The Camp Experience for Siblings of Pediatric Cancer Patients

408102 ancockJournal of Pediatric Oncology Nursing JoPon28310.1177/1043454211408102H The Camp Experience for Siblings of Pediatric Cancer Patients ...
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408102 ancockJournal of Pediatric Oncology Nursing

JoPon28310.1177/1043454211408102H

The Camp Experience for Siblings of Pediatric Cancer Patients

Journal of Pediatric Oncology Nursing 28(3) 137­–142 © 2011 by Association of Pediatric Hematology/Oncology Nurses Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454211408102 http://jopon.sagepub.com

Lauren Hancock, RN, MSN, CPNP-AC1

Abstract Siblings of pediatric cancer patients experience difficulties coping and adapting to the experience of a cancer diagnosis. A variety of emotional and behavioral changes as well as somatic complaints have been reported. Children describe many negative changes after their sibling is diagnosed with cancer. Many social supports and therapeutic interventions have been proposed for siblings, one of which is a camp experience.The literature has demonstrated that camps have a positive impact and offer siblings of children with cancer a supportive peer environment. Camp encourages discussion with peers and health care providers and facilitates participation in activities that improve knowledge, social confidence, and self-esteem. Nurses can help siblings by recommending camp experiences, volunteering at camps, and adding a camp experiences to existing sibling support programs. Keywords siblings, camp, cancer, oncology, pediatrics

Introduction Therapeutic camps have become increasingly popular as an intervention for children with chronic illnesses, particularly those with cancer. However, camps are not as common for the siblings of these children. Research has shown that siblings of pediatric cancer patients undergo emotional distress and need consistent and therapeutic social support to cope with their sibling’s diagnosis and adapt to this change in the family dynamic (O’Brien, Duffy, & Nicholl, 2009). The camp environment can be effective in facilitating adaptation and coping in siblings of pediatric cancer patients. This article will review the literature surrounding siblings of childhood cancer patients in general, expand on the camp environment as a tool to facilitate coping in siblings of childhood cancer patients, and summarize the current literature related to this topic.

Sibling Coping and Adaptation Research about siblings of children with cancer emphasizes their ability to cope and adapt to the cancer experience. Siblings experience emotional changes, behavioral differences, and somatic complaints. Siblings report numerous changes: many that are negative but some that are viewed as positive (Sargent et al., 1995). Siblings experience a myriad emotional and behavioral changes associated with the diagnosis of cancer. The

literature describes siblings as exhibiting loneliness, sadness, anxiety, depression, guilt, and shame (Heffernan & Zanelli, 1997; Houtzager, Grootenhuis, & Last, 1999). They report negative feelings about themselves and other family members as well as fear of death of the sick sibling (Sargent et al., 1995). Alderfer, Labay, and Kazak (2003) studied 73 siblings of adolescent cancer survivors and found that almost half of siblings displayed mild posttraumatic stress symptoms (PTSS) and almost a third showed moderate to severe PTSS. Siblings have also been reported to display jealousy, attention-seeking and avoidance behaviors, and isolation from the family (Fanos, Jeveh, King, & Tejeda, 2005; Houtzager et al., 1999). In a study of 82 siblings at 1 and 6 months after diagnosis, Houtzager, Grootenhuis, Hoekstra-Weebers, and Last (2003) reported that 26% to 56% of well siblings had an impaired quality of life after their brother or sister was diagnosed with cancer. Houtzager et al. (1999) reported on 2 studies that demonstrated school-related problems in children after their sibling was diagnosed 1

University of Pennsylvania School of Nursing, Philadelphia, PA, USA

Corresponding Author: Lauren Hancock, 230 N. 21st Street, Unit #B03, Philadelphia, PA 19103, USA Email: [email protected]

138 with cancer. Other negative changes in the lives of children after a sibling is diagnosed with cancer include distress because of family separations, disruptions related to treatment, and a lack of attention to the well sibling (Sargent et al., 1995). The literature reports that many emotional and behavioral changes exhibited by siblings have a significant impact. Siblings of children with cancer also report a range of somatic complaints. These include headaches, stomachaches, difficulty sleeping, enuresis, and appetite problems (Heffernan & Zanelli, 1997; Kiernan, Gormley, & MacLachlan, 2004; Zelter et al., 1996). Despite these multiple somatic complaints, parents have been shown to be less likely to seek health care for well siblings while another child is undergoing treatment for cancer (Zelter et al., 1996). Although there are many negative changes that siblings experience when their brother or sister is diagnosed with cancer, positive changes have also been reported. These positive changes include increased empathy, better communication, improved self-concept, and increased appreciation for life (Murray, 1999). Siblings also report more maturity, supportiveness, and independence (Barbarin et al., 1995). Sargent et al. (1995) interviewed 254 siblings in a 9-question, open-ended, qualitative study and found that many siblings reported that they had become more compassionate, caring, and helpful after their brother or sister was diagnosed with cancer. Siblings also reported that they were able to have experiences they would not have had otherwise (Sargent et al., 1995), such as participation in special family trips.

