“It’s Just for Us!” Perceived Benefits of Participation in a Group Intervention for Siblings of Children With Cancer

“It’s Just for Us!” Perceived Benefits of Participation in a Group Intervention for... Abstract Objective This qualitative substudy aimed to investigate the outcomes of sibling group interventions from the perspective of siblings of children with cancer and their caregivers. Method Siblings were randomized to receive the Siblings Coping Together intervention (SibCT) or attention control (CG). In all, 30 participants, 18 siblings (average age = 11.89 years, 9 CG and 9 SibCT) and 12 caregivers (4 CG and 8 SibCT), were interviewed following group participation. SibCT consists of eight 2-hr manualized sessions delivered weekly; in each session, it combines arts and crafts and cognitive–behavioral strategies structured around a specific theme (family or school). The CG is structured only around arts and crafts. Interviews were analyzed using content analysis. Results Themes common to both groups included the following: having a group just for siblings, improving family relationships, and feeling reassured of parental role. Themes unique to the SibCT group included the following: learning program targets, increasing self-confidence, feeling less different, and connecting caregivers and siblings through homework. Themes unique to the control group included the following: being a good helper and being in the hospital for positive reasons. Conclusion This study uncovered additional intervention effects not captured in quantitative measures. Whereas benefits were noted in both groups and speak to the importance of support for siblings in general, positive personal and relational changes unique to siblings in the SibCT group and their caregivers support the importance of specific interventions focused on problem-solving siblings’ issues. cancer and oncology, children, chronic illness, coping skills and adjustment, intervention outcomes, parent stress Childhood cancer and its treatment can negatively impact the psychosocial adjustment of the affected child and the whole family, including siblings (Alderfer et al., 2010; Kaplan, Kaal, Bradley, & Alderfer, 2013; Sharpe & Rossiter, 2002; Van Schoors et al., 2017). Understandably, after a child is diagnosed with cancer, the family’s attention is shifted to the affected child and siblings may experience unintentional neglect (Wallin et al., 2016). Although the majority of siblings typically adjust well to this life change, a significant subgroup experience maladjustment including symptoms of anxiety, depression, and posttraumatic stress (Alderfer et al., 2010; Kaplan, et al., 2013; Long, Marsland, & Alderfer, 2013; Sidhu, Passmore, & Baker, 2006). Reportedly, siblings’ distress is highest during the initial stages of the disease (Sahler et al., 1994); for some, distress may persist 2 or more years after diagnosis (Houtzager, Grootenhuis, Caron, & Last, 2004; Long & Marsland, 2011) and may include risk for alcohol abuse in adulthood (Lown et al., 2008). Yet, siblings’ needs typically go unaddressed (Patterson, Medlow, & McDonald, 2015). Given these findings, providing siblings with appropriate supportive services has recently become a standard of psychosocial care in pediatric cancer (Gerhardt, Lehmann, Long, & Alderfer, 2015). Although psychosocial interventions for siblings of children with cancer are not new (Adams-Greenly, Shiminski-Maher, McGowan, & Meyers, 1987; Barrera, Chung, & Fleming, 2004; Barrera, Chung, Greenberg, & Fleming, 2002; Houtzager, Grootenhuis, & Last, 2001), rigorous evaluations of these interventions are rare. Recently, the efficacy of the Siblings Coping Together group (SibCT) was assessed with a larger sample of siblings using a randomized controlled trial (RCT) with two arms: intervention and attention control group. Siblings’ symptoms of depression, anxiety, and quality of life (QOL) and caregivers’ symptoms of anxiety were the major outcome measures (Barrera et al., 2018; Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). Briefly, compared with controls, siblings in the SibCT intervention in general did not show significant improvement in overall depression, anxiety, and QOL outcomes. Improvements over time in both groups were found in siblings’ depression and QOL and caregivers’ anxiety symptoms. (Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). The current qualitative substudy of the larger study aimed to investigate additional intervention effects that may not be captured in the quantitative measures. Qualitative approaches offer an opportunity to obtain a richer description of an individual’s experience and hence may complement results from quantitative methodology. Qualitative methods have been integral to our understanding of sibling adjustment to cancer (Alderfer et al., 2010) and have been used previously to report sibling’s satisfaction with individual supportive intervention (Nolbris & Ahlstrom, 2014). However, qualitative methods have not been used before to assess the experiences of siblings who participate in an RCT group intervention. Combining the rigor of RCT methodology with the richness of qualitative methodology is a valuable contribution to the field. Obtaining siblings’ and caregivers’ views of group participation may enrich our understanding of intervention outcomes if quantitative measures fail to demonstrate effects. For this reason, qualitative interviews were built into the RCT design of the current study. The following research questions were asked: Will siblings who participated in SibCT perceive benefits and intervention effects from SibCT that are not perceived by siblings in the attention control group? Will caregivers of siblings who participated in SibCT perceive benefits and intervention effects for themselves and the participating sibling that are not perceived by caregivers in the attention control group? Considering the critical ingredients of the SibCT intervention program, it was hypothesized that siblings in the intervention group would express themes related to increased knowledge of childhood cancer and its impact on every family member, improved coping with difficult situations, and improved self-perception. In addition, consistent with the nature of the attention control group, it was hypothesized that participants in both groups would express themes related to improvements in social relationships with others. Method Intervention SibCT has been extensively described elsewhere (Barrera, Chung, & Fleming, 2004). Briefly, SibCT is a manualized, cognitive–behavioral group intervention program. It emphasizes reframing siblings’ cognitive distortions (e.g., “I’m not as important as my brother with cancer”), problem-solving skills, and coping strategies through the use of role-playing, arts and crafts, games, group discussions, and homework. The SibCT group consists of eight weekly 2-hr group sessions run by two trained facilitators (e.g., psychologists and graduate students). Sessions are planned around specific themes: (1) getting to know each other; (2) medical education about cancer; (3) cancer in the family (the impact of cancer in every family member); (4) siblings’ personal experience with cancer (including personal beliefs and feelings); (5) relationships between healthy sibling and child with cancer; (6) school and peer relationships; (7) siblings’ future; and (8) wrapping up, graduation, and evaluation (manual available upon request). Homework is assigned at the end of each session and consists of activities siblings can do individually or with others (e.g., “questions you may have about cancer to ask the nurse next session”; “write/draw about how cancer met your family”). The attention control group also consists of eight weekly 2-hr group sessions run by trained facilitators. Sessions only involve fun activities, such as games and arts and crafts. Themes include seasonal holidays, vacations, pets, and favorite songs. Homework consists of “show and tell” (e.g., bring a picture of your family vacation). Participants The current sample is a subsample of the larger RCT study. The inclusion criteria in the larger study were as follows: siblings (1) had a brother or sister who had been or was in active cancer treatment, was at least 3 months post-diagnosis, and was expected to survive for at least 6 months; (2) were 8–16 years of age; and (3) had sufficient English fluency for group participation. In all, 75 siblings participated in the larger study. Recruitment for the current study was purposive, based on age and gender and balanced by group (efforts were made to obtain similar age and gender distribution from SibCT and control groups), and focused on obtaining multiple perspectives of group participation (Daly, 2007; Wu et al., 2016a). In addition, potential participants were eligible if they attended at least seven of the eight sessions in either the intervention or the control group and if siblings and caregivers had the language fluency that allowed them to self-describe, in depth, their thoughts and feelings regarding group participation in an interview (as determined by their group facilitators). In total, 37 families were eligible to participate in the interview based on attending a minimum of seven sessions. Of those 37 