Parents’ Wishes for what they had or had not done and their Coping after their Infant’s or Child’s NICU/PICU/ED Death

Abstract

This qualitative study asked 70 mothers and 26 fathers 3 open ended questions on what they wish they had, had not done, and coping 2, 4, 6, 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his/her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were most frequent mothers’ coping strategies; fathers’ were caring for self, and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. Most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.

More than 40,000 infants and children die in the US annually, most in NICUs and PICUs. Around the time of the infant or child’s death, parents are faced with making stressful decisions on treatments, resuscitation, and withdrawal of life support^1,2. Some parents want everything to be done (resuscitation, nutrition, hydration, airway management and circulation support) while others prefer no further treatments (withholding / withdrawing / limiting current therapies). Parents want clear explanations about the child’s status^1,3 and many wish to be present during resuscitation, and withdrawal of life support⁴. Many parents want to hold and be with their child before the death. The NICU/PICU environment can be a frightening experience adding to parents’ anxiety and loneliness during this time. These memories can persist for years after their child’s death^1,5.

Some parents report that they had not been adequately prepared for the child’s death⁶ perhaps due to deterioration in the child’s condition, providers’ discomfort in talking with parents about the child’s impending death, or parent’s inability to hear and accept the providers’ message. At this critical time, parents need access to the staff ^6,7, compassion^1,8, patience^1,9 and repeated explanations of the child’s condition and prognosis at a level they understand^10,11. Conflicts between parents and health care staff on care at this time^1,3,12 can have immediate and lasting effects on parents for decades. The child’s death leaves parents devastated¹³, and many in shock and disbelief.

After the death parents face wakes and funerals, dealing with siblings and other family members. When the wakes, burials, cremations and memorial services are over, parents have time to revisit thoughts about the deceased child and the time and events just before and after the death, often reflecting on what they might have done differently. Unfortunately the literature base on what parents wished they had or had not done around a child’s NICU/PICU/ED death is very limited. Those that have included some measure of what parents wished they had done or not done include whether to be with and hold the child continuously, withdraw life support, or talk with the child about death¹⁴. Cacciatore and colleagues surveyed over 3500 mothers (over 2,000 White) of stillborn infants and found that 95% saw their stillborn infant and 90% held the baby¹⁵. The 80% of those who did not see and hold the baby later regretted their decision. Other parents have reported feeling guilty for not having remained with their hospitalized child when they felt staff were unknowledgeable or unkind¹.

The literature on parent coping after child death is limited and focuses on parents’ coping styles, family cohesion and life perspectives, changed behaviors, priorities, making meaning, and often evaluates parents’ coping from the providers’ perspective^16,17. The majority of studies are with parents of children with cancer or children who committed suicide^18,19. In a qualitative study of 36 mothers (78% White) and 24 fathers (83% White), Gilmer et al. reported parents sadness. Mothers’ coping strategies were trying to “be strong” and, “getting through it”²⁰. Ross and colleagues studying child suicide, found parent coping strategies were avoidance, maintaining a positive attitude, looking after their own physical and mental health and maintaining a continuing bond with the deceased child²¹. They also coped by keeping occupied through work and other activities.

A recent study examined what 104 parents (Hispanic, Black, and White) wished they had and had not done and their coping with a child’s death at 1, 3, 6, 13 months and 2–6 years after the death²². Mothers wished most to have spent more time with the child, held child more, and chosen different treatment path. Fathers wished most to have spent more time with child, and monitored the child more closely. Mothers wished they had not taken poor care of themselves, and agreed to the child’s surgery/treatment. Fathers wished they had not left hospital, and agreed to surgery/treatment. Mothers most used coping strategies were caring for herself and remembering the child. Fathers were caring for himself, and moving forward.

In summary, child death is a devastating for parents with the added stress from the ICU or emergency room environment, unfamiliar staff, and difficult decisions that need to be made. The limited research on what parents wished they had or had not done around a child’s death and how they coped have small sample sizes with White parents, and often data collected from parents years after the child’s death. The purpose of this study was to examine what parents (Hispanic, Black and White) wished they had or had not done for their child, and how they coped 2, 4, 6, and 13 months after their infant’s/child’s NICU/PICU/ED death.

