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© 2009 American Public Health Association
DOI: 10.2105/AJPH.2009.171694
GOING PUBLIC |
Aimee Swartz is a medical writer living in Northampton, MA, and is a 14-year return volunteer at Camp Sunrise
Correspondence: Correspondence can be sent to Aimee Swartz via e-mail: aimee{at}aimeeswartz.com. Reprints can be ordered at http://www.ajph.org by clicking on the "Reprints/Eprints" link.
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ABSTRACT |
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As the sun sets behind the first campfire, children's faces are silhouetted in the darkness. In this moment and the days to follow at Camp Sunrise, it is impossible to tell who is living with HIV/AIDS and who is not. According to Jina Gonzalez, that is precisely the point of camps—like Ohio-based Camp Sunrise—that are devoted to serving children affected by HIV/AIDS.
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INTRODUCTION |
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Camp Sunrise is part of a small constellation of summer camps founded in response to the growing number of HIV-positive children in the early- and mid-1990s. Each summer, these camps welcome anywhere from dozens to hundreds of children living with or otherwise affected by HIV/AIDS. Although the programmatic bases vary from camp to camp—some camps focus solely on recreation, while others include therapeutic components—most camps serving children affected by HIV/AIDS share the common goal of creating a positive, enriching experience where campers are free from the social burdens their disease brings.
"Programs like Camp Sunrise offer campers a chance to play, dance, swim, or create without the fears and worries they shoulder outside of the camp week," said Ken Gladstone, a doctoral student in clinical psychology at Stanford University. Gladstone has served as Camp Sunrise's director since 1995. "Camps also allow the children to join with other children in similar situations and to see that they are not alone in their struggle."
By all accounts, camps serving children affected with HIV/AIDS are like thousands of other summer camps nationwide. Daily activities include swimming, boating, hiking, sports, arts and crafts, and outdoor challenges. Evening activities include campfires, talent shows, scavenger hunts, and dances. Campers sleep alongside counselors in cabins that pulse with laughter and chatter long after the lights have gone out for the night.
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To an onlooker, the only tangible sign that these camps are different is the medical staff on hand to administer antiretroviral medicines and a host of other drugs. However, camp staff—and, to a certain extent, the campers themselves—understand that camps like these serve a population with unique needs, even compared with camps serving children with other serious illnesses. "HIV/AIDS continues to inspire a staggering level of stigmatization that is not present with many other diseases or disabilities," said Gladstone. "From a very young age, campers understand that countless people in their communities still associate blame and shame with HIV/AIDS, and they struggle to cope with ignorance. Discrimination leaves them isolated both emotionally and physically. Our hope is to lift this burden by creating a space where the campers can feel loved and accepted unconditionally and can live ‘normally’ without stigma or fear, even if only for one week."
Patty Hillkirk, a gestalt psychotherapist who founded Pennsylvania-based Camp Dreamcatcher in 1996 and continues to serve as the camp's executive director, echoes Gladstone's concern for the difficulties facing children affected by HIV/AIDS. "Many of the children we see are coping with a multitude of stressors with very little support, including their own family members' uncertain disease progression, complicated medical regimens, and grief related to multiple and simultaneous losses of family members," Hillkirk said. "Given the demographics of the disease, HIV-infected children and teens are also confronting many social inequalities—racism, poverty, lack of access to services, violence, and prejudice—that enable the AIDS epidemic to thrive in the first place. We create a therapeutic environment that allows campers to have fun and to process these issues, if they choose, with adults and peers who understand what they're going through."
Staff at many camps have seen how HIV/AIDS affects entire families, so some camps also welcome children who are related to someone living with HIV/AIDS or who are grieving the loss of a loved one to AIDS. "HIV/AIDS is a family disease, sometimes with multiple generations living with the disease. Siblings and children of people with HIV are being treated as if they are tainted or dangerous. Many uninfected children assume the family's caregiving role. If the parents are ill, we see children as young as thirteen running the household as best they can," said Gladstone. "Although these children are not sick, the challenges they face are extraordinary, especially for young people already burdened with secrets and with the emotional toll of having ill family members. Camp was designed to offer those children a chance to be kids again too."
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A DIFFERENT RITE OF PASSAGE |
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According to the American Camp Association, camp has been a unique American tradition for nearly 150 years and is a rite of passage for 10 million children each summer.1 Specialty camps have also become increasingly popular as a way to address the psychosocial needs of children and teens with various chronic or life-threatening diseases, including cancer, cystic fibrosis, asthma, diabetes, and, more recently, HIV/AIDS. Yet, although camp staff have reported the positive effects that camps have had on campers, the camp experience had not been formally evaluated until recently.
