Psychosocial_Support_for_Healthy_Siblings_of_Pediatric_Oncology_Patients.docx

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Psychosocial Support for Healthy Siblings of Pediatric Oncology Patients

By

Celina E. Jimenez

Senior Honors Thesis School of Nursing

University of North Carolina at Chapel Hill

April 8, 2020

Approved:

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Abstract

Healthy siblings of children with cancer are impacted by the diagnosis in a way not often recognized or understood. The sudden changes and range of emotions experienced can lead to a risk of distress and long-term negative effects for healthy siblings as they may internalize stress, externalize stress, or express stress physically (Zegaczewski et. al., 2015). This paper explores the unmet needs of healthy siblings, psychosocial impact of the diagnosis, and the actions being taken in order to increase positive outcomes through a comprehensive review of the literature and a closer look into resources provided by UNC Hospitals’ Child Life Specialists. Common needs, as reported by the Child Life Specialist interviewed, are related to school behaviors, signs of regression, separation anxiety, and financial stress for the sibling. UNC Hospitals offers resources by means of Child Life Specialists to support healthy siblings through the cancer experience, using interactive books, creative communication methods, and recreational

opportunities. In conjunction, the literature and the resources offered at UNC Hospitals indicate that there are increased efforts to provide support for siblings. However, there are still a number of barriers to be overcome, including lack of access to siblings, lack of direct funding, and lack of general awareness. To decrease risk for maladaptation and negative psychosocial outcomes, healthcare professionals must be educated on sibling impact and use an interdisciplinary approach to provide appropriate supportive interventions.

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Psychosocial Support for Healthy Siblings of Pediatric Oncology Patients Introduction

The prevalence of childhood cancer in the United States is steadily rising with an estimated 11,050 children under the age of 15 to be newly diagnosed in 2020 alone (American Cancer Society, 2020). According to the 2019 Federal Census data, the average number of children under 18 per family household is 1.93. These statistics suggest that most children diagnosed with cancer, on average, have at least one sibling in the home. A cancer diagnosis is a catastrophic life-altering event for the ill child, parents, and siblings as the family is an

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even though he/she is still living (Neville et. al., 2016). These changes evoke a wave of

emotions, putting healthy siblings at risk for long-term negative effects as they may internalize stress leading to feelings of guilt, hopelessness, anxiety, or loneliness; externalize stress resulting in anger or rebellious behavior; and/or express stress physically through disruptions in sleeping or eating behaviors (Zegaczewski et. al., 2015). This may be mitigated as the level of social support perceived by the healthy sibling is negatively correlated with signs of maladaptation and psychological distress (Yu & Bang, 2015).

As UNC Hospitals’ pediatric oncology program is part of the UNC Lineberger

Comprehensive Cancer Center, one of 41 National Cancer Institute-Designated Comprehensive Cancer Centers, patients and families travel from all over for advanced expert treatments for all types of cancer at the inpatient pediatric hematology/oncology unit and the outpatient

hematology/oncology clinic (N.C. Children’s Hospital, 2020). Therefore, it is imperative that healthcare professionals at UNC Hospitals and community partners understand the unmet needs of healthy siblings, identify those at risk for maladaptation, and intervene appropriately to facilitate adaptation and increase coping ability. The purpose of this study is to identify: 1. the impact of a sibling’s cancer diagnosis on the psychosocial well-being of healthy siblings; 2. frequently reported unmet needs, and 3. existing resources offered to patients and families at UNC Healthcare to support healthy siblings. This project will provide a closer look at one of the resources offered within hospitals to facilitate positive adaptation: Child Life Specialists (CLS). At UNC Children’s Hospital, this service was expanded with the recent addition of a Child Life Specialist exclusively for sibling support.

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A review of the current literature between January 2014 and December 2019 was conducted using three databases: Cumulative Index to Nursing and Allied Health Literature, PubMed, and PsycInfo. In order to find relevant articles on sibling psychosocial needs and support in pediatric oncology, a search was performed using Mesh terms and keywords related to cancer AND siblings AND support AND pediatric. Literature performed outside of the United States was included as long an English version of the article was available. Twenty

peer-reviewed articles, comprised of systematic reviews, qualitative studies, quantitative studies, and mixed-methods studies, were selected for review as to provide context for this project.

