The camp experience is seen as primarily a North American phenomenon with more than 11 million children and adults attending approximately 12,000 camps throughout the United States (ACA 2005). Many of these camps are dedicated to catering for young people whose lives are impacted by conditions such as Limes Disease, Cancer, Diabetes, Cerebral Palsy and ADHD. They recognize the personal, social and psychological significance of living with such a condition.
Camp – “enriching lives, building tomorrows” (ACA 2005)
At the age of 19 and as a keen drama student who loved to sing, I was introduced to the American summer camp experience. It was a summer that shaped my life. I returned – not always to the same camp – year after year after year. Six years later and a qualified social worker that now only sings in the shower, I was seconded to work as the Resident Camp Director at the Barton Center for Diabetes Education, in Massachusetts. This is a camp, conference centre and year round retreat for young people and their families impacted by diabetes. I took on this role as a professional committed to enhancing the lives of young people, sincerely believing in the power of the camp experience to develop stronger, happier individuals.
I am pro-camping. I believe attending camp is an opportunity that fosters a positive sense of self and as such should be available to all young people, specifically those faced with chronic illness such as diabetes. I would however assert that the current model of health in the U.K. allows such programmes to be largely overlooked and underused, therefore denying young people of an effective method of support that promotes a positive relationship to living with a medical condition.
A life worth living
At a recent conference on current UK research into diabetes I was indeed shocked and surprised to find that during the evening’s presentations quality of life for individuals living with diabetes was completely overlooked. Rightly so, the conference discussed a multitude of research surrounding the search for a cure. However, what I really wanted to know was about the ‘here and now’. How can a young person who is diagnosed with diabetes today lead a long, productive and successful life right now?
Insulin Dependent Diabetes Mellitus (IDDM), also known as Type 1 Diabetes or Juvenile Diabetes, is a chronic metabolic disorder characterized by the failure of the pancreas to produce insulin. Insulin plays a key role in metabolism, promoting energy storage and growth. Insufficient insulin prevents the body from regulating the use of carbohydrates, fats and proteins appropriately, and results in elevated blood glucose (sugar) levels.
IDDM is a life threatening condition. The risk of developing IDDM in youth is virtually higher than all other severe chronic conditions (www.diabetes.org 2004). Three quarters of the deaths of young people under the age of 35 diagnosed with IDDM are attributable to their condition (http://who.int 2004). The incidence of IDDM has increased significantly in the last second half of 20th century. Although this may be partially due to incomplete records and/or the fact that IDDM was rarely diagnosed prior to the discovery of insulin, it cannot be overlooked that IDDM is a condition which requires necessary attention (www.jdrf.org 2004).
Challenges that young people living with IDDM face surpass the ‘typical’ transitional experiences of youth. Restrictions, differentness, negative emotion and adaptation are common themes that arise concerning the impact of diabetes on daily life (Faro 1999). In my experience, a young persons’ experience of life with diabetes is often characterized by attending hospital appointments, monitoring blood sugars, watching food intake and planning exercise.
Life is thus defined by a medical regime that imposes restrictions and limits. If the underlying quest of all those working with young people is to encourage their ability to thrive, then should we not be seeking to foster an approach to diabetes where it is seen not as a hindrance but as a positive feature of their life, opening up new opportunities that motivate and inspire?
Camp till it’s cured
Over the last few decades there has been an international emergence of camp settings that cater for young people with diabetes (www.diabetescamps.org 2004). In Great Britain, Diabetes UK provides several camps across the country for children, young people, adults and families impacted by diabetes. They provide an onsite, multi-disciplinary team, consisting of Doctors, Nurses, Diabetes Specialists, Dieticians, Social Workers, and numerous well-trained, knowledgeable staff, many of whom live with the IDDM themselves (Barton 2004).
A high staff to camper ratio ensures that positive, individualized, age-appropriate attention can be given to all aspects of camp life, from homesickness, to management of a medical condition, to having athletic skills. For many young people, diabetes camp is the first time diabetes terms such as ‘hypo’, ‘going low’, ‘being high’, ‘doing an injection’, ‘snacking’, ‘ketones’ and ‘testing’ can be used without explanation” (Ramoutar 2002, p.1).
For a young person with IDDM, attending a specialist camp “offers a unique opportunity to be amongst people who understand” (www.diabetes.org.uk 2004). It can provide a social opportunity which is believed to break the cycle of deprivation and broaden the range of possibilities open to the young person (Rutter 1979 in Hauser et al. 1989). For some young people, attending diabetes camp can be the first time they have met someone of their own age who also has IDDM. Such group affiliation can provide a forum for self-recognition and reflection. Ideas can be explored in a relatively safe environment in a space that is based on equality, unlike the adult/child relationship (Cotterell 1996).
Diabetes education takes place, more often than not, during ‘teachable moments’ that occur whilst playing football, swimming in the pool and at the dinner table (Barton 2004). The camp provides young people access to health care professionals outside of the medical office, simultaneously allowing the health care professionals to observe the young people as young people, rather than patients. I would assert that these changes in dynamics promote a better understanding of intentions, needs and behaviours, thus allowing for individualised treatment regimes to be established, which are more likely to be understood and followed. Furthermore, camps provide a structured environment, opportunity for development of social skills and a level of attachment to positive adult role models.
“When I went to the camp [my] life really started.”
I believe that camps generally get a bad press in this country. The British ideology of ‘camp’ comes from the perceived stereotypical American ‘happy clappy’ camp environment where everybody parades false visions of happiness, Scout camps, where you learn to be prepared, or the controversial ‘Brat Camp’, a place where you go if you are ‘trouble’. I, however, sincerely believe that camps assist in equipping young people with the necessary skills to help them excel in life.
It is essential that research continues into a cure for diabetes. However, the hope of this cure does not alleviate the impact of diabetes on young people who are living with it today. By supporting young people with diabetes through a model of health that focuses on the absence of disease and the implication of diabetes solely on physical well-being, we are doing a disservice to young people who live with the condition.
Diabetes camps seek to enable people with IDDM to live well. They aim to establish a supportive environment, which is safe, enabling and sensitive to the needs of the individual through the provision of structure and consistency, diabetes education, positive individual attention from adult role models, a constructive impact on physiological and physical health and an opportunity to develop social skills and partake in outdoor exercise (Barton 2004).
Such programmes can have an important role to play as a complementary method of support that can facilitate adjustment to living with diabetes. They can serve to equip young people with the life skills and experiences needed to thrive whilst alleviating isolation and fostering mutual support.
“I love camp. It is the only place I can just be me”
Cotterell, J. (1996) Social Networks and Social Influence in Adolescence, Routledge: London
Faro, B. (1999) The Effect of Diabetes on Adolescent’s Quality of Life. Pediatric Nursing, (May 1999) 25(3): 247
Hauser, S., Vieyra, M., Jacobson, A., and Wertlieb, D., Family Aspects of Vulnerability and Resilience in Adolescence: A Theoretical Perspective, in Dugan, T. and Coles, R. (Ed) (1989) The Child in Our Times; Studies in the Development of Resiliency, Brunner/Mazel, Inc: New York
Ramoutar, L. (2002) All Psyched Up. Balance, (November/December, 2002)190: 1 – 4
Pictures and quotations courtesy of The Barton Center for Diabetes Education, Inc.