Abstract
Context
Parents of a seriously ill child may have different concerns and hopes for their child and these concerns and hopes may change over time.
Objective
In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time.
Methods
84 parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. 32 parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into 9 domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately.
Results
The most common major problem and hope domains at baseline were Physical Body, Quality of Life, Future Health and Well-Being, and Medical Care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance.
Conclusions
Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Keywords: pediatrics, serious illness, parental concordance, problems, hopes, decision-making
When children are seriously ill, parents often confront daunting health care decisions.(1–4) Parents base their decisions on multiple factors, including recommendations from doctors, personal beliefs about what a good parent ought to do, personal values, beliefs about the child’s most urgent problems, and their hopes for their child’s future.(5–11) When two parents (or other adults responsible for medical decision-making for the child) are involved in a child’s care, the parents ideally make decisions in a collaborative manner both with clinicians and with each other(12–16).
While the degree to which parents and clinicians perceive a sick child’s situation in similar terms has been studied(17–22), less is known about the degree to which parents agree with each other. One study of parents of children with chronic health conditions found that parents agreed substantially about the severity of the child’s illness and the child’s unmet needs(18), while another study of parents of children with advanced cancer found that parents may differ regarding perceptions of the child’s quality of life and the importance of hope, anticipated quality of life, and prolonged survival when making hypothetical medical decisions.(23) A retrospective study of parents of children who died of cancer found that parental agreement on primary goals of care changed from diagnosis to end of life, and that lower levels of agreement were associated with higher levels of parental perception that the child had suffered.(24)
Since the lack of concordant perceptions between parents about a child’s medical problems and their hopes for the child can strain both the parental relationship and the decision-making process(23) – and that this strain might be modifiable – we sought to improve our understanding of how parents view their child’s serious illness. We previously reported on a cross sectional study of parents of children receiving palliative care services that found that parents showed higher levels of concordance on reported problems experienced by the child than on reported hopes for the child.(19)
In this study, we expanded our focus to include a broader range of parents whose children were seriously ill and sought to: 1) examine the prevalence of problems and hopes, 2) describe patterns of concordance between parents regarding major problems and hopes for their child, and 3) study how these patterns change over time, as this area has not been systematically examined. While one study of parents of children with difficult to treat cancer found that the parents’ hopes for their children changed over time as the children’s conditions changed(25), and a retrospective study found that parents reported different levels of concordance on treatment goals at diagnosis versus the end of life(24), no studies have examined whether concordance between parents on perceived major problems and hopes changes over time.
METHODS
Study Design and Participants
Participants were parents of seriously ill children in the Decision Making in Serious Pediatric Illness study, a mixed-method prospective cohort study on parental decision-making for children with serious illness conducted at The Children’s Hospital of Philadelphia (CHOP) from September 2010 to December 2014. The hospital’s Committee for the Protection of Human Subjects approved the protocol for this study.
Parents were defined as the adults who had primary decision-making responsibilities for the index patient, and included biological parents, adoptive or foster parents, and members of the extended family. Parents were eligible if their children were patients at CHOP; had been admitted to the Pediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU), Cardiac Intensive Care Unit (CICU), or had been referred to the Pediatric Advanced Care Team (PACT) for palliative care services; if the patient’s attending physician thought that the patient had a serious illness and the parents would likely have to make a major medical decision in the next 12 to 24 months; if their children were not able to make medical decisions due to age or impaired cognitive capacity; and if the parents spoke English. Most parental dyads consisted of a mother and a father, but 1 dyad included two mothers, 1 dyad included a mother and a grandmother, and 1 dyad included a mother and a step-mother. Parents were not eligible if the parents were deemed by the physician to be emotionally overwrought by the clinical situation, did not speak English, or had lost custody rights; or if the child had died, had been discharged, had experienced a non-accidental injury, or (to accommodate the longitudinal design of the study) if the physician thought the child might die within a month or less. Parents were asked to complete a one hour interview at baseline and a twenty minute interview at 24 months. Additional details about recruitment have been reported previously.(8)
Measures and Interviews
Parents were asked at baseline to report demographic data. Information about the complex chronic conditions (CCC) of the patients was obtained from medical records. As part of the interview at baseline and 24 months, parents spent ten minutes answering two open-ended questions: “Please think of 3 major problems that bother your child”, and “Please think of 3 major goals or hopes you have for your child.” Each parent was interviewed separately. The interviewer wrote down up to three problems and three hopes mentioned by each parent. Baseline interviews took place in person at the hospital. Follow-up interviews were conducted either in person or by phone. One author (KC) and one research assistant conducted all interviews.
