Promoting Resilience through Fun! The magic of Camps for Children with Chronic Illnesses

1. Promoting Resilience through Fun! The magic of Camps for Children with Chronic Illnesses Susan Lee, MEd, CCLS Camp Boggy Creek Statewide Recruitment Officer 954-881-0553 Slee@campboggycreek.org Sunday, 1:00-2:00pm

2. Today’s Expectations • Define Resilience • Recognize unique challenges that impact children with serious illnesses • Gain knowledge about resources available in their local communities • Final Rule of camp is always to…. Have Fun!

3. Negative Psychosocial Impact of Chronic Illness • In survivors of childhood cancer, there is a higher rate of PTSD, anxiety & depression than in matched controls Stuber, et al. Pediatrics, May 2010; Seitz, et al. Eur J Cancer, Jun 2010. • Children with chronic kidney disease have higher rates of behavioral & emotional disorders Marciano, et al. Pediatric Nephrol, Feb 2011. • Children with temporal lobe epilepsy treated surgically, now seizure-free, report adjustment difficulties associated with learning to be “well” Micallef, et al. Epilepsia, Oct 2010

4. Negative Psychosocial Impact of Chronic Illness • Adult survivors with congenital heart disease have an increased risk for & under-treatment of anxiety & mood disorders Kovacs, et al. Int J Cardio, Nov 2010 • Children with Type I Diabetes have 19% higher mental health referral rates & 17% lower school completion rates than controls Northam, et al. Diabetes Care, July 2010.

5. Resilience The ability to “bend, but not break” or even grow in the face of adversity (Masten & Gerwirtz, 2006) • Social support has been identified as one of the strongest predictors of resilience (Torres, Southwich & Mayes, 2011) • Strong social support is related to higher self-esteem, self confidence, positive coping abilities and lower rates of depression and PTSD Children living with serious illness can have difficulty developing and maintaining friendships. Establishing a strong social support system can be challenging. Camp helps to bridge the gap by providing opportunities for campers to interact with peers who can understand their own experiences and illness.

6. A history lesson… Thirty five years ago when medical camps began to appear, many campers did not survive their illness. Camps provided diversion, entertainment and respite for families. Now, the majority of campers survive. Camps provide life skills that are needed to develop mature, physically, and emotionally healthy adults.

7. American Cancer Society Cancer Facts and Figures, ACS 2014 • Since 1975, childhood cancer incidents have increase slightly by an average of .06% • Mortality rates have steadily declined by 2.1% (1975-2010) • 379, 112 Childhood cancer survivors are alive in the US (as of 2010)

8. American Cancer Society Cancer Facts and Figures, ACS 2014 • 1 and 285 children in the US will be diagnosed with cancer before the age of 20 • Cancer 2nd leading cause of death in children following accidents • Estimated 10,450 new childhood cases and 1,350 deaths will occur in the US in 2014

9. Targeted Outcomes of CampAmerican Camp Association

10. It is in the research… Children with chronic illnesses are at a greater risk of: • Behavior problems • Poor self-concept • Social withdrawal It is estimated that chronically ill children are 3 times higher at risk of significant psychological or social problems during childhood as compared to healthy children. Camps for children with chronic pediatric conditions are designed to meet children’s specific physical needs while providing a rewarding camp experience as close to “normal” as possible. Promoting strong social skills and the development of support networks for children and adolescents with serious illness plays an important role in fostering resilience.

11. Positive Psychosocial Outcomes Pre & Post camp HRQoL evaluation of 61 patients attending camp sponsored by the Crohn’s and Colitis Foundation of America • Increased social functioning • Better acceptance of IBD symptoms • Less distress regarding treatment interventions Shepanski, et al. Inflamm Bowel Dis. Feb 2005.

