Abstract
Background:
Research on what children wished they had done differently after their sibling's death has not been reported.
Objective:
Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design:
Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects:
Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements:
Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results:
Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions:
Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
Introduction
Children lose a role model, playmate, and confidant, and often parents' emotional availability when a sibling dies. Terminally ill children and families may have time to confer and prepare for the child's death; however, most children's intensive care unit (ICU) admissions are unplanned, denying them this opportunity. Studies document what parents, but not children, wish they had/had not done after a child's death. This study examined children's wishes regarding what they had and had not done and their coping after their sibling's neonatal/pediatric ICU (NICU/PICU) or emergency department (ED) death.
What children wish they had/had not done
Studies after sibling death have focused on children's psychological reactions, reactions to seeing the deceased, and participation in family death rituals based on data from parents often years later. What children say they wish they had/had not done differently in the first year after sibling death has not been reported. In one study, 1 young adults (no race/ethnicity provided) whose sibling died within the past five years characterized their future without their sibling as painful and lonely. Some felt deceased siblings were watching them and/or always present, which made them feel good. In another study, 2 parents of stillborn infants reported reactions of their 19 surviving children (ages 2–12 years). Eight never saw their deceased sibling. Parents thought the stillborn was “too small” and/or that “it would harm [the surviving child].” Parents reported 7- to 12-year-olds were “worried, nervous, tense and silent.”(p156) Children frequently talked about the stillborn infant. 2
Fanos et al. 3 interviewed 14 siblings (white, 12 female, ages 16–27 years). Eight experienced their infant brother's/sister's death. Siblings were proud of seeing or holding their brother/sister in the NICU. Some thought they caused the death because they did not want a baby brother/sister. Interviewed 18 months after an older sibling's AIDS death, 11 African adolescents remembered the deceased by writing to them, looking at pictures, and singing their favorite songs. 4 Swedish adults 5 (≥18 years old) whose sibling's cancer death occurred when the participants were 12–25 years old were asked, “What advice would you give to providers working with children with cancer and their siblings?”(p298) Participants recommended including siblings in support modalities, introducing them to others who lost a brother/sister to cancer, and helping them talk about the deceased. They wished for more information about their ill sibling's condition from providers and for the opportunity to provide care for their ill sibling. 5
Child coping with the death
Children's coping with a death includes studies with deceased siblings only, siblings and parents, or a loved one, most after the first year. Distinctions in coping with sibling death versus other deaths often were not identified.
Norwegian children 6 (ages 8–12 years) were interviewed one to three years after their sibling's (n = 5) or parent's death (n = 6). Initially, children coped by participating in family conversations with clergy and helping to choose objects or letters to go in the coffin, flowers, music, tombstone, and the deceased's attire. Children wanted to be involved in death and funeral activities, to see things for themselves and say goodbye. Children linked to the deceased by keeping photos, toys, and clothes. Some felt the deceased's help in stressful situations at school. Children visited the grave, talked with the deceased, and remembered them on the anniversary of their birth and death.
Jonas-Simpson et al. 7 interviewed nine white children (ages 4–17 years) 2.5–12 years after an infant sibling's death. A private intimate connection developed with the deceased sibling, and children reported the character of their connection grew and changed as they grew and changed. Keepsakes6,7 were important and children coped by doing things in the sibling's name—drawing, reading, or writing a poem. Some children felt the deceased watching over them and protecting them. Children also felt uncomfortable their sibling could see what they were thinking and doing. 7
Twenty-five children 8 ages 8–12 years who experienced the sudden death of a loved one or a major trauma themselves were interviewed 10 months to 7 years later. Receiving cards, drawings, gifts, and visits; friendships with previous “enemies”; and practical help from peers and family were supportive. Children's coping methods fell into four categories: (1) concentrating on the normal and positive, (2) avoiding risks and reminders or triggers, (3) working through the trauma, and (4) seeking support.
