QOL indicates quality of life.
The interquartile range (IQR) of the scores (from the 25th to the 75th percentile of the score) is presented. The vertical line within each box indicates the median score; the horizontal lines extending from the boxes display the range to the upper and lower adjacent values (ie, values lying above the 75th percentile or below the 25th percentile by >150% of the IQR). The separate symbols depict outliers. QOL indicates quality of life.34
A, Child feels loved (n = 68). B, Child’s health (n = 58). C, Advocacy and informed decision making (n = 55). D, Spiritual well-being (n = 21). QOL indicates quality of life.
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Feudtner C, Walter JK, Faerber JA, et al. Good-Parent Beliefs of Parents of Seriously Ill Children. JAMA Pediatr. 2015;169(1):39–47. doi:10.1001/jamapediatrics.2014.2341
Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support.
To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes.
Design, Setting, and Participants
A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness.
Main Outcomes and Measures
Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.
The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.
Conclusions and Relevance
Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
According to a prevailing ethical consensus,1-4 making medical care decisions for children should unfold as a shared decision-making process between parents or guardians and clinicians5-7 and conform to the best interest standard (ie, the decision is focused on doing what is best for the child). Studies of parents of children with serious illness confirm that most parents desire to collaborate with clinicians in the decision-making process,8,9 and that they base their decisions on behalf of their ill child on several considerations, including medical information, values, and beliefs.10-13
How parents approach the process of medical decision making for an ill child and how they frame what they believe is in their child’s best interests may also be influenced by how parents perceive their role and duty as parents, which would serve as a heuristic or set of decision-making rules or guidelines.14 More specifically, what individuals believe they need to do to be a loving or good parent might shape how they view their duties to their child and how they aim to conduct themselves.15-17 In a qualitative study18 of parents of children with incurable cancer, the parents reported in interviews that, in their view, a good parent remains at the child’s side, shows the child that she or he is cherished, makes unselfish decisions in the child’s best interest, and advocates for the child with the facility’s staff. Such self-defined views may provide parents with orientation and goals for decision making while helping them grapple with feelings of personal accountability.19
A deeper understanding of how parents construct their personal sense of what being a good parent implies and how parents differ in this personal definition may help clinicians support parents who are confronting difficult decisions and guide future medical decision-support research. We therefore sought to quantitatively assess the relative importance that parents of children with serious illness place on various good-parent beliefs when making decisions about their child’s care and to describe the diversity of these views as well as identify groups of parents with similar good-parent priorities.
Participants were parents of children who completed baseline interviews for the Decision Making in Serious Pediatric Illness study, a prospective cohort study on parental decision making for children with life-threatening illness conducted at The Children’s Hospital of Philadelphia. Parents provided written informed consent and received modest financial compensation for participation. The hospital’s Committee for the Protection of Human Subjects approved the protocol.
Parents were defined as adults (including biological parents, adoptive parents, foster parents, and members of the extended family) who had primary decision-making responsibilities for the index patient. Parents were eligible if their children were patients at The Children’s Hospital of Philadelphia; if their children had been admitted to the pediatric intensive care unit, neonatal intensive care unit, or cardiac intensive care unit; if their children had been referred to the pediatric advanced care team for palliative care services; if the attending physician thought that the parents would likely have to make a major medical decision in the next 12 to 24 months; if the child was not able to make medical decisions owing to age or impaired cognitive capacity; and if the parents spoke English. Each parent was asked to identify the next most important parental adult in terms of making medical decisions for the patient, typically a spouse.
Parents were not eligible if they were deemed by the physician to be emotionally overwrought by the clinical situation, did not speak English, or had lost custody rights; and if the child had died, been discharged, or experienced a nonaccidental injury. Furthermore, parents were not eligible if the physician thought the child might die within a month or less (secondary to the longitudinal design of the study).
Parents were recruited after their identification as potential participants by attending physicians in the pediatric intensive care unit, neonatal intensive care unit, cardiac intensive care unit, and pediatric advanced care team. In total, 200 parents of 158 patients consented to participate and completed the baseline interview. These 200 parents included 42 parental couples (84 respondents) and 116 parental respondents who participated alone. All baseline interviews were done in person at the hospital while the child was an inpatient. One author (K.W.C.) and a research assistant conducted all 200 interviews.
We developed a set of good-parent attributes based on previous studies that interviewed parents of children with incurable cancer18 and parents of children receiving palliative care.18,19 The attributes were pilot tested and revised based on feedback from pediatric palliative care providers (including physicians, nurses, social workers, child life therapists, and chaplains) and a parent of a medically fragile child. The final 12 attributes used in the present study were (1) making sure my child feels loved, (2) focusing on my child’s health, (3) making informed medical care decisions, (4) advocating for my child with medical staff, (5) focusing on my child’s comfort, (6) focusing on my child’s quality of life, (7) putting my child’s needs above my own when making medical care decisions, (8) staying at my child’s side, (9) keeping a positive outlook, (10) focusing on my child having as long a life as possible, (11) focusing on my child’s spiritual well-being, and (12) keeping a realistic outlook.
