and

vitamin requirements

information / Referral

to external support

services

Patient travel claims/

Advice on overseas

travel/health

insurance

Prior to any or first

admission,

introduction to wards/

Liaise with ward staff

Child care

introduction to service


V4,CF team

October 2015



Offer research study

enrolment

Manage first

respiratory infections

Monitor nutrition and

growth

Monitor development /

family coping style

and Monash CF Annual

Education Day


V4,CF team

October 2015

Preschool years

Medical Care Physiotherapy Dietetics Social work Parent/Carer Young person


participation

Surveillance,

especially of

respiratory and

gastrointestinal

systems, nutrition,

development

Screen for

respiratory

pathogens

Understanding the

function and

importance of

airway clearance

in CF

Understanding

timing of airway

clearance and

establishing a

routine

Review and

CF and nutrition –

food choices,

behaviour and

eating habits

Growth –

establishing and

maintaining optimal

growth in the

preschool years

Malabsorption and

enzymes

Psychosocial

assessment

Different focus of

assessment

/intervention

depending on the

child's age and

development

Routine

regarding CF care

and treatments,

Talk to your

toddler/child in an

age appropriate

way about their

health condition

Answer their

curious questions

Seek age

appropriate CF

education material

from your CF team

Talk to family and

friends about your

health

Start to use words

to describe CF,

healthy

behaviours and

routines

See/read/watch

age appropriate CF

education during


V4,CF team

October 2015

Preschool years


Overview of

exercise/ physio

technique, nutrition,

social and


Formal MDT annual

review from age 4

Annual screening

blood tests

Annual radiology [CT

progress airway

clearance

techniques-

commence more

active techniques

(eg: BubblePEP,

TheraPEP, huffing

and coughing)

Establish child’s

respiratory

baseline

Learning to

monitor and

Establishing and

managing your

child’s baseline gut

function

Optimising enzyme

doses and learning

to match to grams of

fat

Working with

preschool teachers

and carers about

Child’s

understanding

about their

health condition

CF Education age

appropriate

Child's

behaviour/

establishing CF

and other

routines

Seek help from your

CF team for any

issues related to CF

care and treatments

including physio

and diet, emotional

and developmental

issues

Inform childcare or

preschool service

about annual

Monash CF

Education Day and

preschool years

Be active in health

routines, Annual

Reviews and clinic

appointments


V4,CF team

October 2015

Preschool years


or CXR]

Annual influenza

vaccination for whole

family

Discuss preschool

and school entry

Infection

exposure/precaution

s

Food and enzymes

manage

respiratory illness

signs and

symptoms

Understanding the

importance and

role of exercise in

CF

Introduce

nebulised

therapies if

required

malabsorption and

enzymes

Learning to swallow

enzyme capsules

Salt and vitamin

requirements –

adjusting

preparations and

doses of

supplements

Preparing for school

Consultation and

psychosocial

support for

parents/carers

including:

Social /

Emotional

Developmental

issues/ transition

to early

education support

Provide My Monash

CF Care Plan to

service

Develop your

support systems

with friends and

family

Provide health


V4,CF team

October 2015

Preschool years


Medications taken at

school

Annual CF education

day

Discuss expectations

around exercise

Manage viral

infections/ chest

infections

– what to expect in

the school years

education,

changes in health

status and CF

health literacy

Concept of

cyclical grief/

recurring sorrow

Liaise early child

education

service/ CF

Annual Education

Day

information to

family and friends

and the preschool

community


V4,CF team

October 2015

Preschool years


Reinforce and model

importance of MDT

Begin Allied

Health Annual

Reviews


V4,CF team

October 2015

Primary Years



participation

Surveillance, of

respiratory and

gastrointestinal

systems, nutrition,

development

Screen for

respiratory

Helping your child to

understand what

airway clearance is

and how it works

Encouraging

independence and

compliance with

airway clearance

routine (Upper

Primary)

Helping your child

to understand

nutrition and its

relationship to

lung health in CF

Growth –

maintaining

optimal growth in

the school years

Allied Health

Annual Reviews

Reinforce concept

of young person

‘CF manager’;

discuss adolescent

transition in upper

primary years

Psychosocial

Support young

person’s transition to

both primary and high

school with a family

meeting with school

that the young person

can actively

participate in

Be collaborative in

approach to your

health care with

your family and your

CF team.