Methods
Sample
As part of a National Institute of Health-funded longitudinal mixed methods study about children's physical and mental health after a sibling's NICU/PICU/ED death, children responded to three open-ended questions on their information sheet about what they wished they had/had not done and their coping at 2, 4, 6, and 13 months after the sibling's death. Seventy-one families were recruited from 4 children's hospitals and 14 other hospitals through online obituaries (6/2011 to 12/2015). Family inclusion criteria were (1) living in Florida with at least one English-speaking 6- to 18-year-old child; (2) English- or Spanish-speaking parent(s) ≥19 years old; and (3) children and parents each self-identified as Hispanic, black non-Hispanic, or white non-Hispanic. Numbers of individuals from other races and/or ethnicities are small in Florida. Child inclusion criteria were (1) in age-appropriate grade in school ±1 year, and (2) lived with their mother (neonatal deaths) or sibling and the same parent(s) before and after sibling's death. Exclusion criteria were (1) death of more than one family member in the same event, or (2) living in foster care before or after the death.
Procedure
After institutional human subjects review boards at Florida International University and four children's hospitals approved the study protocol, children's hospital coinvestigators identified potentially eligible families whose infant/child died in the PICU/NICU/ED at their hospital and provided families' contact information (public by state law). Potentially eligible families also were identified through public online obituaries and websites (e.g., newspapers, funeral homes) with no indication of where the child died. Families' phone numbers and addresses were obtained from online public databases when available. A bilingual (Spanish/English) letter about the study identifying study personnel and study contact information was sent to all potentially eligible families four to seven weeks after the death. One week later, a bilingual (Spanish/English) research assistant (RA) called the parent(s), determined eligibility and answered their questions. The RA scheduled the first data collection visit with parent(s) and their eligible children at two months postdeath in the family's home. There, the RA reviewed the study with parent(s) and children (separately), answered their questions, and obtained parent signed informed consent for themselves and their eligible children and for abstracting data from the deceased's hospital record. All children signed assent forms, except 18-year-olds who signed consent forms. Of 281 families contacted and eligible, 71 (25%) participated, a rate consistent with studies of children with life-threatening illnesses. 9
Measures
At 2, 4, 6, and 13 months after the sibling's death, children answered questions in private about themselves (e.g., age, gender, race/ethnicity); their school, mental and physical health; and three open-ended questions that allowed children to talk about their sibling's death if they wanted to do so.
When you think back to the events around your brother's or sister's death, are there things you wish you had done that you did not do? If so, what are they?
Are there things you did that you wish you had not done? If so, what are they?
What do you do to deal with the death of your brother or sister?
Data analysis
Conventional content analysis was used allowing codes and themes to emerge from the data versus imposing preconceived categories. 10 Two PhD study team members with research expertise, one with NICU and one with PICU experience, independently read the children's responses to the three open-ended questions. Each member separately clustered responses by question and time point. They discussed their clusters of responses to each question and agreed on a set of codes with operational definitions. After independently coding all child responses, they compared their coding and resolved any inconsistencies. Resulting themes were tallied for each time point and described with frequencies. Whether children responded was compared at each time point by gender, age group, and race/ethnicity with χ 2 . Bootstrapping techniques with 2000 runs, stratified by family, were used for these comparisons.
Results
The 132 children were 58% female; 72% school age versus 28% adolescents; 30% Hispanic, 50% black, and 20% white. The deceased siblings were 62% male, newborn to 18 years old (26 infants, 4 preschoolers, 15 school aged, and 26 adolescents) who died in the PICU (n = 45), NICU (n = 17), or ED (n = 9). Most (92%) were admitted in guarded, poor, or grave condition, and 56% had a preexisting condition. Many of the 39 acute (55%) deaths were violent (n = 15, gunshots, car crashes, and drownings) or congenital/newborn events (n = 14); 10 others were due to respiratory problems or infections. Most of the 32 chronic deaths (45%) were due to genetic/congenital conditions (n = 17); 6 others had cancer and 9 had respiratory problems or infections. Length of PICU/NICU stay averaged 17.1 days (standard deviation [SD] = 41.71). Children provided a total of 317 things they wished they had done (Table 1), 107 things they wished they had not done (Table 2), and 487 coping responses (Table 3).