families, 30 families were deemed eligible based on speaking English fluently. Of the 30 eligible families, 20 families (one sibling and one caregiver) were invited to participate in the interview by a research assistant unaware of group allocation. Eighteen siblings (nine in SibCT and nine in control group; nine female) and 12 caregivers (eight in SibCT and four in control group; six female) agreed to be interviewed. Of the six caregivers who declined to be interviewed, four cited being overwhelmed with caring for the sick child and two stated that their spoken English was poor. Siblings’ ages ranged from 8 to 15 years (average = 11.89 years), and 61% of siblings were older than the ill child. There were no sibling donors in this sample. The average caregiver age was 41 years (age range = 35–54 years). Regarding the clinical characteristics of the ill children, leukemia/lymphoma (43%) and solid tumors (43%) were the main diagnoses, 33% were on active treatment, the average time since diagnosis was 2.38 years, and the average age at diagnosis was 6.91 years. Procedure Recruitment for the parent study took place between April 2012 and December 2014. The institutional research ethics board approved all study procedures, including audiorecording of participants who agreed to be interviewed at the end of the group sessions for the current study. Written, informed consent (or assent) for group participation was obtained before starting a group (parent study). Additional written, informed consent (or assent) for interview participation and audiorecording was obtained following group participation. After the final group session, siblings (and caregivers) who were invited to be interviewed were told that the purpose of the interview was to learn about their views regarding group participation. Interviews were conducted by six trained research assistants within the center in a private room. With four exceptions, interviewers were unfamiliar to the participant. The average duration of the interview was approximately 15 min for siblings and 20 min for caregivers. All interviews were audiorecorded and transcribed verbatim. Interviews were conducted within 2 weeks following the final group session and consisted of the following five open-ended questions: (1) What was it like for you (your child) to be in the group? Can you tell me more about it? What was good about it? What was not so good about it? (2) Since you (your child) started the group have you noticed any changes in yourself (or your child)? If so, please tell me about it. (3) Since you (your child) started the group how do you (your child) relate to other people in your family? Please tell me about it. (4) Since you started the group how do you relate to other kids at school? Teachers? Other kids in general? (5) Since you started the group how do you relate to your brother or sister with cancer? Before data coding, group allocation and all personal identifiers were removed from transcripts. After coding was completed, transcripts were unblinded to compare and contrast themes across groups and informants. Data Analysis Interviews were analyzed using inductive content analysis (Cavanagh, 1997). Analysis began after the first five interviews were completed. Keeping the research questions in mind (e.g., What was it like to be in the group?), analysis consisted of an iterative, open coding process where two primary coders immersed themselves in the first five transcripts. One of these coders was completely unfamiliar with the project, and the other had been a group facilitator. Two other investigators read the initial five transcripts to familiarize themselves with the global themes and participate in group discussions. Recurring themes and relational patterns that were common across transcripts were explored with the aids of charts and notes. The researchers met regularly to compare notes and develop codes, keeping a paper trail throughout the analysis (Yardley, 2008). Discrepancies were resolved by consensus. Following open coding, categories, themes, and subthemes were grouped together to form a codebook with all codes defined. The primary coders then coded all transcripts using the codebook and MAXQDA software. Ten percent of interviews were double coded by a third researcher to ensure acceptable (>85%) interrater reliability. Saturation was achieved with regard to the study aims with the current sample size. After coding was completed, investigators met to uncover group allocation (SibCT or CG) and informant (sibling or caregiver) to finalize classification categories for the themes and subthemes. The rigor of this analytic process and the trustworthiness of the data derive from the careful training of the investigators, the use of multiple coders, the development of a codebook, and gathering data from two informants (siblings and caregivers; Yardley, 2008). Results Themes were organized into the following categories: (1) common to both groups, (2) unique to the SibCT group, and (3) unique to the CG. Within each category, themes and subthemes are presented with quotations from siblings and caregivers. Table I presents a summary of the themes. Table I. Themes From Siblings’ and Caregivers’ Interviews Regarding Group Participation Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Table I. Themes From Siblings’ and Caregivers’ Interviews Regarding Group Participation Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ A. Themes Common to Participants From Both SibCT and Control Group (With Three Subthemes) A1. Having a Group Just for Siblings There were related themes around the core theme of having the opportunity to participate in group sessions that were developed only for siblings of children with cancer and not the sick child. This sentiment was captured by an 8-year-old girl (SibCT), “It was good to feel it’s (SibCT group) not for our ill siblings, it’s for us now … cause it’s usually all for them cause of the cancer.” A sense of belonging. In a related subtheme, after participating in the groups, siblings expressed feeling that through the group experience they found that they were part of a larger group of kids with similar experiences, “I wasn’t the only one,” stated a 9-year-old boy (CG); “I knew other kids were going through it but I didn’t know they were like as sad or as mad as I was until I came here and before I could get a chance to say stuff, all the other kids were saying the exact same thing as me,” Trusting the group and being the focus of attention. The group became a safe place where they felt comfortable to be themselves, share, and open up to others. As well, siblings expressed feeling good when they received “undivided attention” when they talked in the group, and free to express what they thought or felt, as illustrated by a 12-year-old girl (SibCT): “It was a great experience to talk about my feelings, to express them to myself and other people… It was nice having a bit of attention on me while I was sharing my feelings.” Similarly, an 8-year-old girl (SibCT) expressed, “It felt good to just let it out and it felt like whatever I said here would stay safe and it felt really good to just talk with other people about it.” A2. Improving Family Relationships It became evident throughout the transcripts that another common theme was positive changes in the family in terms of how they relate with one another. Thus, siblings in both groups and their caregivers reported positive changes in siblings’ mood at home associated with group participation. This change is explained by siblings expressing feeling “better at home,” or described by caregivers as (he/she is) “happier,” “more confident and outgoing,” “relaxed and happy,” and “not so down on self.” As told by a 12-year-old girl (SibCT), “When I go home (from the group) I wouldn’t feel sad or anything because they (group members) already understand so I get it off me with someone who understands what I’m talking about.” Siblings and caregivers also described improvement in how siblings got along with other family members, stating that the relationships had become “closer” and “more connected,” with siblings getting along and communicating better with both the ill child and caregivers since participating in the groups. A mother of a 9-year-old girl (SibCT) stated, “When they (sibling/ill child) are playing I see her compromising more and not being as frustrated.” A 16-year-old boy (CG) explained, “Now I’m kinda communicating with my family more. Before I wasn’t talking to anybody … now, you know, I hang out with them more so I think that’s an improvement.” A3. Feeling Reassured of Parental Role Caregivers spoke of feeling guilty for not always being there for the siblings and feeling reassured that their healthy child was receiving group support. For example, one mother of an 11-year-old boy (SibCT) said, “We are not able to explain to him a lot about what’s going on … So I think it was good that he got the chance to talk to other people about it.” Similarly, a mother of a 9-year-old girl (CG) explained, “There weren’t enough hours in the day or you just weren’t there at the right time when (sibling) needed to talk or when questions were being asked … So to be able to give her that avenue where it was about her and wasn’t about her sister … was reassuring