A surge in the research on the impact that a cancer diagnosis has on family members occurred between 2000 and 2010; however, most of this research was particularly focused on that of the caregiver (Fletcher, Miaskowski, Given, & Schumacher, 2012). It was not until more recently that researchers began digging deeper into the experience of healthy siblings of children diagnosed with cancer. Normal family functioning is interrupted and daily life is turned upside down as a result of traveling for treatments, extended hospital stays, and a sudden financial burden. Consequently, all facets of life are affected for healthy siblings, including, but not limited to, household responsibilities, school, emotional stability, friendships, and family dynamics (Long, Lehmann, Gerhardt, Carpenter, Marsland, & Alderfer, 2018). These sudden changes have been shown to lead to an increased risk for both acute and long-term psychosocial difficulties, behavioral issues, and academic and social disruptions (Gerhardt, Lehmann, Long, & Alderfer, 2015). According to a study performed at a health institution in Portugal, the

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Changes Related to Diagnosis

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cancer diagnosis and treatments were described as “spoken of, but not discussed” with communication described as “strained” and “sparse,” leading siblings to believe they were unable to share their feelings regarding the experience (Tasker & Stonebridge, 2016). In fact, in order to avoid being a burden to her parents, one sibling remembered her belief that she “must walk on eggshells around [her] parents” to avoid upsetting them (Neville, Simard, Hancock, Rokeach, Saleh, & Barrera, 2016).

As parents tend to be absent from the home and preoccupied even when they are physically present, healthy siblings end up taking on an increase in home responsibilities. Healthy siblings reported taking on tasks that the ill child used to perform in addition to their own chores. Older healthy siblings even undertake caregiving responsibilities for the ill child or any other siblings as the parents are consumed by the care of the ill child as he/she requires the most attention. This increased responsibility was experienced differently among healthy siblings as a 17-year-old female reported feeling “proud to be someone family can count on,” while a 10-year-old male demonstrated a dilemma between having to choose between caring for himself or caring for his ill sister as “his mom was doing laundry, and his little sister was crying [while he was caring for her], but the school bus was waiting to take him to school” (Neville et. al., 2016). Beyond the extra responsibilities, siblings described a loss of childhood, as they were often faced with tasks that require increased maturity and decisions too big for a child, such as babysitting, cooking, and deciding whether or not to accompany the family to treatments. One sibling shared, “’it was always Elizabeth can take care of herself’ but I don’t think I actually could” (Tasker & Stonebridge, 2016).

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experience an increased degree of absenteeism with 37% of healthy siblings missing over 13 days of school as focus and priorities shift towards the treatment for the ill child (Long et. al., 2018). Logically, poorer school performance was reported as 78% of parents indicated that siblings experience newly surfacing educational difficulties, which is often exacerbated as families must relocate to shorten the commute to treatment centers (Long et. al., 2018). This decreased attendance in school combined with a decrease in participation in social activities results in diminished peer relationships and social separations, as priorities shift in light of the new diagnosis. Siblings reported a sense of tension between wanting to be treated as if they were normal and needing recognition that things were far from normal (Long et. al., 2018). Nevertheless, Marques, Araújo, and Sá (2018) identified that support from extended family and friends acts as a protective factor as these children step in to care for healthy siblings during parental absence in order to insure continuity of care.

Psychosocial Effects

As a result of these abrupt changes, healthy siblings are at an increased risk for emotional and behavioral difficulties (Gerhardt et. al., 2015). Moreover, because school age children are in the midst of learning cognitive and social skills, limited social contact of healthy siblings could result in more serious psychosocial and developmental problems later in life (Jo et. al., 2018). Synthesizing empirical evidence from thirty-six papers examining emotional and behavioral functioning, Long et. al. (2018) concluded that more siblings fell into borderline and clinical ranges of internalizing symptoms (including anxious, depressed, withdrawn, and somatic

symptoms), externalizing symptoms (including aggressive behavior), and total problems than the norms. Additionally, an integrative interview of seven non-experimental and five

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children between the ages 3 and 7 years demonstrate more psychosocial problems than the control group, became confrontational with patients more often, and exhibited behavior problems, impulsivity, and hyperactivity. Siblings of school age (>7 years old) displayed increased levels of anxiety, impulsivity, hyperactivity, and behavioral and learning problems as well as a decrease in self-esteem when compared to the control. The adolescent group (12-18 years old) reported higher levels of anxiety, depression, and social withdrawal (Zegaczewski et. al., 2015).

