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. Author manuscript; available in PMC: 2024 Jun 1.
Published in final edited form as: J Child Health Care. 2021 Dec 30;27(2):300–315. doi: 10.1177/13674935211059041

The crossroads of parental decision making: intersections of hope, communication, relationships, and emotions

Amie Koch 1, Tara Albrecht 2, Arthi S Kozhumam 3, Heeyeon Son 4, Debra Brandon 5, Sharron L Docherty 6
PMCID: PMC10155486  NIHMSID: NIHMS1866744  PMID: 34967680

Abstract

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (mothers, fathers, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making despite changes in (a) relationships with providers and others, (b) emotions, and (c) communication. Both parents and professional health care providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

Keywords: Hope, communication, decision-making, parent, pediatric intensive care

Introduction

“Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all.” (Emily Dickinson, 1891)

Complex life-threatening chronic conditions (CLTCs) are defined as those that (a) can be expected to last at least 12 months (unless death intervenes) and (b) involve multiple organ systems (or one organ system that requires specialty care) as well as periods of hospitalization in tertiary care centers (Ananth et al., 2015; Feudtner et al., 2001). Children born with CLTCs receive highly complex and sometimes experimental treatments to cure their condition or to prolong life (Feudtner et al., 2014); however, these treatments have uncertain outcomes, and the children remain at high risk for death (Ananth et al., 2015; Bjur et al., 2019). These children often experience multiple health crises across the treatment trajectory, requiring parents and health care providers (hereafter providers) to make critical treatment-related decisions (Feudtner et al., 2010).

Parents of children with CLTCs must address unmet child health needs, lack of care coordination, challenging parent-provider communication, and psychosocial burdens of care (Bally et al., 2018; Berry et al., 2013; Berry et al., 2011; Kuo et al., 2011). Parents of children with CLTCs are decision makers and weigh risks and benefits of treatment against the physical, emotional, economic, and social effects on the child and family (Ahn and Lee, 2018). Although providers offer guidance, parental decisions are often made in a context of uncertainty, within extremely tight time frames, and under remarkable stress (DeCourcey et al., 2019). Information that typically helps parents make decisions, such as clear and reliable signs of treatment failure indicating the need to move to symptom-focused palliative care, is often unavailable. Lack of prognostic certainty for children with CLTCs exacerbates the challenges of decision making for providers and parents (Moynihan et al., 2021).

Researchers have studied idiosyncratic influences on parental decision making such as (a) parent and provider characteristics and relationships (including the presence of conflict and trust) (Lemmon et al., 2019), (b) parent distress (Miller et al., 2011), (c) spirituality (Hexem et al., 2011; Superdock et al., 2018), and (d) hope (Feudtner et al., 2010 & Kaye et al., 2020). Hope is a critical component of the psychosocial experiences of parents who confront complex and traumatic life transitions related to the care of a child with a life-limiting or life-threatening illness (Bally et al., 2014; Bally et al., 2018; Barrera et al., 2013; De Graves and Aranda, 2008; Klyma and Juvakka, 2007; Rallison and Raffin-Bouchal, 2013). Hope for their child’s recovery or healing allows some parents to cope with a grim prognosis; research has shown that parents may nurture hope for a miracle despite understanding that their child’s condition is grim, and despite the provider’s communication of a poor prognosis (Lemmon et al., 2019). Parental hope is one of the key factors that influences parental decision making for the child with CLTC.

To be understood, the influence of parental hope on parental decision making must be considered within the context of parents’ experiences of working with providers to determine treatment and care decisions for children with CLTCs; hope often manifests through communication and affects perceptions and interpretations of information obtained from discussions with providers. Parent-provider interactions may be impacted by undisclosed feelings about care decisions, hope, fear of destroying hope, or communication from others (i.e. relatives, religious or community members) related to unrealistic hope for survival. It is important to understand how interactions between providers and parents of a child with a CLTC influence communication of hope, parent-provider relationships, and impact parental decision making (Barrera et al., 2010; Feudtner et al., 2010; Szabat, 2020). The purpose of this study was to explore how parent and provider hope for a child with a CLTC influence decision making related to care. We discuss ways in which parent and provider hope intersects with communication, relationships, and emotions to affect decision making.

AIM

The aim of the study…..

