1. health and fitness
2. disease

Training group leaders
how to include people
with chronic disease in
community activities
Susan Abbott, Amy Vassallo, Paul Dugdale, David Greenfield
Published by ANU eView, The Australian National University, Canberra ACT 0200, Australia
Email: [email protected]
This title is also available online at: http://eview.anu.edu.au
A Catalogue-in-Publication entry for this title is available from the National Library of Australia
Acknowledgements
The development of this package was funded by the Commonwealth Department of
Health and Ageing as an Interprofessional Learning in Primary Health Care to Encourage
Active Patient Self-Management of Chronic Disease as part of an Australian Government
Inter-professional Learning Chronic Disease Self-Management Demonstration project.
partnership with the Centre for Health Stewardship, ANU and the Australian Capital Territory
(ACT) Division of General Practice and ACT Health. The Chief Investigators of the project
were Dr David Greenfield (UNSW), Associate Professor Paul Dugdale (ANU/ACT Health),
Dr Jo Travaglia (UNSW), Dr Peter Nugus (UNSW) and Professor Jeffrey Braithwaite. Project
staff were Ms Susan Abbott (ANU) and Ms Bev Hayhurst (ACT Division of General Practice).
Research assistance was provided by Ms Tanya Lawlis (ANU) and Ms Vineeta Kurien (ANU).
The medical content of the guide was reviewed by the consultants of ACT Health and
the ANU Medical School: Professor Leonard Arnolda (Cardiology), Associate Professor
Christopher Nolan (Endocrinology), Dr Alexandra Hammett (Thoracic Medicine), Dr Rajeev
Kumar (Psychiatry) and Dr Ling San Wong (Rheumatology).
Input to the development and content of the guide was provided by staff from organisations
and individuals in the ACT. The organisations were: the ACT Division of General Practice;
ACT; Diabetes Australia ACT; Disability ACT; Heart Foundation ACT; OzHelp Foundation;
Parkinson’s ACT; SHOUT Inc.; Southern Cross Health Club; YMCA of Canberra; YWCA of
Canberra; and volunteers from Health Care Consumers of the ACT and the ACT Chronic
Conditions Alliance.
This education package is supported by funding from the Department of
Health and Ageing through the Sharing Health Care Initiative.
© Copyright of the Centre for Clinical Governance Research in Health, University of
New South Wales and the Centre for Health Stewardship, Australian National University,
College of Medicine Biology and Environment, December 2010. May be reproduced if this
ISBN 9780980728460 (print)
9780980728477 (ebook)
For further information please contact <[email protected]>.
Contents
Abbreviations vi
Useful terms and definitions vii
1
The education package 1
Background and purpose 1
The burden of chronic disease 1
A collaborative approach to addressing chronic disease 2
Principles 3
Interprofessional learning 3
Community development 3
Development of the education package 4
The contents of the education package 6
The training toolkit 6
The guide 7
2
The training toolkit – Training group leaders how to include
people with chronic disease in community activities 8
Contents 8
Resources for photocopying 9
Build your interprofessional interprofessional reference group 10
Who you need in your group 10
Building the group 11
Interprofessional reference group meeting 12
Prepare the workshop for community group leaders 13
Build your workshop presentation team 13
Advertisement of the workshop 15
Present the workshop 16
Facilities and room set-up 17
Introductions 17
Round-table presentations 17
Panel discussions 18
Self-reflection exercise 19
Conclusion 20
Training group leaders how to include people with chronic disease in community activities : a training toolkit iii
Contents continued
Evaluation 21
Chronic disease self-management forums 22
The team and the presentations 22
Activity 23
Advertising the forum 23
Resources for photocopying
Project Timeline 26
Interprofessional Reference Group Contact List 27
Agenda for Interprofessional Reference Group Meetings 28
Workshop Session Outline 29
Guide for Round-Table Discussions 30
Panel Questions 32
How to Include People with Chronic Disease
in Community Activities – Where to From Here? 33
Workshop Evaluation Sheet 34
Agenda for Evaluation Lunch 36
Session Outline for Ongoing Education Forums 37
General information and helpful resources 38
Facilitators’ helpful hints 38
Consumer and health professional contacts 40
iv
3
References 41
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Contents continued
4
The guide – How to include people with chronic disease in
community activities 42
Acknowledgements ii
Abbreviations iv
Useful terms and definitions v
1 Introduction 1
2 Information on common chronic diseases and co-morbidities 3
Diabetes 4
Heart conditions 7
Chronic obstructive pulmonary disease 11
Musculoskeletal conditions 13
Depression 15
3 Duty of care 18
4 Privacy 20
5 Discussing chronic disease with a group activity participant 22
6 First aid 25
7 References 26
Training group leaders how to include people with chronic disease in community activities : a training toolkit v
Abbreviations
vi
ACTDGP
Australian Capital Territory Division of General Practice
AIHW
Australian Institute of Health and Welfare
Australian National University
ANU
CCGR
Centre for Clinical Governance Research in Health
COPD
Chronic obstructive pulmonary disease
IPCP
Interprofessional collaborative practice
IPL
Interprofessional learning
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Useful terms and definitions
A d u lt le a r n i n g
G ro u p le a d e r s
Involves student autonomy, learning from
past experiences, collaborative learning and
experiential learning.
Group leaders can be fitness instructors, experts
in a specific activity and volunteers, qualified
and unqualified.
C h ro n i c d i s e a s e
A ‘term applied to a diverse group of diseases that
tend to be long-lasting and persistent in their
symptoms or development’ (AIHW 2006: 71). The main
characteristics of a chronic disease as outlined by AIHW
(2009) include:
• complex causality
• multiple risk factors
• long latency periods
• functional impairment or disability
usually being confined to non-communicable diseases.
C o - m o r b i d it y
When two or more diseases are present in an individual
at the same time (AIHW 2007). The diseases can
either have no association with each other or, more
commonly, be directly related to each other. Examples
include cardiovascular disease and diabetes, or health
failure and depression.
The responsibilities of a group leader include:
• having knowledge of the activity they are conducting
• being aware of the special needs of participants
• undertaking duty of care
• providing an atmosphere that allows open
communication between members and between the
group leader and members.
Guide
The publication How to include people with chronic
disease in community activities (referred to as ‘the
guide’) is included as the second part of this package.
A copy is also given to all participants of the workshop.
It includes fact sheets on each key chronic disease
and other necessary information for community
group leaders.
H e a lth lite r ac y
Leader of the workshop day, usually also the
project leader.
A sufficient, pragmatic understanding of health
so that the literate person can ensure the best
care for themselves given their circumstances
and the resources available, and can effectively
engage in community action to improve their
community’s health.
O n g o i n g e d u c ati o n fo r u m
Pa n e lli st
Public opportunity to explore current topics in chronic
disease self-management.
A representative in the field of chronic disease
management and/or community work who is invited to
participate in the panel activity of the workshop.
Fac i litato r
Training group leaders how to include people with chronic disease in community activities : a training toolkit vii
Useful terms and definitions CONTINUED
P h ys i c a l ac ti v it y
S e lf - m a n ag e m e n t
The World Health Organisation (2009) has defined
physical activity as ‘any bodily movement produced
by skeletal muscles that requires energy expenditure’.
Examples of physical activities include swimming,
walking, yoga, exercise groups and gardening. The
National Physical Activity Guidelines for Australians
recommend that adults should ‘accumulate at least
30 minutes of moderate intensity physical activity
on most, preferably all, days’ (DoHA 2009). Such
activities will result in a noticeable increase in heart rate
and breathing.
‘Active participation by people in their own health
care’ (ACT Health 2008: 17), with support when
needed from the health system. A person who is able
to self-manage their condition understands their
health condition, is able to make informed decisions
about treatment, participate in the decision-making
in relation to continuing care, have and follow a health
care plan, monitor changes and is able to respond to
changes through a pre-developed action plan (ACT
Health 2008).
Wo r k s h o p
P r e s e n te r s
Educators who have experience with each key chronic
disease who are invited to provide information on their
chronic disease of interest.
The workshop for community group leaders that is the
main activity of the package. Its purpose is to educate
community leaders to better support people with
chronic disease.
Sc r i b e s
Volunteers who take notes of the discussion at the
round-table presentations of the workshop. Each
presenter will be assigned a corresponding scribe.
viii
Training group leaders how to include people with chronic disease in community activities : a training toolkit
1 The education package
Background and purpose
The purpose of this package is to support you to improve the inclusion
of people with chronic disease in community activities in your local area.
It contains information and resources to help you to plan, deliver and evaluate
educational activities with your local community. The first section details the
aim, rationale and background for the development of this package.
The overall aim of this package is to educate community group leaders
about chronic disease issues. Community leaders equipped with such
knowledge will be better able to support people with chronic disease to
manage their conditions while encouraging their participation in community
group activities.
The burden of chronic disease
Chronic disease is responsible for around 80% of the total burden of disease,
mental conditions and injury in Australia (National Chronic Disease Strategy
2005). For example, diabetes prevalence has more than doubled over the last
two decades and is estimated to affect one million Australian adults (National
Chronic Disease Strategy 2005). Co-morbidities also contribute to the burden
of disease. Arthritis and other musculoskeletal conditions are estimated to
affect more than six million Australians. Arthritis causes more disability than
any other medical condition (National Chronic Disease Strategy 2005).
Chronic disease affects the most disadvantaged sectors of the population
such as older Australians, people from lower socioeconomic groups and
Aboriginal and Torres Strait Islander people (National Chronic Disease Strategy
2005). Lifestyle changes towards a poorer diet and a decrease in physical
activity, along with an ageing population, are the major contributors to the
increase of chronic disease prevalence rates.
The highly prevalent chronic diseases that are included in this package are
diabetes, heart failure and chronic obstructive pulmonary disease (COPD).
Arthritis and depression are also addressed, as they are two common comorbidities in the Australian population. Details on all these conditions are
included in the guide entitled How to include people with chronic disease in
community activities found in the second part of this package.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 1
A collabor ative approach to addressing
chronic disease
Collaboration between health professionals, community organisations and
people with chronic disease is essential for chronic disease to be managed
effectively. The participation of community organisations in chronic disease
management promotes a holistic approach to improving the health and
wellbeing of people living with a chronic disease. Through the provision
of community-based care, physical and social activities as well as health
promotion, community organisations can play a major role in supporting and
encouraging patient self-management.
This package complements the existing Stanford Chronic Disease Selfmanagement Program. The Stanford Program focuses on peer leadership,
where people with chronic disease learn from each other through sharing
experiences and collective problem-solving within a group setting. This
package also complements the Flinders Course for Health Professionals,
which is a clinician-led model that integrates self-management with medical
management. The Flinders Course emphasises the education and training of
the primary health care workforce to help people with chronic illness achieve
sustainable and longer-term gains. The course provides tools that enable
health practitioners to support their patients to self-manage.