Methods

Design.

This descriptive study was part of a larger longitudinal study (NIH, R01 NR012675) examining surviving siblings’ and parents’ health and functioning 2–13 months after a child’s NICU/PICU death²³. In this study and in our previous study (NIH, R01 NR009120)²², we used the same 3 open ended questions on what parents wished they had or had not done and their coping around the child’s death. Data in this study were collected at 2, 4, 6, and 13 months post-infant’s/child’s death. The present study sample differed from our previous study²² by including only parents with a surviving child(ren), and having been recruited from the entire state.

Procedure

The study was approved by the University’s Institutional Review Board (IRB) and the IRBs of 4 South Florida hospitals.

Inclusion criteria:

Parents understood spoken English or Spanish, had a deceased neonate from a singleton pregnancy or deceased child ≤18 years, who lived at least 1 hour in NICU/PICU/ED.

Exclusion criteria:

Parents’ deceased newborn was from a multiple-gestation pregnancy, deceased child was in foster care before hospitalization, child’s injury was due to suspected child abuse, or a parent or sibling died in the illness/injury event.

Clinical co-investigators at the hospitals identified Hispanic/Latino, White non-Hispanic, and Black non-Hispanic parents whose child died in their NICU/PICU/ED and met study criteria and provided parents’ names and contact information to the project director. Research assistants (RAs) searched online obituary notices to identify families and then online databases for their contact information. Clinical co-investigators provided addresses and phone numbers for any missed families from their facility. At 6–7 weeks after the death, we sent a letter (in Spanish and English) to families identified through the hospitals and the obituaries that described the study, identified the bilingual RAs on the project, and provided the project phone number and email address. About 1 week after the letter was sent, an RA called the family, further described the study, answered parents’ questions, screened for inclusion/ exclusion criteria, ascertained whether the family was willing to be in the study, and made an appointment to go to the family’s home. At the home, the RAs again explained the study to the parent(s), answered any questions and obtained their signed consent for their participation, and review of their deceased child’s hospital record. Of the 281 families who received a contact letter, 224 (80%) were eligible, and 71 (32%) participated. This participation rate is consistent with a systematic review of recruitment strategies in research with children with life-threatening illnesses²⁴.

Measures

Demographic data.

At 2 months after the child’s death, in the language of their choice (English or Spanish), parents completed a family demographic form which included data on: a) the family – number of parents and children in the home, annual family income; b) the parent(s) – age, race/ethnicity, education, marital status; c) each surviving sibling – age, gender, race/ethnicity, grade in school; and d) the deceased child – date of birth and death, gender, and cause of death. Data that could change (number of parents and children in the home, annual family income, and parent education and marital status) were updated at 13 months.

Deceased child’s hospital chart data included:

date and time of hospital and NICU/PICU/ED admission, date and time of death, date (and time for neonates) of birth, admitting diagnosis. Mode of death was a) “failed CPR,” b) “brain death,” c) “treatment limited,” and d) “life support withdrawn.”

Wish you had or had not done & dealing with the death.

Parents reported their responses to 3 open-ended questions at 2, 4, 6, and 13 months after the death. Parents were interviewed in person in their homes by a study team interviewer who recorded verbatim parent responses to each question and read the response to each parent for content validity. Interviews took 45 to 60 minutes each. The open ended questions were:

1. When you think back to events around your child’s death, are there things you wish you had done that you did not do?

2. Are there things you did that you wish you had not done?

3. What did you do to deal (cope) with the death of your child?

Data analysis.

Conventional content analysis procedures were used to allow codes and themes to emerge from the data rather than imposing preconceived categories²⁵. Two PhD prepared study team members, both with research experience and one with NICU experience and one with PICU experience, independently read and reread 50% of the parent transcripts from the 3 open ended questions and made notes on potential initial codes. They came together to discuss and compare their thoughts and notes about the transcripts. From this discussion they agreed on a set of codes with operational definitions. The 2 study team members then used these codes and operational definitions to code all of the parents’ responses to the 3 open ended questions and met to compare their coding and resolve any coding inconsistencies. Resulting themes were then tallied by theme and time-points and presented using descriptive statistics.

