camp-in-a-box - novo nordisk€¦ · step-by-step guidance as well as hints and tips for hosting a...

Camp-in-a-BoxGuidance Document

ZIHAO LIChinaZihao has haemophilia A

For healthcare

professionals only

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1. Background ....................................................................................................................................... 5

2. Programme Development ................................................................................................................ 6

3. Location and Facilities ...................................................................................................................... 7

4. Staff and Participant Recruitment ................................................................................................... 10

5. Establishing Parameters ................................................................................................................... 16

6. Camp Content and Curriculum ......................................................................................................... 18

7. Camp Curriculum ............................................................................................................................... 21

8. Final note ........................................................................................................................................... 47

List of contents

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Dear Colleague,

Welcome to our guide to running a Haemophilia Patient Fitness Camp.

The aim of the Fitness Camp is to educate haemo-philia patients and their families on the benefits of physical activity and how and why it should be safely and simply introduced into their daily routine.

This Haemophilia Fitness ‘Camp-in-a-Box’ toolkit has been developed to support you in creating and running a Fitness Camp in your local area. It offers step-by-step guidance as well as hints and tips for hosting a successful camp.

What you will find in the Haemophilia Fitness ‘Camp-in-a-Box’ ‘Camp-in-a-Box’ is a toolkit that will provide you with all the information and template materials you will need to organise and run your own Fitness Camp. In it you will find:

• Facilities and logistics guide• Core curriculum• Recruitment (attendees and staff)• Camp content (materials, workbooks etc.)

This toolkit has been developed by Novo Nordisk in association with an International Steering Committee of haemophilia healthcare providers, including specialist haemophilia consultant physicians, rehabil-itation specialists, nurses, patient caregivers, and patient advocates.

To start building your own Haemophilia Patient Fitness Camp, read on.

Yours sincerely,

International Steering Committee

Background

The Haemophilia Patient Fitness Camp programme has been developed by Novo Nordisk in association with an International Steering Committee (ISC) of haemophilia experts to educate those living with haemophilia and their families on the benefits of physical activity and keeping healthy.

It is intended for children and young adults with haemophilia aged 10 – 25 years old, with or without inhibitors (Participants), and their parents or legal guardians (Caregivers).

The Fitness Camp programme has been designed to include a mix of:

• Interactive educational workshops• Indoor and outdoor fitness sessions• Team building and social activities

This format aims to ensure that Participants and their Caregivers are provided with the best possi-ble education, while delivering a fun experience, cre-ating a network, and a chance to build lasting friend-ships.

International Steering Committee (ISC)Specialist Haemophilia Consultant Physician:Dr Guy Young MD, California, USA

Specialist Rehabilitation specialists:Ms Angela Forsyth, Chicago, USAMr Paul McLaughlin, London, UK

Specialist Haemophilia Nurse:Ms Debra Pollard, London, UK

Haemophilia Patient Advocate:Mr Brian O’Mahony, Ireland

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Location and Facilities

The first step is to establish where you will run your Fitness Camp. You will want to consider nearby facilities that might be appropriate for hosting a Fitness Camp, for example:• University or school• Sports club• Community sports centre

You will need to consider proximity to your local Haemophilia Treatment Centre (HTC) when deter-mining which venue to select.

Your venue should be within a reasonably short distance (ideally 20 – 30 minutes travel time) from a HTC or a local hospital in order to ensure that patients are able to quickly receive treatment in case of a bleed. You should also consider setting up an on-site treatment room to manage injuries with a haemophilia doctor or nurse present.

Other elements you will also need to consider are detailed below. You may want to set up a meeting with the facility owner and con-duct a site visit if you have not previously used the facilities to ensure these details are accounted for.

Sports facilities Basic sports facilities will be required in order run a Fitness Camp. Listed below are facilities or spaces you may want to consider utilising, but remember

that your Camp curriculum can be modified to suit the identified venue: • Swimming pool• Basketball or badminton court• Outside playing field• Gymnasium• Dance studio• Changing rooms• Showers

Meeting room facilitiesClassrooms will be required to conduct the educa-tional sessions. These rooms may also be able to be used for some of the free time and social activities included in the curriculum, as well as an onsite medical room.

Access to persons with physical limitationsThere should be suitable disabled access to all facilities at the Fitness Camp. Remember to make sure that facilities have suitable disabled access, for example, consider if the showers, restrooms and meeting rooms all have wheel chair access, whether there are ramps or elevators to assist accessibility, and if facilities, such as the swimming pool, have step access and a handrail.

Transport linksGood transport links for Participants and Caregivers to travel to and from the Camp will be essential.

AccommodationDepending on where your attendees will be travelling from, it is advisable to provide over-night accommo-dation for all Camp participants (including Participants, Caregivers and Camp staff).

Programme Development

Below is an overview diagram to show the various elements involved in running a Haemophilia Patient Fitness Camp, but don’t be alarmed, we will go through these step-by-step within this toolkit.

Establishing the Camp Parameters

Fitness Camp Development

Camp & Content

Curriculum

Staff & Participant

Recruitment

Camp Location & Facilities

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Location and Facilities

In this instance, you will need to consider whether your venue is in close proximity to suitable accom-modation. Please see below a list of things you may want to consider when looking for accommodation:• Disabled Access – Are there rooms that will

accommodate wheelchairs? Are all hotel facilities wheelchair friendly? Are the showers accessible?

• Transport links to the venue – Is the Camp venue a short distance to travel to from the hotel by car / bus? A long journey time of more than 30 minutes should be avoided.

• Fridge access – Are there fridges available in each room to allow Participants’ medications to be stored?

• Number of rooms – Can the hotel accommodate all Participants and Caregivers, and does it have family rooms?

• Availability – Is the accommodation available during the duration of the Camp?

CateringYou will need to provide catering for Participants, Caregivers and staff at the Fitness Camp.

For attendees staying overnight: • Breakfast, lunch and dinner will be required• Dietary requirements need to be accommodated

Top tip If you are booking several rooms in a hotel, remember to book a couple of months ahead! Depending on the hotel, it may be possible to negotiate a reduced rate if booking for a large group.