Participation in community activities is valuable for better management
of chronic disease, as well as increasing an individual’s quality of life. While
training in chronic disease self-management exists for health professionals
and people with chronic disease, there is a lack of training at the community
sector level for workers or volunteers who lead physical or social activities.
This can result in patients with a chronic condition often being turned away
from community activities, as education and systems are not in place to
support their particular needs within the community. Effective education and
community support, as conveyed in this package, can help combat this gap.
Supporting people to better self-manage their chronic disease within the
community requires skilled group leaders who can welcome and support
people with chronic disease. Access to community activities provides an
opportunity for people living with a chronic disease to develop local social
networks and lessen the isolation that comes with reduced mobility and
low income. The strategies of this education package present multiple
opportunities to improve the coordination of services for people with chronic
disease via the developmental, workshop and networking activities.
2
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Principles
This education package links community development and interprofessional
learning principles to increase community sector workers’ skills and
knowledge of chronic disease self-management.
Interprofessional learning
Effective management of chronic disease utilises the principles of
interprofessional learning (IPL). IPL brings together common stakeholders
to learn from, with, and about each other in order to achieve a common
outcome. In particular, IPL develops and enhances communication, teamwork
and professional relationships between the various stakeholders including
health professionals, community workers and patients. This is particularly
important in today’s busy lifestyles as IPL and interprofessional practice
promotes the transfer of knowledge, experience and awareness to achieve a
common goal that may not have occurred otherwise. Through this increase in
awareness IPL provides greater opportunities for improved health outcomes
and more effective management of chronic disease.
Effective chronic disease management also recognises the patient as a
professional. This concept assumes that the patient understands their
condition and its impact on their life, and is engaged in disease selfmanagement. By involving the patient in decision-making in relation
to treatments, strategies and interventions, the risk of medical error is
decreased, and the patient is supported to self-manage their chronic disease.
The involvement of the patient within the health care team allows a holistic
approach to chronic disease management.
Community development
Community development starts from the principle that within any community
there is a wealth of knowledge and experience that, if used in creative
ways, can be channelled into collective action to achieve the communities’
desired goals.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 3
Community development practitioners work alongside people in communities
to help build relationships with key people and organisations and to identify
common concerns. They create opportunities for the community to learn
new skills and, by enabling people to act together, community development
practitioners help to foster social inclusion and equality.
Development of the education package
The content of this education package has been developed in consultation
with health professionals, community organisations and people living with
a chronic disease. Consultation occurred though phone and face-to-face
interviews, focus groups, ongoing education forums, questionnaires and
mixed stakeholder workshops. The feedback (Table 1) identified key areas that
needed to be addressed for the development of the package.
Workshops held in September and October 2009 developed a series
of questions and answers to address the concerns outlined in Table 1.
The workshops also assisted in further refining the contents of the guide
and workshops.
4
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Table 1: Key research findings
Concerns identified by
community organisations
• Lack of knowledge on chronic diseases
• Feeling inadequate:
›› Ability to provide appropriate support to cope with the level of severity
of their condition.
›› Understanding the distinction between helping and hindering a
participant, so as not to make person feel different or affect their selfesteem.
• Liability and duty of care
• Communication not effective:
›› Lack or limited awareness of diseases and interventions
›› Limited access to reliable and accurate health information
›› Limited networking
• Confidentiality:
›› Will patient be comfortable sharing information?
Barriers identified by
community organisations
• Transport – beyond the scope of this project
• Costs – beyond the scope of this project
• Lack of general resources – beyond the scope of this project
• Lack of knowledge of chronic diseases and access to information
• Lack of knowledge of other organisations and services provided
Concerns identified
by people living with
chronic disease
• Need to feel safe while participating:
›› Are there adequate facilities?
• Need to feel heard by staff
• Information on activities delivered clearly and in a culturally sensitive way
• Lack of acceptance by staff and other participants
• Being labelled
Training group leaders how to include people with chronic disease in community activities : a training toolkit 5
The contents of the education package
This education package contains two sections:
• A training toolkit entitled Training group leaders how to include people
with chronic disease in community activities
• A guide entitled How to include people with chronic disease in
community activities
The structure of the toolkit and guide is as follows:
The Tr aining Toolkit
The toolkit includes:
Guide to preparatory activities
• How to get support from the local medical school/hospital
• Building your interprofessional team
• Tips for building and utilising your interprofessional reference group
Workshop
• A guide to planning and delivering the essential parts of the workshop
including:
›› Overviews from consumer representative organisations
›› Round-table and panel discussion offering a range of perspectives from
health professionals, community organisations and people living with
a chronic disease
›› Chance for self-reflection for all involved
›› Networking activities.
Evaluation
• A guide to planning and delivering an evaluation of the project including:
›› Meetings to gain feedback from the workshop
›› Further networking opportunities
›› A lunch to thank the presenters.
6
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Chronic disease self-management forums
• A guide for planning and delivering the essential parts of the forums
including:
›› engaging guest speakers to present current topics in chronic
disease management
›› participation in particular physical activities that are appropriate for
people with a chronic disease.
The Guide
The guide follows the design of the workshop and includes:
• Definitions of commonly used terms
• Fact sheets on each of the chronic diseases focused on:
›› Diabetes
›› Heart failure
›› Asthma
›› COPD
›› Arthritis
›› Depression
• Information and checklists for duty of care, privacy, and
pre‑exercise assessment
• Consumer and professional contacts
Training group leaders how to include people with chronic disease in community activities : a training toolkit 7
2 The training toolkit
This section contains details on preparing and delivering the education
package in your local community. As all communities are unique, please
adapt the package to suit your local context. A timeline of essential steps
for preparing and delivering this package can be found in the Resources for
photocopying section on pages 26–37. Investing time to develop the project
in the beginning will lead to the smoothest delivery of the package.
Contents
Build your interprofessional reference group 10
Interprofessional reference group meeting 12
Prepare the workshop for community group leaders 13
Present the workshop 16
Evaluation 21
Chronic disease self-management forums 22
Resources for photocoying 25–37
General information and helpful resources 38
8
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Resources for photocopying
These resources may be adjusted to better suit your community. Please note
the copyright conditions on these pages before distributing them.
Project Timeline 26
Interprofessional Reference Group Contact List 27
Agenda for Interprofessional Reference Group Meetings 28
Workshop Session Outline 29
Guide for Round-Table Discussions 30
Panel Questions 32
How to Include People with Chronic Disease
in Community Activities – Where to From Here? 33
Workshop Evaluation Sheet 34
Agenda for Evaluation Lunch 36
Session Outline for Ongoing Education Forums 37
Training group leaders how to include people with chronic disease in community activities : a training toolkit 9
Build your interprofessional reference group
Who you need in your group
The first step in setting up this project is to create your own interprofessional
reference group. In order to deliver the most effective package, a cohesive
group of collaborative workers must be established from backgrounds
including community workers, allied health, nursing, medicine and research,
as well as people with a chronic disease. This group will assist in tailoring
the delivery of this education package to the local community, increase its
credibility and effectiveness, and increase participation in the workshop.
The members of the interprofessional reference group can also assist you in
the delivery of the workshop by contributing as presenters and panellists.
Essential members of the interprofessional reference group are:
• medical experts to ensure accuracy of information
• health professionals (for example a clinical nurse consultant and
allied health professional) to present how to work with people with
chronic disease
• community sector leaders (such as a CEO or Chair) to encourage the
participation of community group leaders
• people living with a chronic disease.
It is important to emphasise that this is an evidence-based resource that has
been developed through a real need in the community. Background research
and thorough consultation within the Canberra community occurred to
develop this package. More information on its development can be found
in the section ‘The burden of chronic disease’ (p. 1). When approaching
individuals to be part of your interprofessional reference group, emphasise
that successful delivery of this package will help to facilitate better patient
self-management of chronic disease, thereby creating less need for external
support from hospital staff.
10
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Building the group
The first step in creating your own interprofessional reference group is
to develop lists of medical school, health service, health professional and
community sector representatives through existing local contacts in your
community. Use the Interprofessional Reference Group Contact List as a
prompt for whom to approach.
Things to consider:
• Include the local School of Medicine as the first point of call in the
development of your interprofessional team.
• Who do you already know; who do you think would be good to get
involved; and who you think would get involved?
Things to
consider
• Consider the dynamics of your community and who needs to know about
it, even if they may not become involved.
After developing some links with individuals in the medical school, health
services, community groups and people with chronic disease, invite them all
to a development meeting to talk about the idea and gauge interest.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 11
Interprofessional reference group meeting
After you have built your interprofessional reference group, the next step is to
arrange a developmental meeting. The purpose of this meeting is to provide
credibility to the project by:
• checking whether the materials are suitable for your local context,
taking into account environmental and cultural impacts on chronic
disease management
• tweaking the materials to ensure relevant discussion questions are
included in the workshop
• identifying people who would be able to participate in the workshop as
presenters, panel participants, patient as professionals etc.
• creating a sense of ownership for the project and therefore encouraging
their continual involvement.
The Agenda for Interprofessional Reference Group Meetings contains an
outline of how the meeting could run. Please note that you may need to divide
this content into two separate, shorter meetings if that fits in with your team
more conveniently. It is also important to feed back the findings after the
meeting to the participants, as they may have useful additional comments
or changes.
Checklist
Have you…
`` built support to the project from others in the community?
`` prepared your interprofessional reference group?
`` adjusted the education package to suit your local community?
`` gained ideas for people to approach to be presenters and panellists?
`` personalised the panel questions?
12
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Prepare the workshop for community
group leaders
This section outlines details and gives some resources to prepare for the
workshop aspect of the education package.
Build your workshop presentation team
You will need to put together a strong team to assist in the running of the
workshop. Our team consisted of:
• five presenters – representing each of the three chronic diseases and two
co-morbidities discussed in the education package
• five table scribes – one to work with each presenter
• five panel members – from the health, legal and community sectors, and
patients with chronic disease
• a facilitator for the panel session (this may be you).
Presenters: Presenters need to have a sound understanding of the specific
knowledge bases you are asking them to talk about. We accessed the Heart
Foundation, Diabetes Australia, clinical nurse consultants and other health
professionals.
• Liaise with each presenter individually prior to the workshop. Provide
presenters with the disease topic they will cover during the workshop.
• Ensure that they can present the information in lay terms.
• Ask them: “What can I do to make this the best experience for you?” Then
ensure that you put that into action!
• Ask them to come slightly earlier than the starting time of the workshop.
• Arrange for each presenter to have a scribe to help keep the discussion on
topic and to record the discussion.
