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The Experience of Compassion In School-Age Siblings of Children With a Severe Traumatic Injury.

Unintentional causes of nonfatal injuries remain a serious problem for children in the United States ages 0 to 18 years for both sexes and all races. From 2010-2014, there were 43.78 million injuries in this age group; out of these, 1.2 million children were subsequently transferred or hospitalized due to their sustained injuries (Centers for Disease Control and Prevention [CDC], 2016). Within families of these children, there are siblings experiencing a medical crisis as it unfolds. Little attention has been given to these well siblings, resulting in sparse research on their lived experience to document and validate their own unique perspective. What it is like for these siblings as they live through this challenging event in their family is largely unknown.

In the ever-changing world of sibling bonds that span a lifetime, there are frequently moments of intensity. For well school-age siblings of children who have sustained severe traumatic and unexpected injuries, the moments in the first few weeks and months after the injury of their brother or sister can generate deep feelings. Feelings of siblings in this phenomenological study regarding compassion were revealed and are shared here. Compassion was the strongest theme uncovered in the study. Previously, Bugel (2014) reported other findings from this same study.

Review of the Literature

Compassion and the three related sub-themes of sadness, empathy, and altruism are uncomplicated ideas, and their meanings seem evident. A basic definition of each concept is outlined below:

* Compassion--A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering (Dictionary.com, 2017b).

* Sad--Affected by unhappiness or grief; sorrowful or mournful (Dictionary.com, 2017d).

* Empathy--The psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another (Dictionary.com, 2017c).

* Altruism--The principle or practice of unselfish concern for or devotion to the welfare of others (Dictionary.com, 2017a).

There is a gap in the literature regarding studies that focus solely on what it is like for well school-age siblings as they live through their brother's or sister's traumatic injury as told from the sibling's perspective. Only related studies reporting some similar concepts were revealed through a search of the literature.

Sadness

Woodgate (2006) found that the most predominant feeling of healthy siblings experiencing a brother or sister with cancer was that of "enduring sadness" (p. 411). Siblings in the study (mean age 12 years) expressed sadness at seeing their brother or sister suffer; this sadness became so enduring that it became part of their lives, as if it was a part of their persona, even if the ill children's status and health eventually improved.

In a related study about siblings' reactions to the death of their brother or sister, Griffiths (2011) reported on siblings' feelings regarding the "loss of the parent" while their parents cared for their dying brother or sister. Griffiths (2011) found that siblings were resentful of the attention their parents gave to the dying child because it took their parents away from them. However, sadness was not specifically reported as a reaction.

Empathy

Lam, Solmeyer, and McHale (2012) studied the development of empathy among siblings ages 7 to 14 years. During the years immediately preceding adolescence (late school-age years), empathy toward siblings emerges. Results demonstrated gender differences in the development of sibling empathy: "girls' empathy increased across the transition to adolescence and then leveled off about age 12" (p. 1664); dissimilarly, "boys' empathy increased temporarily at the transition to adolescence but then declined" (p. 1665). These researchers also found that "youths who had closer relationships with their siblings, on average, reported higher levels of empathy" (p. 1665). These findings are broad in nature and not specific to siblings of children with traumatic injuries.

Benderix and Sivberg (2007) studied experiences of 14 siblings with a brother or sister who had autism and intellectual and developmental disabilities; 5 of 14 siblings were between age 6 to 15 years. Siblings participating in this study expressed "feeling sorry" for their brothers or sisters and had emotions of pity for them (p. 414). Further, these siblings had empathetic feelings toward their brothers or sisters, which in turn "led to understanding and sympathetic behaviors, such as helpfulness" (p. 415).

Altruism

Although not referred to as "altruism," Woodgate (2006) reported a very analogous concept. Siblings "expressed the need to be there for their ill brother or sister by doing anything that would help him or her to feel better" (p. 411). Siblings wanted to be there for their ill brothers or sisters, and to help them.