Social Supports and Therapeutic Interventions for Siblings Although there are some positive changes reported in siblings of children with cancer, research demonstrates that a cancer diagnosis can have numerous negative effects on well siblings. Many providers focus their care on the entire family and not just the sick patient. However, family-centered care often concentrates on parents and neglects to include siblings (Fanos et al., 2005). In a study of parents from 86 families, only 40% reported that a member of the health care team had made an effort to help their well child (Ballard, 2004). Although there is significant opportunity for improvement to current standards of care for siblings, there are many existing social supports and therapeutic interventions that nurses can implement to help well siblings. Both siblings and parents express that nurses can integrate these interventions into the delivery of true familycentered care. Nurses can participate in the care of siblings by recognizing the needs of siblings and finding ways to meet

Journal of Pediatric Oncology Nursing 28(3) those needs. Siblings report that it is helpful to receive reassurance about the sick child and their own health as well as information about the situation (Ballard, 2004). They also seek relief from guilt and inclusion in activities while keeping their lives as normal as possible (Ballard, 2004; Murray, 2002). Nurses can engage siblings in interaction and talk with them about their experience while providing reassurance. Nurses can also provide siblings with age-appropriate information about the disease, treatments, and side effects (Murray, 2002). This information should be provided from the very beginning of their interactions with a family, and sibling involvement in group discussion and activities should be encouraged soon after diagnosis (Lahteennmaki, Sjoblom, Korhonen, & Salmi, 2004). Ballard (2004) interviewed parents in 86 families with a total of 159 well siblings and found that 58% of parents felt that their well child should be more involved in the sick child’s care. Nurses can facilitate this involvement when working with families both in and out of the hospital. It is also important to refer families to both social work and child life programs to engage additional resources, but there are many ways for nurses to engage and support siblings simply through their daily interactions with the family. Another important role for the nurse is to facilitate communication within the family. Wilkins and Woodgate (2005) suggest that communication between parents and siblings is one of the most important factors in the well sibling’s adaptation to the experience. Nurses can facilitate communication between parents and siblings and educate parents about the importance of open communication within the family. Nurses can also help parents to keep the well sibling’s life as normal as possible: something that siblings have reported to be helpful after a cancer diagnosis (Murray, 2002). Also, nurses can be positive and optimistic, encourage parents to bring siblings to the hospital, and keep siblings informed about what is happening (Spinetta et al., 1999). Facilitating communication within the family and talking to parents about well siblings is an important role for the nurse caring for pediatric cancer patients. Offering peer support is another important intervention for well siblings. Support groups offer both peer interaction and sibling education. The SibShops model provides activities to engage well siblings and has been shown to be beneficial for providing support to siblings (D’Arcy, Flynn, McCarthy, O’Connor, & Tierney, 2005). The book SibShops: Workshops for Siblings of Children With Special Needs by Meyer and Vadasy (2008) is an excellent teaching tool for nurses and other providers to help run these sibling support programs. Nurses can refer siblings to existing peer support programs at their institution or organize sibling support groups. Activities and programming for siblings can be offered during a few

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Hancock hours, as a whole-day program, or as part of a weekend program. In addition to group meetings, supportive programming for siblings can be offered in the form of an organized camp experience either for a week in the summer or over a weekend at other times of the year.