We used a discrete-choice experiment to enable parents to choose good-parent belief attributes that they deem to be most and least important, ultimately resulting in rank ordering and ratings of all items. We did not use the more common approach of Likert-type rating scales owing to well-documented methodologic problems.20,21 Specifically, with Likert-type rating scale assessments, respondents can give many attributes a similar rating, resulting in poor discrimination regarding the relative importance of attributes, and consequently decreased validity of subsequent analyses of these ratings, such as latent class analysis.21 Discrete-choice experiments surmount these problems. Respondents are taken through a series of sets of attributes, and for each set they choose the most and least important attribute. In this way, across all of the sets (which are designed so that each attribute is shown an equal number of times and in a balanced set of combinations and permutations with the other attributes), the respondent’s rank ordering of attributes can be derived. In addition, using maximum difference scaling, we calculated a point value for each attribute. The scaling characteristics were assigned values so that the total number of points for all attributes was fixed at 100 and the number of points for different attributes reflected their importance relative to each other.20,22,23
The 12 good-parent beliefs were presented to the parents in paper and pen format in a discrete-choice experiment. Each of the 12 sets included 4 attributes on a single page, and respondents were asked to select the most important attribute (ie, the attribute with the highest priority for being a good parent) and the least important attribute in each set for a total of 24 choices.
The parents’ age, relationship (mother, father, or other), race, ethnicity, educational level, marital status, employment status, financial difficulties, and type of health insurance were obtained via the respondents’ self-report. The child’s race and ethnicity were also obtained via the respondents’ report; however, the child’s age, sex, resuscitation status, and involvement of the palliative care team were obtained via medical record review. The child’s diagnosis was classified according to an established complex chronic conditions coding scheme into 1 of the following 8 categories: cardiac, respiratory, genetic, neurologic, metabolic, malignant neoplasm, renal, and other.24,25 Parents also completed scales measuring positive and negative mood (Positive and Negative Affect Scale),26 hopefulness (Adult Dispositional Hope Scale),27 and hospital anxiety and depression (Hospital Anxiety and Depression Scale).28 Parents completed a scale regarding their preferred style of making medical decisions, ranging from making decisions by themselves to sharing decision making with physicians to delegating decision making to physicians.29
Maximum difference scaling and latent class analyses were conducted using Sawtooth software products (MaxDiff, version 6; SSI Web, version 7; and Latent Class, version 4.6.2). The additional software used was SAS, version 9.3 (SAS Institute Inc) and Stata, version 13.1 (StataCorp).
We determined the parental ratings and rankings of the good-parent attributes using MaxDiff, version 6, which applies multinomial logistic regression to estimate the probability of choosing each attribute (as best or worst) given the attributes shown in the set, transforming raw scores to a 0 to 100 scale.30 We then performed latent class analysis of the good-parent rating, as determined by MaxDiff, to identify an unobserved categorical latent class variable. This analysis enabled us to empirically identify groups of parents with similar good-parent beliefs and identify good-parent attributes that distinguish between groups. We examined solutions with 2 to 7 distinct classes and replicated each latent class solution 10 times beginning at random starting values. We considered the best solution to be parsimonious, to have classes with conceptual meaning, and to have the best fit (as indicated by the lowest Bayesian information criterion31 and adjusted Bayesian information criterion).32,33 Although the Bayesian information criterion and adjusted Bayesian information criterion were slightly better for the 5- and 7-group solutions, we chose the 4-group solution as providing the most conceptually coherent description of the parents’ preferences. We assigned parents to the latent class group for which they had the highest probability of membership.
Descriptive statistics for demographic, behavioral, and clinical characteristics for parents and children are presented for the full sample and by latent class group. To explore potential differences in characteristics across latent class groups, we created fit separate, univariate, multinomial logistic regression models for each respondent and child characteristic using a robust variance estimator to account for clustering of some parental responders as couples. All P values represent 2-sided hypothesis tests with a set significance level of .05.
We enrolled 200 parents after approaching 295 parents regarding potential participation (67.8% participation rate). The most common reasons offered for declining to participate included “just don’t want to” (25 [26.3% of nonparticipants]), “there is too much going on” (21 [22.1%]), and “don’t have enough time” (16 [16.8%]).