Results

Sample.

The sample consisted of 70 mothers and 26 fathers in 71 families (Table 1). The deceased children died in a PICU (63%), NICU (24%), or ED (13%) in one of 18 health care facilities throughout Florida. Deceased children were: 37% teens, 37% infants, 21% school aged, and 5% preschoolers. Most died as a result of failed CPR (death despite administration of resuscitation and medications) and limiting treatment (not increasing life-sustaining interventions). Deceased children’s chart diagnoses included congenital or chromosomal anomalies, head trauma, prematurity, infections, sudden infant death syndrome, birth injury, and seizures.

Table 1.

Characteristics of Parents, and Deceased Children

Parent Characteristics		Mothers (N = 70)	Fathers (N = 26)
Age	[M (SD)]	35.9 (7.13)	39.0 (7.37)
Race/ethnicity	Hispanic [n (%)] Black non-Hispanic [n (%)] White non-Hispanic [n (%)]	23 (33%) 30 (43%) 17 (24%)	8 (30%) 9 (35%) 9 (35%)
Education	< High school [n (%)] High school graduate-some college [n (%)] College graduate [n (%)]	19 (27%) 28 (40%) 23 (33%)	8 (31%) 13 (50%) 5 (19%)
Partnered?	Yes [n (%)] No [n (%)]	54 (77%) 16 (23%)	24 (92%) 2 (8%)
Family income (N = 71)	< $20,000 [n (%)] $20,000 – $49,999 [n (%)] $50,000 and greater [n (%)]	28 (39%) 26 (37%) 17 (24%)
Deceased Child’s Characteristics (N=71)
Age at death (months)	[M (SD)]	92.3 (82.28)
Gender	Male [n (%)] Female [n (%)]	44 (62%) 27 (38%)
Where death occurred	Pediatric Intensive Care Unit [n (%)] Neonatal Intensive Care Unit [n (%)] Emergency Department [n (%)]	45 (63%) 17 (24%) 9 (13%)
Mode of death	Failed CPR [n (%)] Treatment limited [n (%)] Brain death [n (%)] Life support withdrawn [n (%)] Stillborn [n (%)]	25 (35%) 21 (30%) 12 (17%) 10 (14%) 3 (4%)

Wish you had done.

Data on responses to what parents wished they had done were analyzed over the 4 time-points after the child’s death resulting in 10 themes for mothers’ data and 6 themes for fathers’ data (Table 2). Mothers provided a total of 215 responses. More than half of the mothers (51% to 61%) responded at each time point. Mothers’ responses to what they wished they had done were more varied across the 4 time-points than those for fathers. Themes with sample quotes are presented in Table 3. Wishing to have spent more time with the child (24%), having chosen a different treatment path (19%), advocated for care changes (17%) and allowed the child his/her wishes (10%) were the most frequent of the total responses from mothers. Other less frequent responses (5%) included changed doctors, being with the child when he/she died, took more pictures/videos, and wishes about actions after the death including burials, letting the siblings see the child and moving from the house where the child died.

Table 2.

Parents “Wish I had done around the Child’s Death”