Send presenters out a copy of the Guide for Round Table Discussions found
in the Resources for photocopying section a fortnight before the workshop.
Make yourself available to answer any of their questions.
Scribes: You will need a scribe to work with each of the presenters. Their role
will be to take notes of the conversation as well as to keep the conversations
Training group leaders how to include people with chronic disease in community activities : a training toolkit 13
on track. It is possible to use volunteers from your work environment for
this role.
• Two weeks before the workshop give the scribes a copy of the handout
Guide for Round-Table Discussions.
• It is a good idea for the scribe to meet their corresponding presenter
before the session. This could be at the beginning of the workshop while
the participants are signing in.
Panellists: You need a range of people with experiences as health
professionals dealing with chronic disease, a legal representative
who understands privacy and duty of care issues, community sector
representatives who have worked with people with chronic disease, someone
who actively manages their chronic disease, maybe someone who works in
the mental health area such as a social worker, or someone from the fitness
industry who works with people with chronic disease.
• Liaise with each person individually and allow time to build up the rapport
and relationship.
• Consider taking them out for a coffee or lunch prior to the workshop.
• Talk them through the process and ensure that they become familiar with
the terms (such as ‘community group leader’) and the panel questions.
• Explain that they have the right to pass and not answer every question.
• Explain that they are considered an expert already and are not
required to prepare for the questions, as they will be drawing on their
existing knowledge.
14
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Advertisement of the workshop
Advertising the workshop to the right audience is vital for its success. Send
out invitations to community groups in the local community as well as through
the networks you developed through your initial interprofessional reference
group meetings. There may also be some community representatives that
you would like to personally invite. A suggested advertisement format is
found below.
Invitation to be part of a workshop on
How to include people with chronic disease in
community activities
Background
The ANU, University of NSW, ACT Health and the ACT Division of General
Practice are working together to increase the opportunities for people
who live with chronic disease to access community activities.
We are developing an education package that will be presented to
community organisations by a range of health professionals and
community support organisations. It will be of interest to anyone running
social or physical activities for the community.
E
V
T
R
D
A
E
Y
L
L
P N
M
O
A
AIM
To increase the community sector’s awareness of chronic disease
and its impact so they may support people to living with chronic diseases
to participate in community activities.
The diseases we are focusing on include diabetes, heart failure, lung
disease, and the co-morbidities of musculoskeletal issues and depression.
These topics will be explored through information sharing, a Q & A panel,
and interactive group sessions at this workshop.
We invite you to be part of this innovative project through your
involvement in the third pilot workshop and would appreciate your
feedback during and after the workshop.
An independent team from the UNSW is evaluating the project.
S
Date: Friday 19 March
Time: 9.30am – 3.30pm
Venue: Members Dining Room 3, Old Parliament House
Catering will be provided – please indicate any special dietary
requirements.
Please RSVP by 12 March 2010 to xxxx.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 15
Checklist
Have you…
`` prepared presenters, scribes and panellists for the workshop?
`` finalised resources for participants?
`` advertised the workshop appropriately?
`` thought about wheelchair access around the room and into the bathrooms;
acoustics; interpreters – there may be a diverse group of participants; clear
instructions on how to get to the location?
`` catering (including checking for allergies and special dietary needs)?
Present the workshop
The purpose of running this workshop is to promote ways to enable people
with chronic disease to feel more comfortable, welcome and safe participating
in community activities. The workshop day is split into two parts:
1. The morning session – focuses on sharing information to make
sure everyone has a similar understanding of chronic disease selfmanagement. Topics include:
a. What is the chronic disease you are discussing (for example, heart
failure)?
b. What are the barriers to participating in physical and social activities
for someone with heart failure?
c. What are some strategies to overcome these barriers?
d. What are the danger signals to watch out for?
2. The afternoon session – focuses on the implementation of
community group activities that include people with chronic disease.
Key components will be strategies for inclusion, and opportunities for
participants to ask about the issues that concern them, such as duty
of care.
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Training group leaders how to include people with chronic disease in community activities : a training toolkit
Facilities and room set-up
The room should contain five round tables (put numbers 1–5 on the tables),
some tables lined up at the front of the room for the panel discussion and a
lunch table. A small table by the door for the sign-in sheet is also needed and
a small table for any relevant resources that the presenters may bring along.
On each of the round tables distribute a Workshop Session Outline, Workshop
Evaluation Sheet, Where to from here? self-reflection sheet and a copy of the
guide for each participant (for photocopy resources see pp. 25–37).
Introductions
Start the workshop by introducing yourself, explaining the learning outcomes,
workshop outline, and practical elements such as the location of the toilets.
Ask everyone to introduce themselves. This enables people to learn who is
participating and provides opportunities for networking and linking during
the day.
Round -table presentations
After all the introductions have been made, the round-table discussions
engaging the presenters can begin. The purpose of this activity is to:
• ensure that everyone has a shared understanding of the topics early on in
the day
• identify strategies to enable people with chronic disease to feel safe and
welcome in community activities
• develop trust in the group.
Here presenters will move around to each table to discuss the following
aspects of the chronic disease that they have expert knowledge on.
1. Overview of your topic and danger signs – how do we know when
someone is in trouble?
2. Challenges faced by people with the chronic disease you are talking about
when they want to be involved in physical or social activities.
3. Strategies for the community sector to support people with chronic
disease to overcome these challenges.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 17
Hints and reminders for the facilitator:
• Allow 15 minutes for each table presentation and give a time call after seven
minutes, indicating that if presenters haven’t yet moved onto challenges
and strategies to do so.
• Give a time call after a further seven minutes to indicate that it is time for
the presenters to move on to the next table.
• This can be continued in the same format until all the presenters have been
to every table.
• Ask table scribes to record the main themes and interesting points made.
After each table has been visited by each presenter it will be time for morning
tea and networking. During this break the table scribes can reflect on the
discussions, check with their presenter and prepare a small summary to
present back to the group after morning tea, emphasising points around an
overview of the topic, challenges and strategies to support people. Then it’s
lunch time!
Panel discussions
After lunch there will be a panel presentation engaging the panel volunteers.
The aims of the panel discussion session are to:
• provide participants with an opportunity to ask the hard questions about
including people with chronic disease in community activities
• provide an opportunity for participants to ask questions relevant to
their work
• involve the rest of the group in passing on their experiences to each other
• learn from specific ‘expert’ opinion about the various aspects (for example
clinical, organisational, legal) of involving people with chronic disease in
community activities.
Here the panel will sit at the front of the room facing the rest of the group,
and the facilitator will ask the panel questions using the panel discussion
questions from the developmental meetings, as well as invite questions from
participants.
18
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Hints and reminders for the facilitator:
• Explain the origin of the questions (they have been developed as part of
the original package and refined during your developmental sessions),
as this will provide the participants with the context and provide more
structure for the panel.
• Encourage the participants to think about any questions that have arisen
from the morning session that they may like to ask the panel.
• Have some prepared questions up your sleeve if there are no questions
asked by the participants following the panel discussion, such as:
›› How do we keep the networking going between participants and
presenters of the workshops?
›› Who would take responsibility to maintain this relationship?
›› What would it look like?
›› Who else needs to be involved or could be a good resource to support
chronic disease self-management?
Self-reflection exercise
Finally there will be an opportunity for self-reflection and preparing for the
future using the Where to From Here worksheet. The aims of this section
are to:
• enable self-reflection on the day with group sharing
• enable participants to identify future action.
Hints and reminders for the facilitator:
• Allow sufficient time for participants to complete the exercise.
• Go around each table and ask each person to present their answers for
questions 1 and 3.
• Valuable information and insights are gained from this sharing as it
gives people a chance to say what they are doing well, and strengthens
commitment by asking participants to state out loud what they will do to
support chronic disease self-management.
• Remind the participants that their comments on the evaluation sheet can
be kept anonymous.
Wrap up the workshop and thank all the participants for their contribution.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 19
Conclusion
Make sure that all participants fill out the Workshop Evaluation Sheet.
Thank all the volunteers and participants for their involvement.
PLEASE NOTE: You will need a critical mass of people to run the workshop.
Previous experience shows that about 20 people works well (ideally split into
five round tables). However, if you have fewer numbers, then other strategies
can be utilised such as:
a. Have five-minute discussions by presenters.
b. Eliminate the scribe role.
c. Brainstorm the challenges/strategies as one topic.
d. Have a chronic disease consumer talk about the disease from their
personal experience.
Checklist
Have you…
`` delivered the aims of the round table presentations?
`` delivered the aims of the panel presentations?
`` networked and made plans for future directions?
20
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Evaluation
The approach to evaluating the project involves reflecting personally on
the workshop, a review of the workshop participant feedback sheets and a
follow-up with the volunteer presenters from the workshop. Another valuable
outcome of this process is to help prompt ideas for the most relevant and
interesting topics for the ongoing education forums.
Review participant feedback
The evaluation sheet completed during the workshop can provide valuable
feedback for your evaluation of the workshops.
Reflection lunch
The reflection lunch is a good chance to say thank you to the presenters and
panellists, continue networking, provide an opportunity for interprofessional
learning in a neutral environment and gain informal feedback from the
workshop. Invite everyone who participated in the workshop as a presenter,
panellist or scribe to a follow-up lunch at a convenient time and location.
We found the best way to organise this was through email asking participants
to attend a thank you lunch for their involvement in preparing and/or
delivering the workshop. A free meal will always encourage attendance, but
remember that this event can be kept as informal as your budget requires.
Checklist
Have you…
`` evaluated the workshop through participant feedback sheets?
`` thanked all those involved through a lunch?
`` recorded any changes for delivering the project next time?
Training group leaders how to include people with chronic disease in community activities : a training toolkit 21
Chronic disease self-management forums
Some forums are to be presented for discussion and experiential learning
on chronic disease self-management. This is a good chance to engage all
three target groups of this project into one activity. The expected audience
for the forums are people living with a chronic disease, their carers, health
professionals and community group leaders.
The forums aim to increase the wellbeing of people living with chronic
disease and reduce their hospital admissions through more effective selfmanagement. Medical specialists and other health professionals provide
information on recent developments in chronic disease self-management,
and senior community representatives discuss strategies for welcoming
people into community services regardless of their health status. The forums
also provide the opportunity to experience physical activities appropriate for
people with chronic disease, as well as a chance to build networks through
informal interactions.
The following section offers a strategy you can use or adapt. You could also
tap into existing support groups and engage their support to invite medical
specialists and senior community representatives to speak at their meetings.
It is worth trying a number of different strategies until you find the one that
works for your community.
The team and the presentations
Approach your contacts again to select six speakers – two for each forum.