The Camp Experience for Siblings Numerous summer and weekend camps exist for children with cancer and their siblings. Some camps offer experiences for patients and siblings individually, whereas others offer shared experiences for patients, siblings, parents, and other family members (Wellish, Crater, Wiley, Belin, & Weinstein, 2006). There is limited research regarding the camp experience for siblings of children with cancer. However, the literature supports camp as a therapeutic intervention that should be offered to healthy siblings as well as patients. As reported in the literature, camp programs for siblings differ in terms of setting, format, duration, and scope (Kiernan et al., 2004). Many camps are formulated on the concept of therapeutic recreation, defined as, “a purposeful intervention designed to improve quality of life through recreation and leisure” (Martiniuk, 2003, p750). Camps for siblings can provide programming based on psycho-education, principles of cognitive behavior therapy, and health promotion (Sidhu, Passmore, & Baker, 2006). These goals include providing siblings with peer support, addressing emotional concerns, validating their feelings, and bolstering self-esteem (Packman et al., 2004; Packman et al., 2008). Camps provide activities designed to reduce levels of distress and improve knowledge about cancer and treatment (Sidhu et al., 2006). Programming to increase knowledge can include sessions with a doctor or nurse to give siblings information and allow them to have contact with medical equipment and supplies (Carpenter, Sahler, & Davis, 1990). A landmark study by Sahler and Carpenter (1989) of 90 siblings attending a camp in upstate New York found a desirable change in level of medical knowledge, perceptions of how the cancer experience affected the child, and siblings’ mood state, all of which were sustained for 3 months after attending camp. More recently, these findings have been supported by additional reports of a wide variety of benefits to siblings after attending camp. The camp experience has resulted in positive outcomes for siblings in both the short term and long term with regard to physical symptoms, self-perception, and social support (Kiernan et al., 2004), and camp has been shown to be effective in improving siblings’ emotional well-being and self esteem (Packman et al., 2008; Williams et al., 2003). Siblings have shown improved mental health outcomes that were sustained at follow-up (Sidhu et al., 2006). One study found that siblings experienced a significant

decrease in PTSS after attending camp (Packman et al., 2004), with 38% of siblings reporting PTSS reactions precamp and only 18% reporting PTSS reactions postcamp. Siblings have also reported an improved self-concept after attending camp (Murray, 2001a) and have indicated that the camp experience helped them accept their feelings as normal (Creed, Ruffin, & Ward, 2001). Siblings left camp with a circle of support they did not have before (Creed et al., 2001) and experienced increased social support from these peer relationships (Kiernan et al., 2004; Williams et al., 2003). Significant improvements in health-related quality of life were reported by siblings as well as their parents, and both parents and siblings reported overall positive outcomes from attending camp (Packman et al., 2005). Siblings have reported more knowledge about their sibling’s disease and a more positive attitude toward the sick child’s illness (Carpenter et al., 1990; Sahler & Carpenter, 1989; Williams et al., 2003). In general, the literature is supportive of camp as a therapeutic intervention for siblings, and numerous positive effects have been demonstrated for siblings after attending camp.

Clinical Implications Research supports the use of summer and weekend camps as a therapeutic intervention for siblings of children with cancer. Nurses can support this type of intervention by recommending sibling camp programs, volunteering at summer camps, and using local resources to integrate the camp experience into current sibling support programs.

Recommending Sibling Camp Nurses are well positioned to offer anticipatory guidance and support to families during the treatment process; this includes recommending a camp to these children and their families. Although nurses may not always have contact with siblings in the clinic or hospital environment, it is important to conduct a thorough family assessment, including whether or not there are siblings in the family and the ages of these siblings. Even those siblings who seem to be coping well with the cancer experience can benefit from attending a sibling camp and participating in therapeutic interventions. Nurses can identify families that are interested in learning more about sibling camps and make referrals to social workers who often have more information about these camps. Nurses or social workers can investigate the availability of camps in their local area; gather information about location, dates, and availability; and share the information with parents and siblings. A noncomprehensive list of available resources to find camps is outlined

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Journal of Pediatric Oncology Nursing 28(3)

Table 1. Online Resources for Locating Camps for Siblings of Children With Cancer 1. The Children’s Oncology Camps Association International (http://www.cocai.org): This organization provides a list of camps for children with cancer both within the United States and abroad. Many of these camps offer sibling programs, and if the details are not stated on the website, the camps can be contacted for more information. 2. The Ped-Onc Resource Center (http://www.acor.org/ped-onc/cfissues/camps.html): This website provides another list of camps for children with cancer and is similar to the Children’s Oncology Camps Association International website. Not all camps listed on this site have sibling programming, but camps can be contacted individually to find out about sibling programs. 3. The Hole-in-the-Wall Association (http://www.holeinthewallcamps.org): Camps are located throughout the country and world for children with cancer as well as other chronic and life-threatening illnesses. Many of these camps offer family weekend programming, and some offer summer camp weeks for siblings of patients who attend a summer session.

in Table 1. However, further local investigation is recommended to determine if other camps exist within a particular region. Some camps for cancer patients may offer an additional special experience for siblings over a weekend in the off-seasons or a week in the summer. Nurses can contact local camp programs for cancer patients to inquire about what opportunities may be available for siblings. Some camps offer sibling sessions and can provide more information about support programming available for well siblings.