Mothers (N=70)	2 months	4 months	6 months	13 months	Total
Spent more time with the child	8 (18%)	17 (27%)	7 (14%)	19 (34%)	51 (24%)
Chosen different treatment path	10 (22%)	6 (9%)	12 (24%)	13 (23%)	41 (19%)
Advocated care changes	9 (20%)	9 (14%)	11 (22%)	8 (14%)	37 (17%)
Allowed child his/her wishes	1 (2%)	14 (22%)	2 (4%)	5 (9%)	22 (10%)
Changed doctors	2 (4%)	7 (11%)	1 (2%)	1 (2%)	11(5%)
With child when he/she died	4 (9%)	4 (6%)	2 (4%)	1 (2%)	11 (5%)
Took more pictures/ videos/hair	4 (9%)	1 (2%)	6 (12%)	0	11 (5%)
After the death	2 (4%)	3 (5%)	4 (8%)	2 (4%)	11(5%)
Taken better care of self	3 (7%)	1 (9%)	3 (6%)	1 (2%)	8 (4%)
Other	2 (4%)	2 (2%)	2 (4%)	6 (11%)	12 (6%)
Total	45 (100%)	64 (100%)	50 (100%)	56 (100%)	215(100%)
# of mothers responding	37 (53%)	43 (61%)	37 (53%)	36 (51%)
Fathers (N=26)	2 months	4 months	6 months	13 months	Total
Spent more time with the child	9 (53%)	7 (54%)	4 (25%)	5 (42%)	25 (43%)
Gotten care earlier	4 (24%)	2 (15%)	4 (25%)	4 (33%)	14 (24%)
Different hospital/care site	2 (12%)	2 (15%)	2 (12.5%)	0	6 (10%)
Refused treatment, second opinion	1 (6%)	0	2 (12.5%)	2 (17%)	5 (9%)
Allowed child his wishes	0	1 (8%)	2 (12.5%)	1 (8%)	4 (7%)
Other	1 (6%)	1 (8%)	2 (12.5%)	0	4 (7%)
Total	17 (100%)	13 (100%)	16 (100%)	12 (100%)	58 (100%)
# of fathers responding	12 (46%)	11 (42%)	14 (54%)	11 (42%)

Table 3.

Parents “Wish I had done around the Child’s Death”

Mothers’ Responses
Themes	Sample quotes
Spent more time with the child	“held child more the day she died”
	“stayed with child longer after the death”
	“checked on daughter before she left to work”
	“spend more time taking him to places (trips, etc.)”
	“hugged and kissed child more” “talk to child more”
	“leave other children with her mother and stayed with daughter”
Chosen different treatment path	“waited to have surgery”
	“gotten a second opinion”
	“investigate other venues on child’s illness”
	“paid more attention to the fast talking that docs were doing”
	“transfer to a different hospital”
	“investigate side effects and alternatives before consenting”
	“took child out of hospital and put on medical marijuana”
Advocated care changes	“voiced concern about consistency with nurse”
	“talk to someone else to help advocate for her & child”
	“Ask the transplant doctor to keep him in the hospital longer”
	“asked one of the nurses not to come back because son would cry (nurse was too rough)”
	“been able to get hands on medical marijuana sooner”
	“voiced concern over things did not agree with”
Allowed child his/her wishes	“had him do his make-a-wish”
	“went to Disney”
	“taken another family trip”
	“allowed her to quit school/classes and enjoy herself more”
	“showed child more affection instead of insisting that she fought to survive”
	“to fulfill his dream to play in a band in Guatemala”
Fathers’ Responses
Spent more time with the child	“spend more time taking him to places (trips, etc.)”
	“go with her to beach, go bike riding”
	“spent more time with daughter”
	“been at hospital more to push staff to do more for child”
Gotten care earlier	“Knew where the closest hospital was”
	“dialed 911 sooner”
	“taken child to doctor sooner”
	“been more demanding to get to hospital sooner”
	“been more on-time to take mother to hospital”
	“not listen to her mother and taken child to doctor”
Different hospital/care site	“transferred to a different hospital”
	“have son taken to different hospital initially”.
Refused treatment, second opinion	“hadn’t given permission for surgery”
	“been more demanding of doctors—gotten a second opinion” “known it was head injury and not near drowning”

Fathers provided a total of 58 responses to what they wished they had done. The proportion of fathers responding at each time point was lower than that of the mothers ranging from 42% to 54%. Themes with sample quotes are presented in Table 3. Wishing to have spent more time with the child (43%), gotten care earlier (24%), having chosen a different hospital or care site (10%) and having refused treatment or gotten a second opinion were the most frequent of the total responses from fathers.

Wish you had not done.

What parents wished they had not done resulted in 7 themes for mothers’ data and 5 themes for fathers’ data. The number of both parents’ responses was lower for this question than for those about what they wished they had done (Table 4). Mothers provided a total of 104 responses. The proportion of mothers responding at each time point ranged from 27% at 4 months to 39% at 6 months. Themes with sample quotes are presented in Table 5. Wishing she had not agreed to child’s surgery/treatment (33%), not taken her own actions (indicating self-blame 29%), not left the hospital before the child died (13%), and not make the child do things he/she didn’t want to do or punished them (9%) were the most frequent of the total responses. Other less frequent responses (< 6%) included not taken the child to this hospital, and not been so frustrated with others.