12. Positive Psychosocial Outcomes • 29 children with cardiac defects age 8-18 years evaluated for levels of anxiety before and after camp • Decreased levels of anxiety regarding parental separation • Increased openness to discuss medical experiences, physical scars & emotional impact of their illness • Parents reported decreased anxiety as well

13. Positive Psychosocial Outcomes • Children of parents with a negative expectation about camp benefited more • However, parents with a negative expectation of camp were less likely to allow children to attend • CONCLUSION: Those who are most resistant need it the most! Simons, et al. Cardiol Young, Oct 2007.

14. Positive Psychosocial Outcomes • 135 campers with epilepsy evaluating: • Knowledge of condition & self-management • Self-esteem & self-perception • Attitude toward illness • Adaptive coping skills & quality of life Cushner-Weinstein, et al. Epilepsy & Behavior, Aug 2009.

15. Positive Psychosocial Outcomes • Personal confidence increased • Campers returning to camp year after year benefited most • Patients develop a greater willingness to accept responsibility & reduced dependency on caregivers Cushner-Weinstein, et al. Epilepsy & Behavior, Aug 2009.

16. Medical Camps Residential medical camps are places where: • Children are “concentrated” together. • The focus is on children – not on illness and medical care. • Staff actively promote peer connections and activities that build life skills.

17. Medical Camps • Shared experiences with peers with similar illnesses and disabilities. • Ability to choose activities or interactions • Opportunities to make lasting friendships • Development and practice of social skills • Physical challenges that build confidence and independence

18. Camp Isn’t Just for Patients • Parents of chronically ill children report: • More anxiety & depression • Higher levels of parenting stress • Limited social functioning • Camp attendance can provide a respite for caregivers, decreasing depression, stress, and improving general psychological functioning Meltzer and Johnson. Children’s Health Care, 2004.

19. Camp Isn’t Just for Patients • Siblings of children with cancer experience a more serious burden from the illness than is perceived by the parents Houtzager, et al. PediatrHematolOncol, Jan-Feb 2005. • Siblings of cancer patients who attended summer camp report improvement in HRQoL • When controlled for bereaved parents, parents, too, report improvement in HRQoL for siblings Packman, et al. J PsychosocOncol, 2005.

20. It Doesn’t Have to be an “Illness” • Bereavement Camps for children and adolescents who’ve lost a parent, sibling, etc. • Weight Loss Camps to teach healthy habits to obese children and adolescents

21. Medical Camps Studies have been done to identify the short and long term benefits of medical camps on psychosocial development. Camp Boggy Creek has taken part in a collaborative study by the Serious Fun Children’s Network and Yale University looking at the benefits of attending the Network camps.

22. Yale Child Study Center Outcome Evaluation Study Serious Fun Camp and Beyond: The Impact of Attending Residential Summer Camp for Children Living with Serious Illness. In 2012, 919 parents and 764 campers participated in the research study to examine impact of the camping experience. Findings: • After attending summer camp parents reported changes in a number of positive attributes in their children. • 70% reported a positive increase in confidence, independence, self-esteem and interest in social activities (6 months after camp) • Friendships and social connections formed at camp emerged as an important part of the camp experience.

23. Serious Fun Outcomes Study • Pre and Post questionnaire survey Questions related to such characteristics as • Emotional resilience (ability to bend but not break) • Quality of life (physical and psychosocial) • Friendships/social supports • Awareness of illness • How child felt about attending camp

24. Serious Fun Outcomes StudyImpact on Camper Resilience after camp • Camper Quality of Life- significant decrease in the frequency of psychosocial problems, such as attentiveness, feeling sad, and an increase in positive relationship building • Illness-Related Stress and Post-Traumatic Stress Disorder (PTSD) - significant decrease in illness-related stress and PTSD symptoms, such as distress and avoidance • Positive Coping Strategies- parents/caregivers reported a significant increase in positive coping strategies, such as goal attainment and adaptability • Friendships and Social Support- significant increase in friendship satisfaction following camp • Happiness- camper-rated happiness about health and ability to do things they like to do was significantly higher

25. Serious Fun Outcomes Study Psychosocial Impact At 1 months there was a decrease in • illness related stress • PTSD symptoms At 6 months, all resilience-related indicators maintained their increase level