Participate in clinic

and annual reviews,

write down

questions, ask CF

team for answers


V4,CF team

October 2015

Primary Years


pathogens

Lung function

surveillance

Overview of

exercise/ physio

technique, nutrition,

social and


Formal MDT annual

review

Establish child’s

Encourage child to

actively participate

in consults with their

physiotherapist


understand timing of

airway clearance and

maintain a routine

Review and progress

airway clearance

techniques as

Food choices and

eating habits in

school years

Preparing school

lunches and

snacks

High energy eating

with emphasis on

healthy food

variety

assessment

Routine regarding

CF care and

treatments

Level of

understanding

about their health

condition

Child’s behaviour

Routines

Invite educators to

Monash CF Education

Day or request an

RDNS in-service

Encourage thinking

and planning for Talk

about future study and

employment

Actively encourage

young person to think

of themselves as a

Start thinking about

transition to

adulthood in

advance of starting

secondary school

and what changes

might happen

Talk to school about

how your health

might affect your

participation and

attendance


V4,CF team

October 2015

Primary Years


understanding of CF

Annual influenza

vaccination for the

whole family

Manage viral

infections/ chest

infections

Encourage exercise

and sport

Reinforce and model

appropriate

Establish child’s

respiratory baseline

Helping your child

learn to monitor and

manage respiratory

illness signs and

symptoms including

identifying

exacerbations


Eating with friends

Taking enzymes at

school, school

camps and

sleepovers –

working with

teachers and

carers about

malabsorption and

enzymes

Helping your child

Social/ Emotional

development

Broader

environment –

local community/

school

‘good CF Manager’ and

ways they might do

this

Share your knowledge

with them

Encourage team and

individual sport and

extracurricular

activities

Get extra study

support if you need

it after being unwell

or in hospital

Talk to friends and

other young people

with CF; CFV or your

CF team can link you

in with others. If you

are unhappy, talk to

trusted

family/friends or CF

team to get solutions


V4,CF team

October 2015

Primary Years


importance of MDT

Increasingly

encourage child to

take responsibility

for aspects of self-

care

Increasingly engage

child in consultations

Discuss range of

therapeutic options

understand the

importance and role

of exercise in CF and

develop a good

routine

Encourage

participation in

sports

Introduce

nebulised/inhaled

therapies if required

understand

enzymes and

vitamin

supplements

Understanding

reasons for taking

them

Begin to take

responsibility of

remembering

when/how much

to take – matching

to grams of fat

Concept of chronic

sorrow (for

parents) –

recurring, cyclical

form of grief

Provide age-

appropriate CF

educational

material

CF Annual

Education Day


V4,CF team

October 2015

Primary Years


Annual screening

blood tests incl OGTT

Introduce sexual

health and fertility

discussions with

parents


understand the role

of nebulised/inhaled

therapies and

importance of good

technique

Encourage assistance

with preparation and

cleaning of

medications and

equipment

Understanding

baseline gut

function and

learning to identify

signs and

symptoms of

malabsorption

Water and salt

needs during

school years –

adjusting

preparations and

doses

social work

presentation for

teachers

Referral to Make a

Wish or Starlight

Foundation as

required

Referral to

Education Support

services

Support transition


V4,CF team

October 2015

Primary Years


Begin Pulmonary

Function Testing

Begin Allied Health

Annual Reviews

Understanding

impact of weather

and physical

activity

Sharing knowledge

about nutrition

and enzymes

to high school and

involvement in

extra-curricular

activities

Support around

adolescent

development/

transition


V4,CF team

October 2015

Secondary / Adulthood

Medical Care Physiotherapy Dietetics Social work Parent/Carer Young adult

At entry to

secondary school

establish child’s

knowledge of CF

Offer research

study participation

Consult initially

60-90 seconds

alone with

Support

adolescents to ask

questions

independently on

lung health, airway

clearance and

exercise- goal of

independent visits

with

physiotherapist

and independently

contacting as

required

Support

adolescents to

ask questions

independently on

growth, nutrition

and enzymes in

clinic

times/hospital

visits – goal of

independent

visits with

dietitian

Growth –

Encourage young

person to

ask/answer

questions

independently in

clinic/hospital

CF Education/

Young person

naming

medications,

procedures

Actively encourage

young person to

think of themselves

as a ‘good CF

Manager’ and about

what information

they need to do so

Share your

knowledge with

them

Seek information

about CF

Make your own

choices about

treatments and

health care routines

in discussion with

your CF team and

family/carer

Identify and talk

about exacerbations


V4,CF team

October 2015



adolescent

patients; HEADSS

screen at least

annually

Surveillance,

especially of

respiratory and

gastrointestinal

systems, nutrition,

development

Screen for

respiratory

pathogens

Progress

knowledge of

respiratory system

and importance of

airway clearance

in CF

Independence and

encouraging

compliance with

airway clearance

routine

maintaining

optimal growth in

the secondary

school years

Identifying and

naming nutrition-

related

medications and

doses (including

enzymes)