that we were able to do that.” Caregivers of siblings in SibCT went further to express that the group was good not only for siblings but also for them. Here are a few examples. The father of an 11-year-old boy (SibCT) said, “It was good for me because I gave him this opportunity.” One mother of an 11-year-old girl (SibCT) expressed that she wanted her daughter “to know that what she (sibling) wants to do is as important as what (ill child) wants to do. We didn’t question her need to come. I’ve never asked her outright but I think that she must know that what she needs is just as important to us.” B. Themes Unique to the SibCT Group (With Five Subthemes) B1. Learning Program Targets When asked about what was good about participating in the group, siblings in SibCT and their caregivers expressed unique components that reflected the target of the intervention program. Learning about cancer is a theme that emerged primarily from siblings’ transcripts; they explained that having cancer knowledge eased worries and fears related to their brother’s or sister’s cancer, and made them “feel better.” As a 13-year-old boy explained, “Before I was really worried I could catch the disease but now we shared and you can’t really catch it … before I had the wrong facts. Now I have the right ones.” The most salient theme, however, was siblings’ learning new coping strategies, to problem-solve difficult situations in real life, or what to do in situations that they were previously unsure how to deal with. They expressed pride in their new coping skills. Here are some examples. A 13-year-old girl stated, “Now I know more, like what to do, how to react … before I would just be in panic mode!” Another participant, a 12-year-old girl, said, “I know that if I do something wrong I can talk about it (in the group) and find a solution and fix it the next day. We’d take the advice from what we used in the group and use it somewhere else.” Finally, caregivers of siblings in SibCT also noticed an improvement in how siblings managed emotions, suggesting improvement in emotional regulation. For example, the mother of a 9-year-old boy explained, “He was feeling a lot of guilt. ‘Why didn’t that happen to me? Why did it happen to (ill child)?’ He felt sorry for (ill child) and I don’t feel that anymore so much. He switched it to being helpful.” She goes on to explain, “He was able to express his feelings more … (expressing) his anger towards the whole situation.” B2. Increasing Self-Awareness and Confidence Siblings became more aware of their needs, perspective, and their own internal strength. For example, in response to the question of whether they have noticed any changes in themselves, siblings often reported “feeling stronger.” A 12-year-old boy explained, “Like if someone’s bothering you asking weird questions about how your brother has cancer, I would just tell them politely ‘can you please stop asking me these questions, it’s making me uncomfortable’.” Caregivers also noticed siblings’ increased self-awareness and confidence and ability to assert themselves and communicate more effectively with family members, as illustrated by the father of a 14-year-old girl: “I noticed that she got the ability to speak up for herself directly to (ill child) which is a tricky thing! Either she acted like a parent or like a kid … It was a really good way for her to have a way of acting like herself and speaking her own mind.” Similarly, one mother of a 9-year-old girl explained, “She’s always been a little more mature than the others (her siblings/peers) and sometimes I think she felt like she had to be that way whereas now she realizes she doesn’t have to be but that’s the role she’s comfortable with. [The group] gave her a chance to see how she reacts and that it’s ok to be worried about other people as long as you are still doing it with a healthy context.” B3. Feeling Less Different Siblings in SibCT expressed that being in the group made them feel more at ease with their friends and peers, rather than feeling different because of cancer. Although recognizing that at times their experience with cancer made them feel different from their peers, they started to notice many similarities with them. One 11-year-old boy stated, “I’ve noticed that me and other kids have differences and some similarities. The difference is I have gone through a lot with cancer in my life … The similarities is sometimes they (friends) know what I’m going through … how you’re feeling and especially my best friends know automatically what I’m feeling and what’s going on in my life.” Caregivers also noted this slight change in their healthy children in relation to their classmates, as exemplified by the mother of a 9-year-old boy: “He doesn’t feel so strange compared to the other kids. He feels blended into his class and his friends again.” B4. Increasing Awareness of Others Although siblings in general showed increased understanding of their ill brothers’/sisters’ needs, only siblings in SibCT discussed their increased awareness and understanding of what their brother/sister with cancer is going through, parental responsibilities, caring for the child with cancer, and frequent absences when their ill brother/sister had to be hospitalized. This is illustrated by a 14-year-old girl: “The group gave me sort of open mindedness where I could just talk about (ill child). It made me more aware of how I relate to my (ill) sibling and it made me more open to talk.” Another 13-year-old girl explained, “I noticed that since the group I’ve been more intelligent to what my dad is going through. There’s feelings that he has that I never knew about. So maybe he’s spending more time with (ill child) but that’s ok. I can respect that. I have a better understanding of that now.” B5. Connecting Caregivers and Siblings Through Homework Homework seemed to play a meaningful role for caregivers of siblings in SibCT in terms of helping them communicate with the siblings. Thus, for caregivers, homework provided them with the “window to the group,” “an opportunity for open communication with the sibling,” and a time to have difficult discussions. As for siblings, it looked as if homework empowered siblings to let caregivers in to their emotional and internal experience. One mother of a 9-year-old girl explained, “before it was kinda hard to start a conversation out of nowhere … this way there was a dedicated time of the week, and it was about her, when she was working on her homework, ‘so how’s your homework going?’ and she could bring it up, and it opened those doors for communication more easily.” Caregivers also found they “discovered siblings’ knowledge” when the sibling was doing homework. As the mother of a 9-year-old boy explained, “My son showed his homework to me and I was shocked how much he knows, how much he expresses, how he feels. He doesn’t verbalize that to me the same way.” Another mother of a 9-year-old girl expressed, “It was interesting to see that (sibling) picked up on my stress and that in her homework it wasn’t just mommy and daddy, it was everybody.” C. Themes Unique to the CG (With Two Subthemes) C1. Being a Good Helper When asked about how things have changed since starting the group, siblings in the CG focused on their role helping at home: “I’ve been more helpful,” “I’ve been doing more chores,” and “If (ill child) doesn’t want to take her medicine, I help her.” C2. Being in the Hospital for Positive Reasons When asked about possible benefits of sibling group participation, caregivers in the CG expressed that being at the hospital for the group was valuable because (a) driving to and from the group gave them the opportunity to spend quality time together and (b) they had the opportunity to meet with other caregivers. These subthemes are illustrated below: “I think because I’ve spent so much time here with (ill child) it was good for me to come down when it wasn’t for treatment … It was nice to have something to look forward to and that was going to be a positive experience” (mother of a 14-year-old girl). “The best part of the group was that we were spending time in the car … with her alone, focused on her, and that the group was just for her and not her brother, it was good bonding for (the sibling’s name) and I” (mother of a 15-year-old girl). Another mother of a 9-year-old girl stated, “I did talk to one of the other parents … and that was nice just to share, ‘cause that’s part of it, sharing stories to realize you’re not the only one going through some of these tough times.” Discussion There is a paucity of research using qualitative methods as part of an RCT to assess intervention effects. As part of a larger efficacy RCT study, this qualitative study aimed to capture intervention effects that may not be captured with quantitative methods. Thus, direct siblings’ and caregivers’ interviews were examined regarding group participation, to complement quantitative measures (QOL, anxiety, and depression symptoms), which were the primary focus of the parent RCT study. In general, those measures did not demonstrate superiority of the SibCT intervention over the attention control group. In the current qualitative study, we found themes suggesting benefits across the SibCT intervention and the attention control group as well as