We sought to answer the question “How does parent and provider hope influence parental decision making?”

Methods

Study Design

We used a qualitative descriptive design (Sandelowski, 2010) to analyze qualitative interview data collected in a large, prospective, longitudinal study of parent and provider decision making for infants with complex chronic conditions (Hill et al., 2019; Lemmon et al., 2019; Superdock et al., 2018).

Setting and Participants

The principal study used a multiple case study approach to study decision making for infants 24 months of age, or older, at enrollment who were receiving treatment at an academic medical center in the southeastern United States for one of three kinds of CLTCs: extreme prematurity (< 26 weeks-gestation), complex congenital heart disease, or genetic disorders requiring hematopoietic stem cell transplant. Each case included an infant, at least one parent, and at least three providers (e.g., physician, nurse, nurse practitioner, social worker). A total of 33 cases, including 33 infants, 61 parents, and 202 providers (n = 298) were followed for one year (unless death intervened).

In this paper our aim was to develop an in-depth description of the fundamental role that parent and provider hope played in parental decision making. We analyzed only data collected from parents and providers of infants with complex congenital heart disease (CCHD), such that this more homogenous sample might allow for the comparison of hope across a diagnostic group with similar contextual experiences (Patton, 2002; Polkinghorne, 2005). Our sample included 11 cases of infants with CCHD, consisting of 193 interviews from mothers, fathers, nurses, physicians, and nurse practitioners (n = 46).

Data Collection

This study, funded by the National Institute of Nursing Research, was approved, Protocol ID: Pro00002345, by the Institutional Review Board at the study site. Prior to the study, parents were approached by trained research assistants and fully informed about the study. Parents provided informed written consent to participate in the interviews as well as permission to conduct interviews with their child’s health care providers and perform a medical chart review. Enrollment of the infants with complex chronic conditions, prematurity, bone marrow transplant, and/or complex cardiac disease began at diagnosis or at birth (for those with a prenatal diagnosis). Data from each case included a series of one-on-one semi-structured interviews, field notes, questionnaires, and medical chart data collected across the infant’s illness trajectory. The data for this study were collected between 2008 and 2015. Data collection continued at least monthly until one year after enrollment (unless death intervened), as well as within one week of a life-threatening event or major change in treatment. Interviews, which were qualitative semi-structured, ranged in length from 30 to 90 minutes with most parent interviews lasting longer than one hour. Each interview included hope specific talk and question. Questions targeted parent and provider perceptions of previous or anticipated decisions, experience with caring for the infant, and how provision of care had been influenced by factors affecting decision making.

Data Analysis

A directed content analysis and thematic generation was performed on the interview data by a team of four analysts (Hsieh and Shannon, 2005; Miles et al., 2013). A text-based analysis software program, NVivo 12.6 Pro – QRS International, was used to assist in the organization of the data for coding and generation of categories and potential themes. An initial apriori codebook was organized by literature on parent and provider decision making and was inductively and iteratively refined based on information within the interviews on hope and decision making. The codebook and themes were defined, and study team members employed a consensus process to decide upon definitions of the themes and subthemes. All cases were discussed by all study team members, and discrepancies were resolved in consensus with the senior author. After coding, through a set of sequential analysis meetings, categories were generated and key themes and subthemes were developed to capture the content and language of hope and decision making. The four criteria of rigor (credibility, transferability, dependability, and confirmability) were ensured in this study (Elo & Kyngas, 2008; Hsieh & Shannon, 2005) by employing triangulation of data, peer examination, audit trail, and providing details in presenting study findings.

Findings

Descriptive Information

The original qualitative study included 33 participants with complex life-threatening conditions: Ten were premature infants (P), 11 had complex cardiac conditions (C), and 12 were participants with or requiring bone marrow transplant (BMT). We analyzed only data collected from parents and providers of infants with complex congenital heart disease (CCHD). Demographic information of all participants associated with the 11 cases of children who had CCHD (infant, parent, and providers) are presented in Table 1 through table 3.

Table 1.

Demographic of Parent Participants.