Most parental respondents (Table 1) were either mothers (68.0%) or fathers (30.0%), were self-reported as white (80.5%), were married or partnered (85.5%), and had health insurance (98.5%). Approximately half of the parents had graduated from college (53.5%) and had full-time employment (49.5%). The median age of the children was 6.5 months and most had a preexisting complex, chronic condition prior to enrollment in the study (76.5%) (Table 2).
Among all of the good-parent attributes (Figure 1), parents ranked making sure that my child feels loved (mean rating, 16.2; 95% CI, 15.2-17.2) as the most important, followed by focusing on my child’s health (mean rating, 13.3; 95% CI, 12.7-14.0) and making informed medical care decisions (mean rating, 12.7; 95% CI, 12.0-13.4). In comparison, focusing on my child’s spiritual well-being (mean rating, 3.1; 95% CI, 2.2-4.1) and keeping a realistic outlook (mean rating, 2.6; 95% CI, 2.2-2.9) were rated as the least important attributes, being less than one-fifth as likely to be chosen as the most important attribute, “making sure my child feels loved” (ie, mean ratings of 3.1 or 2.6 vs 16.2).
Although the mean good-parent attribute score provided an overall assessment of the relative importance of these attributes among all parents in the study, individual parents rated specific attributes differently, resulting in a broad distribution for many attributes (Figure 2).34 For example, making sure my child feels loved received a median rating of 18.3, yet had an interquartile range of ratings extending from 10.0 to 22.6. At the other end of the ranked attributes, child’s spiritual well-being had a median rating of 0.3, with an interquartile range from 0.03 to 1.7, but with 5% of parents rating this item in the range from 23.7 to 27.9, higher than all of the other attributes.
Using latent-class analysis to identify groups of parents with similar good-parent preferences, we identified 4 good-parent belief groups: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). For each group, the ranked preferences for good-parent attributes (Figure 3) revealed how these attributes define and differentiate each group. For instance, making sure my child feels loved was in the top 4 preferences for all groups but was the most preferred attribute in the child feels loved group by a wide margin. By contrast, the attribute child’s spiritual well-being was the top preference for the spiritual well-being group but was the least important attribute for all other good-parent belief groups.
We examined whether the 4 good-parent belief groups were associated with characteristics of either the parent respondent (Table 1) or the child (Table 2). Fathers were more likely to be in the child’s health group. This group also had the smallest percentage of college graduates, married or partnered couples, the lowest level of private health insurance, and the highest level of reported financial difficulties. The advocacy and informed group had the highest depression and anxiety scores, and the “spiritual well-being” group had the highest positive affect and lowest depression and anxiety scores. For the patients, Hispanics were more likely to be in the child’s health group. The child’s health group also had the largest proportion of patients with newly diagnosed complex conditions and the smallest proportion of patients with do-not-attempt-resuscitation orders. Members of the child feels loved group were the most likely to prefer shared medical decision making and the least likely to prefer to delegate decisions to physicians, but the spiritual well-being group members were the least likely to prefer making decisions by themselves.
Through conversations with the parents of children with serious illness, physicians, nurses, social workers, and other members of the health care team gain a general sense that these parents have deeply held, diverse beliefs about their principal duties to their children. These diversely self-defined beliefs regarding personal duty likely influence how a parent or provider interprets what is in the best interest of the child, therefore explaining why, at times, providers and parents are not aligned about what is in a child’s best interest. This misalignment may be interpreted by providers as an abdication of parental duty to protect a child from suffering, but it is in fact a prioritization of a different set of duties (eg, making sure that the child feels loved or ensuring the child’s health). Without an adequate understanding of the variation in parental senses of duties, providers may be inadequately prepared to understand parents’ decisions and help them prioritize their duties in light of an accurate prognosis. For families of children who have no further curative options, clinicians may be able to support parents in shifting from a previously held goal of cure to a new set of goals, perhaps regarding the child’s comfort, quality of life, or sense of feeling loved, by engaging them in discussion about what it means to be a good parent.35
This study refines and advances the commonplace knowledge regarding parents’ sense of duty, as reflected by their rating of 12 good-parent attributes, through the use of a discrete-choice experimental design and subsequent use of latent class analysis. Beyond determining for the entire sample of parents that the highest rated attributes were making sure that my child feels loved, focusing on my child’s health, and making informed medical care decisions, the study’s findings regarding the variation among parents in how they rate these 12 attributes underscore important differences among parents and indicate the personal nature of their definition of being a good parent. The distribution of ratings for any given attribute, and the corollary range among the parents of how these attributes were prioritized from most to least important, underscore a key point: there is no single right way to be a good parent to a child with a serious illness.