Questionnaire and interview data regarding posttraumatic stress conveyed that two-thirds of siblings reported experiencing moderate to severe levels of posttraumatic stress symptoms, with one-fourth meeting full or partial diagnostic criteria for posttraumatic stress disorder (Long et. al., 2018). The systematic review provided further evidence to support the quantitative data using fifteen qualitative or mixed methods studies on psychological distress among pediatric samples. Findings demonstrated that siblings often “felt overwhelmed by strong negative emotions, including fear, anxiety, worry, shock, jealousy, loneliness, isolation, sadness,

depression, anger, guilt, and helplessness” (Long et. al., 2018). During repeated observations of a group intervention, Neville et. al. (2016) found that siblings’ anxiety and worry often stemmed from uncertainty of their sibling’s cancer prognosis and treatments. As an example, a 14-year-old female admitted, “[After the diagnosis], my whole world was turned upside down. I wanted to know as much as possible about cancer so that I could at least come to terms with what I was up against.” and another 12-year-old female stated, “Since I could not see my brother for a month or two, I got the most affected because everyone knew what was going on except for me.” Not only did siblings report feeling uninformed, but siblings also described feeling less important,

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describing himself as a messenger as he was asked “How is your brother/sister?” rather than “How are you?” (Porteous et. al., 2018). During retrospective narrative interviews, 7 now-adult sisters in Canada described intense feelings of shame and guilt for feeling difficult emotions of anger, jealously, hatred, confusion, and frustration as well as for thinking “uncomfortable thoughts.” One participant recounted the feelings of guilt stating “How dare I be the bitch that’s saying anything mean to my sister who just went through this. So you feel like a total bitch and like what the fuck is wrong with me for even feeling this way towards this person that could have died?” (Tasker & Stonebridge, 2016). Participants expressed that it would have been beneficial to know that the difficult emotions and thoughts were normal and “didn’t make me a bad person,” as some participants continued to struggle with guilt into adulthood (Tasker &

Stonebridge, 2016). A qualitative study comprised of an interview of 10 siblings in New Zealand concluded that such unrelenting negative emotions, stress, and distress contribute to trauma-like symptoms of flashbacks and nightmares, personality and mood changes, including decreased levels of happiness and self-esteem and increased levels of vulnerability and sensitivity, and impaired social understanding (Porteous et. al., 2018).

Time since diagnosis is a major indicator of risk, as time since diagnosis is negatively associated with anxiety and PTSD. However, there was no change in sibling distress or

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school functioning, and a lower perceived quality of life (Long et. al., 2018). The literature also identified that healthy siblings of nonwhite race, from low income families, with unmarried parents, and poor family functioning are at an increased risk for maladaptation and psychosocial difficulties (Long et. al., 2018).

However, not only negative outcomes emerge from the cancer experience, as the

literature uncovers evidence of resilience and personal growth. Healthy siblings with a brother or sister who has been diagnosed with cancer display higher levels of post-traumatic growth than controls and exhibit long-term personal growth in regard to maturity, communication,

compassion, confidence, and independence (Long et. al., 2018; Porteous, Peterson, &

Cartwright, 2018). Although there is evidence of a decline in family function with a new cancer diagnosis, there is also evidence supporting positive changes such as increased cohesion, appreciation, and closeness as they work together as a team towards the common goal of overcoming cancer (Porteous et. al., 2018). As psychosocial difficulties are not universal, it is critical to identify siblings with the highest risk of maladaptation in order to provide appropriate and effective services according to the proper level of need (Gerhardt et. al., 2018).

Reported Unmet Needs

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44% of parents indicated that such support was available or received” (Long et. al., 2018). In a retrospective narrative, one sibling advises, “Treat them not as someone with a sibling who is going through something. Treat them as someone who is going through something.” (Tasker & Stonebridge, 2016). Of the reported needs, siblings most often reported needs regarding cancer-related information, parental attention and communication, and emotional support.

Cancer-related information. A systematic review of 125 studies about siblings of

children with cancer identified that siblings need information about the ill sibling’s diagnosis and treatment and should be updated regularly in a developmentally appropriate manner (Gerhardt et. al., 2015). Siblings expressed a desire for open and honest information on cancer, treatment, progression, prognosis, and mortality, with some stating that they would prefer to receive the information directly from health care professionals (Long et. al., 2018). In an evaluation of an instrument to assess the psychosocial unmet needs, researchers found that of 73 items, the items “to be informed about my siblings condition—good or bad,” “information about the impact that the cancer and treatment may have on my sibling’s life in the future,” “information about the chances of my sibling’s recovery,” and “information about what to do if I notice a particular side effect or symptom in my sibling with cancer” were among the highest reported needs (Patterson et. al., 2016). When 84 siblings of children with cancer participating in descriptive study where instructed to “talk about things you wish nurses would do to help children who have a brother or sister with cancer,” they emphasized the need for information on cancer management, the need for nurses to exhibit a kind attitude, and the need for face-to-face discussions or online

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go into her room and it was like ‘what’s happening?’ and she’s only getting x-rays, but I think she’s going into operation” (Porteous et. al., 2017).

Parental attention and communication. During an art intervention program, a

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situation, they expressed a desire for parental understanding and attention (Tasker & Stonebridge, 2016).