Characteristic Number (%)
Total Participants 19
Sex
 Male 9 (47)
 Female 10 (53)
Ethnicity
 Caucasian 8 (42.1)
 Hispanic 1(5.3)
 African American 8(42.1)
 Native American 2(10.5)
Average Age (SD) 32.2 (7.7)
Average Years of Education (SD) 14.7
Married
 yes 16 (84.2)
 No 3 (15.8)
a Religious Preference
 Christian 18 (94.7)
 Other 1 (5.3)
Income
 <$15,000 2(10.5)
 $15,000-$25,000 3(15.8)
 $26,000-$50,000 2(10.5)
 $51,000-$75,000 6(31.6)
 $76,000-$100,000 4(21.1)
 >$100,000 2(10.5)
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a

Five options were provided for demographic survey: Christian, Jewish, Muslim, Hindu, and Other (with option to specify a particular religion).“Christian” is broadly described to include any individual who self-identified as “Christian” based on their beliefs, denomination, or sect. The participant who answered religion of “Other” did not specify a particular religion but identified themselves as “spiritual” when interviewed

Table 3.

Demographic of providers

Variable Number (%)
Total Participants 77
Number of providers
 Attending physician 17 (22.1)
 Fellow 4 (5.2)
 Surgeon 5(5.2)
 Social worker 18 (23.4)
 NP 14(18.2)
 RN 19(24.7)
Provider age 36.7 (8.9)
 Attending physician 44.9 (7.2)
 Fellow 33.8 (3.9)
 Surgeon 47.4 (3.7)
 Social worker 33.7 (2.9)
 NP 36.2 (3.9)
 RN 30.3(10.7)
Provider Race
 Caucasian 65 (84.4)
 African American 7 (9.1)
 Asian 5 (6.5)
 Hispanic 0 (0.0)
 Native American 2(10.5)
Gender
 Male 27 (35.1)
 Female 50 (64.9)
Education
 Associate’s 1 (1.3)
 Bachelor’s 18 (23.4)
 Master’s 31 (40.3)
 Post-Master’s 1 (1.3)
 MD 26 (33.8)
 PhD/MD 0 (0.0)
Marital Status
 Married 55 (71.4)
 Single 17 (22.1)
 Separate/Divorced 5 (6.5)
Religion
 Christian 55 (71.4)
 other 22 (28.6)
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Overview of themes

We sought to answer the question “How does parent and provider hope influence parental decision making?” Through our analysis, we identified three core constructs: emotion, relationship, and communication as hope-related processes that influence decision making both independently and through synthesis. Each of these core constructs are described in detail as well as how they are interrelated.

Emotion

Emotion is described as “an affective aspect of consciousness,” a state of mind and feeling deriving from one’s circumstances, mood, and relationships with others (merriam-webster.com, n.d.). Hope was strongly reflected in emotions that were shared between parents and providers, but was specific to the experiences and circumstances of care for each child with CCHD.

Parent emotion

Parents’ expressions of emotions such as sorrow and grief, were used to indirectly communicate their hope. Positive emotions, such as confidence and trust in providers brought feelings of happiness and strong hope. Parents expressed hope that their child could return home to be with family and described the happiness that this would bring. Hope allowed parents to focus on decisions that might lead to discharge to the home setting,

My hope is for him to get the g-tube tomorrow; like this has been unrealistic, I think, but that’s my hope. We work over the weekend with him, and then go home Monday--that would be my hope. (Mother, case# 30)

However, parents simultaneously expressed strong negative emotions of fear, helplessness, loneliness, and isolation. These emotive expressions were used as a way to describe their diminishing hope. One mother of a child in the ICU described her fear by saying she felt as if “they were kidnapping my baby” (mother, case #30). Parents described feeling loneliness both in and out of the hospital that persisted over time. One mother reported feeling lonely due to a lack of a provider understanding of her situation: “If I ever had somebody to listen to who said the same thing I’m saying, maybe it would make me feel more comfortable with my situation” (mother, case # 31). Helplessness was also expressed by parents who, for example, wanted to provide care for their child (e.g., holding them or changing a diaper) but were unable to do so expressed feeling “completely helpless” (father, case #21). Parents wanted to give their child every possible chance for life and thus experienced sadness or disappointment when they felt pressure by providers to make decisions to possibly stop life sustaining treatment, such as continuing life support or not being provided the option for additional surgery. These parents believed that the additional medical intervention was the only hope for survival for their child. For example, father case #11 described, “Well they were saying she had, they had indicated to us that it would’ve been a great risk...if they had taken the chance to operate her”, and they did not operate and she died.