You should aim to put together one academic speaker, one community
speaker and one activity (‘walking the talk’) for each forum. The speakers we
had participate in our forums were:
• YWCA
• Heart Foundation
• speakers from academic backgrounds discussing emerging issues in
health care.
22
Training group leaders how to include people with chronic disease in community activities : a training toolkit
In preparing these forums it is essential to consider who has credibility in the
local community. Also, what is the hook to get people to attend (other than
the free muffins)? Keep in mind that the intended audience for these forums
are health professionals, people with a chronic disease, and community
workers who participated in the workshop.
Activity
A key part of these forums is the activity and networking opportunity in the
second half of the session. This activity helps memory and to transfer the
content of the speeches to real life. The activities that we had as part of our
forums were:
• a mall walk
• a participation in a Heart Moves session
• others – suggestions are lawn bowls, group singing or any other physical
activity suitable for people with chronic disease.
Final hints and reminders:
• Have a snack and tea/coffee provided.
• Allow some time for networking around the presentations and activity.
• Don’t forget to ask permission if you are using a space like a shopping mall.
Advertising the forum
Advertising the forum needs to be done ahead of time. Distribute flyers
around health facilities, to other research schools, support groups and
community activities. An example of what to include in the advertisement
flyer can be found on the next page.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 23
Forum
Walking the Talk on self-management
of chronic disease
Guest speakers:
T
R
• Assoc Prof Paul Dugdale, Director, ANU Centre for Health Stewardship
E
V
• Rebecca Vassarotti, Executive Director, YWCA Canberra
• Tim Gavel from the ABC
D
A
E
Y
L
L
P N
M
O
A
Prof Dugdale will talk about the changing approach to chronic disease that
is going on in our health system. Changes include recognising patients-asprofessionals, more self-management and building community support for
people to get out and about with their chronic disease.
Rebecca Vassarotti will talk about welcoming people with chronic disease into
community activities.
Tim Gavel will then lead the Mall Walk where you will the chance to experience
a simple and effective way to get people out to enjoy social and physical
activities.
S
When: 12 – 2pm on Fri 30 April 2010
Where: Rm 8 Griffin Centre, Genge St, Canberra City
Mall Walk starts and finishes at the Griffin Centre
We will provide tea, coffee and a light snack.
You are welcome to bring your lunch and please wear comfortable shoes to ‘walk
the talk’.
Further details please contact xxxx
24
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Resources for photocopying
The following is a list of the resources (found on pages 26–37) for use when
preparing your workshop, evaluation and ongoing education forums. They
may be adjusted to better suit your community. Please note the copyright
conditions on these pages before distributing them.
FOR THE WORKSHOP FACILITATOR:
1. Project Timeline 26
2. Interprofessional Reference Group Contact List 27
3. Agenda for Interprofessional Reference Group Meetings 28
4. Workshop Session Outline 29
FOR THE PRESENTERS AND SCRIBES:
5. Guide for Round-Table Discussions 30
FOR THE PANELLISTS:
6. Panel Questions 32
FOR THE PARTICIPANTS:
7. How to Include People with Chronic Disease in Community Activities –
Where to From Here? 33
8. Workshop Evaluation Sheet 34
FOR FACILITATOR:
9. Agenda for Evaluation Lunch 36
10. Session Outline for Ongoing Education Forums 37
Training group leaders how to include people with chronic disease in community activities : a training toolkit 25
26
1
2
3
4
5
6
7
8
WEEK
9
10
11
12
13
14
15
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian National University, College of Medicine Biology and Environment,
December 2010. May be reproduced if this notice appears.
Deliver forum
Advertise forum
Prepare forum speakers and
activities
Analyse feedback
Deliver evaluation lunch
Prepare and advertise
evaluation lunch
Evaluate participant feedback
Deliver the workshop
Advertise the workshop
Prepare workshop facilities and
resources
Prepare workshop personnel
Tailor the package to your
community
Interprofessional reference
group meeting
Build interprofessional
reference group
Approach contacts to develop
project support
ACTIVITY
Resource for facilitator
Project timeline
16
RESOURCE FOR PHOTOCOPYING
Training group leaders how to include people with chronic disease in community activities : a training toolkit
RESOURCE FOR PHOTOCOPYING
Interprofessional reference group contact list
Resource for facilitator
Medical School
Name/Organisation
Email
Phone
Contact
Result
Contact
Result
Contact
Result
Head of Cardiology
Public Health
Primary Health Care
Other tertiary institutions
Health Services
Name
Email
Phone
Local Health Services
Gyms in the area
Division of General Practice
Communit y Organisations
Name
Email
Phone
Local Council
Heart Foundation
Local Community Centre
Diabetes Australia
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian
National University, College of Medicine Biology and Environment, December 2010. May be reproduced if this notice appears.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 27
28
Workshop
Panel questions
Conclusion
20
20
10
Panel Questions (copy is on page 32)
Workshop Session Outline
(copy is on page 29)
How to Include People with Chronic
Disease in Community Activities for
each participant
Resources needed
Thank the volunteers for their participation.
Do you feel that these are relevant issues for chronic disease self-management and access to
local services?
Who would be suitable presenters and panellists?
What would you change and what would you keep?
Do you have the resources, including people to implement the workshops?
Apart from what is in the guide, what else do group leaders need to know to be able to include
people with chronic disease?
What works well and what doesn’t work in your area?
What barriers and gaps in services exist in managing chronic disease?
What self-management strategies do people with chronic disease in your community need to
know about?
Do you agree or disagree with the information in the guide?
Ice breaker activity (for example, name one other organisation that helps you do your
job well?)
Ask each participant their name and agency.
Specific questions and outcomes
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian National University, College of Medicine Biology and Environment,
December 2010. May be reproduced if this notice appears.
Guide
Introductions
10–15
45
Topic
Time
(mins)
Resource for facilitator
Agenda for interprofessional reference group meetings
RESOURCE FOR PHOTOCOPYING
Training group leaders how to include people with chronic disease in community activities : a training toolkit
RESOURCE FOR PHOTOCOPYING
Workshop session outline
Resource for facilitator
9.30
Welcome and introductions
9.40
Background to project
10.00
15 min x 5 tables – round-robin table discussion on:
1. Overview of chronic diseases and co-morbidities and danger signs. How do we know when someone is
in trouble?
2. Challenges and strategies to support the inclusion of people with chronic diseases into physical and
social activities.
11.15–11.30
Presenters
• Diabetes
• Heart failure
• COPD
• Musculoskeletal
• Depression
11.15–11.30
Morning tea
11.55
Presenters and table scribes to reflect on themes
12.00
Report back to large group
12.30
Lunch
1.30
Question and Answer panel discussion (list speakers and topics here)
2.30
General discussion with large group
2.45
Where to from here? How do we implement the knowledge from today?
3.15
Conclusion – Evaluation and thank you!
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Training group leaders how to include people with chronic disease in community activities : a training toolkit 29
RESOURCE FOR PHOTOCOPYING
Guide for round -table discussions (p. 1 of 2)
Handout for presenters and scribes
Aim: To provide a small group discussion on the three chronic diseases and two co-morbidities:
• Diabetes
• Heart failure
• Lung disease
• Depression
• Musculoskeletal
Implementation: Five tables of between six to eight participants will be organised around the room.
Each table will be numbered from one to five.
Each table will have a presenter representing a different chronic disease or co-morbidity and table scribe.
Please make sure you are not sitting at a table with another presenter.
Presenters will move around the room visiting all five tables at 15-minute intervals (time is allowed for
moving, settling etc.).
You will be given time calls through out the 15-minute session to let you know when to start to wrap up
the discussions.
When it is time to move, please progress to the next table in numerical order. For example, if you started at
table 4, please move to table 5, then table 1 etc.
Presenters: (list names adjacent to the disease)
• Diabetes
• Heart failure
• COPD
• Musculoskeletal
• Depression
CONTINUED OVER PAGE >>
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National University, College of Medicine Biology and Environment, December 2010. May be reproduced if this notice appears.
30
Training group leaders how to include people with chronic disease in community activities : a training toolkit
RESOURCE FOR PHOTOCOPYING
Guide for round -table discussions (p. 2 of 2)
Handout for presenters and scribes
You will have 15 minutes to cover three main subjects:
1. Overview of your topic and danger signs – how do we know when someone is in trouble?
2. Challenges faced by people with the chronic disease you are talking about when they want to be
involved in physical or social activities.
3. Strategies for the community sector to support people with chronic disease to overcome
these challenges.
Your table scribe will be on hand to take notes and help keep people ‘on topic’.
Table scribes
(List names here)
Your help is needed to record the discussion at each table and where necessary, remind the presenter and
participants of the three relevant areas we are here to discuss!
At the end of the five table round-robins, you will have a few minutes to pull out dominant themes from
the discussion to report back to the large group.
I would like to have the record of the discussion back as I will use it check we are covering the information
participants need.
Thank you to all involved! Your support for the project is very much appreciated.
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National University, College of Medicine Biology and Environment, December 2010. May be reproduced if this notice appears.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 31
32
Common to all
Diabetes
Heart failure
Lung disease
Musculoskeletal
Depression
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian National University, College of Medicine Biology and Environment,
December 2010. May be reproduced if this notice appears.
What strategies should group leaders consider to support
participants with chronic disease?
What danger signals should group leaders watch for?
• What should it cover?
Should there be written communication from the
participant’s health professional?
• Apart from universal duty of care considerations
What ‘duty of care’ does a group leader have?
What should a group leader know when working with a
participant with chronic disease?
Questions for panel to address concerns and barriers for
community organisations
Handout for panellists
Panel questions
RESOURCE FOR PHOTOCOPYING
Training group leaders how to include people with chronic disease in community activities : a training toolkit
RESOURCE FOR PHOTOCOPYING
How to include people with chronic disease in community
activities – Where to from here?
Handout for participants
Thinking about your current practice…
Q1. What do you already do well?
Q.2 What can you change?
Q.3 What can you implement immediately?
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National University, College of Medicine Biology and Environment, December 2010. May be reproduced if this notice appears.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 33
RESOURCE FOR PHOTOCOPYING
Workshop Evaluation sheet (p. 1 of 2)
Handout for participants
Q.1Do you think you have increased your knowledge or skills to support participants with chronic disease?
Please circle – 1 for no increase to 4 for outstanding increase!
1
2
3
4
no increase
little increase
some increase
outstanding increase
Q.2 What was the best part?
Please tick a box
Overview of the chronic diseases (morning session) Question & Answer panel (just after lunch) Where to from here? (small group work at end of session) Lunch Q.3 What was the most useful thing you learnt today?
Q.4 What practical changes will you make as a result of today’s session?
Q.5How would you rate the presentations?