themes suggesting benefits unique to the intervention group. The most powerful theme across both groups was related to being part of a siblings group, regardless of the group allocation. Siblings appeared to feel validated and understood, enjoying the focus being on them rather than on the ill child. This was consistent with siblings’ reports of unmet needs, including attention for themselves, peer support, help dealing with feelings, and access to support services (Patterson, Millar, & Visser, 2011). Other important themes across all participants were as follows: perceived improvement in family relationships and caregivers reporting feeling reassured of parental role and relief that they were providing siblings with the opportunity to participate in a group, which caregivers also perceived as showing siblings that their needs were also important to them. The caregivers’ positive feelings about themselves may reflect an improvement in the caregiver’s self-identity as a parent, ‘feeling like a good parent’, a concept previously reported from interviews of parents of children with terminal illness (Hinds et al., 2009). Parents face many challenges trying to meet the needs of all their children, seriously ill or healthy. Feeling that they are doing “the right thing” for their “healthy” children may validate the parental role, which is perhaps the greatest joy a parent can experience. The perceived benefits of both groups may partly explain why the SibCT did not result in an overall effect of improvement in symptoms of anxiety, depression, and QOL in the parent study. Benefits reported for siblings in both groups may be similar to the general satisfaction reported in supportive camp-like interventions for siblings (Martiniuk, Silva, Amylon & Barr, 2014; Wu et al., 2016b). There were, however, themes unique to siblings who received SibCT. Siblings saw themselves as stronger and more comfortable speaking up for themselves, and their caregivers perceived them as more assertive. In addition, learning about cancer, having new coping and problem-solving strategies, managing emotions better, and increasing empathy were also reported. These themes have a direct link to what the SibCT program offered to siblings in terms of learning and coping and understanding of the perspective of other family members. Another theme that has a direct link to the SibCT intervention is “feeling less different” from their peers. Siblings in both groups had the social and attention component, but only those in SibCT had a session (#6) that focused on school and peer relationships and how to manage them. Thus, it appears that it was not only being with other siblings that was important, but problem-solving school issues with peers may have had an additional effect. Indeed, peer relationships and acceptance are considered to be critical for the psychological adjustment of siblings of children with cancer (Gerhardt et al., 2012). In a similar vein, siblings who participated in SibCT reported “increasing awareness of others,” which reflects greater understanding of the impact of childhood cancer in the family and an improvement in empathy. Although siblings in the control group did express being more helpful at home, increasing awareness of others seems to be more directly related to the focus of Session 3, cancer in the family, in which siblings are guided to examine the perspective of each family member in relation to cancer. There are reports of greater maturity and empathy in siblings of children with cancer (Samson, Rourke, & Alderfer, 2016). The current study suggests that the process of increasing understanding of the perspectives of others was facilitated by participation in the SibCT group. Finally, a unique theme emerging from interviews of caregivers of siblings in SibCT was caregivers’ perception of improvement in their communication with siblings through homework. Siblings and parents were able to connect with each other when the sibling was doing homework, over and beyond the time they spent together going to and from the group (as reported by caregivers of siblings in CG). It is well established that caregivers are psychologically affected by the diagnosis and treatment for the child with cancer (Hoekstra-Weebers, Jaspers, Kamps, & Klip, 2001; Rodriguez, et al., 2012; Rosenberg, et al., 2013; Vrijmoet-Wiersma, et al., 2008). The findings of this study suggest caregivers can also be positively and indirectly influenced by psychosocial interventions aimed at their healthy children. Indeed, interventions such as SibCT, which are focused on one family member, may have a positive influence on the family as a whole, supporting previous conceptualizations of family-centered care (Wiener & Pao, 2012). The current study should be viewed in light of some limitations. First, qualitative research may be influenced by the personal biases of the researchers. To ameliorate this potential bias, multiple strategies were used, including the use of two main coders who were blinded to group allocation and participant identity, multiple informants, and rigorous RCT design. One coder was familiar with the intervention group content and served also as group facilitator in three of the eight groups attended by siblings participating in the current study, which might have made her aware of the group allocation for some participants. The second primary coder, however, was not involved in group facilitation. Excluding caregivers with poor spoken English may limit the generalizability of the findings. However, unless using interviewers who speak the same language as the participants, this is an inherent limitation of qualitative interview studies. Given the culturally diverse sample in this study, this was not financially feasible. On the positive side, the sample of caregivers in this study was representative of the large diverse sample for the parent study. Finally, it is not possible to rule out the possibility that the findings could be due to the passing of time. In conclusion, this qualitative study provides a deeper understanding of the intervention effect by examining the group participation perspectives of siblings and caregivers in both arms, SibCT and CG. Having a special program where participants can meet other siblings seems to be beneficial (e.g., feeling they are not alone) regardless of the nature of the program. Greater benefits however (e.g., increasing sibling self-awareness and confidence) seem to be derived by siblings who participated in SibCT and their caregivers than siblings in the CG. Thus, these findings seem to validate the unique nature of the SibCT intervention group. Using cognitive–behavioral therapy problem-solving strategies as the primary strategy in SibCT seems to result in more in-depth benefits reported by both siblings and caregivers, which were not captured by the quantitative measures, complementing the quantitative outcomes of the RCT study reported elsewhere (Barrera et al., 2018; Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). The qualitative outcomes of this RCT provide some evidence for the importance of sibling care as part of family support when a child in the family is diagnosed with cancer (Gerhardt, Lehmann, Long, & Alderfer, 2015). Moreover, this study demonstrates families’ commitment to and appreciation of a group intervention for siblings, suggesting the feasibility of a group like SibCT. These qualitative findings need to be investigated further with quantitative methods. However, the value of qualitative methodology in understanding what siblings and caregivers perceive as most important and beneficial about group participation should not be underestimated. Integrating both quantitative and qualitative methods may help assess the efficacy and effectiveness of future interventions for siblings of children with cancer. Acknowledgments The authors wish to thank all siblings and their caregivers who participated in this study. The authors also acknowledge the assistance of Leanne Brister, students, and research assistants who contributed to the completion of this study. Funding The work reported in this article was funded by Children’s Blood and Cancer, C17, Childhood Cancer Canada Foundation, and the Coast to Coast Against Cancer. Conflicts of interest. None declared. References Adams-Greenly M. , Shiminski-Maher T. , McGowan N. , Meyers P. ( 1987 ). A group program for helping siblings of children with cancer . 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(Ed.), Qualitative psychology: A practical guide to research methods (pp. 235 – 251 ). London : Sage Publications . © The Author(s) 2018. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Pediatric Psychology Oxford University Press

“It’s Just for Us!” Perceived Benefits of Participation in a Group Intervention for Siblings of Children With Cancer

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© The Author(s) 2018. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com
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Abstract

