This study examined the relationships between siblings’ sex, birth order, and time since first sought treatment and internalizing, externalizing, and total behavior problems over time. We found that these problems improved with time and that sex, birth order and time since first sought treatment were significantly related to the outcomes.
Siblings with behavior problem scores that were in the clinical range were the highest at Time 1 and decreased by Time 3. This proportion was greater than those reported in other research. For instance, Humphrey et al. examined internalizing and externalizing problems in 30 siblings of children with a variety of life-limiting conditions (e.g., neuromuscular, genetic/congenital, and metabolic) using the Behavioral Assessment System for Children, Second Edition (BASC-2), a tool similar to the CBCL.33 They found that 7% of the siblings had Internalizing and Externalizing Problem scores in the clinical range. Similarly, Achenbach & Rescorla reported that 10% of the normative sample had Internalizing and Externalizing Problems scores within the clinical range.30 In contrast, we found that the proportion of siblings with internalizing problems and externalizing problems at Time 1 was 2 to 3 times greater than that reported by Humphrey et al.33 However, at Time 3, the proportion of siblings within the clinical range was similar to that in the normative sample and that in Humphrey et al.’s population.33
The changes in siblings’ emotions and behavior with time, as observed in our study, may be attributed to factors such as the availability of support. Wawrzynski et al.’s review highlighted that having different support, such as informal family social support and informational support, may be beneficial to siblings of children with cancer.34 However, there is limited information on when support should be provided directly to siblings. Furthermore, the trajectories of children diagnosed with cancer may be different from those of children diagnosed with progressive neurological, metabolic, or genetic conditions. To better care for siblings in the latter group, support should be tailored to meet siblings’ specific needs, and the timing of interventions in relation to the child’s illness should also be considered.
Siblings of children with cancer and chronic illness generally exhibit more problems closer to the time of diagnosis.24,35,36 In our study, it was necessary to use a slightly different concept focusing on the time when parents first sought treatment for their ill child. However, the findings were similar in that siblings had more internalizing and externalizing problems closer to the time when the child first became ill enough for parents to seek help than did those who had been living with an ill child in the family for more than one year. These findings suggest that providing support to siblings early in the disease process may help them understand and better cope with upcoming challenges.
Siblings who were older than the ill child had greater total behavior problems than did siblings who were younger than the ill child. A possible explanation may be that older siblings remember a time before the ill child was born or became ill and experienced a significant change in their lives. Younger siblings may have only known their family as one that includes an ill child and thus may not be aware of or have experienced a particular change in their life due to the illness. Additionally, parents spend significant time caring for their child with life-limiting conditions and assume that older siblings are mature enough to cope on their own. However, Yang et al. reported that older siblings still require appropriate support and guidance to understand their unique situation.16 Our findings contrast with those of Alderfer et al., who reported that younger siblings had greater levels of internalizing and externalizing problems than older siblings.8 However, their focus was on siblings of children with cancer who may have a different experience than siblings of children with progressive life-limiting conditions. Further research is needed to understand the role of siblings’ birth order in shaping their experience of having a brother or sister with progressive life-limiting conditions.
Two interesting findings that surfaced were as follows: 1) brothers had more internalizing problems than sisters did, and 2) sisters had more externalizing problems than brothers did. Although the differences between the Internalizing and Externalizing Problems scores of brothers and sisters were small, Achenbach & Rescorla indicated that a change in scale scores is considered significant when group scores are significantly different.30 While some authors have found that brothers are more likely to develop externalizing problems, others have found that brothers may experience emotional struggles because they tend to receive less education-related communication from parents than sisters.10,24,37 Additionally, researchers have found that sisters are generally more prone to internalizing problems, likely due to increased caregiving responsibilities at home, fewer social activities with peers, and a lack of parental attention.36,38 However, our findings revealed that sisters had more externalizing problems than brothers, possibly due to uncertainties in the initial phases of the child’s condition. This was supported in Malcolm et al.’s study, which suggested that sisters’ externalizing problems may be an effort to gain greater parental attention, as parents tend to focus on children with life-limiting conditions.39 Similar to birth order, further research is needed to examine whether there are differences in emotional and behavioral outcomes among healthy siblings based on both sex and gender. It may be particularly useful to conduct in-depth interviews to elicit siblings’ perceptions of the challenges they face.
Limitations
Despite the strengths of using a longitudinal design, there are some noteworthy limitations. First, this study examined only the emotional and behavioral aspects of siblings’ experience measured by the CBCL. There may be other important aspects of siblings’ experiences, such as empathy, growth, or resilience, that are not captured by the tool. Second, families who were coping well may have been more likely to agree to participate in this research than families who may have been overwhelmed and thus reluctant to participate in a longitudinal study. This potential response bias would reduce the generalizability of our findings but may represent an underestimate of the degree of emotional and behavioral problems among healthy siblings. Third, while we accounted for three key variables—birth order, sex, and time since first sought treatment—other factors may also influence siblings’ emotional and behavioral problems, such as severity of illness, types of support that siblings received, parents’ level of stress, or siblings’ perception of coping. Although the sample size in our study was sufficient to complete our planned analysis, it was relatively small in terms of generalizability. Larger samples are required to be able to account for a wider variety of variables. Finally, this study examined siblings’ behavior only from parents’ perspectives. While parents may provide accurate observation and information about their children’s problems, Houtzager et al. reported discrepancies between parental reports and sibling self-reports.40 As such, future studies should examine siblings’ behavior from multiple informants, such as siblings themselves, parents, and teachers at school, to determine whether their emotional and behavioral trajectories are different from those identified in this study. Having multiple informants may help to provide a clearer and more consistent picture of siblings’ behavior trends in different settings, such as school and home.40,41
Implication for Practice
Healthy siblings are known as ‘forgotten mourners’, and often, the provision of support for them may be delayed or limited.19 Our study showed that siblings experience emotional and behavioral challenges early in the child’s illness trajectory. It may be helpful for healthcare providers to work with parents and consider what support might be useful for siblings. While most pediatric hospitals have specialized and trained staff, such as child life specialists or play therapists, support programs are mainly designed for pediatric patients whose needs may be different from those of their healthy siblings. It is helpful to consider developing unique support programs for healthy siblings of children with progressive life-limiting conditions that use a holistic approach to address both emotional and behavioral challenges related to a high degree of uncertainty inherent in the disease course.