Role of Social Workers in Family Conferences for Critically Ill Infants

Abstract

Background:

Communication challenges in the neonatal intensive care unit include fragmented communication, challenges managing expectations amidst uncertainty, and navigating complex medical information. Social workers are well suited to mitigate these challenges.

Objective:

In this study, we aimed to characterize the extent and nature of social worker participation in family conferences for critically ill infants.

Design:

We used a longitudinal observational mixed-methods design, enrolling infants with a neurological condition, their parent(s), and their clinicians. All audio-recorded conferences were transcribed and de-identified. Emergent themes and subthemes were identified using conventional content analysis.

Results:

We enrolled 40 infants and 61 parents. Sixty-eight conferences were held and audio recorded for 24 infants. Social workers were present for 51 of these conferences (n = 51/68, 75%) across 18 cases (n = 18/24, 75%). We identified four themes, conceptualized as distinct roles played by social workers in family conferences: (1) Translator: social workers served as a communicative bridge between parents and the medical team; (2) Coordinator: social workers simplified logistics and connected parents to community resources, including home health agencies and financial assistance; (3) Expectation manager: social workers provided anticipatory guidance and helped parents conceptualize the remainder of the hospital stay, discharge, and life at home; and (4) Advocate: social workers validated parental values and concerns and provided immediate emotional support.

Conclusions:

Social workers participated in three-quarters of family conferences for critically ill infants. When they participated, they facilitated communication, coordinated care, managed expectations, and advocated for families. These findings underscore the important, varied, and concurrent roles social workers play in the care of critically ill infants. Future communication and family support interventions should leverage these distinct roles.

Introduction

Parents of critically ill neonates are at high risk of psychosocial distress and unmet communication needs.^1–4 Social workers are uniquely qualified to provide parent psychosocial support, improve parent–clinician communication, and advocate for parent needs.⁵ Social workers receive interdisciplinary training centered in a biopsychosocial systems approach; this training uniquely prepares them to help parents integrate various individual and environmental forces that shape a family's narrative.⁵ These skills equip social workers to mitigate the emotional suffering of families and promote collaborative decision making.

Adult critical care literature demonstrates that social workers provide direct emotional support to families and help families navigate through decision-making processes. Social workers in adult context also connect families to community resources, help families plan for discharge, and serve as liaisons between families and other professionals.^6,7 The neonatal intensive care unit (NICU) setting differs in important ways from adult critical care settings. Parents face unique challenges with navigating care plans and understanding uncertain prognoses. Most parents have limited experience caring for a child with medical complexity. Lack of data, clinical heterogeneity, and neuroplasticity often contribute to challenges in the estimation and communication of prognosis.⁸ Parents cite prognostic uncertainty and trouble understanding the impact of illness on their family life as key sources of distress.^9,10 Social workers, whose training and experience position them uniquely to support parents amidst uncertainty and transition, may be uniquely suited to mitigate common communication challenges that occur in the NICU setting.

Family conferences are one communication venue in which parents and clinicians discuss an infant's clinical status and the goals of infant care.^11,12 Existing data from neonatal and pediatric critical care settings suggest that social workers are often present for these major conversations between the medical team and family; however, the degree and nature of their participation is variable.¹³ In one study of family conferences in the pediatric intensive care unit, social workers were present for nearly all family conferences, yet engaged in dialogue infrequently.¹⁴

Data from the NICU setting suggest that family conferences often focus heavily on biomedical information, whereas parents appreciate attention to psychosocial needs, the impact of illness on family life, and added support around uncertainty.^9,10,15,16 Social workers are positioned well to meet these communication needs. To design and implement interventions to optimize social worker communication requires an understanding of the nature, degree, and quality of social worker participation in communication encounters in current practice.

Improving parent–clinician communication in the NICU relies on an interdisciplinary approach that leverages the unique roles of each team member. Understanding existing contributions from social workers in communication encounters is necessary to inform models of care and interventions to support both parents and the health care team. In this study, the authors aimed to characterize the extent and nature of social worker participation in family conferences for critically ill infants.

Materials and Methods

Study design and participants

This study employed a longitudinal observational mixed-methods design, enrolling infants with a neurological condition, their parent(s), and their clinicians. Inclusion criteria for infants were age <1, presence of a neurological condition, and planned conversation about neurological prognosis or goals of care. Parent inclusion criteria included age >18 and the ability to read and speak English. Parents completed baseline surveys, including demographic information. Family conferences were audio recorded as they occurred. Infant characteristics were collected through chart review. All cases that included at least one family conference were included in this analysis. This study was approved by the Duke University Health System Institutional Review Board.