Provider emotion

Providers expressed a range of emotions linked to hope; some were heavily influenced by whether they could realistically support a parent’s hope for the child’s survival. For example, one nurse expressed guilt, regret, and sadness over interactions between providers and the parents of a terminally ill child:

The parents wanted to talk about how the baby was going to live, even if she doesn’t live very long . . . [but] every time the doctor came in . . . it was to talk about how she was going to die. (Nurse, case #11)

The same nurse expressed frustration with the situation that felt like they were providing more interventions that were not helping than were helping, as well as parents who struggled with the decision to withdraw care based on provider recommendations, “I just get frustrated, and sad, sad for the child… but I do feel sad for the family too” (nurse, case #11). An attending, case #11, revealed the emotion they felt and expressed when talking with parents with children with CLTC was usually that of being “emotionally flat when talking with families…and anger when they [parents] thought we were harping on the same topics over and over again which was withdrawal of support, coming off the ventilator, you know or her not surviving through this”.

These, often overwhelming emotions, appeared to impede parent and provider communication, which had an indirect impact on hope and the ability to make decisions. Sometimes the provider perceived that the parents’ emotions might impact their ability to fully understand the complexity of the child’s condition or make decisions. For example, one provider noted a mother’s fear after her child had endured months of surgeries and hospitalizations: “I think mom may be more overwhelmed than she’s leading on to. I think she was very, very scared but didn’t quite understand what she was scared about” (nurse, case #10).

Relationships

Building trusting relationships with providers helps parents to cope with stress and make decisions; while doing so it is important that parents and providers understand how emotion, particularly hope for the ill child, is affecting their relationship. Parent-provider relationships were strengthened by positive parent perceptions of provider communication; parents described positive relationships when providers spent time with them, listened to them, and offered sufficient information. Some parents described that trusting relationships with providers gave them hope and supported their decision making. A productive parent-provider relationship was more likely when parents perceived that the provider was willing to contribute time and effort to its development and used language that the parents could easily understand. Similarly, providers’ perceptions influenced their relationships and communication with parents. For example, some providers viewed parents as members of a parent-provider team trying to achieve the same goal, and this motivated them to develop a supportive relationship with them. As one provider (nurse practitioner, case #10) explained,

I feel like the parents are part of the team, and we take over as the team leaders in the ICU, but . . . we have to incorporate them as part of our team when they’re in the hospital and also give them the opportunity to learn what it is they need to do in a safe environment where we can help them.

While strong parent-provider relationships may enhance hope and communication, relationships that are not as strong can have the opposite effect. For example, some providers expressed perceptions of parents that did not take into account the emotional stress the parent was experiencing while their child was hospitalized with CCHD. One nurse, case #10, stated that it was a “luxury” for the parents to have their baby, who had a life threatening condition, in the intensive care unit (ICU) so the parent did not need to provide care for the child: “In the ICU, mom had the luxury of deciding that baby was in a safe place, but mom was not going to have that luxury when she was on the floor.” Weak parent-provider relationships often led to judgements about parents that were less than accurate and may have caused more emotional disconnect, less hope, and create more difficulty with shared-decision making.

Some providers perceived parents as unable to make decisions adequately, and their perception of parents’ capability affected their relationship with the parent and their involvement in decision making. A nurse from case #10 stated,

Mother focused on bilirubin, it wasn’t even the biggest problem, but that is what the mother focused on . . . [she wanted] to take the sunglasses off the baby to see its face. . . . [our] taking control and making those first few big decisions for the family was definitely needed. . . . I don’t know if mom actually grasped how important the Tetralogy of Fallot was, then what that would mean to have open heart surgery.

Above all, relationship between parents and providers affected their levels of hope, either causing distance or disagreement with low hope or more of a trusting connection with higher levels of hope. When parents perceived providers as having a lower level of hope, even if it was realistic, this perception tended to undermine their relationship with providers, as noted by mom of case #14,

They [the providers] would come up to us and start talking . . . and they were no longer talking about the future, like the next procedure . . . they were no longer talking about Glenn anymore; they were no longer talking about any kind of future. . . . even if they didn’t give the timeline, they weren’t talking like that.