Taking enzymes

and vitamin

supplements

School issues

Mental health issues

Adolescent

transition towards

adulthood/

worksheet

Psychosocial

assessment to

identify any parries

or risks to good CF/

Promote

independence;

transition to young

adulthood

Start some

independent clinic

and annual review

appointments

Encourage planning

for future study and

employment

early and contact

clinic

See your CF team

members on your

own

Have your own list

of medications and

health care routines

Know how to

contact your CF

team


V4,CF team

October 2015



Lung function

surveillance

Annual influenza

vaccination for the

whole family

Overview of

exercise/ physio

technique,

nutrition, social

Review and

progress airway

clearance

techniques as

appropriate

Independence with

monitoring and

managing

respiratory illness

signs and

symptoms

including

identifying

independently

Understanding

signs and

symptoms of

malabsorption

Importance of

extra fluid and

salt with exercise

Understanding

nutrition and its

impact on CF

health management

/focus on outcomes

desired by the

patient

Impact of CF on

their life/ Concept

of health status

Patient’s own

understanding of

health (age

appropriate)

Seek advice if you

have concerns

about the young

person’s mood

Talk about transfer

to adult care with

the paediatric

consultant and CF

team

Meet with Adult

Consultant and tour

Make appointments,

get prescriptions

filled and paid for

Investigate income

options and

Centrelink income

support/

pharmaceutical

benefits

Senior school VCE

special


V4,CF team

October 2015



and psychological

health. Formal

MDT annual

review

Manage viral

infections/ chest

infections and

other

complications of

CF

Liaison with other

specialties as

needed

exacerbations

Understanding

respiratory

baseline and lung

function tests

Continued

education

regarding the

importance and

role of exercise in

related

conditions such

as diabetes and

osteoporosis

Additional forms

of nutritional

support

Oral nutrition

supplements

Enteral tube

feeding

Self-management

Patient’s adherence

with CF treatment

(and parent’s

perception)

Spirituality

(meaning-making of

health condition)

Education/ future

job/ vocational

aspirations

Adult Wards around

the time of transfer

to adult care

consideration

application if

needed. Talk to

disability support

workers at school,

TAFE or Uni

Plan for further

study/employment

Seek information

regarding sexual

and reproductive

health issues and

relationships


V4,CF team

October 2015



Encourage

exercise and sport

Reinforce and

model importance

of MDT

Increasingly

encourage child to

take responsibility

for aspects of self-

care

CF and maintain a

good routine

Encourage

increased fluids

during exercise

Encourage

participation in

sports

Independence with

nebulised/inhaled

therapies if

Senior school VCE

special

consideration

application/

tutoring/ Liaise

with secondary and

tertiary institutions

RCH CHIPS / CFV

program referral or

peer/mentor

support


V4,CF team

October 2015



Increasingly

engage child in

consultations

Discuss range of

therapeutic

options

Annual screening

blood tests inc.

OGTT

Bone health

required

Progress

knowledge of the

role of

nebulised/inhaled

therapies and

importance of

good technique

Independence with

preparation and

cleaning of

medications and

equipment

Family support/

community

connectedness

History of hospital

admissions (eg

first/ regular,

procedural anxiety)

Tour Adult wards

Practical issues (eg

accomm, finances,


V4,CF team

October 2015



screening from age

14

Later 2o years,

discuss career

aims

Specifically discuss

transition to adult

care

independent living

skills, travel)

Drug or alcohol

related issues

Screen/identify

possible mental

health issues;

depression/ anxiety

and refer to services

where appropriate

Sexual and


V4,CF team

October 2015



reproductive health

discussions and

resourcing

Future planning

issues: Planning for

parenthood

Declining health –

reducing work

hours/ change of

duties, change jobs

Income support

options; Centrelink

advocacy


V4,CF team

October 2015



Thoughts about

transplantation

Advance Care

Planning

Identifying grief and

loss issues

Assisting with

choices about

treatments


V4,CF team

October 2015

Information for patients, families and carers · 2020-02-05 · in consults with their...

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Transcript of Information for patients, families and carers · 2020-02-05 · in consults with their...