Emotional support. Resources available to healthy siblings of pediatric cancer patients

have historically been resources the same as those offered to the ill sibling themselves or a mildly adapted version. By interviewing healthy siblings, researchers in New Zealand found that most were never asked about the nature of their experience other than by fellow survivors

(Porteous et. al. 2018). As healthy siblings have specific unique needs, they communicate a need for greater individualized support exclusively aligning with the sibling experience in order to navigate difficult emotions and uncomfortable thoughts (Long et. al., 2018; Tasker &

Stonebridge, 2016). Siblings expressed the need to connect with other siblings with similar experiences for an opportunity to share information and support one another, as this allows a genuine empathy and deep understanding despite relatively short acquaintances (Long et. al., 2018; Porteous et. al., 2018). Highlighting the benefits of bonding with fellow siblings, one of the participants stated, “[Other siblings] understand where you are coming from […] nobody will look at you sideways if you say something because they understand what you are talking

about.”(Porteous et. al., 2018). Although siblings appreciate the opportunity to be included in the recreational, supportive interventions meant for children with cancer, the experience during these groups was described as “being invited to a club you didn’t have a membership to,” proving to be ineffective in providing support for healthy siblings (Tasker & Stonebridge, 2016). Therefore, in order to facilitate support and provide an open, nonjudgmental environment, siblings found it imperative that support-groups are exclusive to healthy siblings.

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While intervention literature is limited in nature with few randomized control trials and a lack of controlled longitudinal research, there is evidence of improved outcomes with the

implementation of social support for healthy siblings of children with cancer (Gerhardt et. al., 2015). As evidenced by the literature, a statistically significant inverse correlation between “social support” and the “impact of disease on healthy siblings” exists (Marques et. al., 2018). In “Supporting Siblings as a Standard of Care in Pediatric Oncology,” researchers compiled

evidence from four reviews, 15 quantitative papers, and three qualitative papers addressing siblings’ needs and discovered a pattern of improvements in knowledge, mood, and quality of life for healthy siblings after attending support groups and camp programs (Gerhardt et. al., 2015). Evidence from an integrative review indicated that after attending sibling peer support summer camp programs, healthy siblings’ experienced significant improvements in

posttraumatic stress symptoms, anxiety, total quality of life, and self-worth, as well as a decrease in anxiety and emotional maladjustment (Zegaczewski et. al., 2016). Structured weekly sibling-exclusive group meetings in which attendees received medical information related to cancer and expressed feelings related to their personal experience of their siblings’ diagnoses led to a decrease in symptoms of depression and anxiety (Zegaczewski et. al., 2016).

Results of an art intervention program made up of 12 weekly sessions with seventeen participants between the ages of 7 and 10 years observed the effects on self-esteem, anxiety, depression, and problem behavior levels. The program was designed to facilitate expression of feelings and overcoming hardships through art. At the end of the 12 weeks, the total self-esteem score showed a significant increase, while somatic symptoms, aggressiveness, emotional

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Moreover, researchers in Canada designed the Siblings Coping Together program in order to study perceived changes in the sample of twenty-two siblings (aged 7-18 years) of children with cancer after participation in the eight-week group intervention. This intervention group served as an opportunity to meet with other siblings in a safe environment, express difficult emotions, and learn new coping mechanisms. As the eight weeks progressed, siblings were observed bonding with one another over shared experiences, displaying increased

confidence in expression and participation, and sharing negative emotions then working together to find solutions. At sessions 1 and 2, observers noted that siblings were “withdrawn” and “quiet,” however, at sessions 5, 6, and 7 participants were “eager” to participate and share (Neville et. al., 2016), becoming a source of support.

In summary, sibling support literature from 2012 to 2019 focuses on changes in daily life related to diagnosis, psychosocial effects of the diagnosis, common reported unmet needs, and the impact of sibling support on psychosocial outcomes. With increased travel demands, hospitalizations, financial burden, the family system is forced to adapt and make weighty sacrifices and decisions. These adaptations often lead to decreased attention, quality of communication, school performance, and social participation for healthy siblings, while also bringing an increase in household responsibilities, school absenteeism, and feelings of isolation (Long et. al., 2018). This puts healthy siblings at a higher risk for acute and long-term

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support interventions improved negative symptoms, communication, expression, and bonding (Zegaczewski et. al., 2016), in order to expand on the available literature, additional longitudinal studies would allow for a more concrete understanding of the long-term effects of supportive interventions.

Methods

After conducting the literature review, I interviewed and shadowed a Child Life

Specialist at UNC Hospitals. For the purpose of this study, the interview was conducted with the Child Life Specialist who provides specialization in sibling support. The face-to-face interview was held at UNC Hospitals in the Child Life Specialist office, lasting approximately 30 minutes. A list of 6 open-ended questions was constructed to be asked during the interview and notes were taken of the responses. Concluding the interview, an opportunity was provided at the end to share any additional information that may be useful in informing the public about healthy sibling needs or stressors and the role of Child Life Specialists.