Problem and Hope Domains and Coding
We used an emergent codebook approach as recommended by Creswell(26) to code the problems and hopes reported by parents. We started with 8 domains and definitions that had been used successfully to categorize problems and hopes reported by parents of palliative care patients in a previous study (19). After reviewing a sub-sample of the data, we updated the definitions and added an additional domain (Future Health and Well-Being) to capture future oriented statements made by parents in the current sample. All parent responses to the problems and hopes questions in the current sample were then coded into the 9 domains (see Text Box for domain definitions). We coded each problem and hope based only what was specifically stated by the parent, not what might be implied or assumed to happen as a consequence of the stated problem or hope. Although we asked parents to report 3 problems and three hopes, some statements could be coded into multiple domains (see Table 1 for examples of how problems and hopes from the current study were coded). Three authors (RF, PN, and KC) coded a sample of the interviews, met to review the criteria, and then coded the remainder of the sample. Coders agreed on 90% of the domains coded. Three authors (PN, KC, and DH) met and resolved all disagreements.
Text Box.
Problem and Hope Domain Definitions
| Domain | Definition |
|---|---|
| Miracle or Cure | Cure, experimental drug, or complete disappearance of the problem. |
| Length of Life | Length of life or making child’s life longer |
| Physical Body | Organ or part of the body getting better or healing. Specific sickness or problem with organ or part of body. Physical ability hindered because of condition (walking, eating, sight, etc.). General physical health. |
| Medical Care | Any logistical complication with medical care and support services being provided to the patient or family. Treatment plans, procedures, plan of care for child. |
| Medical Knowledge | Doubts or concern about treatment, care, child’s condition. Whether treatment will be successful. Desire for more information about child’s condition, treatment, or care. Confidence or doubts about medical decisions. |
| Suffering | Mentioning explicit parts of child’s condition that causes them pain |
| Quality of Life | Strength of family ties, finding friends, making friends, fitting in with peers. Communication and social skills. Desire to not be in hospital, hope for discharge. Child’s ability to have fun and enjoy doing things. Child’s ability to manage on their own and lead a normal life. Goal for child that affects child’s quality of life that does not fit into another domain (e.g. reading a book, walking, feeding, eating). Desire for child to experience feelings such as happiness, contentedness, peace. Being able to attend school and learn. |
| Meaning | God or higher being/power. Fulfillment in life, rewarding life, learning something about life from experience of illness. Child’s self-identity and confidence. Advocating for child. |
| Future Health and Well-Being | Concerns about future health, development problems, and achieving developmental milestones. |
Table 1:
Examples of Problem and Hope Domain Coding from Current Sample
| Examples from Current Sample | Miracle or Cure | Length of Life | Physical Body | Medical Care | Medical Knowledge | Suffering | Quality of Life | Meaning | Future Health and Well-Being |
|---|---|---|---|---|---|---|---|---|---|
| Problem: “If he can make a complete recovery from initial illness.” | X | X | |||||||
| Hope: “So my hope would be that the [drug] works, and does what I hope it does, and that she would not only stop getting worse, but that she would start getting better.” | X | X | X | ||||||
| Hope: “That he can live beyond 5 years.” | X | ||||||||
| Problem: “I guess the pulmonary hypertension.” | X | ||||||||
| Hope: “Chemo can keep tumor at bay until radiation treatment” | X | X | |||||||
| Problem: “Needs a liver transplant.” | X | X | |||||||
| Hope: “I really hope that when they take him off the ECMO machine that he’ll be able to breathe on his own and will sustain everything without the help of the machine.” | X | X | X | ||||||
| Problem: “Will her Gore-Tex patch hold? If that doesn’t hold, things will be bad.” | X | X | X |
Concordance Between Parents Regarding Problem and Hope Domains
The qualitative problems and hopes domain data were transformed into quantitative measures as recommended for mixed methods data in order to report the prevalence of domains endorsed by each parent. (27, 28) To assess the degree of concordance in each of the problem and hope domains, for each child we examined whether at least one parent had identified a given problem or hope domain, and then whether the other parent in that dyad had endorsed the same domain (calculated as a percentage, which we refer to as the concordance for that domain).
RESULTS
Of 200 parents of 158 patients who participated at baseline, 84 respondents were identified as dyads (that is, 42 parental dyads for 42 children) and were included in this study. Each dyad had at least one mother, but three dyads consisted of a mother and someone other than the father of the child. The other parent in these dyads was included in the fathers/others category. Table 2 reports demographic characteristics of patients and parents at baseline. Of the 42 parental dyads who completed the baseline interview, 16 dyads completed the 24-month interview, 15 dyads were lost to follow up, and 11 dyads did not participate in the 24-month interview because their child had died.
Table 2.