Please circle – 1 for poor to 4 for outstanding!
1
2
3
4
poor
okay
very good
outstanding
CONTINUED OVER PAGE >>
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National University, College of Medicine Biology and Environment, December 2010. May be reproduced if this notice appears.
34
Training group leaders how to include people with chronic disease in community activities : a training toolkit
RESOURCE FOR PHOTOCOPYING
Workshop Evaluation sheet (p. 2 of 2)
Handout for participants
Q.6How would you rate the written material?
Please circle – 1 for poor to 4 for outstanding!
1
2
3
4
poor
okay
very good
outstanding
Q.7 What else should be included in the workshop or guide?
Q.8 What should be left out of the workshop or guide?
Q.9About you (optional)
What sort of group activities do you run?
Q.10Name and organisation (optional)
Thank you for your feedback. It is important to us to help improve the delivery and resources of the
education package.
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian
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Training group leaders how to include people with chronic disease in community activities : a training toolkit 35
36
Introductions
Round-robin discussion:
‘Impressions of the
workshop’
Anonymous
sentence stems
Conclusion
10–15
30
30
10
• Ask each participant their name and agency.
Resources – Nil
Activity – Facilitator to welcome.
Examples of sentence stem questions are:
Resources – Sentence stem questions
written at top of separate page (7 pages in
total) and pens.
Activity – Hand sentence stem questions
around the table. Ask participants to
complete the sentence below the question;
fold the paper to hide their response, yet
leave the question visible. When finished,
they pass it on to their neighbour. (It
looks like you are making a paper fan!)
Check each participant has completed all
seven questions.
Thank the volunteers for their participation.
7. In general my thoughts about the workshop were…
6. Something that could be improved was…
5. A good thing about the panel (PM session) was…
4. Something that could be improved was…
3. A good thing about the round table (AM session) was…
2. Something I’d like to improve is…
1. Something I did well was…
Ask each participant to share their impressions of the workshop day.
Resources – Notepaper and pen.
Activity – Facilitator takes notes as
participants comment.
• Initiate an ice-breaker activity.
Specific questions
Resources and activity
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian National University, College of Medicine Biology and Environment,
December 2010. May be reproduced if this notice appears.
Topic
Time
(mins)
Resource for facilitator
Agenda for evaluation lunch
RESOURCE FOR PHOTOCOPYING
Training group leaders how to include people with chronic disease in community activities : a training toolkit
Training group leaders how to include people with chronic disease in community activities : a training toolkit Welcome and introduction
Medical academic:Updates on chronic disease management and self-management
Discussion with questions from the audience
Senior community representative:
Inclusion of those with chronic disease
Discussion with questions from the audience
Networking opportunity with light refreshments
Activity led by community group leader
Closing and thanks
12 noon
12:05
12:25
12:30
12:50
1:00
1:15
1:45
Facilitator
Group leader
Facilitator
Senior community representative and facilitator
Senior community representative
Medical academic and facilitator
Medical academic
Facilitator
Responsibility
© Copyright of the Centre for Clinical Governance Research in Health, University of New South Wales and the Centre for Health Stewardship, Australian National University, College of Medicine Biology and Environment,
December 2010. May be reproduced if this notice appears.
Activity
Time (pm)
Resource for facilitator
Session outline for ongoing education forums
RESOURCE FOR PHOTOCOPYING
37
General information and helpful resources
Facilitators’ helpful hints
Facilitation is different to leading or teaching.
1. Facilitation involves valuing each person’s point of
view in the room and setting aside your
personal opinions.
2. Facilitation requires a high degree of self-awareness
and insight, particularly around your vulnerabilities and
issues close to your heart.
3. Be the ring master, not the star attraction.
Key points for the facilitator:
`` Know the topic.
`` Keep people on track.
`` Know and stick to timeframes.
`` Set boundaries around behaviour.
`` Be yourself.
`` Understand what you want to come out of the day.
Helpful tips:
• Expect the unexpected during the workshop. Try and plan as much as you
can to help you with things that do not run quite as you expected.
• Be careful with your assumptions of what people already know. Encourage
‘silly’ questions and cover the basic information.
• Be assertive with presenters and participants to ensure timeframes and
topics are adhered to, explaining there is a lot of information that needs to
be discussed.
38
Training group leaders how to include people with chronic disease in community activities : a training toolkit
• Beware of decisions by decibels – people who dominate discussions may
sway opinions and prevent the space for alternate points of view.
• Be very open to reading the different power dynamics and mood in
the room.
• You don’t have to be the expert on the topic, although a good
understanding is vital.
• Use the introductions at the beginning of the day to get a general feel
for people (e.g. which participants stick to the directions, who appears
nervous/confident etc.).
• Natural humour builds trust within the group, but be careful that it is
appropriate for the participants.
How do you get quiet people to talk?
• Some people are more confident in small group exercises and discussions,
so plan some small group tasks.
• Go round the room requesting that you want to hear from everybody
(however also providing the right to pass).
How do you quieten the more dominant voices?
• Firstly acknowledge their passion and concerns, then express that there is
a lot to get through today and that we need to hear from everyone.
• Make a note of their topic and suggest that you discuss this further with
them in the break, or that if there is time later you can return to them.
Remember: This is vital to ensure you retain control of the proceedings and to
keep the group members engaged.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 39
Consumer and health professional contacts
Access to current information is important if community organisations are to
provide relevant services and activities to people living with a chronic disease.
In addition to the contacts provided throughout the guide, a list of the
consumer and health professional organisations is provided here that may be
of further assistance to you.
Australian Council of Social Services http://www.acoss.org.au/
Australian Lung Foundation http://www.lungfoundation.com.au/
National Divisions of General Practice http://www.gp.org.au/
Arthritis Australia http://arthritisaustralia.com.au
Asthma Foundation http://www.asthmaaustralia.org.au/
Australian Institute of Health and Wellbeing http://www.aihw.gov.au/
Carers Australia http://www.carersaustralia.com.au/
COTA – Council on the Ageing http://www.cota.org.au/
Diabetes Australia http://www.diabetesaustralia.com.au/
DoHA – Department of Health and Ageing http://www.health.gov.au/
HACC – Home and community care program http://www.health.gov.au/
internet/main/publishing.nsf/Content/hacc-index.htm-copy3
HealthInsite (Department of Health and Ageing)
http://www.healthinsite.gov.au/
Heart Foundation Australia http://www.heartfoundation.com.au
Medical Schools in Australia
http://www.australian-universities.com/schools/medical/
40
Training group leaders how to include people with chronic disease in community activities : a training toolkit
3 references
ACT Health. 2008. ACT Chronic Disease Strategy 2008–2011. Canberra:
ACT Health.
Australian Institute of Health and Welfare. 2006. Chronic Diseases and
Associated Risk Factors in Australia, 2006. Canberra: Australian Institute of
Health and Welfare.
———. 2007. Chronic Diseases and Associated Risk Factors in Australia.
Canberra: Australian Institute of Health and Welfare.
———. 2009. Chronic Diseases. Accessed 12 October 2009:
<http://www.aihw.gov.au/cdarf/index.cfm>.
Department of Health and Ageing. 2005. National Chronic Disease Strategy.
Canberra: Department of Health and Ageing.
The Flinders Model. 2008. Chronic Condition Self-management Education
and Training Manual. Melbourne: Flinders Human Behaviour and Health
Research Unit, Flinders University.
———. 2009. Physical Activity Guidelines for Adults. Accessed 30 October
2009: <http://www.health.gov.au/internet/main/publishing.nsf/Content/
health-pubhlth-strateg-phys-act-guidelines>.
Stanford Patient Education Research Center. Chronic disease selfmanagement leader’s manual. Palo Alto, CA: Stanford Patient Education
Research Center, 1993.
World Health Organisation. 2009. Global Strategy on Diet, Physical Activity
and Health. Accessed 30 October 2009:
<http://www.who.int/dietphysicalactivity/pa/en/index.html>.
Training group leaders how to include people with chronic disease in community activities : a training toolkit 41
4 the guide
The next section of this package contains a copy of the guide How to Include
People with Chronic Disease in Community Activities that can be copied and
handed out to community group leaders as a stand-alone resource. It contains
essential information on common chronic disease and co-morbidities, as
well as other information useful when including people with chronic disease
in community activities such as duty of care, privacy, first aid and discussing
chronic disease with a group activity participant.
42
Training group leaders how to include people with chronic disease in community activities : a training toolkit
How to include people
with chronic disease in
community activities
Susan Abbott, Stefan Baku, Paul Dugdale, David Greenfield
guide
Acknowledgements
The development of this package was funded by the Commonwealth Department of
Health and Ageing as an Interprofessional Learning in Primary Health Care to Encourage
Active Patient Self-Management of Chronic Disease as part of an Australian Government
Inter-professional Learning Chronic Disease Self-Management Demonstration project.
The Project was led by the Centre for Clinical Governance Research in Health, AIHI, UNSW,
in partnership with the Centre for Health Stewardship ANU, the Australian Capital Territory
(ACT) Division of General Practice and ACT Health. The Chief Investigators of the project
were Dr David Greenfield (UNSW), Associate Professor Paul Dugdale (ANU/ACT Health),
Dr Jo Travaglia (UNSW), Dr Peter Nugus (UNSW) and Professor Jeffrey Braithwaite. Project
staff were Ms Susan Abbott (ANU) and Ms Bev Hayhurst (ACT Division of General Practice).
Research assistance was provided by Ms Tanya Lawlis (ANU) and Ms Vineeta Kurien (ANU).
The medical content of the guide was reviewed by the consultants of ACT Health and
the ANU Medical School: Professor Leonard Arnolda (Cardiology), Associate Professor
Christopher Nolan (Endocrinology), Dr Alexandra Hammett (Thoracic Medicine), Dr Rajeev
Kumar (Psychiatry) and Dr Ling San Wong (Rheumatology).
Input to the development and content of the guide was provided by staff from organisations
and individuals in the ACT. The organisation were: the ACT Division of General Practice;
ACT Health; ACT Human Rights Commission; Arthritis ACT; Asthma Foundation ACT; Carers
ACT; Diabetes Australia ACT; Disability ACT; Heart Foundation ACT; OzHelp Foundation;
Parkinson’s ACT; SHOUT Inc; Southern Cross Health Club; YMCA of Canberra; YWCA of
Canberra; and volunteers from Health Care Consumers of the ACT and the ACT Chronic
Conditions Alliance.
This education package is supported by funding from the Department of
Health and Ageing through the Sharing Health Care Initiative.
© Copyright of the Centre for Clinical Governance Research in Health, University of
New South Wales and the Centre for Health Stewardship, Australian National University,
College of Medicine Biology and Environment, December 2010. May be reproduced if this
notice appears.