Interview Questions.

1. What is the role of a child life specialist?

2. How does your role differ from other child life specialists at UNC? 3. What common needs do you see among?

4. What resources are offered at UNC and in the community for healthy siblings? 5. Are there any additional resources that you believe could be beneficial in bettering

psychosocial outcomes for healthy siblings?

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As a means of gathering primary data, two Child Life Specialists were shadowed during a new sibling support group held on one Saturday of each month. Shadowing was performed during 4 sessions: October, November, December, and February, as there was no January

meeting in order to encourage attendance at a hospital bereavement event. Observation began an hour before the event, in order to see any updates given to volunteers, the set-up process, and last-minute planning and adjustments according to the expected number of siblings and their ages. Each support meeting was held for three hours, from 12pm to 3pm, during which notes were taken on the activities conducted and the barriers faced. After the meeting, a record was kept of the activities and the needs with which they aligned.

Research Findings

The interview was conducted in the month of February 2020, approximately 11 months after the establishment of the position of a sibling support specific Child Life Specialist (MC). Interview results are organized by question asked.

Questions 1 & 2: Role of the Child Life Specialist

1. What is the role of a child life specialist?

2. How does your role differ from other child life specialists at UNC?

The work of a Child Life Specialist begins with the initial diagnosis of the ill sibling and the onset of hospital admission. Because there are only 16 Child Life Specialists to cover the entire UNC Hospital system in Chapel Hill, interdisciplinary communication is critical as Child Life Specialists are utilized on a consult basis, especially for sibling support. Child Life

Specialists take on a range of tasks, including facilitating positive coping through

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should expect to see and hear in the hospital. In regards to her role as a sibling specific Child Life Specialist, MC reports that her position provides support for siblings beyond what a floor Child Life Specialist can practically accomplish, as her assignments extend outside of the hospital, at times involving connecting with schools, as that is where siblings spend most of their time. As many parents and family members are often unaware of the impact that a diagnosis has on healthy siblings, MC states that an essential component of her job is to familiarize the family with common behaviors exhibited by siblings during this difficult unexpected life-altering experience. By educating parents, recommending and providing resources, and meeting with siblings, Child Life Specialists work to facilitate positive adaptation and growth and to inhibit or lessen the severity of negative psychosocial outcomes for healthy siblings.

Question 3: Frequently Encountered Sibling Needs

3. What common needs do you see among the siblings?

Regarding typical needs reported and situations addressed, MC identified the most common to be school issues related to behavior and perceived level of threat. Parents often report that healthy siblings have experienced a sudden change in mood or behaviors, such as

inattentiveness, withdrawal, hyperactivity, and aggressiveness, creating a negative effect on school performance. As siblings experience a “compound sense of grief that clouds their reality, siblings experience a skew in perception.” MC explains that this often manifests through a groundless notion that the teacher has sudden intense negative feelings toward the healthy sibling or unfounded impressions that people are constantly talking about him/her.

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or want a bottle. Along with a decrease in attention, healthy siblings also experience a decrease of parental presence as there is an increase in caregiving demands and the need to accompany the ill child to treatment. As a consequence, healthy siblings, especially younger siblings, often experience separation anxiety. To illustrate the severity of separation anxiety, MC recounts an instance in which a young boy did not believe that his sibling was alive as he was not allowed to visit due to visitation restrictions. He went months without seeing his sister and when his parents went to visit her, he thought they were lying to him as she could not possibly be alive. This sibling blamed his mother for what he believed to be his sibling’s death, placing a strain on their relationship. To address the issue, the team of healthcare professionals had to work together to arrange a way in which he could see her utilizing technology as to avoid violating restrictions to ease the sibling’s concerns.

As siblings often overhear parents’ concerns about finances, money becomes a significant stressor. MC claims that nearly every sibling that she meets with voices a concern over money. Healthy siblings often experience personal losses as funds are now going towards

hospitalization, treatment, and commute related to cancer. In order to conserve money, siblings may have to sacrifice the things they enjoy, such as participation in sports or social activities. MC identifies that these sacrifices even goes as far as to impact basic needs, as one sibling she spent time with admitted to cutting back on school lunch to ensure the family had enough money for his sibling’s treatment.