Method

Descriptive phenomenology was the method used in this study to describe the lived experience of participants. "Phenomenology is an approach to understanding people's everyday life experiences" (Polit & Beck, 2018, p. 187). Because phenomenology seeks to understand a phenomenon, and little is understood about what well school-age siblings are experiencing as their brother or sister becomes seriously injured, it follows that phenomenology is an appropriate method to use to help answer the research question: What is the experience of being a well school-age sibling of a child recovering from a severe traumatic injury?

Participants

All 7 participants of this study were school-age children enmeshed in the phenomenon. Their affected brother or sister, who was previously well, was seriously injured to the extent that he or she was hospitalized and required a course of inpatient acute rehabilitation to regain physiological, anatomical, and/or cognitive functions. Participants ranged in age from 8 to 12 years, were male and female, and were of varying ethnic backgrounds (Caucasian, African American, Asian, and Hispanic). Injuries to affected children included traumatic brain injury, multiple orthopedic injuries, and spinal cord injury. These injured children ranged in age from 8 to 18 years; some were younger, the same age, or older than their well-sibling (see Tables 1 and 2).

Setting

Participants in this research study were recruited from and interviewed at an independent pediatric rehabilitation hospital in the Northeastern United States.

Sampling Strategy And Recruitment

The primary strategy for recruitment in phenomenology is purposive and aims to find participants who truly have experienced the phenomenon of study personally. To that end, the researcher contacted every family within the setting that consisted of at least one well school-age sibling and a hospitalized child who had been seriously injured in a traumatic injury, and invited the family to learn more about the study. This process continued while data collection proceeded over a period of 13 months. Every family contacted consented and was eager and willing to participate, with only one exception. Specific school-age children informants all assented to be part of the study and to "tell their story."

Data Collection

The researcher conducted personal, one-on-one interviews with well school-age children who were experiencing the phenomenon of study. These interviews were digitally recorded for accuracy and transcribed verbatim by a professional transcriptionist. Interviews were private, semi-structured conversations guided by open-ended questions. All siblings spoke in their own words. They participated willingly, and at times, enthusiastically. Data were collected over 13 months until data saturation was achieved (until no new themes emerged from data).

Research participants were protected by stringent procedures designed to protect confidentiality, such as the use of codes and fictious names, and by strict privacy during actual interviews. Consent from parents and assent from school-age participants were obtained. The study was reviewed and approved by a university Institutional Review Board prior to the initiation of data collection.

Data Analysis

The aim of phenomenology is to understand the experience of human beings as revealed by actual people living the experience. It seeks to explore the experience of a phenomenon, and describe and identify the "essences" of the phenomenon through analysis of data. These essences are revealed as themes (Munhall, 1994, 2007; Van Manen, 1990). Generalizability of findings is not a guiding principle in phenomenology; rather, the reader makes his or her own decision to use findings. When the reader determines that participants and the phenomenon are valuable and analogous to his or her own professional practice, then he or she may choose to "transfer" findings to the practice.

After each personal interview was conducted and transcribed, the researcher dwelled on data through many readings and re-readings. The process used to identify themes that emerged from spoken words of participants was a basic qualitative analysis method described by Ely (1991). The researcher read and re-read data, and labelled, coded, and categorized data. Patterns were identified within data, and ultimately, themes emerged.

Findings

Four major themes were uncovered: compassion, a difficult experience, changes, and constants. The latter two themes have been described elsewhere (Bugel, 2014). However, the strongest and most common theme discovered was compassion. School-age siblings participating in this study expressed a depth of compassion for their injured brothers or sisters, as well as for their parents and other injured children. Further, compassion was composed of several elements or subthemes: sadness, empathy, and altruism.

Sadness

Sadness was expressed by all siblings in this study. They frequently described how they felt when seeing their injured brother or sister. Referring to her injured sister, one sibling explained that the saddest and hardest thing for her was "her things, her pain. Stuff like that. Her problems. I feel sad, 'cause I don't really like when she's in pain. I feel; I start crying with her because I don't like when she is in pain."