Table 4.

Parents “Wish I had not done around the Child’s Death”

Mothers (N=70)	2 months	4 months	6 months	13 months	Total
Not agreed to surgery/treatment	7 (23%)	5 (29%)	9 (32%)	13 (46%)	34 (33%)
Not taken own actions (self-blame)	9 (29%)	7 (41%)	7 (25%)	7 (25%)	30 (29%)
Not left hospital before child died	5 (16%)	2 (12%)	3 (11%)	3 (11%)	13 (13%)
Not make child do things or punished	4 (13%)	0	4 (14%)	1 (4%)	9 (9%)
Not taken child to this hospital	3 (10%)	1 (6%)	1 (4%)	1 (4%)	6 (6%)
Not been so frustrated with others	2 (6%)	0	1 (4%)	1 (4%)	4 (4%)
Other	1 (3%)	2 (12%)	3 (11%)	2 (7%)	8 (8%)
Total	31 (100%)	17 (100%)	28 (100%)	28 (100%)	104 (100%)
# of mothers responding	24 (34%)	19 (27%)	27 (39%)	22 (31%)
Fathers (N=26)	2 months	4 months	6 months	13 months	Total
Not been so hard on child	2 (100%)	1 (25%)	2 (40%)	2 (29%)	7 (39%)
Not agreed with doctors and treatment	0	1 (25%)	2 (40%)	2 (29%)	5 (28%)
Not taken own actions (self-blame)	0	2 (50%)	1 (20%)	1 (14%)	4 (22%)
Worked too much	0	0	0	2 (29%)	2 (11%)
Total	2 (100%)	4 (100%)	5 (100%)	7 (100%)	18 (100%)
# of fathers responding	2 (8%)	4 (15%)	4 (15%)	7 (27%)

Table 5.

Parents “Wish I had not done around the Child’s Death”

Mothers’ Responses
Themes	Sample quotes
Not agreed to surgery/treatment	“brought him to the hospital 5 years ago and let the Dr. do something he shouldn’t have done”
	“agreed to open heart surgery”
	“allowed the blood transfusion”
	“certain procedures that we did during stay in PICU”
	“let son get on tube”
	“made child do bone marrow transplant”
	“taken child off life support”
Not taken own actions (self-blame)	“was away from the child when on drugs”
	“went on vacation (without the child)”
	“taken headache medicine while pregnant”
	“gotten in accident so couldn’t run when child first got hit”
Not left hospital before child died	“left the hospital when thought child was stable”
	“left the hospital when told to go home”
	“would have lived at hospital if knew child only had a year”
Not make child do things or punished	“couple weeks before he died, not done the diet and give him the food he wanted 2 weeks prior (to the death)”
	“pushed her too much to live normal life”
	“insisted that child did her homework”
Fathers’ Responses
Not been so hard on child	“pushed the child too much rather than being with me”
	“been too hard on him”
	“been so strict”
Not agreed with doctors and treatment	“put all the trust in the hospital”
	“listened to the doctors’ reassurance”
	“listened to doctors and think that everything could be okay like they said”
Not taken own actions (self-blame)	“got wife pregnant”
	“hesitated before calling 911”
	“poked him while in womb so child could kick him”
	“worked too much”

Fathers provided a total of 18 responses, ranging from a low of 8% at 2 months after the child’s death to a high of 27% at 13 months after the death. Themes with sample quotes are presented in Table 5. Wishing he had not been so hard on the child (39%), not agreed with doctors and treatment (28%), and wishing he had not done some actions (indicating self-blame 22%) were the most frequent of the total responses.

Coping with the child’s death.

Analysis of parents’ coping mechanisms after the child’s death resulted in 14 themes for mothers’ and 7 themes for fathers’ data (Table 6). Parent responses to this question were more numerous than responses to the wish I had and wish I had not questions. Mothers provided a total of 486 responses with the proportion of mothers responding ranging from a low of 71% at 1 month to a high of 84% at 6 months. Themes with sample quotes are presented in Table 7. Religious activities (20%), caring for self (16%), and talking about and with the deceased child (14%) were the most frequent of the mothers’ total responses. Responses representing less than 10% of the mothers’ responses included crying, honoring the child’s life, spending time with family and friends, not wanting to talk or think about the child’s death and several others.