Question 4: Resources Offered

4. What resources are offered at UNC and in the community for healthy siblings?

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As a part of this growth in the provision of services, UNC Hospitals added MC to the team of Child Life Specialists in order to offer specialized care and support to siblings. In this role, MC works directly with siblings and their families in order to understand individual needs and intervene to improve their experience. In August of 2019, MC and other Child Life Specialists worked together to initiate a monthly sibling-exclusive support group for children 6 to 16 years old. Through the group, siblings have an opportunity to express their feelings and needs, bond with other siblings, receive psychosocial support, and have fun.

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obstacles that they have overcome. MC exemplifies the effectiveness of the program stating siblings with problem behaviors often experience a “complete 180 in school behaviors,” as she recalls one sibling whose teachers reported constant kicking and biting and, after initiation of the program, the child’s inappropriate behaviors ceased and now he loves school.

As siblings are often separated from parents and the ill sibling, separation anxiety is common and there are few opportunities for effective communication of feelings. Therefore, Child Life Specialists are intentional about creating methods to encourage communication and closeness. Often siblings have troubling thoughts and questions when no one is around or able to respond; therefore, communication jars are used for siblings to write down any worries or

questions and stored. Then, a time is set aside for response, providing one-on-one attention and demonstrating that the healthy sibling and his/her concerns are a priority. To address the lack of communication between the ill sibling and the healthy sibling(s), Child Life Specialists work with siblings to construct their own “mailboxes” in which they can keep letters to be delivered between siblings in between visits, “which is especially helpful when flu restrictions are in place,” states MC. The last intervention that MC mentioned is a special use of electric tea lights. Each sibling has his/her own electric tea light candle that is to be turned on “when siblings have thoughts or worries that are unexplainable” as a way of nonverbal communication so parents and other family members are aware that he/she is experiencing a period of distress.

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printable worksheets and activities. Additionally, the program expands beyond the acute stage of the cancer experience as it allows siblings who have gone through having a brother or sister with cancer to become ambassadors for other siblings who may be new to the world of cancer.

Questions 5 & 6: Barriers/ Additional Needs

5. Are there any additional resources that you believe could be beneficial in bettering psychosocial outcomes for healthy siblings?

6. What barriers do you face in providing care for siblings?

Although UNC Hospitals is ahead of many in having a Child Life Specialist whose role is to support siblings, this position is not yet full-time. As the number of siblings is high, yet there is only one designated Child Life Specialist exclusively for siblings, MC reports a shortage of time to accomplish the high number of tasks she envisions for supporting siblings. Although sibling support meetings are held once a month during most months, MC states that “when full-time, I’d like to see the sibling support meetings every month along with a larger bereaved-sibling event every quarter.” The hospital’s Family Advisory Board voices a desire for an increase in attendance to sibling support events; however, “we just lack the funding, space, and staffing.” To address visitation restrictions, MC discusses the need for a designated “sibling space” to provide the opportunity to reunite family and act as a safe space for programs like the monthly support group, as finding a space for the meetings proved to be difficult due to visitation restrictions among other factors, including parking availability and facility policies.

Shadowing

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Table 1 displays the activities performed during each meeting and which needs the activities

addressed.

Even after thorough planning, with each meeting facilitators faced barriers in executing the activities smoothly each month. As meetings were just beginning in August, during the October meeting there were still logistical details that were an issue. As the support group initially met at the Ronald McDonald House of Chapel Hill in order to avoid hospital visitation restrictions, due to the policy, parents were unable to leave their children unattended with the facilitators. This meant that in order for healthy siblings to attend, parents would have sacrifice time in the hospital with their ill child; therefore, this impacted the attendance level. To combat this issue, the support groups were relocated to the Pediatric Hematology/Oncology Clinic at UNC Hospitals, as the clinic is closed on Saturdays. The November meeting had higher attendance, however, numbers were still limited as publicizing of the group was minimal as resources, both financial and staffing, were limited due to lack of direct funding for the support group. Each month, the Child Life Specialists and volunteers had to confront the issue of varying attention spans and maturity between the children as well as specific needs of different age groups. During the November meeting, volunteers faced issues as some children were

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each sibling, whether it be the opportunity to simply play with the teddy bears in the “teddy bear clinic” or go over medical terminology.

Discussion

Within the literature, three common needs of siblings were frequently reported: cancer-related information, parental attention and communication, and emotional support. UNC Hospitals has interventions in place in order to aid in each of these areas. The communication jars offered act as a way to remind parents to follow the advice of healthy siblings and become “effortful and deliberate in making time for well-siblings” as they too have many concerns and unanswered questions (Tasker & Stonebridge, 2016). As this intervention relies on parents to take action, there is an increased need for parental awareness of the impact that healthy siblings face in addition to education on appropriate and positive communication methods. Often, parents are unsure as to what to say to their children, as they themselves are frightened. Therefore, the supplemental resources offered in the form of short stories or worksheets help to facilitate open communication and act as a guide to parents. Moreover, Child Life Specialists work to improve communication between siblings as many within the literature reported a feeling of disconnect between healthy and ill siblings as they begin to spend time apart following the diagnosis. The self-constructed mailboxes allow children to express themselves creatively and then function as a way to ensure siblings maintain the opportunity to share with one another. As healthy siblings remain connected to both parents and their ill sibling, levels of separation anxiety and feelings of isolation should improve.