ISBN 9780980728460 (print)
9780980728460 (ebook)
For further information please contact <[email protected]>.
Contents
Acknowledgements
ii
Abbreviations iv
Useful terms and definitions
v
1
Introduction 1
2
Information on common chronic diseases and co-morbidities 3
Diabetes 4
Heart conditions 7
Chronic obstructive pulmonary disease 11
Musculoskeletal conditions 13
Depression 15
3
4
5
Duty of care 18
Privacy 20
Discussing chronic disease with a group activity participant 22
6
First aid 25
References 26
7
How to include people with chronic disease in community activities : a g u i d e iii
Abbreviations
ACTDGP
Australian Capital Territory Division of General Practice
AIHW
Australian Institute of Health and Welfare
Australian National University
ANU
CCGR
Centre for Clinical Governance Research in Health
COPD
Chronic obstructive pulmonary disease
IPCP
Interprofessional collaborative practice
IPL
iv
Interprofessional learning
This symbol highlights first aid information in the text.
How to include people with chronic disease in community activities : a g u i d e
Useful terms and definitions
Chronic
disease
A ‘term applied to a diverse group of diseases that tend
to be long-lasting and persistent in their symptoms or
development’ (AIHW 2006: 71). The main characteristics of
a chronic disease as outlined by AIHW (2009) include:
• complex causality
• multiple risk factors
• long latency periods
• functional impairment or disability
usually being confined to non-communicable diseases.
When two or more diseases are present in an individual at
the same time (AIHW 2007). The diseases can either have no
association with each other or, more commonly, be directly
related to each other. Examples include cardiovascular
disease and diabetes, or health failure and depression.
Co-morbidity
Group leaders can be fitness instructors, experts in a specific
activity and volunteers, qualified and unqualified.
Group
leaders
The responsibilities of a group leader include:
• having knowledge of the activity they are conducting
• being aware of the special needs of participants
• undertaking duty of care
• providing an atmosphere that allows open communication
between members and between the group leader
and members.
‘… learning arising from interaction between members of two
or more professions’ (Freeth et al. 2005).
How to include people with chronic disease in community activities : a g u i d e Inter–
professional
Learning
v
Useful terms and definitions CONTINUED
Physical
activity
The World Health Organisation (2009) has defined physical
activity as ‘any bodily movement produced by skeletal
muscles that requires energy expenditure’. Examples of
physical activities include swimming, walking, yoga, exercise
groups and gardening.
The National Physical Activity Guidelines for Australians
recommend that adults should ‘accumulate at least 30
minutes of moderate intensity physical activity on most,
preferably all, days’ (DoHA 2009). Such activities will result in
a noticeable increase in heart rate and breathing.
The ‘active participation by people in their own health care’
(ACT Health 2008: 16), with support when needed from the
health system. A person who is able to self-manage their
condition understands their health condition, is able to
make informed decisions about treatment, participate in
the decision-making in relation to continuing care, have and
follow a health care plan, monitor changes and are able to
respond to changes through a pre-developed action plan
(ACT Health 2008).
vi
How to include people with chronic disease in community activities : a g u i d e
Selfmanagment
1 Introduction
Background
This guide is designed for community group leaders so they can better
support people who are clearly affected by chronic disease by helping them
participate in physical and social group activities.
NOTE: Terms that are
explained in the Useful
terms and definitions
section (pages v–vi) look
like this in the text.
More and more people are living with chronic diseases such as diabetes, heart
failure and/or lung disease. They may also have other co-morbidities such
as depression or musculoskeletal conditions. To maintain the best possible
quality of life, people with chronic disease need to engage in physical and
social activities of their choice. Involvement in activities is part of a holistic
approach to self-management and benefits the physical and mental
wellbeing of those involved.
Community organisations can help people to manage their chronic diseases
by welcoming their participation in community group activities. Physical
and social activities in the community are very diverse and can range from
a painting group, lawn bowls or volunteering at a local cultural centre, to
walking groups and exercises classes in a local community venue or gym.
Purpose of this guide
This guide provides community group leaders with useful information
and strategies to assist them in welcoming people with chronic disease to
their activities.
Group leaders may be enthusiasts in their specific activity. They may be fitness
instructors or committee members, paid or voluntary, qualified or unqualified.
How to include people with chronic disease in community activities : a g u i d e 1
The guide has been divided into numbered sections that provide the
reader with:
1. An introduction to explain the purpose of the book.
2. A brief overview of the common chronic diseases and co‑morbidities.
3. Duty of care considerations, in particular those relevant to community
organisations, including a checklist.
4. Information on the Privacy Act, with issues that impact on community
organisations, including a checklist.
5. Suggestions on discussing chronic disease with group
activity participants.
6. First aid information, with suggestions for a first aid kit for groups that
include people with chronic disease.
7. References.
2
How to include people with chronic disease in community activities : a g u i d e
2 Information on common chronic
diseases and co-morbidities
This section provides information on three high-prevalence chronic diseases
in Australia:
• Diabetes
• Heart conditions
• Chronic obstructive pulmonary disease (COPD)
And two co-morbidities to chronic disease in Australia:
• Musculoskeletal conditions
• Depression
The information provides a basic understanding of the disease, factors that
your community organisation needs to consider when participants with
chronic disease participate in activities, and what to look out for if a person
participating in your organisation’s activities becomes unwell.
The following sections provide information on topical issues identified by
community organisations when participants with chronic disease are involved
in their activities. The checklists are to be used as a reminder and as general
information. They are not intended to replace the resources and expertise
provided by medical practitioners, health professionals, consumer health
representative organisations or legal teams.
How to include people with chronic disease in community activities : a g u i d e 3
Diabetes
What is diabetes?
Diabetes is a disorder of blood sugar levels.
People with diabetes cannot regulate their
blood sugar levels appropriately.
High blood sugar levels can cause tiredness,
thirst, frequent urination, dizziness, and
occasionally loss of consciousness (in severe cases).
diabetes treatment
The objective of diabetes treatment is to regain control of blood sugar levels
and to prevent long-term complications.
The treatment includes:
• Diet modification, exercise and medication (usually tablets, but people with
diabetes may be required to use insulin injections).
• Smoking cessation – diabetes multiplies the risks from smoking, so it is
very important for people with diabetes who smoke to give up.
Long-term complications
Prolonged high blood sugar levels cause damage to many parts of the body.
In the long term, diabetes can cause:
• Eye disease (potentially leading to blindness)
• Kidney disease (potentially leading to kidney failure)
• Diseases of the blood vessels in the heart
(potentially leading to a heart attack)
• Diseases of the blood vessels in the brain
(potentially leading to a stroke)
• Diseases of the nerves and blood vessels in the extremities (potentially
leading to foot and leg ulcers and amputation)
4
How to include people with chronic disease in community activities : a g u i d e
Diabetes
What factors need to be considered for a person
with diabetes?
Things to consider for a person with diabetes:
• Questions to ask:
›› Do you take insulin? People who take insulin may need a private space
to administer it. They should be encouraged to not miss doses, even if
no private space is available.
›› How do you dispose of the sharps? People with diabetes may carry a
sharps container with them or dispose of sharps in a public lavatory.
Do you take
insulin?
›› Do you use an insulin pump?
›› Will you need to eat? People with diabetes should be able to eat
whenever they need to.
• People with diabetes should exercise at their own pace.
Will you
need to eat?
What are the gener al signs to look for?
The general signs to look out for when a person has diabetes include:
Low blood sugar levels (hypoglycaemia or ‘hypo’)
• Why does it occur? A ‘hypo’ can occur if a person with diabetes eats too
little or misses a meal, uses too much medication, or partakes in activity
without having eaten enough beforehand.
• Features include sweating, trembling, nausea, feeling hungry, feeling
anxious, and feeling weak. Some diabetics are initially unaware of a ‘hypo’.
• Response:
›› Take carbohydrates (glucose tablets, 6–7 jelly beans or
half a glass of fruit juice).
What’s
a HYPO?
›› See their diabetes educator before the next session.
How to include people with chronic disease in community activities : a g u i d e 5
Diabetes
Very high blood sugar levels (hyperglycaemia)
• Why does it occur? Common causes of high blood sugar levels include
missed doses of diabetic medication, illness, infection, stress, tiredness,
too many carbohydrates, and certain medications that increase blood
sugar levels.
• Features include feeling excessively thirsty, frequently passing large
volumes of urine, tiredness, blurred vision and weight loss.
• Response:
›› Drink extra liquids (water or other sugar-free drinks).
›› Monitor their sugar levels regularly – if levels are too high seek
medical advice.
Diabetic ketoacidosis
What’s
DKA?
Diabetic ketoacidosis (DKA) is a complication of hyperglycaemia and
occurs nearly exclusively in Type 1 diabetes. Features additional to those in
hyperglycaemia may include a rapid heart rate, an acetone smell on their
breath, confusion and coma. DKA is a medical emergency and requires
immediate medical attention.
NOTE: If you are concerned at any time about the person’s condition
call 000 for emergency services to attend immediately.
Further
information
Diabetes ACT
http://www.diabetes-act.com.au/site/
Diabetes Australia
http://www.diabetesaustralia.com.au/
Telephone: 1300 136 588
6
How to include people with chronic disease in community activities : a g u i d e
Heart conditions
Chronic heart conditions
include heart failure, angina
and coronary heart disease.
What is heart failure?
Heart failure is a condition in which the heart muscles become weakened
and the heart is no longer effective at pumping blood around the body.
It can be caused by conditions that have impaired the normal functioning
of the heart including coronary heart disease, high blood pressure and
heart attack. Deterioration in heart functioning usually occurs over many
years. However, it can also happen suddenly. Symptoms such as chronic
tiredness, reduced capacity to exercise and shortness of breath can be
seen in people with severe heart failure (National Heart Foundation of
Australia 2008a; AIHW 2003).
What are some of the risk factors?
The risk factors for heart failure include:
• coronary heart disease
• high blood pressure
• being overweight
• diabetes.
High blood pressure
Blood pressure is the pressure of the blood as it moves though the arteries.
When the blood pressure is consistently high, damage can occur to the heart,
brain and other organs (Heart Foundation 2008c). High blood pressure can be
controlled either by medication or through lifestyle changes.
How to include people with chronic disease in community activities : a g u i d e 7
heart conditions
Avoid
extreme
temperatures
Avoid lifting
heavy weights
What factors need to be considered for a person
with heart failure?
The following factors need to be considered by the community organisation
when a person with heart failure is participating in physical activity:
• Avoid temperature extremes – hot or cold.
• Consider the usual level of physical activity and do not increase the level
too quickly.