In the largest study on camper outcomes to date, the American Camp Association and independent research group Philliber Research Associates surveyed campers and their guardians from 80 camps nationwide from 2002 to 2003 to assess campers' positive identity, social skills, physical and thinking skills, and positive values and spirituality. Of the 15,000 families contacted for the study, 5,281 families completed pretest surveys, 3,400 completed posttest surveys, and 2,294 completed follow-up surveys. Study results show that campers and guardians alike reported significant increases across all four domains, suggesting that, following the camp session, campers became more confident, experienced increased self-esteem, developed more social skills, grew more independent, showed more leadership qualities, and were more willing to try new things. Researchers found that these increases were maintained six months after the campers left camp.
Although there is little research on camps specifically serving children affected by HIV/AIDS, anecdotal accounts from these camps point to many important improvements in campers' quality of life and daily life skills. According to Angelica M. Valenzuela, vice president of programs for Los Angeles–based Children Affected by AIDS Foundation (CAAF), which supports the world's only network of summer camps for children affected by HIV/AIDS, "In reports from CAAF-funded summer camps and at the yearly conference we hold to exchange ideas and share results among the CAAF Camp Network, we consistently see many positive changes in the campers, especially those who attend camp year after year. These changes range from increased levels of social support and less isolation to a greater ability to talk about their disease. We also see improvements in campers taking their medicines and doing better in school."
"After being at camp, I grew in ways where I didn't even know I was stuck," said Gonzalez, who spent eight summers at Camp Sunrise before returning as camp staff. "I had a lot of shame about AIDS. I didn't know who I could trust to disclose my status to or how to deal with people's ignorance around the disease. For many years I lived a secret, but being open at camp gave me the courage to live openly, to make friends I could trust and be myself with, and to not be ashamed of who I am or what I have. Knowing that I had the support of my counselors and friends made it easier to challenge myself and step outside of my comfort zone."
Camps serving children affected by HIV/AIDS also focus on creating a sense of structure and routine that may not otherwise be part of campers' lives. "The majority of campers are from disadvantaged and marginalized communities. A lot of campers have led extremely difficult lives and live well below the poverty level," Valenzuela explained. "Sometimes they don't know daily life skills because they have never had anyone to teach them. At camp, they learn to make their bed and brush their teeth every day and take their medicine every day."
Because HIV is unforgiving of even infrequent nonadherence, low rates of treatment adherence among children living with HIV/AIDS is a particular concern shared across camps, as well as within the larger HIV/AIDS community. According to the International AIDS Society-USA, 95 percent adherence is necessary for optimal results,2 but adherence among adolescents and young adults ranges from 27 percent to 41 percent.3
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Most camps require campers to comply with their provider-designated medical regimen while they are at camp. For many campers, camp is the only environment where medication is given consistently, with confidentiality and respect, in a caring and supportive atmosphere. A small study conducted in 2002 at Camp Dreamcatcher found that 78 percent of nonadherent campers reported that it was easier to take their medication while at camp because a nurse dispensed the medicine, friends also took medicine, and they learned the importance of taking medication to stay healthy.4 Researchers on the same study also found that 63 percent of campers' parents or guardians reported a positive difference in their child's willingness to take their medication at home after spending a week at camp.
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COMING OF AGE WITH HIV/AIDS |
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The Centers for Disease Control and Prevention (CDC) estimates that, as of 2006, there were 6704 adolescents aged 14 to 19 living with AIDS in the United States. The CDC reports adult and adolescent HIV infections together in a single figure, making it impossible to state precisely how many adolescents are infected with HIV, but the numbers run into the tens of thousands.
"I never thought that I would grow up," said Gonzalez. "It was never anything I questioned; I just accepted it, because that's what everyone told me. But as I got older, I realized there were all these things I didn't know or wasn't taught because everyone just assumed I wouldn't be here. I've had to learn as I go—things like figuring out how to be open about HIV, how to disclose my status to people who need to know, and how to take care of myself and manage my health. Camp helped because I had counselors and older campers as my role models and other kids my age who were dealing with the same stuff."