Abstract Objective This qualitative substudy aimed to investigate the outcomes of sibling group interventions from the perspective of siblings of children with cancer and their caregivers. Method Siblings were randomized to receive the Siblings Coping Together intervention (SibCT) or attention control (CG). In all, 30 participants, 18 siblings (average age = 11.89 years, 9 CG and 9 SibCT) and 12 caregivers (4 CG and 8 SibCT), were interviewed following group participation. SibCT consists of eight 2-hr manualized sessions delivered weekly; in each session, it combines arts and crafts and cognitive–behavioral strategies structured around a specific theme (family or school). The CG is structured only around arts and crafts. Interviews were analyzed using content analysis. Results Themes common to both groups included the following: having a group just for siblings, improving family relationships, and feeling reassured of parental role. Themes unique to the SibCT group included the following: learning program targets, increasing self-confidence, feeling less different, and connecting caregivers and siblings through homework. Themes unique to the control group included the following: being a good helper and being in the hospital for positive reasons. Conclusion This study uncovered additional intervention effects not captured in quantitative measures. Whereas benefits were noted in both groups and speak to the importance of support for siblings in general, positive personal and relational changes unique to siblings in the SibCT group and their caregivers support the importance of specific interventions focused on problem-solving siblings’ issues. cancer and oncology, children, chronic illness, coping skills and adjustment, intervention outcomes, parent stress Childhood cancer and its treatment can negatively impact the psychosocial adjustment of the affected child and the whole family, including siblings (Alderfer et al., 2010; Kaplan, Kaal, Bradley, & Alderfer, 2013; Sharpe & Rossiter, 2002; Van Schoors et al., 2017). Understandably, after a child is diagnosed with cancer, the family’s attention is shifted to the affected child and siblings may experience unintentional neglect (Wallin et al., 2016). Although the majority of siblings typically adjust well to this life change, a significant subgroup experience maladjustment including symptoms of anxiety, depression, and posttraumatic stress (Alderfer et al., 2010; Kaplan, et al., 2013; Long, Marsland, & Alderfer, 2013; Sidhu, Passmore, & Baker, 2006). Reportedly, siblings’ distress is highest during the initial stages of the disease (Sahler et al., 1994); for some, distress may persist 2 or more years after diagnosis (Houtzager, Grootenhuis, Caron, & Last, 2004; Long & Marsland, 2011) and may include risk for alcohol abuse in adulthood (Lown et al., 2008). Yet, siblings’ needs typically go unaddressed (Patterson, Medlow, & McDonald, 2015). Given these findings, providing siblings with appropriate supportive services has recently become a standard of psychosocial care in pediatric cancer (Gerhardt, Lehmann, Long, & Alderfer, 2015). Although psychosocial interventions for siblings of children with cancer are not new (Adams-Greenly, Shiminski-Maher, McGowan, & Meyers, 1987; Barrera, Chung, & Fleming, 2004; Barrera, Chung, Greenberg, & Fleming, 2002; Houtzager, Grootenhuis, & Last, 2001), rigorous evaluations of these interventions are rare. Recently, the efficacy of the Siblings Coping Together group (SibCT) was assessed with a larger sample of siblings using a randomized controlled trial (RCT) with two arms: intervention and attention control group. Siblings’ symptoms of depression, anxiety, and quality of life (QOL) and caregivers’ symptoms of anxiety were the major outcome measures (Barrera et al., 2018; Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). Briefly, compared with controls, siblings in the SibCT intervention in general did not show significant improvement in overall depression, anxiety, and QOL outcomes. Improvements over time in both groups were found in siblings’ depression and QOL and caregivers’ anxiety symptoms. (Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). The current qualitative substudy of the larger study aimed to investigate additional intervention effects that may not be captured in the quantitative measures. Qualitative approaches offer an opportunity to obtain a richer description of an individual’s experience and hence may complement results from quantitative methodology. Qualitative methods have been integral to our understanding of sibling adjustment to cancer (Alderfer et al., 2010) and have been used previously to report sibling’s satisfaction with individual supportive intervention (Nolbris & Ahlstrom, 2014). However, qualitative methods have not been used before to assess the experiences of siblings who participate in an RCT group intervention. Combining the rigor of RCT methodology with the richness of qualitative methodology is a valuable contribution to the field. Obtaining siblings’ and caregivers’ views of group participation may enrich our understanding of intervention outcomes if quantitative measures fail to demonstrate effects. For this reason, qualitative interviews were built into the RCT design of the current study. The following research questions were asked: Will siblings who participated in SibCT perceive benefits and intervention effects from SibCT that are not perceived by siblings in the attention control group? Will caregivers of siblings who participated in SibCT perceive benefits and intervention effects for themselves and the participating sibling that are not perceived by caregivers in the attention control group? Considering the critical ingredients of the SibCT intervention program, it was hypothesized that siblings in the intervention group would express themes related to increased knowledge of childhood cancer and its impact on every family member, improved coping with difficult situations, and improved self-perception. In addition, consistent with the nature of the attention control group, it was hypothesized that participants in both groups would express themes related to improvements in social relationships with others. Method Intervention SibCT has been extensively described elsewhere (Barrera, Chung, & Fleming, 2004). Briefly, SibCT is a manualized, cognitive–behavioral group intervention program. It emphasizes reframing siblings’ cognitive distortions (e.g., “I’m not as important as my brother with cancer”), problem-solving skills, and coping strategies through the use of role-playing, arts and crafts, games, group discussions, and homework. The SibCT group consists of eight weekly 2-hr group sessions run by two trained facilitators (e.g., psychologists and graduate students). Sessions are planned around specific themes: (1) getting to know each other; (2) medical education about cancer; (3) cancer in the family (the impact of cancer in every family member); (4) siblings’ personal experience with cancer (including personal beliefs and feelings); (5) relationships between healthy sibling and child with cancer; (6) school and peer relationships; (7) siblings’ future; and (8) wrapping up, graduation, and evaluation (manual available upon request). Homework is assigned at the end of each session and consists of activities siblings can do individually or with others (e.g., “questions you may have about cancer to ask the nurse next session”; “write/draw about how cancer met your family”). The attention control group also consists of eight weekly 2-hr group sessions run by trained facilitators. Sessions only involve fun activities, such as games and arts and crafts. Themes include seasonal holidays, vacations, pets, and favorite songs. Homework consists of “show and tell” (e.g., bring a picture of your family vacation). Participants The current sample is a subsample of the larger RCT study. The inclusion criteria in the larger study were as follows: siblings (1) had a brother or sister who had been or was in active cancer treatment, was at least 3 months post-diagnosis, and was expected to survive for at least 6 months; (2) were 8–16 years of age; and (3) had sufficient English fluency for group participation. In all, 75 siblings participated in the larger study. Recruitment for the current study was purposive, based on age and gender and balanced by group (efforts were made to obtain similar age and gender distribution from SibCT and control groups), and focused on obtaining multiple perspectives of group participation (Daly, 2007; Wu et al., 2016a). In addition, potential participants were eligible if they attended at least seven of the eight sessions in either the intervention or the control group and if siblings and caregivers had the language fluency that allowed them to self-describe, in depth, their thoughts and feelings regarding group participation in an interview (as determined by their group facilitators). In total, 37 families were eligible to participate in the interview based on attending a minimum of seven sessions. Of those 37 families, 30 families were deemed eligible based on speaking English fluently. Of the 30 eligible families, 20 families (one sibling and one caregiver) were invited to participate in the interview by a research assistant unaware of group allocation. Eighteen siblings (nine in SibCT and nine in control group; nine female) and 12 caregivers (eight in SibCT and four in control group; six female) agreed to be interviewed. Of the six caregivers who declined to be