Ideally you should consider holding the Camp at a time when the facility will be less frequently used, for example scheduling the Camp at a school out-side of term-time, may ensure exclusive use of facilities along with improved recruitment results. LanguageWhen planning your Camp, you should be aware of the potential language barriers, if all the Camp attendees do not speak or read a common lan-guage. If this is the case, you should consider trans-lating the Camp-in-a-box materials into a common local language.For attendees travelling daily from home:

• Lunch will be required• Consider whether this is catered or if the

Participant should bring a packed lunch• Make sure there is a suitable room or shaded

outdoor space (if held in sunny climate) to eat in and space to store packed lunches is available

ExclusivityWhen hiring your venue, you will need to consider whether the facilities are available for exclusive use. If not, you may need to share facilities with the public at peak times, which will undoubtedly affect your session scheduling and Fitness Camp curriculum and could increase the risk of injuries and affect safety considerations.

Top tip You may want to look into catering options at the hotel, the Fitness Camp venue or nearby restaurants to determine the most appropriate option. Get caterers to share a sample menu with you for approval before the Fitness Camp. The menu should offer healthy food options, for instance a salad or fruit counter, in keeping with the theme of the Fitness Camp.

Top tip Consider awarding a prize to the Participant with the healthiest lunch box in an effort to support the healthy eating principles of the Fitness Camp.

Security and safetyCheck local guidelines to ensure that safety protocols for running a Fitness Camp can be adhered to within the proposed facility. You will also need to check if there are any public spaces that are not supervised and if outside grounds are suitably fenced and covered by security cameras. For inside spaces you will need to consider proximity of fire exits and fire safety procedures in accordance with local rules and regulations.

Below is a quick point reference checklist of things to remember when choosing your venue:

Don’t worry if your chosen venue doesn’t adhere to all of the considerations, you can always tailor the curriculum for the Fitness Camp to be in line with the facilities available to you.

Venue and facilities & equipment checklist

Is the venue within 20 – 30 minutes travel time to a HTC?

Are there meeting style classrooms available for use onsite?

Is the site safe and secure? Is the camp easily accessible for Participants and HTC staff?

Are there facilities to set up an on-site treatment room at the Fitness Camp, to be staffed by haemophilia healthcare professionals?

Is there onsite or nearby accommodation available for overnight stays?

Has the local HTC been made fully aware of the Camp dates and attendee numbers?

Are catering facilities provided onsite?

Does the venue have sufficient disabled access for all facilities?

Can I have exclusive use of the facilities?

Does the venue have suitable sports facilities that could be utilised for physical activity sessions, including for those who are dependent on wheelchair / crutches?

Are lifeguards provided for the swimming pool or are they available for hire?

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Staff and Participant Recruitment

While securing a venue for the Fitness Camp, you will also need to start thinking about the participants, including staff and attendees.

The Staff Core staff required to run the Camp are outlined below:• Consultant / haematologist • Experienced haemophilia nurses • Haemophilia Rehabilitation specialist • Fitness expert

Top tipYou will need to ensure you have enough staff to cover the Participants you are inviting. Check with your local guidelines to ensure you apply the recommended child:staff ratio. However, use a 3/5:1 ratio as a guide. For example for a Camp with 20 Participants there should be approximately seven healthcare professionals present.

Top tip Within your local HTC, there may be members of the team who are well equipped to help run the Fitness Camp.

Below is a general guide to the staff that will be required for the types of sessions listed in the curriculum: If you do not currently work within / with a HTC, the World Federation of Haemophilia holds a Global Treatment Centre Directory which you may find useful: https://www.wfh.org/en/page.aspx?pid=1264

There may also be other staff with specialist skills not covered by a HTC that you will want to recruit to help facilitate the Fitness Camp, including: • Nutritionist / Dietician• Psychologist / Counsellor, etc.

Emergency staffYou will also need to think about having emergency medical staff available out of hours throughout the Camp. In the case of an emergency, there should be arrangements in case Participants need a consul-tation or get medical assistance outside of the nor-mal Camp hours.

You will need to ensure that you undertake all required criminal and due diligence checks on staff prior to agreeing to their involvement.

Session Staff requirements

Welcome, introduction, day wrap-up session and Q & A sessions

Camp leader; healthcare professional (haematologist, nurse consultant or nurse)

Mobility / fitness assessments Rehabilitation specialist and / or Fitness expert

Warm-up / warm-down and exercise / physical activity sessions

Rehabilitation specialist and nurse* and / or Fitness expert

Watersports / exercise sessions Rehabilitation specialist and nurse and / or Fitness expert, and Lifeguard (water activities)

Educational sessions, i.e. importance of joint health Healthcare professional, nurse, rehabilitation specialist, and / or nutritionist

* It is strongly advised for a nurse to be on hand for the physical activity sessions just in case there are any unforeseen injuries.

Top tip When choosing a Camp leader, consider a haematology healthcare professional that works regularly with patients in the HTC and would be a good facilitator for Camp sessions.

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Who are the rehabilitation specialists within my HTC?

Full Name: Full Name:

Postal Address: Postal Address:

Telephone: Telephone:

Email Address: Email Address:

Who are the haematologists and nurses within my HTC?





Are there healthcare professionals in another HTC close to the area?





Do I want to approach external professionals that we don’t have within my HTC, such as a nutritionist or psychologist? If so, who may be appropriate and what are their contact details?





List of Staff

Top tip Once you have a list of the staff you would like to approach, you will need to gauge their availability for the dates you have in mind. One of the simplest ways to do this is to use an online system, such as Doodle – www.doodle.com

Participants and Caregivers Ideally, you will need to allow at least three months to complete the Participant and Caregiver recruit-ment process, so bear this in mind when determin-ing a suitable date for the Fitness Camp.

Considerations for Participants and Caregivers:• Do Participants and Caregivers have their own

medical and travel insurance to cover them for the duration of the Camp?

• Will Participants be able to bring enough medication with them for the duration of the Camp?

N. B: These considerations have been expanded upon in the template materials provided in the toolkit.

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Size of the Camp The number of Participants you choose to invite will be dependent on your budget, staff and facilities. As a guide, running a Camp for 10 – 20 haemophilia patients will allow for Participants to engage with a reasonably sized group of peers, but ensure that sufficient one-to-one guidance can be provided.