• Avoid lifting heavy weights, as this can raise blood pressure and place strain
on the heart.
What are the gener al signs to look for?
The general signs to look out for when a person with heart failure is not well
include:
• breathlessness
• feeling faint or has spells of dizziness
• cold sweat
• cold limbs – swelling in limbs/ankles
• tiredness (as there is less blood going to the organs)
• weakness
• heart palpations.
NOTE: Patients with heart failure may have symptoms referrable to their
underlying heart disease (e.g. coronary heart disease – see below).
8
How to include people with chronic disease in community activities : a g u i d e
heart conditions
What is coronary heart disease
with angina?
In coronary heart disease, the blood vessels in the heart are clogged
and narrowed. This will lead to a decreased supply of blood, nutrients
and oxygen to the heart muscle. This leads to the typical chest pain
symptoms of coronary heart disease and is known as angina.
If the blood supply is blocked significantly, a life-threatening heart
attack can occur. People with coronary heart disease are more at risk of
developing a heart attack. The damage may not be reversible.
What are the gener al signs to look for?
The general signs to look out for when a person with coronary heart disease is
not well include:
• pain in the chest (especially when brought on by exertion) – if the pain lasts
longer than 10 minutes, action is required (call an ambulance)
• feeling faint or has spells of dizziness
• breathlessness
• cold sweat
Watch out for…
pain in the chest, feeling
faint or dizzy spells,
breathlessness, cold sweat
What are the signs to look out for when a
person is having a heart attack?
Please note that the warning signs and symptoms for a heart attack vary
from person to person. They can develop over a number of minutes and
become worse or come on suddenly. Usually the symptoms last for more than
10 minutes. The following plan, provided by the Heart Foundation ACT, details
the signs and symptoms of a heart attack and the plan of action.
How to include people with chronic disease in community activities : a g u i d e 9
heart conditions
Reproduced with permission. © 2009–2010
National Heart Foundation of Australia.
No further reproduction allowed.
Further
information
The National Heart Foundation of Australia
http://www.heartfoundation.com.au
Heart Health Information Service
Telephone: 1300 36 27 87
10
How to include people with chronic disease in community activities : a g u i d e
Chronic obstructive pulmonary disease
What is chronic obstructive pulmonary
disease (COPD)?
Chronic obstructive pulmonary disease (COPD) is a chronic airway
disease. This term is used to describe a person with chronic bronchitis,
emphysema, or – in most cases – a combination of both.
The most common cause of COPD is exposure to cigarette smoking for
many years. The particles and substances in smoke will then damage the
airways and lungs. Other less common causes include environmental or
genetic factors.
COPD and asthma
COPD and asthma are two different diseases with similar symptoms and
treatments. In rare cases, people may have both asthma and COPD.
Symptoms of COPD
The main symptoms of COPD are:
• shortness of breath (during activity or even at rest)
• coughing up phlegm (mucus)
• other non-specific symptoms such as fatigue.
The symptoms may be worse in the morning.
What factors need to be considered for
a person with COPD?
Customise the
exercise
environment!
Reduce
exposure
to colds
There are a number of factors that need to be considered by community
organisations when conducting activities for people with COPD
(The Australian Lung Foundation 2009):
• Customise the exercise environment – reduce or eliminate hills or stairs.
• Reduce exposure to colds and flu-like infections.
• Choose activity that is realistic for the individual – gradual exercise that
builds up their strength and fitness.
How to include people with chronic disease in community activities : a g u i d e 11
CHRONIC OBSTRUCTIVE PULMONARY DISEASE
• Reduce the presence of pollens, moulds, animal hairs, dust mite and/or air
pollutants (e.g. cigarette smoke and paint).
When a person with COPD participates in community organisation activities, it
is not unusual for them to use the following:
• a puffer or other medications to improve their shortness of breath
• an oxygen bottle if their disease is severe.
What are the gener al signs to look for?
If a person with COPD is feeling unwell, they may have an increase in the
severity of their normal symptoms. This includes at least one of the following
main symptoms:
• increased shortness of breath (they may appear puffed)
• increased frequency and severity of coughing
• increased phlegm production, with a change in volume and/or character.
If the person becomes uncomfortably short of breath, they may need to sit
out from the activity until they feel confident to rejoin it.
Further
i n f o r m at i o n
Lung Foundation
http://www.lungfoundation.com.au
Lung Foundation: Breathe Easier – Your Guide to COPD
http://www.lungfoundation.com.au/content/view/78/83/
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How to include people with chronic disease in community activities : a g u i d e
Musculoskeletal conditions
How do musculoskeletal conditions affect
people with chronic diseases?
Many people with a chronic disease also have problems with mobility due
to their musculoskeletal system. This could be due to old injuries, new
injuries, inflammation of the joints (‘arthritis’), wear and tear of the joints,
and so on.
This can make activities more difficult, slow people down, or cause pain.
Paradoxically, many people with musculoskeletal conditions need to keep
moving to prevent the condition worsening (‘use it or lose it’).
What factors need to be considered for a person
with arthritis?
It is not recommended that people with arthritis participate in
activities where:
• high impact occurs
• force is exerted through the joints
• joints are forced into unsafe positions.
The following factors need to be considered by a community organisation
when people with arthritis participate in their activities:
• Provide appropriate warm-up and cool-down with stretches for the activity.
• Is there good transport to the venue?
• Is there parking close to the venue
• Is there adequate access into the building (stairs or elevator)?
• Avoid prolonged sitting periods, as this can lead to stiffness in some people
with arthritis.
How to include people with chronic disease in community activities : a g u i d e 13
musculoskeletal conditions
Arthritis as a co -morbidity
The risk of having a fall is increased in people who have arthritis (Arthritis
Australia 2009). This risk is further increased in the person who has both
arthritis and a chronic disease. This is due to people with multiple conditions
experiencing:
• decreased strength
• diminished proprioception (the ability to sense where your body parts are)
• poor balance
• increased levels of pain.
What do you do if someone injures their bones, joints, or muscles?
• Follow the RICE acronym:
›› Rest (rest the affected limb)
›› Ice (apply ice intermittently to reduce swelling)
›› Compression (compress the affected area with an elastic bandage to
reduce swelling)
›› Elevation (elevate the affected limb to reduce swelling).
• Seek medical attention as soon as possible.
Further
i n f o r m at i o n
Arthritis Australia
http://www.arthritisaustralia.com.au
Telephone: 1800 011 041
Australian Rheumatology Association
http://www.rhematology.org.au
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How to include people with chronic disease in community activities : a g u i d e
Depression
What is depression?
Depression is a mood disorder where feelings of sadness, loss of interest,
hopelessness and unhappiness are experienced for extended periods of
time. These feelings consume the everyday life of the person, resulting in
them withdrawing from life and affecting their ability to function in day-today activities.
There is no single causal factor for depression. Triggers of depression
vary from person to person and can include a significant event or incident,
such as illness, death of a close family member or friend, or a relationship
breakdown. Depression can also be triggered by a life situation, such as
after childbirth. However, depression can also occur in the absence of
any triggers.
Depression as a co -morbidity
Having a chronic physical illness puts a person at greater risk of developing
depression. Depression is often associated with people who have diabetes,
have suffered a heart condition, or have arthritis (AIHW 2009; OZHELP
Foundation 2009). Chronic disease can make the person feel that their life
has changed and that limitations on activities have now been placed on
them. They may fear what the future holds. In addition, there may be a direct
physiological effect in the brain from the primary medical illnesses such as
stroke or dementia that can lead to depression. Co-morbid depression in
an individual with a chronic medical condition can worsen the course and
outcome of that medical condition.
The symptoms of chronic physical illnesses, as well as some types of
treatments, can result in major lifestyle changes. These may cause severe
disruptions to a person’s work or social life and create financial difficulties.
For people with a chronic illness, depression makes recovery more difficult.
It can make it harder for people to find the energy to eat healthily, exercise
and to take medication regularly.
How to include people with chronic disease in community activities : a g u i d e 15
depression
What factors need to be considered for a person
with depression?
Having a chronic physical illness can be isolating – depression can increase
this isolation even more. It has been estimated that one-third of people with
chronic medical conditions are clinically depressed. The following factors
need to be considered by a community organisation when a person suffering
with depression is participating in a community-run activity:
• Provide an encouraging and supportive environment.
• Encourage good social connections and involvement in social activities.
• Encourage the person to seek additional help from a professional if they
are not coping adequately.
• Have them maintain support and encouragement from family and friends.
• Spend a bit more time and listen.
• Ensure the safety of the person with depression, since people with
depression may feel hopeless and want to end their life.
• Understand that depression is an illness but not a weakness.
Spend a bit
more time &
listen.
Provide an encouraging &
supportive environment.
Depression
is an illness
but not a
weakness.
16
How to include people with chronic disease in community activities : a g u i d e
depression
What are the gener al signs to look for?
The general signs to look out for when a person participating in your
community organisation’s activities is experiencing depression can include:
• an unusually depressed affect, which is persistent
• a loss of interest/withdrawal from the activity
• a lack of energy and extreme tiredness
• poor self-esteem or loss of confidence
• having guilt-ridden thoughts when they are not at fault
• thoughts of suicide
• having sleep trouble (too little or too much sleep)
• a loss of appetite resulting in significant loss of weight
• slowing down of thoughts and actions – difficulty concentrating.
The signs and symptoms of depression and the level of these signs and
symptoms vary from person to person.
Further
i n f o r m at i o n
Beyond Blue – The National Depression Initiative
http://www.beyondblue.org.au
Blue Pages: http://bluepages.anu.edu.au
Moodgym: http://moodgym.anu.edu.au
OZHELP Foundation
http://www.ozhelp.org.au
Telephone: 1300 694 357
How to include people with chronic disease in community activities : a g u i d e 17
3 duty of care
The following information has been modified from the Disability ACT module
entitled Duty of Care, Workplace Learning Module (2002).
Also see your community organisation’s Code of Conduct for more
information on duty of care relating to your specific organisation.
‘Duty of care’ defined
Duty of care is defined as ‘the obligation to take reasonable care to avoid
injury or loss to a person whom it can be reasonably foreseen might be
injured by an act, or omission’ (Disability ACT 2002: 7).
Duty of care and community organisations
As people with chronic disease become more actively involved in the life of
the community, services need to be flexible in how they will support each
individual to participate in community life in ways that are both meaningful
and safe. However, duty of care for people with chronic diseases is the same
for anyone who is participating in your group.
The role of staff and group leaders is to help consumers to achieve positive
outcomes, and to help them to follow lifestyles that reflect as closely as
possible the norms and patterns valued in the general community.
Such a lifestyle necessarily involves a level of risk, which needs to be managed
by both the person with a chronic disease, health care staff and group leaders
who have a duty of care.