interviewed, four cited being overwhelmed with caring for the sick child and two stated that their spoken English was poor. Siblings’ ages ranged from 8 to 15 years (average = 11.89 years), and 61% of siblings were older than the ill child. There were no sibling donors in this sample. The average caregiver age was 41 years (age range = 35–54 years). Regarding the clinical characteristics of the ill children, leukemia/lymphoma (43%) and solid tumors (43%) were the main diagnoses, 33% were on active treatment, the average time since diagnosis was 2.38 years, and the average age at diagnosis was 6.91 years. Procedure Recruitment for the parent study took place between April 2012 and December 2014. The institutional research ethics board approved all study procedures, including audiorecording of participants who agreed to be interviewed at the end of the group sessions for the current study. Written, informed consent (or assent) for group participation was obtained before starting a group (parent study). Additional written, informed consent (or assent) for interview participation and audiorecording was obtained following group participation. After the final group session, siblings (and caregivers) who were invited to be interviewed were told that the purpose of the interview was to learn about their views regarding group participation. Interviews were conducted by six trained research assistants within the center in a private room. With four exceptions, interviewers were unfamiliar to the participant. The average duration of the interview was approximately 15 min for siblings and 20 min for caregivers. All interviews were audiorecorded and transcribed verbatim. Interviews were conducted within 2 weeks following the final group session and consisted of the following five open-ended questions: (1) What was it like for you (your child) to be in the group? Can you tell me more about it? What was good about it? What was not so good about it? (2) Since you (your child) started the group have you noticed any changes in yourself (or your child)? If so, please tell me about it. (3) Since you (your child) started the group how do you (your child) relate to other people in your family? Please tell me about it. (4) Since you started the group how do you relate to other kids at school? Teachers? Other kids in general? (5) Since you started the group how do you relate to your brother or sister with cancer? Before data coding, group allocation and all personal identifiers were removed from transcripts. After coding was completed, transcripts were unblinded to compare and contrast themes across groups and informants. Data Analysis Interviews were analyzed using inductive content analysis (Cavanagh, 1997). Analysis began after the first five interviews were completed. Keeping the research questions in mind (e.g., What was it like to be in the group?), analysis consisted of an iterative, open coding process where two primary coders immersed themselves in the first five transcripts. One of these coders was completely unfamiliar with the project, and the other had been a group facilitator. Two other investigators read the initial five transcripts to familiarize themselves with the global themes and participate in group discussions. Recurring themes and relational patterns that were common across transcripts were explored with the aids of charts and notes. The researchers met regularly to compare notes and develop codes, keeping a paper trail throughout the analysis (Yardley, 2008). Discrepancies were resolved by consensus. Following open coding, categories, themes, and subthemes were grouped together to form a codebook with all codes defined. The primary coders then coded all transcripts using the codebook and MAXQDA software. Ten percent of interviews were double coded by a third researcher to ensure acceptable (>85%) interrater reliability. Saturation was achieved with regard to the study aims with the current sample size. After coding was completed, investigators met to uncover group allocation (SibCT or CG) and informant (sibling or caregiver) to finalize classification categories for the themes and subthemes. The rigor of this analytic process and the trustworthiness of the data derive from the careful training of the investigators, the use of multiple coders, the development of a codebook, and gathering data from two informants (siblings and caregivers; Yardley, 2008). Results Themes were organized into the following categories: (1) common to both groups, (2) unique to the SibCT group, and (3) unique to the CG. Within each category, themes and subthemes are presented with quotations from siblings and caregivers. Table I presents a summary of the themes. Table I. Themes From Siblings’ and Caregivers’ Interviews Regarding Group Participation Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Table I. Themes From Siblings’ and Caregivers’ Interviews Regarding Group Participation Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ Siblings Caregivers A. Themes common to both groups  A1. Having a group for siblings ✓ ✓   A sense of belonging ✓ ✓   Trusting the group and being the focus of attention ✓  A2. Improving family relationships ✓ ✓   Siblings improved mood ✓ ✓   Getting along better with family members ✓ ✓  A3. Feeling reassured of parental role ✓ B. Themes found only in SibCT  B1. Learning program targets ✓ ✓   Learning about cancer ✓ ✓   Improving emotional control ✓ ✓   Learning new coping skills to problem-solve in real life ✓  B2. Increasing self-awareness and confidence ✓ ✓  B3. Feeling less different ✓  B4. Increasing awareness of others ✓  B5. Connecting caregivers and siblings through homework ✓ C. Themes found only in control group  C1. Being a good helper ✓  C2. Being in the hospital for a positive reason ✓   Spending quality time together ✓   Meeting other caregivers ✓ A. Themes Common to Participants From Both SibCT and Control Group (With Three Subthemes) A1. Having a Group Just for Siblings There were related themes around the core theme of having the opportunity to participate in group sessions that were developed only for siblings of children with cancer and not the sick child. This sentiment was captured by an 8-year-old girl (SibCT), “It was good to feel it’s (SibCT group) not for our ill siblings, it’s for us now … cause it’s usually all for them cause of the cancer.” A sense of belonging. In a related subtheme, after participating in the groups, siblings expressed feeling that through the group experience they found that they were part of a larger group of kids with similar experiences, “I wasn’t the only one,” stated a 9-year-old boy (CG); “I knew other kids were going through it but I didn’t know they were like as sad or as mad as I was until I came here and before I could get a chance to say stuff, all the other kids were saying the exact same thing as me,” Trusting the group and being the focus of attention. The group became a safe place where they felt comfortable to be themselves, share, and open up to others. As well, siblings expressed feeling good when they received “undivided attention” when they talked in the group, and free to express what they thought or felt, as illustrated by a 12-year-old girl (SibCT): “It was a great experience to talk about my feelings, to express them to myself and other people… It was nice having a bit of attention on me while I was sharing my feelings.” Similarly, an 8-year-old girl (SibCT) expressed, “It felt good to just let it out and it felt like whatever I said here would stay safe and it felt really good to just talk with other people about it.” A2. Improving Family Relationships It became evident throughout the transcripts that another common theme was positive changes in the family in terms of how they relate with one another. Thus, siblings in both groups and their caregivers reported positive changes in siblings’ mood at home associated with group participation. This change is explained by siblings expressing feeling “better at home,” or described by caregivers as (he/she is) “happier,” “more confident and outgoing,” “relaxed and happy,” and “not so down on self.” As told by a 12-year-old girl (SibCT), “When I go home (from the group) I wouldn’t feel sad or anything because they (group members) already understand so I get it off me with someone who understands what I’m talking about.” Siblings and caregivers also described improvement in how siblings got along with other family members, stating that the relationships had become “closer” and “more connected,” with siblings getting along and communicating better with both the ill child and caregivers since participating in the groups. A mother of a 9-year-old girl (SibCT) stated, “When they (sibling/ill child) are playing I see her compromising more and not being as frustrated.” A 16-year-old boy (CG) explained, “Now I’m kinda communicating with my family more. Before I wasn’t talking to anybody … now, you know, I hang out with them more so I think that’s an improvement.” A3. Feeling Reassured of Parental Role Caregivers spoke of feeling guilty for not always being there for the siblings and feeling reassured that their healthy child was receiving group support. For example, one mother of an 11-year-old boy (SibCT) said, “We are not able to explain to him a lot