In addition to Participants, you will also need to consider that the same or a similar number of Caregivers will also attend the Camp. We would suggest limiting the allowance to one Caregiver per Participant to maximise the number of haemophilia patients that will be able to attend, however flexibility may be required. In addition, some Participants may have younger siblings (with or with-out haemophilia) that need to attend the Camp with the Caregiver. You could also consider arranging a programme for accompanying children, with activities that do not require a healthcare professional to be present. These sessions could be run by local volunteers. The number of additional family mem-bers attending the Camp will need to be factored into budgets and facility / staff allowances.

Recruiting processYou may already have some patients in mind who you think would benefit from attending the Fitness Camp. If you are looking to recruit from only your local treat-ment centre, consider getting the HTC team to pull together a list of Participants and Caregivers who may be interested in the Fitness Camp or setting up a meeting to discuss.

If you are unable to source all Participants through your local HTC, you may want to consider the following options to complete or supplement your recruitment:

Recruitment materials Template materials provided in this pack to support recruitment are listed below (although these materials will need to be modified to relate to your specific Fitness Camp, the majority of the documents below will require only minor editing).

Participant and Caregiver Invitation Pack:• Invitation letter• Application booklet with consent forms• Travel, accommodation and logistics • Curriculum and Biographies

Successful Applicant Pack:• Successful applicant letter• Welcome pack• ‘Fitness Starts Here!’ booklet

Eligibility criteria You may need to consider specific requirements for recruitment to determine which applicants are eligible to participate in the Haemophilia Patient Fitness Camp.

Eligibility criteria might include: • Age (10 – 25 years)• Level of mobility• Family member also affected by haemophilia • Patient need / benefit from attending• Patients who have a history of

compliance / adherence to treatment

• Local patient group – Contact a local patient association to see if they can put you in contact with suitable patients or raise awareness of the Fitness Camp through their own activities. If you are a patient group you will already have these options for recruitment open to you to use. Local patient group:

• HTCs in your area – Combining the patient pools of a few local HTCs will enhance your ability to recruit patients and may also increase the number of staff available to participate in the Fitness Camp. HTCs in your area:

You will need to ensure all applicants provide appropriate consent to participate and medical records. Local legal requirements must also be considered to cover accident liability. You may wish to include a form that Participants must complete to supply information regarding insurance coverage, and ensure they are responsible for bringing sufficient medication to the Camp (tem-plate materials have been provided).

A list such as the above may also help you to filter applications when received. Set up a meeting within your HTC to review all applications and make a decision on which patients meet the camp criteria.

Managing expectationsIn order to avoid disappointment, it will be important to manage the invitations carefully, ensuring Participants or Caregivers you approach fulfil the eli-gibility criteria you determine.

Remember to be clear on deadlines for confirmation of Fitness Camp selection and stick to them.

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Establishing Parameters

There are a few other points you will need to keep in mind when thinking about setting up a Haemophilia Patient Fitness Camp: • How will my Camp be funded?• When should I hold the Camp?

FundingConsider how you will fund your Fitness Camp. You may want to reach out to some of the following to determine if they would be interested in partnering with you or sponsoring the Camp:• HTCs• Patient advocacy associations / groups• Private or public sector organisations• Corporate sponsorship

Take the time to search online to understand major local associations or charities. Obtain a contact number in order to inform them about the Fitness Camp concept. If they are interested, they will probably want to have a face-to-face meeting to go through details in more depth. Please note, if you choose to apply to an association for a grant, they will need to see a clear plan of the Camp, how you are planning to deliver the programme and a breakdown of your budget.

School holidays• What are the school holidays this year (i.e. Summer, mid-term breaks)?• When do public holidays fall this year?• What weekends could be suitable for holding the camp, if any?

Calendar for the year 2019

Timing of Camp Consider suitable dates for holding your Fitness Camp. Key points to remember are:• Three day duration (ideal) • Schedule during school holidays or weekend /

public holiday • Consider national / religious holidays

How long the Fitness Camp is going to run for will depend on the availability of facilities, equipment and staff. In order for Participants and Caregivers to receive the most benefit from the Camp, we recommend holding the Camp over three days.

WeatherYou will need to consider what the weather will be like at the time of your Camp. Remember to consider factors such as: the outdoor day time temperatures being suitable for fitness activity, the water tempera-ture of the swimming pool, and climate factors such as a rainy season that could limit activities to indoor sessions only.

Top tip Try to hold the Fitness Camp during the school holidays to ensure maximum avail ability of Participants OR run it over a weekend (from Friday through to Sunday) to minimise the impact on time off work for Caregivers.

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Camp Content and Curriculum

The Camp should include a mix of:• Interactive educational workshops• Indoor and outdoor fitness sessions• Team building and social activities

It is important to include a balance of all these types of activities to ensure that Participants get the best possible experience from your Fitness Camp – ensuring they leave better educated about the importance of exercise, more motivated to partici-pate in physical activity, and with a network of peer support.

Core CurriculumA core curriculum framework has been included in this document. You will need to review and adapt this in accordance with your Fitness Camp, taking into consideration the facilities available to you.

Your curriculum must include a mix of the following:

Team Sport and Exercise Sessions

Aim: Allow Participants to discover which team sports or group activities they may be involved in. Develop Participants sense of confidence and self-sufficiency in conducting some example activities.

Audience: Participants

Example activities: • Swimming • Dance / movement • Basketball • Non-contact martial arts • Mini-Olympics • Non-contact football • Gymnastic exercises / stretching • Weight training

Contact or high-risk sports should be excluded from your curriculum. These include: • Rugby • Boxing • Contact Football

Top tip Fitness Camp activities can be tailored to suit all abilities, so consider your selected Participants when determining exactly which sports or activities to include. If you have some Participants using wheelchairs, consider selecting wheelchair friendly sports such as basketball to promote inclusion.

Individual Physical Activity Sessions

Aim: Allow Participants to discover individual exer-cises or sports most suited to them. Develop Participants sense of confidence and self-sufficiency in conducting activities and prepare them for undertaking activities at home following the Fitness Camp.


