CAMP FOR CHILDREN AND YOUTH WITH DIABETES - Camps for C...

CAMP FOR CHILDREN AND YOUTH WITH DIABETES

October, 1988 11
CAMP FOR CHILDREN AND YOUTH WITH DIABETES:
SPECIFIC AIMS AND ORGANISATION
Dr. S.K. Garg,
Department of Experimental Medicine, Postgraduate Institute of Medical
Education and Research, Chandigarh
Dr. M. Joshi
Department of Endocrinology Diabetes, All India Institute of
Medical Sciences, New Delhi, India
A. Specific AIMS:
Organisation and conduct of health education/training cum recreation
camps for children and youth (under 21 years) with diabetes mellitus in India,
as an integral part of their diabetes care.
Education and training of physicians and other health professionals and
students about various facets of diabetes mellitus and its management.
Novel observations about diabetes mellitus in children and youth, and
further investigations of societal/individual benefit.
B. Significance:
Diabetes being a life long debilitating disease with widespread medical and
social ramifications, demanding high degree of discipline on the part of the
patients and health professionals alike, such organised health maintainance and
promotional activities may contribute to the improvement of the health and
overall well being of individuals (in the early tender years and prime of life) with
diabetes, betterment of family welfare may also be anticipated.
C. Preliminary Work/Progress Report:
The value of camps in diabetes care appears to be well accepted in the
economically more affluent western world. With the ongoing social changes in
the post-independance India and the increasing health awareness/consiousness of
the aspirant society, the need for such opportunities for our children and youth
seems apparent. Experience from other centers in diabetes camping can be useful,
and necessary collaborations are being sought (EP Joslin and Clara Barton
Camps, MA USA, Eagle's Nest Camp, NC USA, Camp Midicha, MI USA);
however the social and cultural conditions prominent in India need consideration.
October, 1988 12
D. Methods and Design:
1. Venue: Rajkumari Amrit Kaur Bhawan, Summer Hills, Simla, HP.
2. Dates: Summer camp: May 23 to 29, 1988
3. Demography: Diabetes mellitus, 6 to 21 years age; co-ed, both boys
and girls; all socio-economic and educational groups; absence of any acute complications
and incapacitating associated diseases; Camper strength : 30 to 50
(actual 28), grouped into 5 to 7 (actual 4) cabins of 7 to 10 children each.
Besides the full time/overnight campers, parents and siblings, and other interested
medical/professional personnel can visit the camp during the day and participate
in any of the activities.
4. Finances: No profit, no loss: setting up a "Diabetes Camp"
account - tax deductible exempt with RSSDI, active fund raising (pharmaceuticals
and health care product companies, families - voluntary donations, government).
Scholarship scheme, to partially or fully waive the costs for 'poor' but
eligible children.
5. Clinical activities: Complete admission (or precamp medical review)
history and physical examination; urine and blood sugar monitoring; instructions
in self-home blood glucose monitoring, exercise/physical activity programmes;
health education/training : diabetes education programme.
6. Recreational and social activities: games, hiking, play/skits
7. Research: Diabetes screening; Childhood diabetes registry.
8. Camp mannual and orientation (for both health care professionals and
campers/families.
Objectives
To provide a structured medical cum recreational camping experience for
children and youth with diabetes mellitus (and their families) in a non-hospital
("life") setting.
To educate and train physicians, other health professionals and students
about various facets of diabetes mellitus and its management.
To make novel observations about diabetes mellitus in children and youth,
and conduct further investigations of societal/individual benefit
For children and youth with diabetes mellitus:
1. To help children and youth with diabetes learn more about the disease,
its control and optimal management.
October, 1988 13
2. To help teach children with diabetes self-discipline in their approach
to the disease and in their approach to life in general.
3. To optimise the medical program of children with diabetes in an
attempt to seek normalisation of blood glucose levels without hypoglycemia and
ketoacidosis.
4. To enable children with diabetes meet and associate with other children,
including those also with diabetes.
5. To provide counselling for parents in effectively dealing with their
children's diabetes.
6. To provide a safe and healthy environment for such organised
activities.
For medical/health personnel:
1. To become more familiar with the metabolic abnormalities, complications
and management of diabetes mellitus, at the clinical and investigative levels.
2. To become more adept at balancing diet, exercise and insulin therapy
to achieve optimal control of diabetes.
3. To appreciate the effects of social and emotional factors on children
with diabetes.
4. To become more familiar with simultaneous management of minor
medical problems and first-aid.