about what’s going on … So I think it was good that he got the chance to talk to other people about it.” Similarly, a mother of a 9-year-old girl (CG) explained, “There weren’t enough hours in the day or you just weren’t there at the right time when (sibling) needed to talk or when questions were being asked … So to be able to give her that avenue where it was about her and wasn’t about her sister … was reassuring that we were able to do that.” Caregivers of siblings in SibCT went further to express that the group was good not only for siblings but also for them. Here are a few examples. The father of an 11-year-old boy (SibCT) said, “It was good for me because I gave him this opportunity.” One mother of an 11-year-old girl (SibCT) expressed that she wanted her daughter “to know that what she (sibling) wants to do is as important as what (ill child) wants to do. We didn’t question her need to come. I’ve never asked her outright but I think that she must know that what she needs is just as important to us.” B. Themes Unique to the SibCT Group (With Five Subthemes) B1. Learning Program Targets When asked about what was good about participating in the group, siblings in SibCT and their caregivers expressed unique components that reflected the target of the intervention program. Learning about cancer is a theme that emerged primarily from siblings’ transcripts; they explained that having cancer knowledge eased worries and fears related to their brother’s or sister’s cancer, and made them “feel better.” As a 13-year-old boy explained, “Before I was really worried I could catch the disease but now we shared and you can’t really catch it … before I had the wrong facts. Now I have the right ones.” The most salient theme, however, was siblings’ learning new coping strategies, to problem-solve difficult situations in real life, or what to do in situations that they were previously unsure how to deal with. They expressed pride in their new coping skills. Here are some examples. A 13-year-old girl stated, “Now I know more, like what to do, how to react … before I would just be in panic mode!” Another participant, a 12-year-old girl, said, “I know that if I do something wrong I can talk about it (in the group) and find a solution and fix it the next day. We’d take the advice from what we used in the group and use it somewhere else.” Finally, caregivers of siblings in SibCT also noticed an improvement in how siblings managed emotions, suggesting improvement in emotional regulation. For example, the mother of a 9-year-old boy explained, “He was feeling a lot of guilt. ‘Why didn’t that happen to me? Why did it happen to (ill child)?’ He felt sorry for (ill child) and I don’t feel that anymore so much. He switched it to being helpful.” She goes on to explain, “He was able to express his feelings more … (expressing) his anger towards the whole situation.” B2. Increasing Self-Awareness and Confidence Siblings became more aware of their needs, perspective, and their own internal strength. For example, in response to the question of whether they have noticed any changes in themselves, siblings often reported “feeling stronger.” A 12-year-old boy explained, “Like if someone’s bothering you asking weird questions about how your brother has cancer, I would just tell them politely ‘can you please stop asking me these questions, it’s making me uncomfortable’.” Caregivers also noticed siblings’ increased self-awareness and confidence and ability to assert themselves and communicate more effectively with family members, as illustrated by the father of a 14-year-old girl: “I noticed that she got the ability to speak up for herself directly to (ill child) which is a tricky thing! Either she acted like a parent or like a kid … It was a really good way for her to have a way of acting like herself and speaking her own mind.” Similarly, one mother of a 9-year-old girl explained, “She’s always been a little more mature than the others (her siblings/peers) and sometimes I think she felt like she had to be that way whereas now she realizes she doesn’t have to be but that’s the role she’s comfortable with. [The group] gave her a chance to see how she reacts and that it’s ok to be worried about other people as long as you are still doing it with a healthy context.” B3. Feeling Less Different Siblings in SibCT expressed that being in the group made them feel more at ease with their friends and peers, rather than feeling different because of cancer. Although recognizing that at times their experience with cancer made them feel different from their peers, they started to notice many similarities with them. One 11-year-old boy stated, “I’ve noticed that me and other kids have differences and some similarities. The difference is I have gone through a lot with cancer in my life … The similarities is sometimes they (friends) know what I’m going through … how you’re feeling and especially my best friends know automatically what I’m feeling and what’s going on in my life.” Caregivers also noted this slight change in their healthy children in relation to their classmates, as exemplified by the mother of a 9-year-old boy: “He doesn’t feel so strange compared to the other kids. He feels blended into his class and his friends again.” B4. Increasing Awareness of Others Although siblings in general showed increased understanding of their ill brothers’/sisters’ needs, only siblings in SibCT discussed their increased awareness and understanding of what their brother/sister with cancer is going through, parental responsibilities, caring for the child with cancer, and frequent absences when their ill brother/sister had to be hospitalized. This is illustrated by a 14-year-old girl: “The group gave me sort of open mindedness where I could just talk about (ill child). It made me more aware of how I relate to my (ill) sibling and it made me more open to talk.” Another 13-year-old girl explained, “I noticed that since the group I’ve been more intelligent to what my dad is going through. There’s feelings that he has that I never knew about. So maybe he’s spending more time with (ill child) but that’s ok. I can respect that. I have a better understanding of that now.” B5. Connecting Caregivers and Siblings Through Homework Homework seemed to play a meaningful role for caregivers of siblings in SibCT in terms of helping them communicate with the siblings. Thus, for caregivers, homework provided them with the “window to the group,” “an opportunity for open communication with the sibling,” and a time to have difficult discussions. As for siblings, it looked as if homework empowered siblings to let caregivers in to their emotional and internal experience. One mother of a 9-year-old girl explained, “before it was kinda hard to start a conversation out of nowhere … this way there was a dedicated time of the week, and it was about her, when she was working on her homework, ‘so how’s your homework going?’ and she could bring it up, and it opened those doors for communication more easily.” Caregivers also found they “discovered siblings’ knowledge” when the sibling was doing homework. As the mother of a 9-year-old boy explained, “My son showed his homework to me and I was shocked how much he knows, how much he expresses, how he feels. He doesn’t verbalize that to me the same way.” Another mother of a 9-year-old girl expressed, “It was interesting to see that (sibling) picked up on my stress and that in her homework it wasn’t just mommy and daddy, it was everybody.” C. Themes Unique to the CG (With Two Subthemes) C1. Being a Good Helper When asked about how things have changed since starting the group, siblings in the CG focused on their role helping at home: “I’ve been more helpful,” “I’ve been doing more chores,” and “If (ill child) doesn’t want to take her medicine, I help her.” C2. Being in the Hospital for Positive Reasons When asked about possible benefits of sibling group participation, caregivers in the CG expressed that being at the hospital for the group was valuable because (a) driving to and from the group gave them the opportunity to spend quality time together and (b) they had the opportunity to meet with other caregivers. These subthemes are illustrated below: “I think because I’ve spent so much time here with (ill child) it was good for me to come down when it wasn’t for treatment … It was nice to have something to look forward to and that was going to be a positive experience” (mother of a 14-year-old girl). “The best part of the group was that we were spending time in the car … with her alone, focused on her, and that the group was just for her and not her brother, it was good bonding for (the sibling’s name) and I” (mother of a 15-year-old girl). Another mother of a 9-year-old girl stated, “I did talk to one of the other parents … and that was nice just to share, ‘cause that’s part of it, sharing stories to realize you’re not the only one going through some of these tough times.” Discussion There is a paucity of research using qualitative methods as part of an RCT to assess intervention effects. As part of a larger efficacy RCT study, this qualitative study aimed to capture intervention effects that may not be captured with quantitative methods. Thus, direct siblings’ and caregivers’ interviews were examined regarding