Example activities: • Physical activity plan development • Weight based exercises • Water based exercises • Basic resistance exercises for each joint • Walking*

Don’t forget to also consider the equipment you will need for the physical activity sessions. Remember to write up a list once you have decided on the activities you will be conducting.

Example equipment for sport and exercise sessions: • Gym mats • Soft sponge balls • Cones • Soft water polo ball

Top tip Consider how sessions can be adapted to suit your facilities.

Educational Sessions

Aim: To provide education to both Participants and their Caregiver about the role of physical activity in maintaining a healthy lifestyle while living with haemophilia.

Audience: Participants and Caregivers (some ses-sions for Participants only, some for Caregivers only, others for all)

Example sessions: • The importance of maintaining healthy joint

function (for Participants and Caregivers) • The importance of physical activity and what to

do following a bleed (for Participants and Caregivers)

• The benefits of a healthy diet and lifestyle choices (for Participants and Caregivers)

• Supporting a child with haemophilia (Caregivers)

*Read on to find out about a pedometer contest you may want to consider including in your curriculum..

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Camp Content and Curriculum

• Water safety equipment: life vests and armbands • Exercise balls • Exercise stretch bands • Light home weight sets• Spoons and small foam balls • Temporary goals / goal posts • Pedometer(s) • Sports safety equipment: elbow and knee pads

Other accessories / equipment needed for workshops: • Blenders • Whiteboard • Audio and Visual equipment: projector or screen

and laptop / PC • Bean bags or soft seating • Board games

Top tip Consider incorporating a ‘make at home’ session into your curriculum, where Participants can use household items (such as cushions and bean bags), to make their own fitness aides.

Beyond Fitness Sessions

Aim: Ensure Participants get enough free time within the curriculum to rest, recuperate and spend time with their new friends. Inspire confidence and motivation for continuing physical activity after the Camp.

Audience: Participants and Caregivers

Example activities: • Start of Camp: welcome and introductions • Team building games • Talent show hosted on the first evening • End of day “what we have learnt today” sessions • Inspiring guest speaker evening • Certificate giving and end of Camp award

ceremony

Top tip You may want to consider inviting an inspira-tional speaker to come and talk to Participants and Caregivers. This could be a local sports person ality, or para-sports team who can give a dem onstration. If no one is available, think about an existing patient in the local area who has achieved well, despite their physical limitations.

Camp Curriculum

The next few pages provide an example curriculum for you to adapt for your Fitness Camp.

Core Principles Outlined below are key principles that you will need to follow when developing your own tailored curriculum:

• Each day should include a mix of individual / team fitness, educational and beyond fitness sessions to ensure variety

• At least one or two hours physical activity (individual or group) should be included each day

• Each physical activity session (individual or group) should include 15 minutes for warm-up and 15 minutes for cool down

• Allow for rest time between physical activity sessions to allow Participants to recover (this can be addressed by inserting educational or free time sessions between sports activities). Consider arranging opportunities for Participants to play board and / or video games together to help foster friendships.

• Build time into the agenda for movement / transit between rooms and facilities and for Participants to change (if required)

• Allow for plenty of water and nutrition breaks throughout the day

• Include daily morning welcome / icebreakers and evening ‘what we have learnt today’ sessions to maximise learning / reflection and team bonding

• Ensure Caregivers are also included in some of the Participant sessions

Top tip Caregivers may also be able to help with the facilitation of Participants activities.

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Camp Curriculum

Sample Agenda for Day 1 Sample Agenda for Day 2

Participants Caregivers

09:45 Official Fitness Camp Welcome (including camp objectives, timetable for the camp and logistics) Introduction to Workbooks and Pedometer Contest Each patient and caregiver introduces themselves and their activity level

10:15 – 12:15

Split the group into two:1. Indoor activity and icebreaker stations

(supervised) – refreshments2. Pre-camp Assessment with rehabilitation

specialists

Camp Orientation for each group and Observation

12:30 – 12:45

The Importance of Keeping Fit for Joint Health and Understanding Joint Bleeds

13:00 – 13:45

Lunch

14:00 –14:15

Making Healthy Choices: You Are What You Eat(interactive session)

14:30 Physical Activity Session: Warm-up The Importance of Physical Activity in Haemophilia / Participant Observation

14:45 – 15:45

Non-contact sport activity, including warm down

16:00 – 16:15

“What Have We Learned Today” Session and Q & ACompletion of Workbooks and Recording of “What To Do At Home After the Camp” Points

16:30 – 18:30

Meal for Participants and Caregivers


09:45 – 10:00

Good Morning Gathering and “Circus Themed” Icebreaker

10:15 Change for Hydro-Activity Session

10:30 Hydro-Activity Session: Warm-up Supporting a Child with Haemophilia

10:45 – 11:45

Pool Divided for Confident / New SwimmersInstruction on Activities (15 mins)Individual and Team Activity [Fun and Competitive] (45 mins) Hydro-Activity observation

12:00 – 12:15

Shower / Change

12:30 – 13:00

Lunch

13:15 –13:30

How to Increase Endurance and Power, Cardiovascular Fitness and Maintain a Healthy Body Weight

13:45 Endurance, Power & CV Fitness Quiz – Physical Activity “Dos and Don’ts” Discussion

14:00 – 16:00

Free time, including games and entertainment

1:1 Tailored Plan Assessment

Free Time (Relaxation Room)

16:15 Gym-Based Session: Warm-up Making Healthy Choices: Nutrition and Physical Activity

16:30 – 17:15

Weight-Oriented or Home-Focused Training Session (by age), including warm down

17:30 Refreshment Break

17:45 – 18:15

“What Have We Learned Today” Session and Q & ACompletion of Workbooks and Recording of “What To Do At Home After the Camp” Points

18:30 Buffet Dinner (in dedicated room) and optional evening activity (e.g. giant board games, or disco)

Educational Sessions Team Sport and Exercise Sessions Individual Physical Activity Sessions Beyond Fitness Sessions