5. To participate effectively in complex team effort.
For both:
1. To understand the compatibility between learning, living and fun.
It is hoped that the benefits accrued to all the camp participants will outlast
the actual camp period, and will contribute to their welfare long beyond the
camp session.
Philosophy:
Camping is defined as "a sustained experience which provides a creative,
educational and recreational opportunity in group living in the out-of doors;
it utilises trained leadership and the resources of nature to contribute to each
camper's physical, mental, social and spiritual growth." (American Camping
Association). We endorse the perception that we should "conceptually think of
these programmes as being CAMPS for CHILDREN and YOUTH who have
DIABETES MELLITUS (in that order of priority)." American Diabetes Association).
October, 1988 14
Further, the philosophy of care of diabetes at camps can include:
1. Striving for a positive attitude of acceptance of diabetes:
2. Taking advantage of the unique opportunity for education about diabetes
in terms of knowledge, techniques and attitudes:
3. Aiding the camper in attaining his/her fullest potential in all areas;
4. Providing adequate control of diabetes for growth and development,
and striving for excellence of control to try to minimise the complications of
diabetes;
5. Striving for metabolic and health care safety, including avoidance of
severe hypoglycaemia and ketoacidosis.
Camp medical care is to enable and assure a beneficial and an enjoyable
experience at camp. It must work from within and in conjunction with the
overall camp program. It must be determined by a team approach, including
various medical disciplines (physicians, nurses, nutritionists etc.) and children
with diabetes and their families. Medical management is to be sensitive to the
needs and concerns of children and youth. Medical care and diabetes education
cannot be separated.
Organisation:
Medical Personnel:
General responsibilities:
It must be emphasised that all camp activities are a 'TEAM EFFORT'
with all the members participating in all activities. There should be a joint
free-flowing interaction with the medical staff also participating actively in all
recreational activities as well. Participation of each member (physician, nurse,
nutritionist etc.) to clarify various points in individual life pattern of diabetic
children will be encouraged. Coordinated service can be facilitated by pre-camp
education: Camp Mannual, pre-camp orientation sessions (AIIMS, PGIMER)
and daily medical staff group meetings at the camp at predesignated times (end
of morning assembly and post-dinner evening rounds). Adequate record keeping
would be necessary.
Camp Director
The camp director will have the ultimate organisational, administrative
and operational responsibility for all the activities of the camp. He/she will be
always available for consultation for all problems, both medical and non-medical,
also previding arbitration for any differences of opinion. He/she is responsible
October, 1988 15
for recruitment of all medical staff and staff education, overall health and safety
of all at camp, overall compliance of children and youth with diabetes and the
medical staff with the camp policies and guidelines. He/she will preside over the
inauguration and farewell events, and lead the morning assembly and the morning
and evening medical staff meetings. He/she will be responsible for delivering/
approving any statements made to the news media and other agencies
regarding medical aspects of the camp.
Administrative Committee:
The administrative committee along with the administrative secretaries
(AIIMS, PGIMER) will assist the camp director in the successful and smooth
conduct of the camp activities, involving a major coordinating role. One of its
members can also provide back up/coverage to the camp director during his
absence/emergencies.
Finance Committee:
Responsibilities include operation of the Diabetes Camp bank account,
coordinating fund raising and donation collections, maintainance of budget
records, and preparation and submission of the annual financial report to RSSDI
general body.
Accommodation Committee:
Responsibilities include booking and precamp survey of the camp site and
related housing facilities, ensuring adequacy of essential amenities (eg. water
supply, electricity, heat-fuel, bathrooms etc.), short term hiring of additional
amenities (eg. extra mattresses, linen etc.), allotment of cabins to each group,
and arranging accommodation facilities for the infirmary, common room/lecture
halls, kitchen/dining room/snack bar.
Transportation Committee:
Responsibilities include booking of all necessary modes of travel from
AIIMS/PGIMER to camp sites, and return; medical institute vehicles, train, bus,
minivans, cars; provision of travel timetable and any special instructions; also
transport arrangement for morning and afternoon outings and 24 hour transport
coverage for medical emergencies.
Registration Reception Committee:
Responsibilities include distribution of camp flyer and registration forms
to all interested families, pre-camp counselling, interview, evaluation and approval
of qualified children and youth with diabetes (and their families), alloting the
October, 1988 16
campers into different cabins (violet, blue, green, yellow, orange, and red), day 0
pre-camp medical review at AIIMS/PGIMER (history, physical examination,
investigations and therapeutic guidelines), reception and introduction events on
day 1 — compilation and distribution of comprehensive discharge summaries
and parent advice on the last camp day, analysis of patient/parent feedback
forms, follow-up and recommendations for future.