Communication

Communication, the exchange of information, is essential for parent and provider decision making. Communication that was perceived as hopeful and truthful, had a positive effect on the development of a trusting relationship. Parents often perceived poor provider communication as an indication that providers did not have hope for their child, and this affected the parent-provider relationship.

Parent-provider communication

Communication was found to play a critical role in decision making for parents of children with CCHD and was integrally tied to hope. Parents described conversations with providers that left no room for hope or decisions, “The doctor’s giving me the worst case—’This is what needs to be done, there’s no in between’” (father, case #27). Parents described how providers would talk about the “grim prognosis”, the “hard road ahead” for their child, and even the child’s “shortened lifespan”. These instances of communication often left them feeling that they were alone in their hope for their child and this affected their ability to choose from among possible treatment options in an effort to protect their child. Parents did want to be told the gravity of their child’s health; however they also needed the providers to be hopeful with them. Parents were quick to perceive provider hopelessness during communications. Parents often felt that providers had given up hope when they stopped talking about future surgeries, transplant, or the child’s future:

When [the physicians] would do rounds, he [the provider] wasn’t as chit-chatty . . . he kind of removed himself . . . no talking about future goals. When we try to bring [the future] up, they’re like “not right now.” (Mother, case #14)

Parents acknowledged that their hope was enhanced by patterns of clear provider communication. When providers ended consultations with some level of hope, parents felt that the provider was communicating in a way that fostered their own hope. Some providers expressed that they had difficulty communicating with parents without diminishing hope and that avoiding communication or providing vague information was a strategy they used to spare parents any distress. Parents reported that this pattern of communication made them feel frustrated and created an impression that providers were concealing or intentionally depriving them of vital information. One mother, case #10, expressed, “I was frustrated ‘cause I wanted, I mean I’d rather know everything ahead of time but they said that they don’t like to tell pregnant women, they don’t like to worry them so they just don’t tell them”. This one-way, provider-centered, communication can have a profoundly negative effect on hope of the parent and also ultimately lack shared decision making about critical treatment choices.

Both parents and providers described communication of “sugarcoated” information. Providers reported that they used “sugarcoating” as an easy way to talk with parents because it provided them with more hopeful information. They felt that the practice of sugarcoating allowed them to give parents bad news in a gentler way and helped to protect parents’ feelings, “It’s a fine line to walk between being insensitive and being honest, being clear or using euphemisms which often cloud judgment” (nurse, case #6). However, parents expressed that sugarcoating communication did not increase their hope or support them in making difficult decisions. Some parents perceived that providers spoke with them only when they had positive information to share or that they overemphasized positive information and underemphasized important information that was negative. Many parents preferred direct and definitive communication from their provider to enhance their hope and ultimately support their decision making, “They were like trying to save face. I had to let them know . . . I’d rather you tell me like it is than to sugarcoat it” (mother, case #26).

Discussion

Previous research has documented that parent and provider decisions about health care treatment can be intimately influenced by personal perceptions and interpretations of information, communication, and parent empowerment (Uhl, 2013). These personal perceptions and resultant interpretations often lead to expressions of hope, a central component in the decision-making process (Sze et al., 2006). This paper described parent and provider perspectives on how hope for a child with the CLTC of CCHD influences decision making. We found the interplay among the processes related to emotions, relationships, and communication influenced hope and, in turn, the critical decisions made by parents of children with CLTC. These three processes have a dynamic relationship with hope in that they can be interrelated and synergistic. Emotions affected whether relationships became strong, weak, friendly, or distant. Emotions influenced the style, tone, length, and content of communications. Reciprocally, effective communication contributed to the formation of relationships, influenced trust and judgment, and ultimately affected relationship dynamics.

Parent Emotions and Provider Perceptions

Parent and provider emotions were linked to their ability to express and comfortably feel, or foster, hope for the child. Loneliness (both in and out of the hospital) was an emotion that participants expressed in the interviews. Loneliness has been shown to negatively affect hope (Holtslander and Duggleby, 2008). Parents felt alone in their hope when it was not normalized by the provider.