Demographic and Clinical Characteristics of 42 Children and 84 Parents at Baseline Interview
| Children | Alive at 24 months No. (%) | Deceased at 24 months No. (%) | |
| Age | 1 year or less | 24 (77%) | 8 (73%) |
| 1–4 y | 3 (10%) | 0 (0%) | |
| 5–9 y | 3 (10%) | 0 (0%) | |
| 10–17 y | 1 (3%) | 3 (27%) | |
| Sex | Female | 13 (42%) | 6 (55%) |
| Male | 18 (58%) | 5 (45%) | |
| Race | White | 27 (87%) | 8 (73%) |
| African American | 1 (3%) | 0 (0%) | |
| Asian American | 0 (0%) | 0 (0%) | |
| Multi-racial | 2 (6%) | 1 (9%) | |
| Other | 1 (3%) | 1 (9%) | |
| Did not answer | 0 (0%) | 1 (9%) | |
| Ethnicity | Hispanic | 4 (13%) | 1 (9%) |
| Non-Hispanic | 27 (87%) | 9 (82%) | |
| Did not answer | 0 (0%) | 1 (9%) | |
| Insurance | Private | 17 (55%) | 7 (64%) |
| Medicaid | 9 (29%) | 4 (36%) | |
| Private and Government Insurance | 3 (10%) | 0 (0%) | |
| Other government insurance | 2 (6%) | 0 (0%) | |
| Location | CICU | 10 (32%) | 1 (9%) |
| NICU | 12 (39%) | 5 (45%) | |
| PICU | 9 (29%) | 4 (36%) | |
| Oncology | 0 (0%) | 1 (9%) | |
| Condition | Metabolic | 4 (13%) | 2 (18%) |
| Neuromuscular | 11 (35%) | 5 (45%) | |
| Malignancy | 2 (6%) | 3 (27%) | |
| Congenital | 22 (71%) | 7 (70%) | |
| Respiratory | 15 (48%) | 7 (64%) | |
| Cardiovascular | 14 (45%) | 5 (45%) | |
| Renal | 3 (10%) | 0 (0%) | |
| Other | 5 (16%) | 2 (20%) | |
| Parents | Mothers n=42 N (%) | Fathers/Others n=42, N (%) | |
| Age | 21–34 years | 27 (64%) | 24 (57%) |
| 35–38 years | 5 (12%) | 7 (17%) | |
| 39–55 years | 10 (24%) | 11 (26%) | |
| Race | White | 35 (83%) | 35 (83%) |
| African American | 0 (0%) | 5 (12%) | |
| Asian American | 0 (0%) | 1 (2%) | |
| Multi-racial | 3 (7%) | 1 (2%) | |
| Other | 4 (10%) | 0 (0%) | |
| Ethnicity | Hispanic | 5 (12%) | 2 (5%) |
| Non-Hispanic | 36 (86%) | 39 (93%) | |
| Did not answer | 1 (2%) | 1 (2%) | |
| Marital status | Married/Partnered | 39 (93%) | 38 (90%) |
| Divorced/separated/widowed | 0 (0%) | 1 (2%) | |
| Single | 3 (7%) | 3 (7%) | |
| Education | High school or less | 5 (12%) | 6 (14%) |
| Some college or college graduate | 23 (43%) | 27 (64%) | |
| Some graduate school or graduate school | 14 (33%) | 9 (21%) | |
| Full time employment | 20 (48%) | 34 (81%) | |
| Financial hardship | 17 (41%) | 17 (41%) | |
We first report results for the parents whose children survived for the entire 24 month study period, as the parents whose children died during the study period may have been confronting different clinical situations and decisions. The prevalence and concordance of reported problems and hopes of the 62 parents (31 mothers and 31 fathers/others) who completed the baseline interview and whose children were still alive at 24 months are shown in Figure 1. The overall concordance between parents across all domains was 69% for problems and 61% for hopes.
Figure 1:
Prevalence and Concordance of problem and hope domains at baseline and 24 months for parents of children who survived.
Note: Overlapped marker represent the domains labelled above and below the overlapped markers, with the left-positioned marker unshifted while the right-positioned marker is shifted slightly. No parents endorsed the Problem domain Length of Life at either time point or Suffering at 24 months. No parents endorsed the hope domain Medical Knowledge at either time point or Suffering at 24 months.
The prevalence and concordance of reported problems and hopes of the 32 parents (16 mothers and 16 fathers/others) who participated in the 24-month interview are shown in Figure 1. The overall concordance between parents across all domains for 24-month problems was similar to baseline at 68% and overall concordance across all hope domains at 24 months was 70%.
The prevalence and concordance among the 22 parents (11 dyads) whose child died before the end of the 24-month study period are shown in Figure 2.
Figure 2 :
Problem and hope domain prevalence and concordance at baseline for parents of children who subsequently died.
Notes: Overlapped marker represent the domains labelled above and below the overlapped markers, with the left-positioned marker unshifted while the right-positioned marker is shifted slightly. No parents of children who later died endorsed the problem domain Miracle or Cure.