Medical Care Committee:
Comprising a physician and a nurse (for both PGIMER and AIIMS groups
combined), responsibilities include procurement of all necessary (routine and
emergency) medical supplies for travel and camp stay. Organisation and overall
incharge of the infirmary (2 patients beds : duty doctors area) and total camp
medical care, daily infirmary coverage from 0800 to 2000 hours, preparation of
night duty physician roster (for infirmary coverage from 2000 hours to 0800
hours), 24 hour emergency consultation, liaison with the regional tertiary care
medical facility (eg. Simla Medical College; PGIMER), evaluation and countersigning
of discharge summaries and parent-advice and post-camp medical followup.
They will have key role in daily medical staff meetings and will review the
daily progress of diabetic campers with the counsellors of each cabin. They are
trouble shooters for medical problems of any kind. Registration forms, case
sheets and all other important medical records will be safely filed and stored in
the infirmary with easy access to all medical staff.
Nutrition Dietary Committee:
Responsibilities include pre-camp planning and scheduling (day by day time
table) of nutritionally adequate meals and snacks for children with diabetes and
other campers (also travel and picnic lunches and snacks), advice regarding
purchase of materials and bulk food orders, overall supervision of food production
/ distribution (by 2 — 4 kitchen staff and volunteers, also running the camp
snack bar) — diabetic cookery and kitchen hygiene, and inventory and management
of kitchen stores. They will participate in diet prescription (writing and
filing diet cards), provide meal plan and nutritional counselling (individual and
group), and present the Nutrition and Dietetics part of the overall diabetes education
program (formal course number DEP-002, Management of diabetes, meal
plans; nutrition posters and daily notices in the dinning hall, nutrition/diet
games and quizes, novel diabetic recepies: pamphlets, possible practical demonstrations
to campers and parents) and contribute to record keeping (nutrition/diet
portion of case sheets and discharge summaries : formulation of a home diet
programme) and post-camp follow-up. Note: all food distribution will be on a
self-service buffet format, with the children being directly involved in the choice
of food selection and amounts.
October, 1988 17
Diabetes Education Committee
Responsibilities include preparation and mailing of pre-camp diabetes education
packet (Joslin’s Diabetes Teaching Guide, Atonement with Diabetes, any
available hindi translations etc.), compilations of all diabetes education literature
and teaching aids of all sorts (charts and diagrams, overhead transparencies, projection
slides, audio cassettes, videocassettes, hindi/english hand outs, diabetes
games), presentation of the twice daily pre scheduled diabetes education classes
(selected formal courses DEP-001 to - 019 including invited speakers from outside
the committee), individual patient/parent counselling as required, record keeping
(diabetes education checklist, patient/parent education evaluation forms, diabetes
education portion of case sheets and discharge summaries) and post-camp followup.
They will procedure and maintain all the necessary hardware' : black/white
board, writing materials and pens, overhead transparency projector, slide projector/
screen, television and videocassette recorder and/or any other equipment
deemed necessary by the committee.
Recreation Entertainment Committee
They are the makers of fun and frolic. Responsibilities include planning,
material procurement and conduct of free time games, movies, plays and other
activities, and overall organisation of the planned afternoon outing, morning
outing (picnic), and other prescheduled get togethers and social events (inauguration/
introduction, talent search, campfire and farewell event, prizes etc.). Equal
involvement of the diabetes campers and medical staff must be sought. Also
camp photography and video filming.
Parent Patient Committee
Responsibilities include providing precamp suggestions, guidance and
assistance to the camp director and other medical staff on various relevant matters
from the parent children point of view. They can volunteer for any other organisational
activity of their interest including fund raising.
Camp Counsellors
They represent the key/fundamental elements in the overall medical supervision
and counselling, and will lead the functional camping unit referred to as
the cabin. Each counsellor will be in TOTAL, COMPLETE and ROUND THE
CLOCK charge of 7 to 10 children and youth with diabetes and with their
medical/sociological background and leadership abilities, will be to these children
their intimate friend, compassionate philosopher and a stern guide. Living in the
cabin itself, he/she will be the primary link between the diabetic campers and the
October, 1988 18
rest of the medical staff. He/she will supervise the morning wake-up, assembly,
meal gatherings, urine and blood glucose testings, insulin injection, insulin dose
adjustments, cabin clean-up and retirement. He/she will conduct the midnight
(0200 hours) flash checks for hypoglycemia for the children in their respective
cabins every night (however, 2 or more counsellors can pool this responsibility by
mutual arrangements and earn uninterrupted sleep on such days). He/she will
be fully responsible for the completion of the case sheets, writing daily progress
notes, deciding next day's insulin dosages and schedules (after bedtime urine and
blood checks) and preparation of the initial draft of discharge summaries.