For parents of a child with a CLTC, experiences of lengthy and multiple hospitalizations can seem like a long roller-coaster ride (Lisanti, 2017). Providers may not recognize parental frustration with inadequate communication or regard parents’ behavioral manifestations of anger or skepticism as stemming from sadness, fear, and confusion. We found that providers formed opinions and judgments based on parents’ behavioral manifestations of emotions such as: withdrawal, yelling, questioning, and expressing anger, dissatisfaction, powerlessness, helplessness, worry, and sorrow. Providers’ judgments of parents appeared to influence their ability to communicate and build relationships with parents. In our study, both parents and providers discussed the direct link between emotions and their behavior. Importantly, we found that when opinions based on emotions became a basis for judgment, relationships and communication between providers and parents became less positive, and could impact the experienced hope and can impede shared decision-making.

The dimensions of hope for parents of seriously ill children vary over time (Hill, 2018). We found that hope similarly dwindles for providers when there is a limited realistic chance of survival or good quality of life. Clear, honest, and early communication can mitigate parental stress and confusion about their child’s condition (Solan, 2018). Parents in our study who indicated having strong relationships characterized by open communication with providers possessed a positive emotional grounding which allowed them to adjust their hopes for their child’s optimal future quality of life. While working with parents at end of life, providers may misinterpret sustained hope as refusal to accept reality, resulting in needless friction between patients, families, and clinicians (Kaye et al., 2020). It is critical that providers support realistic hope and empower parents of hospitalized children with CLTCs by engaging in nonjudgmental, honest, early communication. Utilizing palliative care clinicians, when available, could support patients, families, and providers with enhancing communication.

Connection and Involvement in Care

When families feel empowered to participate in their family member’s care, the quality of health care is enhanced (Mackie, 2019). We identified that acknowledging and exploring realistic hope, if not for survival then for an optimal quality of life, enhanced positive emotions for both parents and providers and strengthened their working relationships. Regularly scheduled provider-family meetings helped parents to develop trusting relationships with the health care team. Parents expressed positive emotions when the provider kept them informed, communicated frequently, and checked on them regularly; they expressed negative emotions when they felt that providers were not providing full or definitive information. Parents reported that rapid, unexpected changes in their child’s status often required that they become quickly informed about new procedures, providers, or health conditions. Their ability to make well-informed decisions was compromised if they could not rely on providers to offer timely and pertinent information of their own accord.

Desire for a Meaningful Relationship

The parent-provider relationship is multifactorial; factors such as structural barriers (i.e., rotating providers, lack of meeting space or time, unknown patient trajectory) and parent characteristics (i.e., education, medical insurance, age, availability of support) influence how providers communicate with parents and the amount of information they choose to share (Boland, 2019). Our findings confirmed that parents felt providers who communicated honestly and frequently, and established a connective relationship were expressing hope. When parents felt confused by a provider’s explanations, when informative meetings were infrequent, when providers only talked about the child dying, or when providers avoided interaction with parents, parent hope appeared to diminish, and parents reported feeling discouraged and alone. Parents of children with CLTCs benefit from (a) emotional support, (b) interaction with parents who have experienced similar situations, (c) trusting relationships with providers, and (d) practical support that allows them to devote attention to their own needs and to obligations beyond the care of their child (Bry, 2019). Providers can assist in connecting parents with other parents who have cared for children with CLTC, this may be in the form of a parent support group or on a more individual connection. To build relationships and enhance communication with families providers should utilize a trauma-informed approach when working with families, understanding that a family whose child is hospitalized may experience heightened emotions and require frequent information to make decisions (Segaric, 2015).

Engaging in Early and Honest Communication, Without Sugarcoating

Parents need to receive timely, full, and honest information to avoid fear, frustration, and feelings of helplessness (Ballantyne, 2017). In this study, parents expressed that they wanted providers to give information without “sugarcoating,” and to treat them as equal partners in care decisions. In our findings, parents reported having to be the person to coach, or prompt, providers to discuss difficult decisions. A concerning finding was that some parents felt that providers made specific decisions to address their child’s needs only after the parent had voiced concerns, and that these actions would not have occurred without their advocacy.

