Topic > Youth with Degenerative Neuromuscular Diseases: The Effectiveness of Muscular Dystrophy Association Summer Camp in Improving Self-Help

IndexAbstractSummer Camp Influences Self-EfficacyCamp OrganizationArea of ​​InterestRecommendationsConclusionAbstractThis article evaluates a facility that provides a service to adolescents – MDA Summer Camp – and its effect on the development of self-efficacy, autonomy and identity of adolescents with degenerative neuromuscular diseases. Four different research papers were cited to help prove these influences. Two articles analyzed the effect of summer camps on adolescents with chronic illnesses. An article focused specifically on men with DMD (Duchenne muscular atrophy). Say no to plagiarism. Get a tailor-made essay on "Why Violent Video Games Shouldn't Be Banned"? Get an original essay This was mentioned in the paper to give an idea of ​​how living with DMD hinders gaining independence. The fourth article discussed the influence of cross-gender friendships on adolescent development into early adulthood. This helped the paper make recommendations for how the MDA field could enable more appropriate opposite-sex relationships as these friendships guide adolescents toward healthy development. It is difficult to understand how influential MDA camp is on teenagers and volunteers without having fully emerged into the environment during that summer week, but this article attempts to give a clear view of how the lessons learned from the camp stay with the teenagers for the rest of the their life. lives.Summer Camp Influences Self-EfficacyOne of the fondest memories of summer, especially for teenagers, is summer camp. One particular summer camp is leaving a huge impact on thousands of families across the United States. The MDA summer camp for the state of Virginia hosts teens for a week away from home at the Airfield 4-H Center in Wakefield, Virginia. Children between the ages of six and seventeen thrive in a friendly environment, away from their parents, filled with various activities such as fishing, swimming, horse riding, treasure hunts, sports, games and more. Each night of the week features a different special event for attendees. To become a camper there is only one requirement other than the age limit; all individuals suffer from a neuromuscular (degenerative) disability. This camp is hosted by the Muscular Dystrophy Association (MDA), a non-profit organization fighting to cure muscular dystrophy and other related neuromuscular diseases by raising funds for research and drug development (Muscular Dystrophy Association, 2016) . While the research is important, the main focus is on the affected community, particularly adolescents. Young people attending MDA's summer camp live with muscular dystrophy, ALS, spinal muscular atrophy and other related physical ailments. The camp does not include any expenses for families who send their children thanks to the donations that financially support the camp (Muscular Dystrophy Association, 2016). Camp MDA leaves a profound impression on the teens who attend camp along with staff members, volunteers and counselors. However, the greatest influence is on the self-efficacy, autonomy or independence, and identity that campers develop while participating in camp. Each camper is carefully matched with a counselor, unless there is a shortage of counselors, in which case some receive two campers. . All counselors are individuals sixteen years of age or older who volunteer to assist and provide ascompanions to their camper. While some campers attend only one year, most attend every summer until they "graduate" from camp at seventeen; however, memories of the camp and the people involved remain incessantly in their lives. This develops a family-oriented atmosphere because some campers, counselors, and staff grow together for years and continue to stay in touch outside of camp. The MDA summer camp in Virginia is held at the Airfield 4-H Center in Wakefield. During the summer, the conference center has the capacity to accommodate 208 people in its accommodations (The Natural Place to Be, 2016). People come and go part time for different camps and events. The equestrian facility includes one hundred horse stables, two arenas and scenic trails. Campers have the opportunity to participate in the petting zoo, go horseback riding and take a horse-drawn carriage ride. There is a swimming pool where swimming and pool party take place. In addition to the swimming pool there is a lake where campers have the opportunity to fish or take a pedal boat ride. There are also various buildings used to house campers and different camp activities, such as the mess hall, Farm Fresh Building, and cabins. The Airfield Center is known for its conferences and other recreational events. MDA Summer Camp uses the dining room, which can hold up to two hundred people; the Farm Fresh Building, which can hold up to three hundred; and the cabins, which have the capacity to hold from forty to seventy-five people. The Farm Fresh building includes a gymnasium where the Carnival, power football demo and part of Color Wars take place. There is a trailer attached to the building where the arts and crafts are located. The dining room (canteen) is where meals, dances, movie nights, talent shows and announcements take place. The Morgan Cabin, which can accommodate up to seventy-five people, is where campers can socialize, play games and find snacks. It is also the home of the Wii tournament, the meeting place for treasure hunts and the organization of the Pajama Jam.Camp Each year the camp has a different theme. Examples of previous themes are: "Spy Camp", "Medieval Times", "Time Travel", "Camp Olympics" and many others. The camp buildings are decorated appropriately to coordinate with the theme and the weekly program follows the theme; the various camp activities are matched as closely as possible to the theme. There are a few activities to choose from each day, and each evening also features a different "special" activity. Every day there is a wake-up call at seven, breakfast at eight, lunch at noon, rest time after lunch and dinner at half past five or six in the evening. The wake-up call consists of camp directors singing "Wakey wakey Eggs and Bakey" over the intercom in all cabins, playing other obnoxious songs over the intercom, and walking around the cabins playing instruments such as the trumpet and drums. One of the camp directors even pushed people to scream if they were awake. The lights go out at ten p.m., at which time counselors are responsible for keeping their campers in bed. This is an example of what a general camp schedule might look like: Sunday: Check-in, meet with counselor, drop off medications, explore camp until dinner and nighttime activity. Campers and caregivers are assigned to different rooms in the cabins. There are approximately three or four pairs of campers and counselors in each cabin, for a total of six to eight people per room. Night activities: bonfires and skits. S'mores will also be prepared or provided. Monday: daytime