Things Children Wished They Had Done
T1–2 months postdeath; T2–4 months postdeath; T3–6 months postdeath; T4–13 months postdeath.
Things Children Wish They Had Not Done
T1–2 months postdeath; T2–4 months postdeath; T3–6 months postdeath; T4–13 months postdeath.
How Children Cope with Their Sibling's Death
T1–2 months postdeath; T2–4 months postdeath; T3–6 months postdeath; T4–13 months postdeath.
Wish had done
Children who wished they had done something different at each time point post-sibling death did not differ significantly by age group, gender, or race/ethnicity. Children's responses for what they wished they had done (Table 1) clustered into six themes.
Spent more time with their sibling (33%) had the most responses, which decreased slowly from 2 to 13 months. Several wished they had “been at the hospital more” and “hugged [sibling] more, told I loved [sibling].” Others wished they had seen their sibling “that morning before [sibling] died” and “said good-bye.”
Talked and played more with their sibling (26%). These wishes included playing, talking, singing, and going to a specific place with their sibling more often.
Saved and/or helped their sibling (13%). These wishes included praying, protecting their sibling and preventing the event leading to their sibling's death, for example, stopping the sibling from crossing the street into an on-coming car. One child wished he/she “gave my life so [sibling] could live longer.” Another wished to “fly to heaven and bring [sibling] back.”
Taken care of the sibling more (12%). These wishes included feeding, holding, changing diapers, and taking the sibling out. These comments were made at every time point and increased in number over time.
Lost opportunities (9%) included helping their pregnant mother relax, having gotten a photo, and appreciating their sibling more. Some children wished they could have done things with their sibling they had planned for their future together, including going to the beach or on a jet, wanting the sibling to have his/her own room; and looking forward to watching their siblings grow up.
Hospital-related issues (7%). Some children wished the sibling had not gone to the hospital, had waited longer for surgery, had gone to a different hospital or to the hospital/physician sooner. Others wished they had been more informed and said something to the physicians. These responses were more common at two months after the sibling's death.
Wish had not done
Some children (26%) identified something they wish they had not done (Table 2). Teens were significantly more likely to identify things they wish they had not done than school age children at two and six months, χ 2 = 4.62, df = 1, p = 0.03; χ 2 = 5.07, df = 1, p = 0.02, respectively. At 13 months, significantly more Hispanic children identified things they wish they had not done than black or white children, χ 2 = 8.60, df = 2, p = 0.01. Boys and girls were not significantly different on whether they identified things they wish they had not done at any time point.
Children's responses fell into four themes.
Not been mean to their sibling (60%). They wished they had not fought, yelled, or neglected their sibling. Some wished they had not told their sibling they hated them and/or did not want them as a sibling. These responses were more common at four and six months.
Not skipped spending time with their sibling. Children wished they had gone to see their sibling, been there for their sibling, and not gone to a concert, a friend's house, gymnastics, and other places. Some wished they had not seen their sibling connected to the machines in the ICU. Response frequencies were similar at the four time points.
Not complained and argued. Some children wished they had not argued with their pregnant mother and their mother/grandmother about taking or leaving their sibling somewhere, thrown things (e.g., candle, diaper rash ointment) because they had to take care of their sibling, and been rude to their mothers. Almost half occurred at two months.
Behaviors they now regretted. Some children identified not forgiving those who wanted to talk about the sibling's death, feeling embarrassed by their sibling's condition, drinking alcohol, and keeping their feelings inside. These responses increased slowly from two to six months.
