PowerPoint Presentation

Promoting Resilience through Fun! The magic of Camps for Children with Chronic IllnessesSusan Lee, MEd, CCLSCamp Boggy CreekStatewide Recruitment Officer954-881-0553Slee@campboggycreek.orgSunday, 1:00-2:00pm

Todays ExpectationsDefine ResilienceRecognize unique challenges that impact children with serious illnessesGain knowledge about resources available in their local communities Final Rule of camp is always to. Have Fun!Negative Psychosocial Impact of Chronic IllnessIn 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

Negative Psychosocial Impact of Chronic IllnessAdult 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.ResilienceThe 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.

A history lessonThirty 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.

ROCK Camp Example- Started in Florida group of 18 campers 6American Cancer Society Cancer Facts and Figures, ACS 2014Since 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)

American Cancer Society Cancer Facts and Figures, ACS 20141 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

Targeted Outcomes of CampAmerican Camp Association

8 goals9

It is in the researchChildren with chronic illnesses are at a greater risk of: Behavior problemsPoor 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 childrens 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.

919 Parents and 764 Campers participated in this research study to examine the effects of summer camp10Positive Psychosocial OutcomesPre & Post camp HRQoL evaluation of 61 patients attending camp sponsored by the Crohns and Colitis Foundation of AmericaIncreased social functioningBetter acceptance of IBD symptomsLess distress regarding treatment interventionsShepanski, et al. Inflamm Bowel Dis. Feb 2005. Positive Psychosocial Outcomes29 children with cardiac defects age 8-18 years evaluated for levels of anxiety before and after campDecreased levels of anxiety regarding parental separationIncreased openness to discuss medical experiences, physical scars & emotional impact of their illnessParents reported decreased anxiety as well

Positive Psychosocial OutcomesChildren of parents with a negative expectation about camp benefited moreHowever, parents with a negative expectation of camp were less likely to allow children to attendCONCLUSION: Those who are most resistant need it the most!Simons, et al. Cardiol Young, Oct 2007.Positive Psychosocial Outcomes135 campers with epilepsy evaluating:Knowledge of condition & self-managementSelf-esteem & self-perceptionAttitude toward illnessAdaptive coping skills & quality of lifeCushner-Weinstein, et al. Epilepsy & Behavior, Aug 2009.Positive Psychosocial OutcomesPersonal confidence increasedCampers returning to camp year after year benefited mostPatients develop a greater willingness to accept responsibility & reduced dependency on caregiversCushner-Weinstein, et al. Epilepsy & Behavior, Aug 2009.Medical CampsResidential 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.

Medical CampsShared 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 independenceIndirect and direct play17Camp Isnt Just for PatientsParents of chronically ill children report:More anxiety & depressionHigher levels of parenting stressLimited social functioningCamp attendance can provide a respite for caregivers, decreasing depression, stress, and improving general psychological functioning Meltzer and Johnson. Childrens Health Care, 2004.Camp Isnt Just for PatientsSiblings of children with cancer experience a more serious burden from the illness than is perceived by the parents Houtzager, et al. Pediatr Hematol Oncol, 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 Psychosoc Oncol, 2005.It Doesnt Have to be an IllnessBereavement Camps for children and adolescents whove lost a parent, sibling, etc.

Weight Loss Camps to teach healthy habits to obese children and adolescentsMedical CampsStudies 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 Childrens Network and Yale University looking at the benefits of attending the Network camps.

Yale Child Study Center Outcome Evaluation StudySerious 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.

Serious Fun Outcomes StudyPre and Post questionnaire survey Questions related to such characteristics asEmotional resilience (ability to bend but not break)Quality of life (physical and psychosocial)Friendships/social supportsAwareness of illnessHow child felt about attending camp

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 higher24Serious Fun Outcomes StudyPsychosocial ImpactAt 1 months there was a decrease in illness related stressPTSD symptomsAt 6 months, all resilience-related indicators maintained their increase level

Serious Fun Outcomes StudyFriendships98% of campers reported that they made at least one friendAt 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

26Serious Fun Outcomes Study83% of parents/caregivers reported increase in childs confidence80% reported an increase in self-esteem76% reported an increase in maturity74% reported an increase in independence72% reported an increased interest in social activitiesAt 6 months, all of the positive changes were maintainedSerious Fun Outcomes StudyLimitationssmall sample size wide variation in families stress levels, resources, severity of illness12 different camps were attended national and internationalno control group of any kind

Collecting data from camps is a little trying to paint a picture, not of jello, but with jello everything slides around.28If It Is So Good, Why Dont All Patients Go To Camp?Lack of awarenessHealthcare providersParents/CaregiversFear of parent to leave child(Perceived) Fear of child to be without parentPerceived lack of safety and/or availability of medical careMedical Camps Are SafeMedical Camps Are SafeKinsella, et al. Eur J Oncol Nurs, Sep 2006.

Infectious ConcernsLow prevalence of complications in severe neutropenic children with cancer in the unprotected environment of an overnight campAttendance at a overnight summer camp for children with cancer was examined.34 patients were severely neutropenic 9/34 (24%) were hospitalized for F&N1 patient was culture positiveMost children attended all camp activities

Tabori, et al. Pediatr Blood Cancer, Feb 2007.Medical CampsWe all know that camp is good for the campers. Statistics are great, but they just dont tell us what goes on. Kids tell us:

Coming to Camp made me realize I wasnt 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.

Medical CampsI 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 its good for the soul.

Because I feel safe, I have an alternate personality at camp that is different than home. Im less cautious to do fun and exciting things, and while I feel independent I dont feel as alone as I sometimes do at home.

Mission & History 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.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.

Programs that EmpowerAs 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)

Family Retreat WeekendsSeptember- AprilFamily 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).

Summer CampJune- AugustSummer 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.

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.

Groups ServedArthritis / RheumaticAsthma (severe)CancerCraniofacialDiabetes (family retreat weekend only)EpilepsyHeartHemophilia / Bleeding disordersImmune DeficiencyInflammatory Bowel DiseaseKidneySickle CellSpina BifidaTransplantsVentilator Assisted Care (family retreat weekend only)Camp Boggy Creek welcomes children ages 7-16 with the following conditions:What you should know about Camp Boggy CreekThere 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).

Medical Facility-The PatchCamp 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.

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 acceptanceAn complete application does not guarantee acceptanceCamp Boggy Creek has an priority system to ensure that everyone has the opportunity to attend camp

Selection Criteria:SeverityNumber of times attended camp Aging out campers may have a higher priorityGender in summer camps, even ratio for our cabin balanceCamper / families must commit to opening and closing datesFamily member in the service/ over seasSpecial family circumstances Loss of a loved oneLoss of job / home

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.orgReferencesAmerican Camping Association (2002). Children with cancer- Positive benefits of camp.American Cancer Society. Cancer Facts and Figures 2014Epstein, 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 AssociationTominey, 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