Table 6.

Parents’ coping with the Child’s Death

Mothers (N=70)	2 months	4 months	6 months	13 months	Total
Religious activities	18 (16%)	24 (17%)	26 (21%)	28 (25%)	96 (20%)
Caring for self (activities, keeping busy, back to work)	14 (13%)	22 (16%)	24 (19%)	16 (14%)	76 (16%)
Talking about & with deceased child	14 (13%)	18 (13%)	18 (15%)	18 (16%)	68 (14%)
Cry	10 (9%)	12 (9%)	12 (10%)	9 (8%)	43 (9%)
Honor child’s life, look at pictures & videos, making a memorial	11 (10%)	11 (8%)	7 (6%)	11 (10%)	40 (8%)
Spend time family & friends	9 (8%)	21 (15%)	1 (1%)	4 (3.5%)	35 (7%)
Don’t talk or think about the death	7 (6%)	4 (3%)	9 (7%)	7 (6%)	27 (6%)
Visit cemetery	3 (3%)	5 (4%)	5 (4%)	5 (4%)	18 (4%)
Think positive & move forward	4 (3.5%)	3 (2%)	11 (9%)	0	18 (4%)
Think alone, alone time	8 (7%)	5 (4%)	2 (1.6%)	1 (1%)	16 (3%)
Drink, take medication	5 (4%)	5 (4%)	3 (2%)	2 (2%)	15 (3%)
Talk other parent, support groups	4 (3.5%)	4 (3%)	2 (1.6%)	5 (4%)	15 (3%)
Counseling	2 (2%)	4 (3%)	4 (3%)	4 (3.6%)	14 (3%)
Other	3 (3%)	0	0	2 (2%)	5 (1%)
Total	112 (9%)	138(100%)	124(100%)	112(100%)	486 (100%)
# of mothers responding	50 (71%)	58 (83%)	59 (84%)	51 (73%)
Fathers (N=26)	2 months	4 months	6 months	13 months	Total
Caring for self (activities, keeping busy, back to work)	12 (32%)	6 (23%)	13 (34%)	5 (21%)	36 (29%)
Religious activities	10 (26%)	5 (19%)	5 (13%)	6 (25%)	26 (21%)
Remember, honor child	6 (16%)	3 (12%)	5 (13%)	4 (17%)	18 (14%)
Spend time with family & friends	5 (13%)	6 (23%)	4 (11%)	2 (8%)	17 (13%)
Avoid talking, thinking about deceased child	3 (8%)	2 (8%)	6 (16%)	5 (21%)	16 (13%)
Cry	1 (3%)	3 (12%)	3 (8%)	2 (8%)	9 (7%)
Help others	1 (3%)	1 (4%)	2 (5%)	0	4 (3%)
Total	38 (100%)	26 (100%)	38 (100%)	24 (100%)	126 (100%)
# of fathers responding	20 (77%)	19 (73%)	21 (81%)	17 (65%)

Table 7.