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Camp Curriculum

Sample Agenda for Day 3


10:00 – 10:15

Good Morning Gathering and Pedometer Contest Wrap-Up

10:30 Group warm-up

10:45 – 11:30

Fitness Camp Mini-Olympics Part 1: Participants vs Caregivers(Selected activities requiring a variety of physical, coordination, team-work and individual skills)

11:45 Refreshment Break

12:00 –12:45

Fitness Camp Mini-Olympics Part 2: Participants vs Caregivers(Selected activities requiring a variety of physical, coordination, team-work and individual skills)

13:00 – 14:45

Celebration CeremonyGHFC Awards CeremonyFriends Exchange Session and Lunch

15:00 Departures

Fitness Camp Session Breakdown

Summaries of the sessions in the core curriculum are available below, including details of:• The types of facilities required • Facilitator recommendations• Materials you may need

Day 1

Official Fitness Camp Welcome, Introduction to Workbooks and Pedometer Contest – 30 minutesAs a Camp kick-off, this is an informal introduction and team building session for the Participants and Caregivers. The session will allow you to provide participants with information about the Camp itself and hand out materials that will be utilised for the duration of the camp (e.g. workbooks and pedometers)

Session: Welcome and Introduction

Facilitator: Chair of the Camp, Healthcare professional


Facility: Classroom with chairs or mats

Session Objectives:• Introduce Participants and Caregivers to the

Fitness Camp, setting tone for the next three days

• Outline objectives and key aims for the Fitness Camp, along with Camp Rules

• Distribute Fitness Camp Workbooks and explain how they are to be completed during the three day programme

• Hand out pedometers to Participants and Caregivers and launch the contest

• Inform about the upcoming session (pre-Camp assessment and x4 activity stations)

• Each Participant and Caregiver introduces themselves and their activity level

List of suggested materials: • Fitness Camp Workbooks

(please refer to Workbook)• Pedometers

Educational Sessions Team Sport and Exercise Sessions Individual Physical Activity Sessions Beyond Fitness Sessions

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Camp Curriculum

Indoor activity stations (in parallel with the pre-Camp assessments) – 2 hoursHere, the Participants can take part in some casual, yet supervised activities while pre-Camp rehabilita-tion specialist assessments are being conducted

Pre-Camp assessments (in parallel with indoor activity sessions) – 2 hoursThe pre-Camp assessments are designed to check the Participants’ mobility and determine if they have had any suffered any bleeds since the application

(more information is provided in the next section). You may want to consider setting up a number of stations to provide variety for Participants.

phase. This session will also help establish Participants’ current fitness level and capabilities, and what each individual Participant may hope to gain from the Camp (goal setting).

Session: Activity Stations

Facilitator: Rehabilitation specialists and Nurses


Facility: Large indoor space such as dance studio / gymnasium / basketball court

Session Objectives:• Provide educational entertainment for

Participants whilst the 1:1 pre-Camp assessments are running via informal yet supervised activity stations

• Facilitate ‘ice-breaker’ activities and set the tone for the Fitness Camp

List of suggested materials: • Soft ball skills: x2 soft balls (football sized)

and x12 cones• Name Game: x25 famous people / character

post-it notes, sample questions• Sit down volleyball: x1 soft foam ball

(volley ball sized), low volley ball net (approx. 1 m height)

• Optional: a banner at every station explaining the activity rules

Format options:The facility available can be split into two or three areas to provide various ‘activity stations’. Examples of activities include:Soft ball: a team relay course for Participants to dribble the ball between cones and pass the ball to other team members Name game: names of famous people are written on post-it notes and stuck to Participants’ foreheads, whereby the Participant asks questions to which the other Participants respond with yes or no answers to allow the Participant to guess the famous personSit-down volley ball: split group at station into two teams of 4 with the rule that each team member must pass the ball to another before it goes in the net Self-portrait: pens and coloured pencils are provided to allow Participants to create a self-portrait for their profile card (within Participant workbook)

Session: Pre-Camp Assessment

Facilitator: Rehabilitation specilaists


Facility: Large indoor space such as dance studio / gymnasium / basketball court

Session Objectives:• Complete pre-Camp assessment to ensure no

major changes in mobility / joint status since application

• Grade, using traffic light system, Fitness Camp activities for each individual Participant

• Gather insights into what each Participant hopes to gain from the Fitness Camp and note Goals in Workbook

List of suggested materials: • Four chairs or tables • Fitness Camp Workbooks • Fitness Camp Activity Traffic Light Checklist

Fitness Camp Activity Traffic Light Checklist

Format options:The space could be set up with four stations in each corner of the room, in order for different assessments to be performed at each station. For instance there could be a station for the following activities: physical assessment to ensure there haven’t been any changes in mobility or joints since application, discussion and agreement of Participants’ goals for the Camp, helping to traffic light their plan, and a mini group tour of the Camp and facilities.

There could be a group of five Participants at each station, and could be scheduled in 15 minute slots.

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Camp Orientation and Observation of Participant Indoor Activities – 2 hoursThis session is designed to familiarise the Caregivers with the facilities at the venue and their general sur-roundings, and provide them with an idea of what spaces will be utilised for sessions with the Partici-

The Importance of Keeping Fit for Joint Health and Understanding Joint Bleeds – 30 minutesThis session outlines the key purpose of the camp to the Participants and Caregivers – why it is important

pants, as well as where the essential facilities are, such as toilets. We advise that the Caregivers are provided with information about safety as some may show concerns about what care is taken when there are injuries or bleeds.

to maintain an active lifestyle as a person with haemophilia, the signs of a bleed and how to manage a bleed.

Session: Orientation and Indoor Activity


Audience: Caregivers

Facility: Tour of the facilities

Session Objectives:• Ensure Caregivers are familiar with their

surroundings and where the Participants will be spending the next three days

• Provide forum to address any questions Caregivers may have about the Fitness Camp programme and facilities from both the HCP and patient advocate perspective

• Facilitate networking amongst Caregivers• Provide Caregivers with a housekeeping and

safety note, i.e. where are the toilets, who’s on hand if there any injuries / bleeds, etc.