Siblings spoke about how sad this experience made them feel, especially when they saw their brother or sister for the first time after the injury occurred. This initial experience was difficult for siblings. One sibling stated: "In the beginning, it was kind of sad... Sometimes when I go to visit her, I get sadder." When speaking about the hardest and saddest thing for her, another sibling explained that it was sad "when I found out she was in the hospital." Another sibling told of his experience seeing his brother for the first time after the accident and realizing he was in pain: "It was kind of sad. He doesn't like that I know it will hurt a lot. It was kind of sad because that day they took him off his [pain] medication... he started screaming and stuff."

School-age siblings in this study also expressed sadness at seeing other children at the hospital--patients other than their brothers or sisters who were also injured and/or physically compromised. Frequently, they encountered these patients on the inpatient clinical unit, in various therapy areas, and in recreation rooms. One sibling communicated her sadness by stating:
I feel sometimes sad. When I'm in the hospital, I see people. There's a
type of wheelchair they use. [Referring to a motorized wheelchair.] I
feel so bad inside my heart. I feel bad 'cause I wish this never
happened to them. And I wish that they felt fine, and walked, and do
their things.


Sadness became profound at times and was expressed as a deeper feeling. One child stated:
One little boy, who can't talk, they made a type of chair for him so
that he does everything himself. He drives the chair by himself. And I
feel so bad for him because he can't move his hands. His hands are like
this [indicating contracted flexion in the hands and wrists]. I feel
bad. I feel sad. I feel I want to cry. And some kids, they were in a
bad car accident. I feel bad for them because they were more hurt, just
like my sister. I feel sad. I feel uncomfortable. I feel like I wish I
was them, and they were me. I feel uncomfortable when people are really
injured. I feel really sad. I hoped, I wished, that this never happened
because this is the worst thing ever.


Empathy

At times, the sadness that all siblings in this study experienced developed further into a sense of empathy. While describing the accident and what had happened to her younger sister, one sibling expressed her empathy: "Me and my sister, we started crying because she had a bunch of things that I wish didn't happen to her. I kept telling her, 'I wish it was me and not you.'" Yet another sibling expressed empathy for his older brother when he stated: "I want him to have whatever he wants because he is here." On the other hand, when his brother was happy and enjoying something, like when the affected child could reconnect and communicate with friends in his usual way, the school-age sibling became "kind of happy about that."

Altruism

Compassion reached a level of altruism for some siblings. One sibling spoke about how she wanted to help her younger sister and what she felt when she visited her sister in the rehabilitation unit. She said:
It's hard for me and her. Because sometimes I start crying. I just want
to be with her. I want to help her. I start crying because I wish I was
an adult already so I could be with her--help her--with things. Her
things that she doesn't feel comfortable with. Like with things that
hurt her the most."


Further, this 11-year-old sibling became introspective when she stated: "I want to help her, but I am still a girl."

Discussion

School-age siblings participating in this study willingly shared their experiences and feelings related to their brother or sister becoming seriously injured in an unforeseen accident, and how the resulting trauma affected them personally. They shared what the experience was like for them.

Siblings in this study felt strong emotions that connected them to the situation in a very real way. School-age siblings are in the concrete operational stage of cognitive development. They reported strong feelings of sadness, which is present-oriented and self-oriented; therefore, this finding is comprehensible from a developmental perspective and not surprising.

Strong feelings of compassion for their affected brother or sister were expressed by well school-age siblings living through the trauma. In widely used theories of child development, emotional development of the child is generally thought to be connected in part to relationships the child experiences within his or her nuclear family (Bank & Kahn, 1982/1997; Bowlby, 2005; Erikson, 1963; Piaget & Inhelder, 1969). Therefore, it seems reasonable to deduce that the experience the well sibling undergoes as the affected child and family move through the traumatic injury may have an impact on the sibling's emotional development, and that it may facilitate a heightened sense of emotional development and compassion within the sibling.