group participation, to complement quantitative measures (QOL, anxiety, and depression symptoms), which were the primary focus of the parent RCT study. In general, those measures did not demonstrate superiority of the SibCT intervention over the attention control group. In the current qualitative study, we found themes suggesting benefits across the SibCT intervention and the attention control group as well as themes suggesting benefits unique to the intervention group. The most powerful theme across both groups was related to being part of a siblings group, regardless of the group allocation. Siblings appeared to feel validated and understood, enjoying the focus being on them rather than on the ill child. This was consistent with siblings’ reports of unmet needs, including attention for themselves, peer support, help dealing with feelings, and access to support services (Patterson, Millar, & Visser, 2011). Other important themes across all participants were as follows: perceived improvement in family relationships and caregivers reporting feeling reassured of parental role and relief that they were providing siblings with the opportunity to participate in a group, which caregivers also perceived as showing siblings that their needs were also important to them. The caregivers’ positive feelings about themselves may reflect an improvement in the caregiver’s self-identity as a parent, ‘feeling like a good parent’, a concept previously reported from interviews of parents of children with terminal illness (Hinds et al., 2009). Parents face many challenges trying to meet the needs of all their children, seriously ill or healthy. Feeling that they are doing “the right thing” for their “healthy” children may validate the parental role, which is perhaps the greatest joy a parent can experience. The perceived benefits of both groups may partly explain why the SibCT did not result in an overall effect of improvement in symptoms of anxiety, depression, and QOL in the parent study. Benefits reported for siblings in both groups may be similar to the general satisfaction reported in supportive camp-like interventions for siblings (Martiniuk, Silva, Amylon & Barr, 2014; Wu et al., 2016b). There were, however, themes unique to siblings who received SibCT. Siblings saw themselves as stronger and more comfortable speaking up for themselves, and their caregivers perceived them as more assertive. In addition, learning about cancer, having new coping and problem-solving strategies, managing emotions better, and increasing empathy were also reported. These themes have a direct link to what the SibCT program offered to siblings in terms of learning and coping and understanding of the perspective of other family members. Another theme that has a direct link to the SibCT intervention is “feeling less different” from their peers. Siblings in both groups had the social and attention component, but only those in SibCT had a session (#6) that focused on school and peer relationships and how to manage them. Thus, it appears that it was not only being with other siblings that was important, but problem-solving school issues with peers may have had an additional effect. Indeed, peer relationships and acceptance are considered to be critical for the psychological adjustment of siblings of children with cancer (Gerhardt et al., 2012). In a similar vein, siblings who participated in SibCT reported “increasing awareness of others,” which reflects greater understanding of the impact of childhood cancer in the family and an improvement in empathy. Although siblings in the control group did express being more helpful at home, increasing awareness of others seems to be more directly related to the focus of Session 3, cancer in the family, in which siblings are guided to examine the perspective of each family member in relation to cancer. There are reports of greater maturity and empathy in siblings of children with cancer (Samson, Rourke, & Alderfer, 2016). The current study suggests that the process of increasing understanding of the perspectives of others was facilitated by participation in the SibCT group. Finally, a unique theme emerging from interviews of caregivers of siblings in SibCT was caregivers’ perception of improvement in their communication with siblings through homework. Siblings and parents were able to connect with each other when the sibling was doing homework, over and beyond the time they spent together going to and from the group (as reported by caregivers of siblings in CG). It is well established that caregivers are psychologically affected by the diagnosis and treatment for the child with cancer (Hoekstra-Weebers, Jaspers, Kamps, & Klip, 2001; Rodriguez, et al., 2012; Rosenberg, et al., 2013; Vrijmoet-Wiersma, et al., 2008). The findings of this study suggest caregivers can also be positively and indirectly influenced by psychosocial interventions aimed at their healthy children. Indeed, interventions such as SibCT, which are focused on one family member, may have a positive influence on the family as a whole, supporting previous conceptualizations of family-centered care (Wiener & Pao, 2012). The current study should be viewed in light of some limitations. First, qualitative research may be influenced by the personal biases of the researchers. To ameliorate this potential bias, multiple strategies were used, including the use of two main coders who were blinded to group allocation and participant identity, multiple informants, and rigorous RCT design. One coder was familiar with the intervention group content and served also as group facilitator in three of the eight groups attended by siblings participating in the current study, which might have made her aware of the group allocation for some participants. The second primary coder, however, was not involved in group facilitation. Excluding caregivers with poor spoken English may limit the generalizability of the findings. However, unless using interviewers who speak the same language as the participants, this is an inherent limitation of qualitative interview studies. Given the culturally diverse sample in this study, this was not financially feasible. On the positive side, the sample of caregivers in this study was representative of the large diverse sample for the parent study. Finally, it is not possible to rule out the possibility that the findings could be due to the passing of time. In conclusion, this qualitative study provides a deeper understanding of the intervention effect by examining the group participation perspectives of siblings and caregivers in both arms, SibCT and CG. Having a special program where participants can meet other siblings seems to be beneficial (e.g., feeling they are not alone) regardless of the nature of the program. Greater benefits however (e.g., increasing sibling self-awareness and confidence) seem to be derived by siblings who participated in SibCT and their caregivers than siblings in the CG. Thus, these findings seem to validate the unique nature of the SibCT intervention group. Using cognitive–behavioral therapy problem-solving strategies as the primary strategy in SibCT seems to result in more in-depth benefits reported by both siblings and caregivers, which were not captured by the quantitative measures, complementing the quantitative outcomes of the RCT study reported elsewhere (Barrera et al., 2018; Barrera, Atenafu, Nathan, Schulte, & Hancock, 2018, under review). The qualitative outcomes of this RCT provide some evidence for the importance of sibling care as part of family support when a child in the family is diagnosed with cancer (Gerhardt, Lehmann, Long, & Alderfer, 2015). Moreover, this study demonstrates families’ commitment to and appreciation of a group intervention for siblings, suggesting the feasibility of a group like SibCT. These qualitative findings need to be investigated further with quantitative methods. However, the value of qualitative methodology in understanding what siblings and caregivers perceive as most important and beneficial about group participation should not be underestimated. Integrating both quantitative and qualitative methods may help assess the efficacy and effectiveness of future interventions for siblings of children with cancer. Acknowledgments The authors wish to thank all siblings and their caregivers who participated in this study. The authors also acknowledge the assistance of Leanne Brister, students, and research assistants who contributed to the completion of this study. Funding The work reported in this article was funded by Children’s Blood and Cancer, C17, Childhood Cancer Canada Foundation, and the Coast to Coast Against Cancer. Conflicts of interest. None declared. References Adams-Greenly M. , Shiminski-Maher T. , McGowan N. , Meyers P. ( 1987 ). A group program for helping siblings of children with cancer . 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(Ed.), Qualitative psychology: A practical guide to research methods (pp. 235 – 251 ). London : Sage Publications . © The Author(s) 2018. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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Journal of Pediatric PsychologyOxford University Press

Published: Oct 1, 2018

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