activities. Nighttime activity: pool party or movie night. Tuesday: daytime activities. Nighttime activity: carnival. The carnival includes a photo booth, a rideon "haunted" hay, game shows, Harley Davidson motorcycle rides, food, a bathtub, and, in the past, "weddings". Campers would ask other campers, counselors, and staff members to “marry” them. If accepted, they would organize a pseudo wedding ceremony at the carnival; the people involved will wear a veil or top hat and will each receive a pseudo wedding ring. In recent years this has been removed from the carnival. It was simply an activity attended by friends or others who had childhood crushes, but it may have been considered controversial, which is why it may have been pulled from traditional camp activities. Wednesday: daytime activities. Treasure hunt and tie dye. Color Wars. Whoever completes the treasure hunt with the greatest number of objects found and in the shortest time possible, from first to third place, manages to choose an individual from the camp to make a pie in the face with whipped cream. Night activity: dancing. Thursday: color wars. Wii Tournament (some years). Power Soccer Demo.Color Wars is a competition tradition featuring a series of games and activities where the Blue team faces off against the Red team. The competition features tug-of-war, a "pie-eating" contest, retrieving a watermelon from the deep end of the pool, relay races, a pine forest derby and more. Teams are designated based on odd or even booth numbers. Power Soccer is the first competitive sport designed for electric wheelchair athletes. Since the vast majority of MDA participants are wheelchair users, this is a good opportunity to try a sport they can actually participate in. Getting involved in a sport can help people establish their identity. “Involvement in sport appeared to have declined…individuals' awareness of their disabilities was tentatively linked to identity exploration and expression…” (Groff, 1998). Because MDA Camp is committed to helping campers achieve their identity, power football is a useful outlet for eligible campers to discover who they are and be part of a family-oriented team. Night: Talent Show. Pajama Jam: Campers can stay up late and spend time in the main cabin, Morgan. People usually stay up to play card or board games, listen to music, and have conversations. Friday: Pack your bags and check out at noon. Daytime activities consist of fishing, swimming, arts and crafts, pedal boats, petting zoo or horse riding. On some days there are special activities during the day such as tie dye, scavenger hunts and color wars. Area of ​​Interest According to G. Stanley Hall, teenagers are going through a time of storm and stress. However, this period of emotional, physical, and cognitive development and confusion is heightened when an adolescent is also faced with a chronic physical disability (Allsop, 2012, p.1). A multitude of children spend countless hours in hospital for routine check-ups which occur more often for them than for their able-bodied counterparts. They undergo a series of surgical procedures to try to give them a more comfortable lifestyle. There are unexpected overnight stays in the emergency room for the flu, which is at high risk of turning into pneumonia or some other high-risk illness. “For some young people [with Duchenne muscular dystrophy] it made sense not to go out much in the winter or be around other people for fear of getting a chest infection that could kill them” (Abbott & Carpenter, 2015, p. 75). For adolescents with degenerative neuromuscular diseases, the typical flu can escalate quite easilyinto pneumonia, which could result in death if left untreated because their immune system is too weak to handle the paralyzing disease. MDA participants suffer from muscular dystrophy (MD) and spinal muscular atrophy (SMA). With these particular conditions come a number of health problems, which in the most severe cases include respiratory problems such as breathing and reduced lung function (some are temporary or permanent breathing machines), swallowing problems, decreased muscle function, scoliosis, brittle bones, muscle pain and spasms. Most campers are in wheelchairs and therefore require assistance with daily activities. Some independence, but others may need help with transferring, dressing, bathing, feeding, toileting, seating and other daily activities. . A key aspect of adolescence is establishing an identity, and one identity factor is the search for autonomy. Some adolescents with disabilities have difficulty finding adequate independence, especially away from their overbearing parents who overdo caution and codependency in daily life.life. “It was evident that this limited youth's choices and ability to develop independence from their parents” (Abbott & Carpenter, 2015, p.71).MDA Camp helps campers build independence. Larry Chip Young Junior, a previous camper, says, “I promise that through Camp MDA I will become a stronger, independent prism. Through camp I understood, from an early age, that we campers could freely pursue life. People have dedicated and volunteered their lives to show us what we are worth against the obstacles we were born with.” Campers stay away from their parents for a week and are helped by a younger chaperone who encourages them to be as independent as possible. Although a week may seem like a short duration, this autonomy practiced in the field will stay with people thereafter continuously for years if not forever. Once campers realize that they are capable of being independent despite having a disability, they gain everlasting autonomy. According to the US Census, approximately one-fifth of the population has a disability. Part of that population includes young people. “Over two million adolescents in the United States suffer from some form of chronic illness and often have reduced levels of social self-efficacy and social performance” (Allsop, 2012, p. iii). Their disability not only affects them physically, but these particular adolescents are also at greater risk of lacking social skills. “Self-efficacy is the belief that you can master a situation and produce positive outcomes” (Santrock, 2016, p. 375). Achieving self-efficacy is a factor in developing effectively in adolescence and is necessary for emerging positively in adulthood. Attending MDA camp gives people the chance to socialize with others who are "just like them." The MDA field increases their self-efficacy; seeing other campers with similar situations who are achieving in life gives them hope and confidence that they too can succeed. This summer camp is also a good opportunity for participants to put social benefits into practice. It's easier to converse with someone you can identify with, but it's often a challenge to communicate with people who are superior or better off than you. If they are able to interact socially with people who look like them, then they can develop the tolerance to interact with virtually anyone. Recommendations As the years go by, camp directors and staff change over time..