26. Serious Fun Outcomes Study Friendships • 98% of campers reported that they made at least one friend • At 1 mo 58% of campers reported staying in touch with new friends from camp. • At 6 mo 48% were still in touch! Facebook, texting, email, phone, visits, letters

27. Serious Fun Outcomes Study • 83% of parents/caregivers reported increase in child’s confidence • 80% reported an increase in self-esteem • 76% reported an increase in maturity • 74% reported an increase in independence • 72% reported an increased interest in social activities At 6 months, all of the positive changes were maintained

28. Serious Fun Outcomes Study Limitations • small sample size • wide variation in families – stress levels, resources, severity of illness • 12 different camps were attended – national and international • no control group of any kind

29. If It Is So Good, Why Don’t All Patients Go To Camp? • Lack of awareness • Healthcare providers • Parents/Caregivers • Fear of parent to leave child • (Perceived) Fear of child to be without parent • Perceived lack of safety and/or availability of medical care

30. Medical Camps Are Safe

31. Medical Camps Are Safe Kinsella, et al. Eur J Oncol Nurs, Sep 2006.

32. Infectious Concerns “Low prevalence of complications in severe neutropenic children with cancer in the unprotected environment of an overnight camp” • Attendance at a overnight summer camp for children with cancer was examined. • 34 patients were severely neutropenic • 9/34 (24%) were hospitalized for F&N • 1 patient was culture positive • Most children attended all camp activities Tabori, et al. Pediatr Blood Cancer, Feb 2007.

33. Medical Camps We all know that camp is good for the campers. Statistics are great, but they just don’t tell us what goes on. Kids tell us: “Coming to Camp made me realize I wasn’t alone. Every morning I had to take a lot of pills, which was relatively new to me. But everyone else had to take pills, too! I really think that week of camp was really the first normal week I had since being diagnosed.”

34. Medical Camps “I remember when I was going through chemo and I came here. I felt like a normal kid. I could take my bandana off and not worry about people staring at me.” “I think when I leave camp I shall be in serious hug withdrawal. Everybody hugs here. The counselors say it’s good for the soul.” “Because I feel safe, I have an alternate personality at camp that is different than home. I’m less cautious to do fun and exciting things, and while I feel independent I don’t feel as alone as I sometimes do at home.”

35. Mission & History To foster a spirit of joy by creating a free, safe and medically-sound camp environment that enriches the lives of children with serious illnesses and their families. • Since 1996, Camp Boggy Creek has served over 62,000 seriously ill children and family members. Annually, the Camp welcomes over 3,500 children and family members. What began as a dream and vision of a few has become reality for thousands of children with chronic or life-threatening illnesses. Because every child deserves a childhood, a chance to play & sing, a chance to learn, and a chance to make new friends.

36. Programs that Empower As a year round retreat, Camp Boggy Creek is able to serve thousands of campers and their families through activity-packed weekly and weekend camps. • Family Retreat Weekends (September- April) • Summer Camp (June-August) • Leader in Training/Camper in Transition (LIT)

37. Family Retreat Weekends September- April • Family Retreats are designed to provide the camp experience not only to children with serious medical conditions, but also their immediate families. Family Retreats provide parents an opportunity to bond with other families and to receive orientation to the Camp and meet staff. • Annually, there are 17 illness specific retreat weekend programs, each hosting 32 families (approximately 125 family members attending each retreat).

38. Summer Camp June- August • Summer sessions are designed to give the campers a multitude of opportunities that will foster their personal growth and independence. • Activities include boating, fishing, arts and crafts, theatre, horseback riding, and miniature golf. • There are eight sessions each summer with each hosting an average of 125 to 150 children.

39. Leader in TrainingCamper in Transition (LIT) • The LIT program is designed to teach former campers (ages 17 to 18 years) to assume leadership roles that not only develop the skills necessary to be a leader, but also inspire (mentor) other seriously ill children to realize their hopes and dreams. • Camp Boggy Creek hosts 20 LIT participants each year. To date, over 180 former campers have participated with over 40% returning to Camp as a volunteer or counselor.