Providers have reported the need to balance providing hope with delivering a truthful prognosis (Sisk, 2018). We found that providers generally wanted to remain transparent and forthright with parents although some preferred to sugarcoat information, particularly when they were uncertain about expectations. We observed that some providers avoided in-depth communication due to lack of hope for survival or for a high quality of life for the patient. When parents express hope for a cure, or miracle, providers can foster a partnership by normalizing, acknowledging, and sharing the parent’s hope, even when there is a grim prognosis (Kaye et al., 2020). It is crucial that providers receive training to help them become comfortable with having difficult conversations, especially end-of-life care conversations (Brandon, 2007). We found that when providers communicated prognostication and quality-of-life expectations honestly and clearly, parents were able to retain some kind of hope while also having to participate in difficult decision making. When a parent expresses hope, providers can ask follow up questions, discuss what else the parent is hopeful for, and converse about the parent’s wishes, goals, and worries in order to build a trusting relationship (Kaye et al., 2020). Parents with whom providers failed to communicate or build a trusting relationship reported feeling devoid of hope.

Limitations

The data for this study were collected between 2008 and 2015. Although treatments for children with complex congenital heart disease have advanced since 2015, the needs of parents (to express emotions, develop trusting relationships, and receive open and clear communication) have not changed, and obstacles to addressing these needs remain. The experiences described by parents regarding decision making for their child with a CLTC remain germane given contemporary challenges in pediatric and neonatal settings, such as levels of care continuity, patient-caregiver ratios, and technology-focused care models.

Implications for Practice

In addition to emotional challenges, parents of children with CLTCs have challenges with parental identity and self-identity (Hulgaard, 2019). Parents reported experiencing disruptions in their education, employment, relationships, and personal care. Health care providers can empower parents by assessing their emotional well-being, refraining from assumptions and judgments about parental behavior, and viewing parents’ emotional responses as reactions to traumatic experiences (Adams, 2014). Providers who can assess parents’ emotional burdens and then, based on the parent’s emotions, can supportively react to them without judgment will provide hope and communication. A holistic understanding of the experiences and needs of parents of children with CLTCs can be achieved through active communication between providers and parents (Davies, 2017).

Providers who are also parents should realize that the experience of being a parent does not, in itself, allow them to understand or imagine the emotions of parents of children with illnesses, or create a trusting relationship with a parent. We found that regularly scheduled provider-family meetings helped to build trusting relationships. Strategies employed by providers that left parents feeling supported included: (a) care teams met their child’s complex needs, (b) parents were encouraged to participate in their child’s health care and team rounds, (c) parents helped develop care plans in the hospital’s electronic medical record that could be reviewed on readmission, (d) providers acknowledged and fostered hope, and (e) pictures/drawings were used to assist the parents understanding of their child’s condition. Further studies are needed regarding parent-provider relationships, communication, expectations, and support leading to decision making.

Conclusions

The parallel viewpoints of parents and providers highlight the importance of emotions, hope, and communication to building trusting parent-providers relationships and supporting productive decision making. Effective communication and regular meetings contributed to relationships that supported realistic hope and effective, shared decision making. We found that parents wanted to be involved in decision making; however, without honest, open, and timely communication, they were likely to experience anger, dissatisfaction, powerlessness, helplessness, worry, and sorrow. Provider judgments of parental behaviors may influence their communication and relationships with parents and can negatively affect appropriate decision making.

Table 2.

Demographic of infant participants

Variable Number (%)
Total Participants 11
Gender
 Male 6 (54.6)
 Female 5 (45.4)
Ethnicity
 Caucasian 5 (45.5)
 Hispanic 1(9.1)
 African American 4(36.4)
 Native American 1(9.1)
Average Age in weeks(SD) 38.2 (3.4)
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Acknowledgements

The authors acknowledge Donnalee Frega, PhD, RN for participating in technical editing of the manuscript.

Funding

Research reported in this manuscript was supported by the National Institute of Nursing Research of the National Institutes of Health under award number 1R01NR010548 01A1.

Footnotes

Declaration of conflicting interests

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Contributor Information

Amie Koch, Duke University School of Nursing; Nurse practitioner, community hospice and palliative, Transitions LifeCare and Lincoln Community Health Clinic, Durham, NC, USA..

Tara Albrecht, Duke University School of Nursing, Durham, NC, USA..

Arthi S. Kozhumam, Duke Global Health Institute, Durham, NC, USA..

Heeyeon Son, Duke University School of Nursing, Durham, NC, USA..

Debra Brandon, Duke University School of Nursing, Durham, NC, USA..

Sharron L. Docherty, Duke University School of Nursing, Durham, NC, USA..

References

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