DISCUSSION
Consistent with our previous research (19), the most commonly reported parental problem domains differed from parental hope domains. At baseline, almost all parents were concerned about the child’s physical condition or illness, and were also likely to mention quality of life, medical care, and health in the future. Only a few parents mentioned problems related to medical knowledge about the child’s condition, suffering, or finding a cure. None mentioned problems specifically related to how long the child might live. Parental hopes were more likely than problems to be related to the child’s future health, the child having a meaningful life, and the possibility of cure. These results suggest that while parents are most concerned about their child’s physical health and medical care, clinicians should also consider discussing the child’s quality of life and future health to address parent hopes.
Concordance across all domains between parents at baseline was higher for problems than hopes. Parents were more likely to both mention and match each other on some problem and hope topics such as physical health and the child’s quality of life. Other topics (e.g. suffering) were raised by only a small number of parents but showed high concordance, suggesting that when issues like suffering are mentioned, they are likely to be perceived and prioritized by both parents. Some commonly cited domains (e.g. Future Health and Well-Being) had lower levels of concordance, suggesting differences in parental perceptions and priorities. While overall concordance between parents was high on most domains, clinicians should remember that even moderate levels of discordance could potentially lead to disagreements, misunderstandings, and loss of trust if one parent feels their concerns are not being addressed by the clinical team (29). If clinicians are asking parents to make decisions based on their hopes for the future or the child’s well-being, they may need to first encourage parents to talk to each other about these topics and give them time to reach a consensus.
At 24 months, parents reported different kinds of problems and hopes. Parents at this time point were still likely to mention problems and hopes related to the child’s physical health and to be concordant with each other, but parents were more likely than at baseline to mention and match with each other on problems and hopes related to their child’s quality of life and future. Parents also mentioned problems in fewer domains overall at 24 months, though this difference may have been due in part to the smaller number of parents interviewed. Overall these results suggest that over time, parents of children with serious illness are less likely to report concerns related to their knowledge about their child’s illness, and more likely to report concerns with the “bigger picture” of the child’s quality of life, including the child’s happiness, future, and ability to live as “normally” as possible. Our results are consistent with previous findings that hopes become more future oriented as a child’s condition improves.(25) As a patient improves over time, clinicians may wish to spend less time discussing specific symptoms and more time discussing what the parents’ can expect to happen in the future.
Interestingly, by 24 months parents showed about the same level of overall concordance on hopes and problems, suggesting that parent hopes may converge over time. Compared to baseline, concordance on some domains (e.g. Physical Body) was lower at 24 months for both problems and hopes while concordance on other domains (e.g. Quality of life) was higher for both problems and hopes, suggesting that parents were more likely to reach consensus over time on certain domains.
Parents of the 11 children who died prior to the 24-month interview showed striking differences from the other parents in their baseline hopes and problems. These parents expressed concerns about how long the child might survive, and in at least one case reported hoping that the child did not have to suffer longer than necessary. Parents of children who later died were also less likely to mention problems related to the child’s medical care and future health. These findings suggest that parents of children who later died were already aware at baseline that their child’s condition was serious and they were focusing less on long-term issues like future health and more on immediate or pressing issues such as survival.
Parents of children who later died showed higher concordance on hope domains than problem domains, which is opposite of the pattern found among the parents of children who survived. Parents of children who died also showed an all-or-nothing pattern for concordance; that is, either they showed high levels of concordance or there was almost no concordance at all. One possible explanation is that as children get sicker, parents arrive at one extreme or the other: reaching consensus or moving apart in their perceptions or priorities. When a child’s condition worsens, clinicians may need to be alert for signs of disagreement and conflict between parents. Another possibility is that there is a threshold point: once the child is sick enough, parents realize they must discuss difficult issues and reach consensus. Some parents of the children who later died may have already reached this threshold at the time of the baseline interview. These results should be interpreted with caution because of the small number of parents in this group, and because we do not know the patient’s stage of illness when they entered the study.
Clinicians working with parents of children with serious illness likely are already aware that parents may initially have different perspectives, especially regarding their hopes for their child, and this study confirms and further develops our understanding of this common clinical scenario.
If the child’s condition stabilizes, parents may become more concerned about potential broader or longer-term problems such as the child’s future happiness and wellbeing, and parents may converge on a common set of hopes. Conversely, if the child remains seriously ill or becomes even more ill, parents may well have different perspectives and be in either complete agreement or complete disagreement about their perceived problems and hopes.
ACKNOWLEDGMENTS
We thank all parents who participated in this study. We also thank Alison Parker, MA for her help in conducting interviews, Jennifer A. Faerber, PhD for help with initial data analyses, and Theodore E. Schall, MSW for his comments on the manuscript.
Funding: This work was supported by the National Institute of Nursing Research grant 1R01NR012026.
Abbreviations
- CHOP
The Children’s Hospital of Philadelphia
- CCC
complex chronic conditions
Footnotes
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