Teaching healthy siblings about the cancer diagnosis, implications, and treatment is a top priority at UNC Hospitals. The literature demonstrates that healthy siblings believe direct

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experienced as most negative thoughts came with the fear of the unknown. Siblings reported feeling as though they were the only ones who were unaware of the current situation, as few people were honest and open. Many interventions take place in order to ease anxiety and fear for patients as Child Life Specialists visit patients. Day to day, Child Life Specialists at UNC work to diminish the uncertainty faced by patients and families by giving hospital tours, allowing medical play with stuffed animals and models, and acclimating individuals to the environment and equipment before it becomes overwhelming. For healthy siblings exclusively, the monthly sibling support group’s February meeting ensured that a variety of interventions were available for a range of ages and developmental needs through the teddy bear clinic, chemotherapy and blood making experiments, and a basic practice of medical terminology. While doctors and nurses should begin to make educating healthy siblings a priority when possible, Child Life Specialists are trained to educate in a way that is specific to each individual’s need; therefore, the healthcare team should notify the Child Life team when it is apparent that a healthy sibling is present that would like information related to his/her sibling’s diagnosis.

The established monthly support group helps to provide a safe, supportive environment exclusively for siblings. With the onset of diagnosis and throughout the cancer experience, siblings battle an array of emotions from sadness, to guilt, jealousy, anger, hope, appreciation, anxiety, and worry. Siblings often report a lack of understanding from others; therefore, providing an opportunity to gather exclusively with other siblings allows healthy siblings to share these troubling personal emotions and feelings in a nonjudgmental, understanding

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the participants vary monthly, making it a challenge for siblings to become comfortable enough with one another to share such personal information as studies within the literature search found that bonding occurred over a span of time, with siblings unlikely to open up during the first session (Neville et. al., 2016).

Implications for Care

With an abundance of evidence demonstrating that healthy siblings of children with cancer experience serious distress, all siblings should be offered psychosocial support given the inverse relationship between social support and negative impact of disease (Marques et. al., 2018). As there are siblings who have demonstrated personal growth and resilience through the experience, those at highest risk should be identified appropriately and be offered more

individualized and intense support and treatment to avoid long-term negative psychosocial outcomes, such as posttraumatic stress, depression, and anxiety. The literature identifies siblings with low perceived social support, poor family function, unmarried parents, lower household income, and shorter time since diagnosis to be at a higher risk for maladaptation and

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positive growth for those at an increased risk for more severe effects. Beyond simply identifying needs, nurses should make parents aware of the possible impact on healthy siblings and should be equipped with an abundance of resources to offer parents and siblings in order to continue support when outside the hospital (Table 2). Professionals at UNC Hospitals have the privilege of utilizing Child Life Specialists to enhance support, therefore, interdisciplinary communication should be prioritized in order to achieve the best possible outcomes for healthy siblings as Child Life Specialists have the ability to go beyond what floor staff can do to promote resilience.

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from the pain of the truth (Tasker & Stonebridge, 2016); therefore, for those siblings under the age of 18, this creates an additional complication in addressing unmet needs.

Limitations

This study was limited as it was not possible to shadow the Child Life Specialists in their daily activities beyond the monthly support group due to overlap of the study and Child Life Specialists training interns. Additionally, in interviewing a Child Life Specialist, the data on sibling needs comes from a third party rather than directly from the siblings themselves. As Child Life Specialists have more access to siblings than most health care professionals, contact is still limited, especially after treatment of the ill sibling ends; therefore, this study is unable to speak to the long-term effects that exist with the cancer diagnosis of a brother or sister. Moreover, this study is specific to UNC Hospitals; therefore, cannot be generalizable as other smaller, more rural hospitals do not have the same resources.

Conclusion

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References

American Cancer Society. (2020). Key Statistics for Childhood Cancers. Retrieved from https:// www.cancer.org/cancer/cancer-in-children/key-statistics.html

Fletcher, B. S., Miaskowski, C., Given, B., & Schumacher, K. (2012). The cancer family

caregiving experience: an updated and expanded conceptual model. European journal of oncology nursing : the official journal of European Oncology Nursing Society, 16(4), 387–398. https://doi.org/10.1016/j.ejon.2011.09.001

Gerhardt, C. A., Lehmann, V., Long, K. A., & Alderfer, M. A. (2015). Supporting siblings as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), 750–804. doi: 10.1002/pbc.25821.