Volunteering at Sibling Camp Nurses, physicians, and nurse practitioners are often needed to volunteer at camps to support the health care needs of campers. Although siblings have fewer healthrelated needs than pediatric oncology patients, many healthy siblings are still dealing with common childhood health issues including attention deficit disorder, asthma, and diabetes. Therefore, nursing presence to administer medications and provide first aid is necessary at sibling camps. Nurses who volunteer at camps for siblings can help camp staff create a therapeutic environment for campers by recommending programming that is beneficial for siblings and helping facilitate communication and coping. Nurses can also provide opportunities for siblings to increase their cancer-related knowledge. Programming led by nurses that allows campers to play with and learn about commonly used medical equipment and ask questions about their brother or sister’s diagnosis can be extremely therapeutic. The camp environment is also an ideal place to incorporate health promotion education for well siblings. Promotion of healthy eating and physical activity naturally occur in a camp setting, and nurses are well positioned to promote wellness through sibling education about these topics in a fun and creative way with the camp experience as a background for these learning experiences. As childhood obesity continues to be an epidemic in the United States, every opportunity for nurses to promote healthy living must be acted on.

Nurses often find volunteering with siblings a rewarding and worthwhile experience. Nurses who are employed full time may encounter barriers to volunteering. Nurses can advocate for the time needed to volunteer by educating employers about the benefits of sibling camps for the families under their care. Some camps that offer sessions for siblings as well as patients have programs available to create partnerships with hospitals. These partnerships provide the hospital with continuing education programs for nurses and priority to campers who apply from the partner institution. In turn, the hospital supports nurses who wish to volunteer at camp and recommends the camp program to their patients. Investigation into whether or not a local camp program wishes to start such a partnership can help nurses break down barriers to volunteering at camp.

Integrating a Camp Experience Into Existing Sibling Programming Although the proposition may sound daunting, nurses who work in areas without a local program offering camp for siblings can start a camp program or integrate a camp experience into their current sibling support programming. This is made easier by using existing sibling programming to guide the development of a camp experience. Many hospitals currently offer programming to support siblings, such as involvement with SibShops or SuperSibs. These programs can offer half- or full-day programming for siblings that can mimic the activities that happen in a camp environment. Organizing camp activities can be simple if it is based on programming that is already occurring in some capacity. Research shows that hosting entire weekends focused on siblings may have better attendance than hosting daylong programming (Ballard, 2004). This demonstrates the effectiveness of integrating a weekend camp experience into existing sibling programming. It may be easier to start camp development with a weekend experience that can be later expanded to a weeklong summer program.

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Hancock Nurses are in an excellent position to advocate for the needs of siblings and start a program in their area. Hospitals can provide resources for such programs and camps and can provide facilities and staff to help facilitate the camp experience. Nurses, in collaboration with other providers such as social workers, can form a team that will minimize the workload in starting such a program.

Future Research Current literature supports the use of summer camps as an intervention for siblings. Nurses should recommend the camp experience to all siblings, regardless of whether or not they appear to be having difficulties coping with their situation. The limited amount of current research involves small sample sizes and a variety of measurement tools to determine outcomes. Future research should be more rigorous by including the use of control groups and long-term follow-up of campers (Martiniuk, 2003) as well as larger sample sizes and more uniform measurement tools. Further research is necessary to gain knowledge in this field and create more appropriate and therapeutic interventions for siblings within the camp environment. To structure programs that have the greatest benefit possible, future research should focus on the benefits of camp for siblings and which interventions siblings find most helpful within the camp environment. Barriers to further research include the ethical implications of randomized trials when providing a camp experience to some siblings and not to all siblings. Additionally, there are a limited number of sibling camps in existence that provide few sites to conduct new, highquality, research studies. Finally, a constant barrier to research is a lack of time, personnel, and funding. Further research will expand the knowledge base regarding sibling camps and has the potential to reinforce the recommendation that camps are beneficial for siblings.

Conclusions All siblings of children with cancer are at risk for difficulty with coping and adapting to this change in the family’s life. Summer or weekend camps can be a therapeutic intervention for both patients and siblings to facilitate coping. Camp provides a supportive peer environment to encourage discussion between and participation in activities that improve knowledge, social confidence, and self esteem. Camp is also an ideal environment to promote wellness for siblings, including wellness education surrounding healthy eating and participation in exercise. Nurses can support sibling camps by recommending

them to families, volunteering at camp, and initiating camp programs in their own local areas as a part of existing sibling support programming. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.

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Bio Lauren Hancock recently completed her master’s degree from the University of Pennsylvania in the Pediatric Oncology Nurse Practitioner Program with a minor in palliative care. She earned her bachelor’s degree in nursing from Georgetown University in 2006. She is currently the Nurse Practitioner at Victory Junction, a Hole in the Wall Association camp for children with chronic and life-threatening illnesses in Randleman, North Carolina. Her nursing experience includes pediatric bone marrow transplant, neonatal and pediatric intensive care, and simulation instruction for undergraduate nursing students.

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