List of suggested materials: • Treatment Centre Site Map (optional)• Participant activity schedule, with locations Frequently Asked Questions Booklet

Session: The Importance of Keeping Fit for Joint Health and Understanding Joint Bleeds



Facility: Classroom or medium sized indoor space

Session Objectives:• Educate Participants and Caregivers about what

happens in a joint during a bleed• Educate Participants and Caregivers about the

benefits of maintaining an active lifestyle and address any questions/place into context of the potential consequences of exercising

• Provide tailored information (by age of Participant) on how to recognise and manage joint bleeds and the role of physical activity in rehabilitation

List of suggested materials: • Joint Bleed Video* • TalkingJoints – let’s talk exercise booklet*

and ‘Your Exercise Plan’ grid (in My Fitness Camp Diary)

• TalkingJoints – joint status checklist*• TalkingJoints – let’s talk rehabilitation booklet*• TalkingJoints – let’s talk physiotherapy*

*You can find these materials here: https://www.novonordisk.com/about-novo-nordisk/changing-haemophilia/changing-haemophilia-focus-areas/joint-outcomes/talking-joints.html

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Making Healthy Choices: You Are What You Eat – 30 minutesThis is designed to be an interactive and practical learning session for the Participants and Caregivers. Homemade juices are an easy way to consume fruit and can play a key part in maintaining a healthy diet. By giving the Participants a chance to make their own fruit juices in this session, they will gain an idea of what fruit and other ingredients they like, while learning about the benefits of a healthy diet. Please note that some of the Participants may have allergies so it is important to ask this before the session begins.

Physical Activity: Non-contact sport activity – 1 hour and 15 minutesThis physical activity session can comprise of four mixed age teams (5 or 6 players) having 12 games of a five minute duration (two fields of play), as well as a 10 min warm-up and 5 min cool-down

Idea You may wish to include a discussion on healthy eating ideas according to local food options and the typical diets of the participants. Consider creating a Camp survey for participants to provide information on their typical meal plan and favourite foods either before or during the Camp.

at the end of the session. As an example, we have proposed non-contact football for this session, but other non-contact team sports should be considered.

Session: Making Healthy Choices: You Are What You Eat




Session Objectives:• Educate Participants and Caregivers on the

benefits of a healthy diet• Provide practical guidance on how to make

‘healthy’ food choices every day, including when eating out

• Facilitate shared learning between Participants and Caregivers through practical, hands-on learning

List of suggested materials: • TalkingJoints - let’s talk healthy eating

booklet*• Healthy eating recipe cards (e.g. making

healthy fruit juices)• Blenders (1 per Participant / Caregiver pair)• Ingredients for healthy juices (strawberries,

orange juice, bananas, milk, raspberries, kiwis, yoghurt and ice cubes)

Session: Physical activity: non-contact sport

Facilitator: Rehabilitation specialist / Fitness expert


Facility: Classroom or medium sized indoor / outdoor space

Session Objectives:• Educate Participants on how they can adapt the

sport into a format that can be both fun and beneficial for their joint health

• Focus on developing foot and hand skills (depending on sport – handling the ball, passing across the floor, dribbling the ball etc.)

List of suggested materials: • x2 soft balls (football size)• x4 temporary goals / goal posts• x1 whiteboard or flipchart (to note game results)• Safety equipment (e.g. knee and elbow pads)


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The Importance of Physical Activity in Haemophilia – 1 hour and 15 minutesThis session aims to teach the Caregivers about the over-arching purpose of the Camp and how they

What Have We Learned Today Q & A & Workbook Completion – 30 minutesThis session should be held as an end of day summary and is designed to be a group discussion for the Participants and Caregivers to talk about what they have enjoyed so far, and for them to ask questions. Following this, the attendees can be split into groups in order to fill-in the applicable sections of the workbook.

can help support the Participants in maintaining an active lifestyle safely, as well as how physical activity can be enjoyed and beneficial for the whole family.

Tip Remember to incorporate one of these sessions at the end of each day.

Session: The Importance of Physical Activity in Haemophilia




Session Objectives:• Engage Caregivers to develop their individual

understanding of the Fitness Camp goals, the purpose of each activity session and the key objectives

• Foster debate about the role of the Caregiver in supporting the boy in their care to maintain an active lifestyle following the Camp

• Provide practical guidance on how to make physical activity fun for all the family

List of suggested materials: • Projector / screen / laptop • Session slides

Session: What Have We Learned Today



Facility: Classroom or large indoor space

Session Objectives:• Encourage Participants and Caregivers to share,

in turn, their main highlight of the day and key learning

• Facilitate a forum for questions to be asked and answered

• Put key learnings into practice by supporting Participants to complete their Fitness Camp Workbook

List of suggested materials: • Soft mats and seating for Participants / Caregivers• Fitness Camp Workbooks

(please refer to workbook)

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Camp Curriculum

Hydro-Activity Session Individual and Team Activity, incl. warm-up and cool-down – 1 hour and 15 minutesThis water activity can comprise of two simultaneous activities such as one team doing watersport and

one aqua aerobics, where the groups of Participants can rotate. Of course this activity will only be relevant if your facility includes a swimming pool.

Session: Good Morning Gathering



Facility: Classroom large indoor space

Session Objectives:• Run through the programme for the day,

including timings for refreshment breaks / lunch etc.

• Set the tone for the Fitness Camp by facilitating a fun ice-breaker session

List of suggested materials: • Materials for icebreaker (as appropriate)

Session: Hydro-Activity Session: Individual and Team

Facilitator: Rehabilitation specialist(s) / Fitness expert(s) / lifeguard(s)


Facility: Swimming pool

Session Objectives:• Utilise the shallow platform area of the pool

to conduct x5 small group (4 Participants at any one time) water physiotherapy session educating Participants on simple exercises that can help support healthy joints

• Add a fun and competitive element to the water activities by educating Participants on how water sport, such as minimal/non-contact water polo, is safe for people with haemophilia and supports improved joint function (5-a-side-teams in shallow end of pool)

List of suggested materials: • Soft water polo ball• Water polo goals • Water PT exercises take-home sheet

(adapted from TalkingJoints)• Safety equipment – i.e. noodles,

life vests, armbands

Day 2

Good Morning Gathering and Themed Ice-breaker – 30 minutesThis session should be held at the start of each day (excluding day one where a more comprehensive introduction is incorporated). The session should provide everyone with an overview to the day’s sessions and activities, while setting a more fun

tone, compared to the introductory day, and this can be achieved through themed ice-breakers or team games.