Parents’ Coping with the Child’s Death

Mothers’ Responses
Themes	Sample quotes
Religious Activities	“go to church and find peace within” “pray to God to give strength”
	“talk to the Lord” “read the Bible and better communicate with God”
	“understand that God knows best”
	“kneel and ask God to help express horrible pain I feel”
	“call prayer friends and pastor and talk to them”
	“believe he is in God’s hands being taken care of”
Caring for herself	“sit by water; relax; shopping”
	“look at videos”
	“try to stay busy” “exercising more going to gym” “go for a walk”
	“try to do other things (play poker on phone to get mind off of it)”
Talking about and with the deceased child	“journal and write letters to (deceased) son”
	“sometimes still call hospital or think about doing it”
	“sleep with child’s clothes and toys” “go to child’s room, talk to her”
	“try to look at life through (deceased) daughter’s eyes”
	“pretend as if child is still there” “tell self, child is still around”
	“talk about him with family and with him as if he’s still here”
	“Include his name in conversations and say goodnight, etc.” “ask child to forgive her for not being able to save him”
	“ask child to forgive her for not being able to save him”
Fathers’ Responses
Caring for himself	“try to bury myself with anything and everything else”
	“go to work” “take a walk” “ride motorcycle”
	“go outside with my pigeons” “go bowling”
	“listen to music to relax because son used to listen to music”
Religious Activities	“going to church” “pray, get down to my knees and pray to God”
	“look for refuge in religion”
	“know he is with God - gives me peace”
	“he is with God - know it is much better where he is at”
	“know will see son again when time comes”
Remembering and honoring the child	“keep pictures on phone”
	“keep flowers on grave”
	“working on a foundation in his name” “made special garden for son”
	“light candles for child”
	“put flowers besides ashes”
	“buy holiday things for child”
Spending time with family and friends	“spending time taking care of siblings”
	“spending more time with family”
	“spend more time with other sons”
Avoiding talking or thinking about the deceased child	“don’t talk to anyone about it”
	“Nothing, try not to think about it”
	“try to deal with it on own”

Fathers provided a total of 126 responses with the proportion of fathers responding ranging from a high of 81% at 6 months to a low of 65% at 13 months. Themes with sample quotes are presented in Table 7. Fathers’ responses included caring for self (29%), religious activities (21%), remembering and honoring the child (14%), spending time with family and friends (13%) and avoiding talking or thinking about the deceased child (13%) as the most frequent of the total responses.

Discussion

The aim of this study was to examine what parents (Hispanic, Black and White) wished they had or had not done for their infant or child, and how they coped 2, 4, 6, and 13 months after their child’s NICU/PICU/ED death. Both mothers and fathers wished they had spent more time with their child and had not agreed to their child’s surgery/treatments. Most frequent coping was caring for themselves. We found these study findings are consistent with those of Cacciatore and team who reported parents feeling guilty for not having remained with the child in the hospital as well as our earlier research findings^15,22. The present study findings are also consistent with findings of Ross and colleagues who found parents’ coping included avoidance, looking after their mental and physical health and maintaining a continuing bond with the deceased child²¹.

Many of the present study findings are similar to our earlier study of wishes and coping of 104 parents who lost an infant or child in the NICU/PICU²². Data were collected at 1, 3, 6, and 13 months and 2–6 years after the death. In that study mothers wished most to have spent more time with the child, and chosen different treatment path, also the 2 top wishes of mothers in the present study. Fathers wished most to have spent more time with child, the top wish of fathers in the present study. Mothers in the present study wished they had not agreed to surgery or treatment, the second most frequent wish of mothers in the earlier research. In the previous study both mothers and fathers most used coping strategies were caring for themselves, findings consistent with fathers coping in the present study. Mothers in the present study reported religious activities as their most used coping strategy. Many of the themes in both studies are the same but different in parents’ response frequency. This may be due to differences in the parent samples. Parents in the previous study had more financial resources and fewer chronic health conditions at the time of the child’s death compared to parents in the present study.

Clinical Implications

All healthcare professionals must be sensitive to parents’ need for time with their infant or child before and after death. Relatively small changes to practice are essential for parents’ coping with their child’ death. Providing information on their child’s care and treatments in the parents’ preferred language at the level they understand is important; several repetitions may be needed to ensure the parents retained and understood the information¹. Encouraging parents to participate in the child’s care before the death and providing time after the death to be with their child is appreciated. Providing tangible keepsakes for the parents as well as individualized follow-up contacts by staff through the course of a year⁸ has been important to parents. Parents want to remember their child and the positive memories such as those who provided support during this time⁵. After the death, parents need support, mentally and physically. Healthcare professionals can provide referrals to parent support groups and information for the parents to help in monitoring their own mental and physical health. This is especially important in the first 6 months after the infant/child death when there is an increase in parent acute illnesses and exacerbations of their chronic conditions ^{23, 26, 27}.

Study Limitations

Transferability of these findings may be limited by the representation of this heavily minority sample, mostly mothers, high school or some college graduates, and partnered bereaved parents. It is not clear if findings would hold with a greater number of White parents, fathers, less educated, and single parent samples.