There was a time—not too long ago—when it was unthinkable that campers like Gonzalez would live long enough to age out of the program and return as counselors. But breakthroughs in antiretroviral medication have enabled thousands of children born with HIV to live into the teenage years and beyond. In response to the needs of campers like Gonzalez, summer camps that once predominantly served young children have expanded their programming to help campers address multiple issues as they come of age. Camps are now helping adolescent campers disclose their HIV status, navigate their sexuality, manage their own health care, and improve their treatment adherence.
"During the early years of Camp Dreamcatcher, when most of our campers were young, our focus was mainly to create a therapeutic environment where they could have fun and take a break from their everyday stressors," said Hillkirk. "We still try to achieve this goal, but as the campers get older, we know that they also need a place where they can talk about and work through the challenges they face—like taking their medicine regularly or having their first intimate relationship—which often they are unable to discuss in their everyday lives." Camp Dreamcatcher is one of several camps that now offer sexuality workshops, retreats on treatment adherence, and planning workshops for higher education and careers. Camp Dreamcatcher also has a year-round teen speaker's bureau that creates a safe space for adolescents to disclose their personal HIV/AIDS stories with local schools, colleges, and community groups.
California-based Camp Laurel, which offers a summer-camp program for children and adolescents affected by HIV/AIDS, recently launched a Teen Adventure Camp where campers ages 13 to 17 can develop responsibility, accountability, trust, independence, communication, conflict-resolution skills, and teamwork. "Our Teen Adventure Camp is a place where teens can build up their self-esteem and self-worth, self-confidence, independence, respect for self, and ultimately believe in themselves," said Margot Andrew-Anderson, who founded Camp Laurel in 1992. "This program goes beyond offering risk-avoidance skills to offer support and compassion, and to empower the youth to believe in themselves and believe that they can make the changes necessary to build a successful life path."
Other camps have followed Camp Laurel and Camp Dreamcatcher's lead. In addition to counselor-in-training programs, most now offer teen-specific "tracks" or programming during the week of camp that enable older campers to take advantage of mentoring opportunities while learning leadership and life skills that will benefit them in their everyday lives.
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THE NEW FACE OF STAFF |
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Many of these camps have further expanded their programming to allow adolescents and young adults who are aging out of traditional summer-camp programs to attend camp in a new role that was once unimaginable: as staff.
In 2003 Camp Sunrise launched its junior counselor program, which enables former campers who are no longer eligible to participate in camper programming to return as counselors. Junior counselors are paired with a seasoned counselor and are provided with additional support and mentoring from volunteers throughout the week.
"Former campers now serving as counselors are of tremendous value. They relate to our youth in a way that many staff never will because these guys have walked in those campers' shoes," said Gladstone. "Not only are they incredible role models, but their presence is a confirmation that camp makes a difference. Now that they are able to, they want to give back to a community that has been such a meaningful component of their lives."
Gladstone has helped 15 young adults transition from camper to junior counselor at Camp Sunrise. One of the first was Gonzalez, who explained, "Probably more than anything else in my life, Camp Sunrise has just been this very positive force. I really felt like my counselors believed in and pushed me to be the best I could be, regardless of my HIV status, and that just opened up my world. Now that I'm a counselor, it's my job to make sure other campers feel that way too."
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Acknowledgments |
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Thank you to Jina Gonzalez for your courage and for always being the bravest one in the room. Many thanks also to Ken Gladstone, Patty Hillkirk, Margot Andrew-Anderson, and Anjelica Valenzuela for your incredible leadership and service to the HIV/AIDS community.
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Footnotes |
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Peer Reviewed
Accepted for publication May 20, 2009.
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References |
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TOPABSTRACTINTRODUCTIONA DIFFERENT RITE OF...COMING OF AGE WITH...THE NEW FACE OF...References |
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1. American Camp Association. Youth development outcomes of the camp experience—directions. Available at: http://www.acacamps.org/research/enhance/directions.php. Accessed May 7, 2009.
2. Murphy DA, Sarr M, Durako SJ, Moscicki AB, Wilson CM, Muenz LR. Barriers to HAART adherence among human immunodeficiency virus-infected adolescents. Arch Pediatr Adolesc Med. 2003;157(3):249–255.
3. Rao D, Kekwaletswe TC, Hosek S, Martinez J, Rodriguez F. Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care. 2007;19(1):28–33.[CrossRef][Web of Science][Medline]
4. Wang H, Eppes S, Chung W. Self-Reported Influences on Antiretroviral (ARV) Compliance Among Children at HIV Camp . Paper presented at: Thomas Jefferson University Resident Research Forum; 2004; Philadelphia, PA.
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