People with chronic disease should be encouraged and supported to
undertake new activities so they can become more competent in managing
their health and are better integrated into the community.
Adult community members owe a duty of care to the people they support by
taking reasonable steps to ensure the person avoids injury or harm.
Community organisation activities should be planned to ensure that
consideration is given to events or incidents that can be foreseen to increase
the risk of injury or harm.
18
How to include people with chronic disease in community activities : a g u i d e
Checklist
When deciding to undertake an activity (exercise or social activity), ensure you
have taken the following points into account (Disability ACT 2002):
• Assess the likelihood and extent of foreseeable harm.
• Assess the likelihood and extent of foreseeable benefits.
• Look for ways that the risk of harm can be minimised without sacrificing
the benefits.
• Balance foreseeable harm against foreseeable benefits.
Further
i n f o r m at i o n
Individual sector (health and fitness)
accrediting organisation
Your community organisation’s
Code of Conduct policy
How to include people with chronic disease in community activities : a g u i d e 19
4 privacy
The inclusion of people living with chronic disease in community organisations
requires that these organisations obtain personal and medical information
about the individual. This information allows community organisations to
modify group and individual activities. In some circumstances gaining this
information is necessary to meet their legal requirements.
Legislation to help individuals and community organisations to ensure privacy
practices are adhered to includes the Privacy Act 1988. If the information
you collect is personal health information and you are in a jurisdiction where
there is a Health Records Act, it is not the Privacy Act that would apply but
the local legislation (and then the Privacy Act would apply in some limited
circumstances, primarily if there are any areas of inconsistency). If you are in
doubt about how to proceed with information, you should contact your local
relevant body. More information can be found at <http://www.privacy.gov.au/
law/states>.
Privacy Act
Personal information is defined in the Privacy Act 1988 as ‘information or an
opinion (including information or an opinion forming part of a database),
whether true or not, and whether recorded in a material form or not, about
an individual whose identity is apparent, or can reasonably be ascertained,
from the information or opinion’.
The Privacy Act regulates not only how personal information is to be handled
by organisations in Australia, but also allows individuals to have control over
how their personal information is handled. In particular, the Act covers:
• how personal information is collected
• the use and disclosure of an individual’s personal information
• the accuracy of the individual’s personal information
• the storage and security of personal information
• an individual’s right to access their personal information.
20
How to include people with chronic disease in community activities : a g u i d e
Privacy of personal information
The type and amount of information a community organisation requires
about an individual varies, and is dependent on the services offered by that
organisation.
A community organisation or health club running physical activity programs
may need to collect medical information. The local club providing bridge
sessions would not need to obtain this information. Due to the sensitive
nature of medical and health information, the Privacy Act includes extra
protections for this information.
Store private
information
correctly.
Checklist
When collecting personal information (including medical information) about
an individual living with a chronic disease on behalf of your community
organisation, ensure you have considered the following:
• Store the personal information sheet or health check sheets
correctly:
›› Information is stored on a computer that is
password-protected.
Advise the individual on
how the information
will be used.
›› Information is stored in a filing cabinet with controlled access to
the key.
• Advise the individual on how you and your community organisation intend
on using the information.
Further
i n f o r m at i o n
Office of the Privacy commissioner
http://www.privacy.gov.au/
http://www.privacy.gov.au/materials/types/brochures/view/6483
http://www.comlaw.gov.au/ComLaw/Management.nsf/all/bytitle/32AA97D
FE9AA8326CA256F7100071D25?OpenDocument
Your community organisation’s Code of Conduct policy
How to include people with chronic disease in community activities : a g u i d e 21
5 discussing chronic disease with
a group activity participant
If someone with chronic disease wants to talk with you in some detail about
their conditions, there are a number of things you can discuss with them to
help you to better include them in your group activity.
Goals and expectations
• What are your goals?
• What are your limitations?
• What are your strengths?
• What do you want to achieve from the activities with our community
organisation?
• What do you enjoy doing (activities/exercises)?
• What are your expectations from the community organisation?
What are
your goals?
Disease self-management
• How does the illness affect you?
• Do you understand your condition?
How does
the illness
affect you?
• Can you self-manage your disease?
›› What do you do to manage your situation?
• How do you feel the day after participating in an activity?
Emergency plans
• Do you have an emergency/action plan for your illness?
GP/Health professional approval
• Is your GP aware you are participating in the activity?
›› Has your GP given you approval (medical consent) to participate in the
activity?
›› How long is it since your last medical review?
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How to include people with chronic disease in community activities : a g u i d e
Activity requirements
Do you need oxygen,
to take medications or
ingest food before or
during the activity?
• Do you need a support person to participate in the activity?
• Do you need oxygen, to take medications or ingest food before or during
the activity? Do you need help taking the medications?
• What specialised equipment does the community organisation need to
support the person during the activity session?
There may be other information that you as a group leader would like to
know about the person living with chronic disease, or how your community
organisation can provide a service to a person with chronic disease prior
to them participating in one of your activities. The following issues that are
not covered in the fact sheets may arise when talking to someone with a
chronic disease.
Other issues a group leader may need to
know when working with a participant with
chronic disease
The community organisation/group leader should be:
• be mindful of confidentiality, making the environment safe physically and
emotionally
• have knowledge of available services
• be aware of specific/specialist programs.
Disease knowledge:
• The complexities of the co-morbidity/ies, as these will differ from person
to person
• Knowledge and experience of disease specifics when working with the
participant
• Psychosocial needs (responses to disease)
• Recognition of symptom onset
How to include people with chronic disease in community activities : a g u i d e 23
Consent to participate:
• Medication advice – is this needed for the person to participate in this
activity?
Legal and insurance responsibilities:
• Insurance – ask if consent was gained from health professionals before the
participant starts the activity.
• The participant is ultimately responsible for disclosing their health
information, however most formal programs will ask participants about
their motivations
Be aware of up-to-date government websites and/or announcements
regarding environmental factors such as pollen/dust levels or extreme
temperatures and stay inside.
• Prepare a plan ahead of time to deal with adverse events, with clear roles
and responsibilities.
Check with the participant:
• If you are carrying a mobile phone, give the number to the group leader.
• Do you have back-up medication and equipment (e.g. oxygen)?
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How to include people with chronic disease in community activities : a g u i d e
6 first aid
Community group leaders should have completed a first aid course and have
a first aid kit available. The Royal Life Saving Society of Australia suggests the
following as some of the basics of a first aid kit:
• Telephone numbers of appropriate emergency services which can include
the local ambulance, hospital and medical centre. It can also include
the Poisons Information Centre hotline and any other relevant specialist
emergency hotlines. In addition to emergency numbers, the list should
include the contacts for various first aid personnel.
Important note
It is important for all
first-aiders to ensure that
they are fully informed
of any regulations or
requirements pertaining
to the administration of
first aid in their locality.
• First aid manual and/or any required leaflets
• Triangular bandages
• Cotton bandages of various sizes
• Gauze pieces
• Alcohol swabs and wound-cleaning swabs
• Adhesive dressings
• Sterile wound dressings of various sizes
• Sterile saline for wound irrigation
• Povidone-iodine or other disinfectant (in accordance with local protocols)
• Adhesive tape
• Sterile eye pads
• Safety pins
• Scissors
• Forceps and splinter probe
• Disposable gloves
• Notebook and pencil
• Accident report forms
Additional items may include:
• Asthma spacer and mask
• Asthma puffer
• Jelly beans
First aid kits must be checked regularly to ensure that items are not missing,
damaged or contaminated. Any such items should be replaced immediately.
How to include people with chronic disease in community activities : a g u i d e 25
7 references
ACT Health. (2008). ACT Chronic Disease Strategy 2008–2011. Canberra:
ACT Health.
Arthritis ACT. 2009. Arthritis and Falls. Canberra: Arthritis ACT.
Arthritis Australia. 2009. 10 Steps for Living Well with Arthritis. Sydney:
Arthritis Australia.
Australian Government Attorney-General’s Department. Privacy Act 1988.
(Amended – 16 October 2009.) Canberra: Office of Legislative Drafting
and Publishing.
The Australian Lung Foundation. 2009. Chronic Obstructive Lung Disease
(COPD). Accessed 15 December 2009: <http://www.lungfoundation.com.
au/content/view/1/3/>.
Australian Institute of Health and Welfare. 2009. Chronic Diseases. Accessed
12 October 2009: <http://www.aihw.gov.au/cdarf/index.cfm>.
Australian Institute of Health and Welfare (2003). Heart Failure… What of
the Future? Accessed 15 October 2009 from: <http://www.aihw.gov.au/
publications/aus/bulletin06/.pdf>.
Australian Institute of Health and Welfare (2006). Chronic Diseases and
Associated Risk Factors in Australia, 2006. Canberra: Australian Institute of
Health and Welfare.
Department of Health and Ageing. 2009. Physical Activity Guidelines
for Adults. Accessed 30 October 2009: <http://www.health.gov.au/
internet/main/publishing.nsf/Content/health-pubhlth-strateg-phys-actguidelines>.
Diabetes Australia. No date. Understanding Diabetes. Accessed 30 October
2009: <http://www.diabetesaustralia.com.au/Understanding-Diabetes/>.
———. 2008a. ‘Hypoglycaemia and diabetes’. Talking Diabetes No. 23.
Canberra: Diabetes Australia.
———. 2008b. ‘What is diabetes?’ Talking Diabetes No. 42. Canberra:
Diabetes Australia.
26
How to include people with chronic disease in community activities : a g u i d e
Disability ACT. 2002. Duty of Care: Workplace Learning Module. Canberra:
Disability ACT.
Freeth, D., Mannish, M., Reeves, S., Kopel, I. and Bass, H. 2005. Effective
Interprofessional Education: Development, Delivery and Evaluation.
Oxford: Blackwell Publishing.
Lippman, J. and Natoli, D. 2006. First Aid: A Training Guide for the
Management of Emergencies. Ashburton: Royal Life Saving Society
of Australia.
National Heart Foundation of Australia. 2008a. Heart Information: Living
Well with Chronic Heart Failure. Melbourne: National Heart Foundation
of Australia.
———. 2008b. Heart Information: Coronary Heart Disease. Melbourne:
National Heart Foundation of Australia.
———. 2008c. Heart Information: Managing High Blood Pressure. Melbourne:
National Heart Foundation of Australia.
OZHELP Foundation. 2009. Mental Health: Creating a Mentally Healthy and
Supportive Workplace. Canberra: The OZHELP Foundation.
World Health Organisation. 2009. Global Strategy on Diet, Physical
Activity and Health. Accessed 30 October 2009: <http://www.who.int/
dietphysicalactivity/pa/en/index.html>.
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