Responses and feelings siblings reported in this study were similar to those of other siblings of brothers and sisters with serious illnesses, both acute and chronic, including siblings of children with cancer. The child's capacity to embrace feelings of sadness and empathy, both elements of compassion, have been demonstrated in other studies of siblings of hospitalized children (Fleitas, 2000; Montgomery, 2000; Morrison, 1997; Murray, 1998). Likewise, an increase in compassion was reported by Sargent and colleagues (1995) with siblings of children with cancer.

Implications for Professional Practice

Findings in this study authenticate the capacity for compassion that well school-age siblings possess and provide a deeper understanding of the meaning of this experience in the lives of these siblings. These well school-age siblings have a depth of compassionate feelings and emotions embedded into their experience, and these feelings are essentially focused on their injured brother or sister. Although siblings appeared overall to be coping well with their brother or sister's traumatic injury, these findings highlight the needs surrounding their sadness and compassion. It is imperative that any plan of care for these families include research-based strategies designed to meet needs of well school-age siblings so nursing practice can truly be family-centered and evidence-based.

Health professionals must facilitate communication with these siblings. The sincere and real compassion siblings experience toward their brothers or sisters with a traumatic injury is supported by this study. Parents and health professionals must acknowledge these feelings as genuine and important. Planning for varied methods for school-age siblings to express those feelings in appropriate ways in a safe and comfortable environment with caring and concerned adults listening is paramount to good mental health. Sibling support groups, art therapy, and other creative ways to express feelings should be explored. Referrals to available professional resources, such as child life specialists and child psychologists, should be arranged for siblings, especially for siblings who may be struggling with these feelings. Additionally, parents must be made aware of feelings these siblings may experience based on the research, so they are aware of what to expect and realize the importance of reinforcing positive aspects of their child's feelings.

Recommendations For Future Research

Further research is needed to examine the development of these siblings as they move on to adolescence and adulthood. Will the theme of compassion identified in school-age years continue to be significant? Will these school-age children become more caring individuals, sensitive to the needs of others? Will this experience affect them in a positive way, shaping them into more compassionate and altruistic adults?

References

Bank, S., & Kahn, M. (1982/1997). The sibling bond. New York, NY: Basic Books.

Benderix, Y., & Sivberg, B. (2007). Siblings' experiences of having a brother or sister with autism and mental retardation: A case study of 14 siblings from five families. Journal of Pediatric Nursing, 22(5), 410-418.

Bowlby, J. (2005). The making and breaking of affectional bonds. London, United Kingdom: Routledge.

Bugel, M.J. (2011). A phenomenological study of the experience of being a well school-age sibling of a child with a traumatic injury. Retrieved from http://scholarship.shu.edu/cgi/viewcontent.cgi?article=1038&context=dissertations

Bugel, M.J. (2014). Experiences of school-age siblings of children with a traumatic injury: Changes, constants, and needs. Pediatric Nursing, 40(4), 179-186.

Centers for Disease Control and Prevention (CDC). (2016). Welcome to WISQARS [TM] Retrieved from http://www.cdc.gov/injury/wisqars/index.html

Dictionary.com. (2017a). Altruism. Retrieved from http://www.dictionary.com/browse/altruism

Dictionary.com. (2017b). Compassion. Retrieved from http://www.dictionary.com/browse/compassion Dictionary.com. (2017c). Empathy. Retrieved from http://www.dictionary.com/browse/empathy

Dictionary.com. (2017d). Sad. Retrieved from http://www.dictionary.com/browse/sad

Ely, M., with Anzul, M., Friedman, T., Garner, D., & Steinmetz, A. (1991). Doing qualitative research: Circles within circles. London, United Kingdom: Routledge Falmer.

Erikson, E. (1963). Childhood and society (2nd ed.). New York, NY: Norton. Fleitas, J. (2000). When Jack fell down... Jill came tumbling after: Siblings in the web of illness and disability. Maternal Child Nursing, 25(5), 267-273.

Griffiths, J. (2011). Helping children through sibling loss. Community Care, 1857, 20-21.

Retrieved from http://www.communitycare.co.uk/2011/03/10/helping-children-through-sibling-loss/Lam, C.B., Solmeyer, A.R., & McHale, S.M. (2012). Sibling relationships and empathy across the transition to adolescence. Journal of Youth & Adolescence, 41(12), 1657-1670.