Camp counsellors can identify a qualified Senior Camper from among the
members of the cabin, and seek his or her assistance/example in the successful
execution of all the respective cabin's responsibilities (eg. assisting the counsellor
in supervising the younger campers with urine and blood checks, insulin injections;
guiding the new campers as they adjust to the novel environment and
experience etc.).
Camp counsellor and all other physicians are requested to bring their
medical bags to the camp.
Medical records
1. Registration form (pre-camp): completed by the registration reception
committee, stored in the infirmary.
2. Information kits (pre-camp): mailed by the registration reception
committee to all prospective camp families.
3. Case sheets (pre-camp, camp, post-camp): Initiated at the time of the
day 0 precamp medical review (AIIMS/PGIMER): jointly entered and maintained
by the registration reception committee, medical care committee an counsellors;
nutrition dietary committee and diabetes education committee also to enter their
respective progress notes and plan; conveniently and safely stocked in the
infirmary.
4. Medication cards: Prepared by the medical care committee and filed
in the infirmary.
5. Diet cards: Prepared by the nutrition dietary committee and filed in
the dining hall.
6. Patient log books: Entries done by the diabetic campers themselves,
supervised by counsellors, kept in the camper's pocket or in the cabin.
7. Diabetes education program materials (check list, course handouts
evaluation forms): Prepared and maintained by the diabetes education committee.
October, 1988 19
8. Patient feedback forms (camp, post-camp): Registration reception
committee.
9. Parent feedback forms (camp, post-camp): Registration reception
committee.
10. Discharge summary and recommendations (end-camp): Initial draft
prepared by the camp counsellors, completed and finalised by registration reception
committee, verified and countersigned by the medical care committee : original
copy handed over to patient/parent: carbon copy retained with the case sheet
in the camp medical file.
11. Home insulin adjustment algorithms: an appendix to the discharge
summary (and handled as above Discharge summary and recommendations).
Activity
Registration:
Precamp medical review (day 0):
Travel (onward):
Reception:
Inauguration and Introduction:
Typical day at camp:
Wake-up:
Breakfast:
Assembly:
(Medical staff meeting)
Free time—morning:
(Morning outing)
Diabetes education programme:
Lunch:
Free time—afternoon:
(Afternoon outing)
Dinner:
(Medical staff meeting)
Evening get-together:
Clean-up:
Retire:
October, 1988 20
Urine checks: Urine glucose tests to be done by the diabetes campers
(double voided urines) themselves DAILY immediately before breakfast, before
lunch, before dinner and at bedtime, and immediately entered in their diabetes
log book. Urine ketones to be tested on sick days and as advised by physician.
(Note: Diastix will be provided during the camp)
Blood tests: Complete blood glucose profiles: before breakfast, before
lunch, before dinner and at bedtime to be performed on all children on day 2 and
day 4 (also 0200 hour blood glucose to be checked during the midnight between
camp days 2 and 3). Spot blood glucose checks prn for suspected hypoglycemia
on any day or for any associated illness.
(Note: Reflectance meters and the necessary blood glucose strips will be
provided to each counsellor for his cabin's needs).
Insulin Injections:
As prescribed by the physician, these will be administered before breakfast,
before lunch, before dinner and/or at bedtime by the diabetic camper himself/
herself, under the supervision of the counsellor of the respective cabin. Medical
staff will administer insulin only to very young children not yet trained at self
insulin administration, and during sick days. Next day's insulin dosages and
schedules are decided by the counsellor of the cabin, and entered in the patient
log book by the diabetic campers themselves after the bedtime urine/blood
glucose checks.
(Note: The diabetic campers will bring their own insulin supplies and the
necessary syringes and needles; however, the infirmary will have good stocks of
the same for times of need and emergencies).
Snacks
A round the clock self-service snack bar will be available. For diabetic
campers the scheduled snack times will be around 1000, 1600 and 2200 hours.
Flash checks
To detect unsuspected/silent nocturnal hypoglycemia, nightly rounds are
made at 0200 hours (Or at 2400 and 0300 hours) using the flashlight technique.