In examining the diverse ratings of the good-parent attributes, we identified 4 belief groups composed of parents with similar patterns of ratings (child feels loved, child’s health, advocacy and informed, and spiritual well-being) and found that certain demographic, psychological, and clinical characteristics appear to be associated with group membership. Specifically, the child’s health group included more parents who were unmarried, experiencing more financial difficulties, had less education, or had a child with a newly diagnosed complex chronic condition, suggesting that parents who have a child with a new diagnosis and are feeling overwhelmed may be more likely to focus on the immediate concrete aspects of their child’s health. By contrast, the spiritual well-being group included more parents who were married, financially stable, less depressed, experiencing less negative affect and more positive affect, or had higher levels of hopeful thinking, suggesting either that parents who are feeling less overwhelmed by their circumstances may focus more on spirituality or that a focus on spirituality promotes these psychological states.
Previous studies11,18 of good-parent beliefs have been conducted with parents of children with terminal cancer using open-ended interview questions and with parents of children receiving palliative care using semistructured interview questions,19 providing a grounding for the good-parent attributes used in the present study. A previous study36 implemented this discrete-choice methodology to assess 43 parents of patients in a pediatric intensive care unit. The findings of the study indicated that making informed medical decisions was rated as the most important attribute for fathers and for mothers who did not identify a decision-making partner; however, mothers who identified themselves as being a member of a couple rated focusing on the child’s health and putting child’s needs above my own as the most important attributes. The findings of the present study may differ owing to the greater size and diversity of our parent sample, and because we selected parents who were deemed likely to have to make a major medical decision for their children with serious illness within the next 12 to 24 months. With our larger sample, we were also able to identify, for what we believe to be the first time, the 4 patterns of parental preferences regarding the good-parent attributes.
The purpose of the present study was not to define what constitutes a good parent. The 12 attributes that we used in the discrete-choice experiment do not compose an exhaustive set of all attributes that a wide variety of parents may feel that they need to manifest to be a good parent. The findings reported in this article represent a step forward in studying these important beliefs; much more research needs to be done before we have an adequate understanding of good-parent beliefs. For instance, parents’ ratings of certain good-parent attributes may depend more on their child’s age or condition compared with their ratings for other attributes, so that as the child grows older or the medical condition changes, the parents’ ratings might change substantially. The nature and patterns of longitudinal change in good-parent beliefs is one of many aspects to investigate regarding the influence that these beliefs may have on the clinical care of some of our most seriously ill patients. Some evidence suggests that parents’ hopes or goals for seriously ill children change over time depending on how well the child is doing,37 and that parents may change their priorities over time regarding what being a good parent means to them.35
A more complete and nuanced understanding of good-parent beliefs may allow clinicians to provide more-effective decision support to parents of seriously ill children.38 Given the diversity of good-parent beliefs, clinicians should consider deepening the conversations that they have with parents by asking, “What do you feel you need to do to be a good parent to your child?” As the present study shows, the answer will likely reveal several distinct beliefs. Clinicians could then focus on the individual parent’s answer, discussing how the clinical team can support the parent’s specific aspirations, providing affirmative praise and compassionate reassurance when parents express fears that they may be failing to be, on the terms they have defined, a good parent. Furthermore, since parents may embrace a set of duties that point in different and potentially incompatible directions regarding the best plan of care, clinicians can become more aware of the tensions that parents feel while attempting to live up to apparently conflicting obligations, and then partner with parents to sort through and consider the various duties that they feel should guide their conduct. This form of dialogue can build better rapport between clinicians and parents and enable clinicians to frame difficult medical care choices in ways that are more pertinent and resonant to the challenges that parents confront not only in providing what is in their child’s best interests but also in being, in their own judgment, a good parent to their ill child.
Accepted for Publication: August 26, 2014.
Corresponding Author: Chris Feudtner, MD, PhD, MPH, Department of Pediatrics, 3535 Market St, Room 1523, The Children’s Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA 19104 (firstname.lastname@example.org).
Published Online: November 24, 2014. doi:10.1001/jamapediatrics.2014.2341.
Author Contributions: Dr Feudtner had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Feudtner, Morrison, Munson, Kang, Hinds.
Acquisition, analysis, or interpretation of data: Feudtner, Walter, Faerber, Hill, Carroll, Mollen, Miller, Hinds.
Drafting of the manuscript: Feudtner, Faerber, Hill, Carroll, Hinds.
Critical revision of the manuscript for important intellectual content: Feudtner, Walter, Faerber, Hill, Mollen, Miller, Morrison, Munson, Kang, Hinds.
Statistical analysis: Faerber.
Obtained funding: Feudtner, Hinds.
Administrative, technical, or material support: Walter, Hill, Carroll.
Study supervision: Feudtner, Kang.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported by the National Institute of Nursing Research grant 1R01NR012026.
Role of the Funder/Sponsor: The National Institute of Nursing had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: The study team thanks the many patients and parents who participated in this study.