Montgomery, L. (2000). Needs of siblings of hospitalized children (Doctoral dissertation). Retrieved from UMI's ProQuest Digital Dissertations. (Publication No. AAT 9996142).

Morrison, L. (1997). Stress and siblings. Paediatric Nursing, 9(4), 26-27.

Munhall, P. (1994). Revisioning phenomenology: Nursing and health science research. Sudbury, MA: Jones & Bartlett.

Munhall, P. (2007). Nursing research: A qualitative perspective (4th ed.). Sudbury, MA: Jones & Bartlett.

Murray, J.S. (1998). The lived experience of childhood cancer: One sibling's perspective. Issues in Comprehensive Pediatric Nursing, 21(4), 217-227.

Piaget, J., & Inhelder, B. (1969). The psychology of the child. (H. Weaver, Trans.). New York, NY: Basic Books.

Polit, D., & Beck, C. (2018). Essentials of nursing research: Appraising evidence for nursing practice (9th ed.). Philadelphia, PA: Wolters Kluwer.

Sargent, J.R., Sahler, O.J., Roghmann, K.K., Mulhern, R.K., Barbarian, O.A., Carpenter, P.J Zeltzer, L.K. (1995). Sibling adaptation to childhood cancer collaborative study: Siblings' perceptions of the cancer experience. Journal of Pediatric Psychology, 20(2), 151-164.

Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London, Ontario, Canada: The State University of New York.

Woodgate, R.L. (2006). Siblings' experience with childhood cancer. Cancer Nursing, 29(5), 406-414.

Bugel, M.J. (2018). The experience of compassion in school-age siblings of children with a severe traumatic injury. Pediatric Nursing, 44(1), 7-11.

Mary Jo Bugel, PhD, RN, is Assistant Dean and an Assistant Professor, Rutgers University School of Nursing, Newark, NJ.

Acknowledgement: This research was funded in part by the Gamma Nu Chapter of Sigma Theta Tau International Honor Society of Seton Hall University, South Orange, NJ.

Author's Note: Findings from this study were published previously. A more detailed description of the study methodology, participants, descriptive tables, initial review of the literature, and method of data analysis can be found in Bugel (2011, 2014).
Table 1. Years of Age and Gender of Siblings and Index Children

Sibling Age (N = 7)  Number (Frequency)  Index Child Age (N = 6)

 8                   1 (14%)              8
 9                   1 (14%)              9
10                   1 (14%)             13
11                   3 (43%)             17
12                   1 (14%)             18
Sibling Gender       Number (Frequency)  Index Child Gender
Male                 2 (29%)             Male
Female               5 (71%)             Female

Sibling Age (N = 7)  Number (Frequency)

 8                   1 (17%)
 9                   2 (33%)
10                   1 (17%)
11                   1 (17%)
12                   1 (17%)
Sibling Gender       Number (Frequency)
Male                 1 (17%)
Female               5 (83%)

Source: Reprinted from Bugel (2014, p. 181).

Table 2. Family Characteristics

Age Difference (years)              Number (Frequency)

-7 (Sibling younger)                1 (14%)
-6                                  1 (14%)
-4                                  1 (14%)
-2                                  1 (14%)
0 (Same age, twins)                 1 (14%)
+2                                  1 (14%)
+3 (Sibling older)                  1 (14%)
Total Number of Siblings in Family  Number (Frequency)
2                                   1 (14%)
3                                   5 (72%)
4                                   1 (14%)
Sibling's Racial/Ethnic Features    Number (Frequency)
Asian, Filipino                     1 (14%)
Mixed*                              1 (14%)
White, Hispanic                     1 (14%)
White, Caucasian                    4 (57%)

*Half African-American, half White-Portuguese.

Source: Reprinted from Bugel (2014, p. 181).
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Title Annotation:Continuing Nursing Education
Author:Bugel, Mary Jo
Publication:Pediatric Nursing
Article Type:Report
Date:Jan 1, 2018
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