40. Groups Served Camp Boggy Creek welcomes children ages 7-16 with the following conditions: • Arthritis / Rheumatic • Asthma (severe) • Cancer • Craniofacial • Diabetes (family retreat weekend only) • Epilepsy • Heart • Hemophilia / Bleeding disorders • Immune Deficiency • Inflammatory Bowel Disease • Kidney • Sickle Cell • Spina Bifida • Transplants • Ventilator Assisted Care (family retreat weekend only)

41. What you should know about Camp Boggy Creek • There never is a fee to attend . • Facilities are specifically designed for children with chronic or life-threatening illnesses. • Programs are inclusive and adaptive so ALL children may participate regardless of their medical condition. • Activities include archery, swimming, arts & crafts, boating & fishing, horseback riding, and many others! • Camp Boggy Creek is not government funded. Our annual operating budget is derived from the generosity of individuals, corporations, foundations and medical partners. • Each session takes place under the careful supervision of doctors and nurses with support available 24/7 in our state of the art medical facility (The Patch).

42. Medical Facility-“The Patch” • Camp Boggy Creek is a $23 million facility which includes a state-of-the-art medical facility called “The Patch” • Our full time physician and nurse are supplemented by volunteer doctors and nurses. These volunteers specialize in the illness or disease group being served during family retreat weekends or summer sessions. • Camp partners with hospitals, treatment centers and health organizations throughout Florida. Not only do they refer campers but many of them also provide financial support, volunteer their time and donate needed equipment and supplies.

43. How to Apply: • All applications are available on-line at www.campboggycreek.org • Campers must complete an on-line application and medical form to be considered for acceptance • An complete application does not guarantee acceptance • Camp Boggy Creek has an priority system to ensure that everyone has the opportunity to attend camp

44. Selection Criteria: • Severity • Number of times attended camp • Aging out campers may have a higher priority • Gender in summer camps, even ratio for our cabin balance • Camper / families must commit to opening and closing dates • Family member in the service/ over seas • Special family circumstances • Loss of a loved one • Loss of job / home

46. Camp Boggy Creek 30500 Brantley Branch RoadEustis FL, 32736www.campboggycreek.org866-462-6449Camper Recruitment: Ext. 4252Medical Volunteer Recruitment: Ext. 4282Susan Lee: 954-881-0553 or slee@campboggycreek.org

47. References • American Camping Association (2002). Children with cancer- Positive benefits of camp. • American Cancer Society. Cancer Facts and Figures 2014 • Epstein, Stinson, & Stevens (2005). The Effects of Camp on Health-Related Quality of Life in Children with Chronic Illnesses: A review of the literature. Journal of Pediatric Oncology Nursing, Vol 22: 89. • Briery B.G., & Rabian B, PhD (1999). Psychosocial changes associated with participation in a pediatric summer camp. Journal of Pediatric Psychology, Vol 24, No 2 (pp.183-190). • Masten, A. S., & Gewirtz, A. H. (2006). Vulnerability and Resilience in Early Child Development. In K. McCartney & D. Phillips (Eds.), Blackwell handbook of early childhood development. (pp. 22-43). Malden, MA, US: Blackwell Publishing. • Mayo, RN BSN (2002) Camp for children with on the rise: Normalcy and fun help with coping and healing of disease and disabilities. American Camping Association • Tominey, PhD, Southwick, MD, & Mayes, MD (2013). SeriousFun Camp and Beyond: The impact of attending residential summer camp for children living with serious illnesses. Yale Child Cancer Study Center. • Torres, A., Southwick, S. M., & Mayes, L. C. (2011). Childhood resilience: adaptation, mastery, and attachment. In S. Southwick et al. (Ed.), Resilience and Mental Health: Challenges Across the Lifespan. Cambridge: Cambridge University Press. • Young, C (2007). Decrease in anxiety associated with participation in a camp for children with cardiac defects. Cambridge University Press, 17; 631-637