Children who respond by squinting or otherwise avoiding a light shined at the
closed eyelids are merely asleep and need not be roused to exclude hypoglycemic
coma.
Farewell event:
Travel (return):
Follow-up (post camp):
October, 1988 21
Locale
Camp office;
Assembly site:
Common room/lecture hall:
Dining hall:
Snack bar:
Kitchen and food store:
Infirmary:
(Medical record area)
Cabins:
Toilets and bathrooms:
Outdoor areas:
DIABETES EDUCATION PROGRAMME
Course No. Course title
DEP—001 Diabetes an overview
DEP—002 Management of diabetes: meal plans
DEP—003 Management of diabetes: insulin injections
DEP—004 Management of diabetes: oral drugs
DEP—005 Management of diabetes: exercise and yoga
DEP—006 Monitoring diabetes control
DEP—007 Diabetes: special problems and emergencies
(insulin reactions and ketoacidosis)
DEP—008 Diabetes: adjusting insulin dosage
DEP—009 Diabetes: sick day guidelines
DEP—010 Diabetes: personal hygiene and foot care
DEP—011 Living with diabetes
DEP—012 Diabetes and eyes
DEP—013 Diabetes and kidneys
DEP—014 Diabetes and hypertension/heart disease
DEP—015 Diabetes and nervous/muscular system
DEP—016 Diabetes and pregnancy
DEP—017 Diabetes in children, adolescents and youth
DEP—018 Diabetes: travel, camping and recreation
DEP—019 Diabetes: research and future
October, 1988 22
CAMP FOR CHILDREN & YOUTH WITH DIABETES
Time Day 0 Day 1 Day 2 Day 3 Day 4 Day 5 Day 6
Date 23 May 24 May 25May : 26 May : 27 May 28 May 29 May
0600 Wake-up Wake-up Wake-up Wake-up
0700 B'fast B'fast B'fast B'fast B'fast Arr.
(travel) Delhi
0800 Precamp Dep. Asmbly Asmbly Asmbly Asmbly
medical C'garh DEP-005
0900 review : Free Free Morning Free
PGIMER/ time time Outing time
AIIMS
1000
1100
1200 Arr. DEP-001 DEP-003 DEP-019
Simla -007 Parent
seminar
1300 Lunch Lunch Lunch Lunch Lunch
(picnic)
1400 Registrn Free Afternoon Free Pack-up
Settle time outing : time Farewell
down Simla
1500
1600 DEP
Simla
1700
1800 DEP-002 DEP-009
-010
1900 Dinner Dinner Dinner Dinner Dinner
(travel)
2000 Dep. Inaugurtn Talent DEP-006 Campfire Arr.
Delhi Introducn search -008 C'garh
2100
2200 Clean-up Clean-up Clean-up Clean-up
Retire Retire Retire Retire
2400 Flash Flash Flash Flash
checks Check Checks checks
0200 Blood Home
glucose sweet
home
October, 1988 23
Snacks: 1000, 1600 and 2200 hours
Urine and blood tests: before b'fast, before lunch, before dinner and at bedtime
(Urine glucose tests daily; blood glucose profiles on days 2 & 4; spot blood
glucose prn for suspected hypoglycemia or associated illness)
References
1. Stephens JW. Marble A. Place and value of Summer camps in management of juvenile diabetes.
Amer J Dis Child, 82:259, 1951
2. McCullagh EP. Camps for diabetic children (Editorial). Diabetes 4:246, 1985
3. McCraw RK, Travis LB. Psychological effects of a special summer camp in juvenile diabetics.
Diabetes 22,275, 1973
4. Skyler JS, Ellis GJ, Delcher HK. Carolina's camp for diabetic children. I. Report of first five years
of operation. North Carolina Medical Journal, 935-938, 1973
5. Younger D. Brink SJ, Barnett DM, Wenworth SM, Leibovich J. Madden PH. Diabetes in youth. In :
Joslin's Diabetes Mellitus, EPs: A Marble, LP Krall, RF Bradley, AR Christleib, JS Soeldner, 12th
edn. Lee & Febiger, Philadelphia, 1985
6. Ljumovic R. Basta S, Sacer LJ, Kovacevic R, Metelko Z, Bastalec A, Skrabalo Z. Our ten year
experience in the education of school children with juvenile diabetes: advantages and problems. Diab
Croat, 15-1, 37-44, 1986
7. Diabetes Care, 2: 39-45, 1979

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