Jo, M.-J., Hong, S., & Park, H. R. (2018). Effects of art intervention program for siblings of children with cancer: A Pilot Study. Journal of Pediatric Oncology Nursing, 35(3), 178– 187. doi: 10.1177/1043454218762702

Long, K. A., Lehmann, V., Gerhardt, C. A., Carpenter, A. L., Marsland, A. L., & Alderfer, M. A. (2018). Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review. Psycho-Oncology, 27(6), 1467–1479. doi:

10.1002/pon.4669

Marques, G., Araújo, B., & Sá, L. (2018). The impact of cancer on healthy siblings. Revista Brasileira De Enfermagem, 71(4), 1992-1997.

doi:http://dx.doi.org.libproxy.lib.unc.edu/10.1590/0034-7167-2016-0449

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Neville, A., Simard, M., Hancock, K., Rokeach, A., Saleh, A., & Barrera, M. (2016). The emotional experience and perceived changes in siblings of children with cancer reported during a group intervention. Oncology Nursing Forum, 43(5). doi: 10.1188/16.onf.e188-e194

Patterson, P., McDonald, F. E. J., Butow, P., White, K. J., Costa, D. S. J., Millar, B., Cohn, R. J. (2014, March). Psychometric evaluation of the Sibling Cancer Needs Instrument (SCNI): an instrument to assess the psychosocial unmet needs of young people who are siblings of cancer patients. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/24496800.

Porteous, E., Peterson, E. R., & Cartwright, C. (2018). Siblings of young people with cancer in NZ: experiences that positively and negatively support well-being. Journal of Pediatric Oncology Nursing, 36(2), 119–130. doi: 10.1177/1043454218819455

Tasker, Susan & Stonebridge, Genevieve. (2016). Siblings, you matter: exploring the needs of adolescent siblings of children and youth with cancer. Journal of Pediatric Nursing. 31. doi: 10.1016/j.pedn.2016.06.005.

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Tables Table 1

Sibling Support Group Activities and Corresponding Needs

Month Planned Activities Needs Addressed

October  Pumpkin painting

 Scavenger hunt through the NC Botanical Gardens

 Art expression: find a flower that reminds you of your brother/sister and draw a picture

 Emotional expression

 Opportunity to share/ talk about the experience of having an ill sibling

 Recreation

 Chance to be a kid

November  Kahoot!: Introduction/ Getting to Know You

 Sibling beads: Create a bracelet/ keychain of beads—each bead represents something has accomplished or gone through  Torn paper collage: write things that you worry about on small sheets of paper, then rip them into small pieces and paste those pieces onto a canvas to create a collage  Thankfulness tree: write what makes you happy/what you are thankful for on paper leaves and then paste them to the paper tree

 Opportunity to share

 Understand that there are other siblings are going through similar experiences

 Identify stressors

 Identify positives/ areas of support  Discuss coping mechanisms

December  Pajama pizza party

 Movie (ELF) and popcorn  Free play with characters: Anna, Kristoff, Periwinkle

 Chance to be a kid  Recreation

 Opportunity to bond with other siblings

February  Teddy bear clinic

 Blood making experiment  Medical terminology  Dress up/doctor play  Operation board game

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Table 2

Common Encountered Sibling Support Resources

Books Online Resources

My Sibling Scrapbook

https://www.myhospitalscrapbook.com/my-sibling-scrapbook

Alex’s Lemonade Stand: SuperSibs! (4-7years, 8-12 years, 13+years)

https://www.alexslemonade.org/childhood-cancer/for-families/supersibs

Oliver’s Story (3-8years)

https://www.amazon.com/Olivers-Story-sibs-kids-Cancer/dp/0972404341

BeLoud! Sophie

https://beloudsophie.org/

The Invisible String (3-13 years)

https://www.amazon.com/Olivers-Story-sibs-kids-Cancer/dp/0972404341

Cancer.gov

https://www.cancer.gov/about-cancer/coping/ caregiver-support/teens

What About Me (4-8 years)

https://www.amazon.com/What-about-Me-Brothers-Sisters/dp/0945354495 Teenagecancertrust.org https://www.teenagecancertrust.org/get-help/ support-friends-and-family/my-brothersister-has-cancer

Upside Down and Backwards: A Sibling's Journey Through Childhood Cancer (8-13years) https://www.amazon.com/Upside-Down-Backwards-Siblings-Childhood/dp/ 1433816377/ref=sr_1_3? dchild=1&keywords=coping+with+sibling+ca ncer&qid=1585855843&s=books&sr=1-3

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