Tip Remember to incorporate one of these sessions at the beginning of each day.

Idea You may want to incorporate a theme to your morning session such as ‘circus’ and include juggling soft beanbags.

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How to Increase Endurance and Power, Cardiovascular Fitness and Maintain a healthy body weight – 30 minutes

The importance of this activity is to educate the Participants and Caregivers on how exercising regu-larly improves cardiovascular endurance and in maintaining a healthy body weight.

Session: Supporting a Child With Haemophilia

Facilitator: Healthcare professional / Nurse



Session Objectives:• Provide personal account, from the patients’

perspective, of the vital role Caregiver’s play in supporting the child in their care to live a full and active life

• Address some of the barriers that may prevent Caregivers from ‘letting go’ for fear of the consequences

• Provide an open forum for Caregivers to have their questions answered by a patient advocate

• Provide personal account, from the patients’ perspective, of the vital role Caregiver’s play in supporting the child in their care to live a full and active life

List of suggested materials: • Projector / screen / laptop • Session slides (provided in your pack)

Optional:• Paper and pens• Bowl / bucket to submit questions

Session: How to Increase Endurance and Power, Cardiovascular Fitness and Maintain a Healthy Body Weight

Facilitator: Rehabilitation specialist / Fitness expert / Nutritionist



Session Objectives:• Reinforce some of the key messages

(the importance of keeping fit and you are what you eat)

• Provide more detailed insights into simple activities that can be incorporated into everyday life to improve cardiovascular fitness

• Communicate physical activity Do’s and Don’ts for the patient pre- and post-bleed

List of suggested materials: • TalkingJoints - let’s talk exercise* and

‘Your Exercise Plan’ grid (can be found in My Fitness Camp Diary)

• TalkingJoints - let’s talk rehabilitation booklet*

Supporting a Child with Haemophilia – 1 hour and 15 minutesThis session aims to provide the Caregivers advice on what life is like for the haemophilia patient, and how important it is for them to learn how to support the

Participants. Through this session, you can address the concerns of Caregivers in ‘letting go’ and give them confidence in letting their child with haemo-philia take part in exercise and other social activities.

Idea The session could also be split into groups where all participants submit a question on a piece of paper. These questions are put into a bowl and the session chairs pick out questions to answer to the group. This provides the opportunity to submit questions anonymously.


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Gym Based Session: Weight-Orientated / Home – Focused Training, including warm-up and cool-down – 1 hour

This session is focussed on teaching the older Participants how to exercise at home and participat-ing in gym-based activities, most notably weight-training, and how to do this safely.

Session: Quiz – Endurance, Power and CV Fitness

Facilitator: Healthcare professional



Session Objectives:• Reinforce key learnings via a competitive quiz• Create an element of fun by pitting Participants

against Caregivers

List of suggested materials: • Quiz questions (please refer to workbook) • Quiz answer sheets for filling-in

(please refer to workbook)

Session: Physical activity, gym-based session: weight-orientated or at home



Facility: Gymnasium or large sports hall

Session Objectives:• Educate older boys about how they can build

muscle tone and strength in the gym (using weight machines or free weights at home)

• Educate younger boys about physical exercises that can be completed daily at home, and how they can be incorporated into their daily routine or done with friends / family to make them more enjoyable

List of suggested materials: • Exercise balls and exercise stretch bands (number

to be determined based on Participant age range)

• Light home weight sets (number to be determined based on Participants age range)

• Safety equipment (e.g. knee and elbow pads)• Take home sheets with pictorial representations

of exercises (optional)

Endurance, Power and Cardiovascular Fitness Quiz – 15 minutesThis quiz gives the Participants and Caregivers a chance to see what they have learnt. For this session, the Participants and Caregivers can be split into teams.

Idea If you create your own quiz it could be linked to the Pedometer contest and the Mini Olympics, where participants are encouraged to accumulate points throughout the Camp. Consider awarding a small prize to the quiz winners.

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Tailored Plan Assessment (15 minute slots, in parallel with the relaxation time) – 2 hoursThe overall objective in creating a tailored plan is to provide Participants with guidance on how to partici-pate in physical activity on a regular basis moving forward. Following the first day of the camp, it is

also an opportunity to check there are no bleeds or changes in mobility and joints amongst the Participants. These assessments can be done in 15 minute slots so that the Participants and Caregivers who aren’t being seen can enjoy some relaxation time.

Session: Making Healthy Choices: Putting Theory into Practice




Session Objectives:• Reinforce key messages (you are what you eat)

ensuring Caregivers understand the benefits of a healthy diet for their family’s health

• Facilitate a forum to discuss how ‘favourite’ family meals can be adapted to provide a healthy and balanced diet

List of suggested materials: • ‘Healthy Shopping’ – things to consider when

buying food for the family • TalkingJoints – ‘let’s talk healthy eating’

Session: Tailored Plan Assessment

Facilitator: Rehabilitation specialist / Fitness expert / Healthcare professional

Audience: Participants (Caregivers can attend, based on Participant’s preference)

Facility: Classroom or medium indoor space

Session Objectives:• Develop tailored 1:1 fitness plans and goals

for Participants to continue post-Camp• Set in place targets for each Participant, and log

in Fitness Camp Workbook• Assess whether there is any change in joint

status following x2 days of physical activity

List of suggested materials: • x4 chairs or tables • Joint Status Checklist• Fitness Camp Workbooks (please refer to

workbook)

Making Healthy Choices: Putting Theory into Practice – 1 hourFollowing on from the first healthy eating session, as Caregivers will purchase food for the Participants and their family, this session is specifically designed

to help them provide the Participants with healthy meals that can be eaten by the whole family. It also provides an opportunity for the Caregivers to share healthy eating tips and meal ideas.

Idea This session could involve a quiz where Participants are encouraged to vote on the types of food they think are highest and lowest in fat, for example. This quiz could also be linked to the points collection in the quiz’s and games throughout the Camp.