Coping
Children provided 487 responses for how they were coping that grouped into eight themes (Table 3). Children's most used coping themes were as follows:
Talking (26%) and (2) playing (20%). Children coped by talking to parents, family, friends, teacher, therapist, and the deceased sibling, especially at two months, and playing at two, four, and six months. One child “think[s] about [sibling] as an angel protecting us” and another “think[s] about things [sibling] can do in heaven that [he/she] couldn't do here.” Quiet activities (15%). Some children coped by listening to music, watching television, reading, eating or drinking, and enjoying nature. The numbers of responses were similar across time points. Avoiding and (5) remembering had similar proportions of children's responses. Avoiding behaviors—trying not to think about it, focusing on other things, and keeping busy—were similar across the first year. Remembering behaviors diversified over time, from keeping some of the sibling's things at two months, to visiting the grave at four months, and dreaming and thinking about their sibling at six months. Remembering at 13 months included all of these. Emotions. Emotional responses were most common at two and four months. They ranged from crying, “getting the pain out,” trying to be happy and normal, and keeping calm to thinking good thoughts, spending time with family, doing what helps their parents, and laughing. Prayer and faith. Numbers of responses in this theme were similar across time. Children found help in praying to God, and praying the mother has another baby. Children also mentioned having faith that their siblings are in a better place and that the death happened for the best. Some thought about seeing their siblings again. Changes for the future had a small total number of responses, but numbers increased over time. Children's responses were to “live life for [sibling],” “have a meaningful life,” become more social, get good grades, and accept and talk about the sibling's death.
Discussion
This first study reported what children said they wished they had/had not done and coping within the first year after the sibling's ICU death rather than parents' responses. It is also the first to include Hispanic, black, and white children's responses. Study children commented more about what they wished they had done (n = 317) and less about what they wished they had not done (n = 107). Children talked to others and resumed play activities to cope (n = 487).
Children wished most that they had spent more time with their sibling, which slowly decreased from 2 to 13 months. Themes of playing and taking care of their sibling included children spending more time with their sibling doing specific activities. Similarly, adults who lost a sibling in childhood also reported wishing they had provided care to their sibling. 5 Fanos et al. 3 found that siblings were proud of seeing or holding their brother/sister in the NICU. Consistent with these findings,11,12 Hispanic, black, and white bereaved parents also wished they had spent more time with their deceased children before their ICU deaths.
Children most often (60%) wished they had not treated their sibling poorly. They regretted having told their sibling they hated them and/or not wanting them as a sibling. Fanos et al. 3 found that adults who lost a sibling during childhood continued to regret saying or thinking they did not want a baby brother/sister and that they may have caused the death.
Common coping activities reported by children were talking with family and friends at two months; playing at two, four, and six months; and quiet activities at all time points. Similarly, Søfting et al. 6 and Jonas-Simpson et al. 7 found that talking to/with the deceased was comforting. Children in Alisic et al.'s study 8 reported being comforted by cuddly toys. Children often play to cope with adversity. Adults can misinterpret children's play as indicating the deceased sibling meant nothing to them or not understanding implications of the death.
Limitations
The convenience sample of families living in urban and rural areas of one state may not generalize to families in other states. School-aged children outnumbered adolescents. The response rate was low, but similar to bereavement studies by Youngblut et al.13,14 and studies of parents of children with life-threatening conditions. 9
Conclusions
Children's top wish, similar to their parents,13,14 was that they had spent more time with their sibling. Children sometimes are restricted in the time they spend with their sibling by adults who fear their children will be harmed in some way. 2 Spending time with their sibling is important even if the sibling is a newborn or stillborn. They have not “met” the infant, but may have felt the baby move in utero, talked with the baby, and planned what they want to teach or show the infant. Some children are restricted from participating in death rituals and ceremonies, which is psychologically 15 harmful. It also leaves children feeling separated from their families.16,17 Providing time for children to see their dying sibling in the ICU may help them feel included, perhaps with less regret at not spending time with their sibling. Activities that give children time and opportunity to see and touch their deceased sibling and participate in end-of-life rituals help children cope with a sibling's ICU death.
Footnotes
Acknowledgments
We thank our clinical partners for helping with recruitment and navigating their hospital systems. We are indebted to the children and their families who agreed to participate in the study at a very difficult time in their lives. We also acknowledge the NIH's National Institute of Nursing Research for the grant awarded to us to conduct the study.
Funding Information
This study was funded by grant #R01 NR012675 from the National Institutes of Health's National Institute of Nursing Research.
Author Disclosure Statement
No competing financial interests exist.