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Day 3

Mini-Olympics Part 1: Participants vs Caregivers – 1 hour

The idea of a Mini-Olympics is to provide the Participants and Caregivers with a ‘fun finale’ to mark the last day of the Fitness Camp.

Session: Free Relaxation Time

Facilitator: Rehabilitation specialist / Fitness expert / Healthcare professional



Session Objectives:• Provide space for Participants and Caregivers to

relax and unwind after the day’s activities whilst they wait their turn for the tailored plan assessment

List of suggested materials: • TV and DVD player + age-appropriate movie • Bean bag chairs / soft seating• TV and Nintendo Wii and age-appropriate games • Books• Puzzles / Board games

Session: Mini-Olympics

Facilitator: All camp staff


Facility: Outside grassy space or large indoor space

Session Objectives:• Reinforce key learnings and exercises from

the duration of the Camp in a fun format

List of suggested materials: • Exercise balls and exercise stretch bands • Safety equipment (e.g. knee and elbow pads)• Soft ball (football sized) and cones• Spoons and foam ‘eggs’• iPod /music station

Format:This session can comprise of three simultaneous events for teams of five people:Soft ball: a team relay course involving dribbling the ball between cones and pass the ball between team members Egg and Spoon race: team relay course involving core balanceMusical Statues: team game of who can hold balancing poses / exercises when the music stops

Relaxation Time (in parallel with the Tailored Plan Assessment session) – 2 hoursEveryone needs a chance to relax after the various sessions held at the Camp. While the Participants are not having their tailored plan assessment, they

can relax in an informal space provided, where there are comfy chairs, movies, games, and books to unwind. This provides also an opportunity for the attendees to network.

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Celebration and Awards Ceremony Camp Close – 1 hour and 45 minutesFollowing the Mini-Olympics sessions, it makes sense to hold an awards ceremony to mark the effort and achievements of all the participants!

Session: Mini-Olympics



Facility: Outside grassy space / basketball court

Session Objectives:• Reinforce key learnings and exercises from the

duration of the Camp in a fun format

List of suggested materials: • x2 soft balls (football size) • x4 temporary goals / goal posts• X1 whiteboard (to note game results) • x1 soft foam ball (volley ball sized), low volley

ball net (approx. 1 m height)• Safety equipment (e.g. knee and elbow pads)

Format:This session can comprise of two simultaneous events for teams of 5 people:Sit down Volleyball competition: Participants vs Caregivers (knock-out stages of competition – i.e. winning team goes through to next round) Non-contact football: Participants vs Caregivers (knock-out stages of competition – i.e. winning team goes through to next round)

Session: Celebration Ceremony



Facility: Outside grassy space or large indoor space

Session Objectives:• Celebrate individual successes from the Camp

(each Participant will receive a GHFC Award for something they did/achieved during the Camp)

List of suggested materials: • Fitness Camp Awards Certificates

(provided in your pack)

Mini-Olympics Part 2: Participants vs Caregivers – 45 minutes

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Now that we have taken you through all the stages of running a Haemophilia Patient Fitness Camp, we hope that you now feel equipped and ready to start planning your own. We wish you all the best in developing your successful Fitness Camp.

AcknowledgementThis material was developed through financial support by Novo Nordisk Health Care AG.

For further information please contact:Novo Nordisk Health Care AG, Thurgauerstrasse 36 / 38, 8050 Zurich, Switzerland

Participant MaterialsIt is recommended that you provide Participants with materials to use at the Fitness Camp and to take home with them.

Template documents are included within this toolkit for your modification. All materials have been devel-oped by Novo Nordisk in collaboration with an International Steering Committee of haemophilia healthcare providers.

Below is a list of the materials you may want to consider modifying for your Fitness Camp: • Participant and Caregiver invitation pack• Successful applicant pack• Curriculum template• Fitness Camp Diary• Fitness Camp Awards Certificate

Camp Diary This is to be provided to Participants at the begin-ning of the Camp and includes: • Welcome note • Profile card – to complete and display together on

Camp to ensure Participants get to know each other

• Information on exercise and healthy eating• Camp diary – allowing the Participants to record

what they have done each day, what they enjoyed and what to continue with when back at home

• Friend address book – Participants can pen the names and contact details of friends they have made at the Camp

PedometersYou may want to incorporate a pedometer contest into your Camp. This will highlight the benefits of walking to Participants and introduce some healthy competition. You will need to provide each Participant with a pedometer for the duration for the Camp and ask them to record their daily step count.

Top tip Consider awarding the Participant who has taken the most steps a prize at the closing award ceremony or combine all Participants’ steps to give an overall total for the Fitness Camp.

Final Note

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Appendix

Timeline of EventsThis timeline can be used as a checklist of the tasks you will need to think about when planning your Fitness Camp.

Please note the timings listed here are given as a guide for Camp organisers, and can be adapted to suit the needs of individual Camps.

Description of task to be completed until ...

6 months before camp





1 month before camp

If applicable, secure funding to run the Fitness Camp (p. 11)

Begin the patient and Caregiver recruitment process. Allow at least 3 months for the recruitment process

Ensure HCP / staff participation in the Fitness Camp (p. 8 – 11)

Create your Camp curriculum for each day of the Camp (p. 12 – 18)

Locate your Camp venue and assess its facilities in line with the activities on your curriculum (p. 5 – 7)

Assess patient applications to the Camp

Contact the successful applicant and provide them with the relevant documents

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Notes

Changing H

aemophilia

® is a registered trademark ow

ned by Novo N

ordisk Health C

are AG

and the Apis bull logo is a registered tradem

ark of Novo N

ordisk A/S.

Date of preparation: A

ugust 2018 HQ

18CH

00002D

evelopment of the N

ovo Nordisk H

aemophilia Fitness C

amp m

aterials was supported by N

ovo Nordisk H

ealth Care A

G

The Novo Nordisk Haemophilia Fitness Camp is a programme of information, education and support for health care professionals, patients with haemophilia and their carers that addresses the importance of physical activity (feel something) and how and why it should be safely and simply introduced into their daily routine (do something).

We hope that by helping people identify ways to adopt a healthy lifestyle, we can improve the way they live with haemophilia for the better.

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