Codebook development

A team of multidisciplinary researchers reviewed literature relevant to communication in neonatal and pediatric critical care and the roles of social worker in health care settings. In the absence of an established framework for social worker communication in the NICU setting, the team developed a novel codebook to identify the content and nature of social worker dialogue in family conferences. Two qualitative research analysts independently pilot tested the codebook across a randomly selected subset of family conferences. Differences in code application were reviewed to ensure consistency. The research team met regularly to achieve consensus, iteratively refining the codebook to improve credibility, dependability, and confirmability. Conference discussion topics were categorized using a similar methodological approach.

Analysis

All audio-recorded conferences were professionally transcribed and de-identified. Conferences that contained social workers as participants were included for further analysis. Emergent themes and subthemes were identified using a conventional content analysis approach. Two study team members (S.F. and S.B.) and the senior author (M.E.L.) iteratively developed and refined the codebook; this codebook was pilot tested by two independent coders (S.F. and S.B.). All social worker utterances were independently coded by two team members. The research team met regularly to resolve differences and achieve consensus, with final adjudication by the senior author (M.E.L.).

Results

Case and conference characteristics

Forty infants and 61 parents were enrolled; 68 conferences were held and audio recorded for 24 infants (Table 1). Social workers were present for 51 of these conferences (n = 51/68, 75%) across 18 cases (Table 2). Conference discussion topics included patient status updates, prognostic discussion, decision making, and discharge planning. Conferences lasted for median of 45 minutes (range 15–83 minutes).

Table 1.

Infant and Parent Characteristics

Characteristic	Median (range) or n (%)
Infant characteristics (n = 18)
Gestational age at birth, week	33 (23–40)
Sex
Female	9 (50)
Medical conditions
Prematurity	10 (56)
Seizures	8 (44)
Intraventricular hemorrhage	5 (28)
Congenital heart disease	4 (22)
HIE	4 (22)
Parent characteristics (n = 29)
Age, years	30 (19–43)
Gender
Female	16 (55)
Male	11 (38)
Other/not reported	2 (7)
Race and ethnicity
White	11 (38)
African American	17 (59)
Asian	2 (7)
Hispanic/Latinx	2 (7)
Other/not reported	1 (3)
Level of education
Less than high school	3 (10)
High school/GED	8 (28)
Some college	7 (24)
Bachelor's degree	5 (17)
Associate's degree	1 (3)
Graduate or professional degree	5 (17)
Annual household income
<$25,000	10 (34)
$25,000–$34,999	6 (21)
$35,000–$49,999	4 (14)
$100,000–$149,000	3 (10)
$150,000 or more	5 (17)
Other/not reported	1 (3)
Previous involvement in family member's ICU care	9 (31)

GED; general educational development; HIE, hypoxic ischemic encephalopathy; ICU, intensive care unit.

Table 2.

Meeting Characteristics

Characteristic	Median (range) or n (%)
Meeting characteristics (n = 51)
Number of meetings per case	4 (1–8)
Meeting length, minutes	45 (15–83)
Family members
Mom present	51 (100)
Dad present	33 (65)
Family members present	14 (27)
Total family members present	2 (1–7)
Team members
Clinician type present
Neonatology	45 (88)
Neurology	26 (51)
Palliative care	31 (61)
Other specialists	17 (33)
Medical student	8 (16)
Unit staff present
Bedside nurse	15 (29)
Social work	51 (100)
Physical, occupational, and/or speech therapy	6 (12)
Total team members present	6 (3–10)

We identified four primary themes, conceptualized as distinct roles played by social workers in family conferences: (1) Translator: social workers served as a communicative bridge between parents and medical team; (2) Coordinator: social workers simplified logistics and connected parents to community resources, such as home health agencies, durable medical equipment (DME) companies, and financial assistance; (3) Expectation manager: social workers helped parents conceptualize the remainder of the hospital stay, discharge, and life at home; and (4) Advocate: social workers validated parental values and concerns and provided immediate emotional support. Representative quotations can be found in Table 3.

Table 3.

Representative Quotations

Translator

“And that's why Dr. [name] was saying that that pager number that you'll be given, that's a perfect example of a reason why you would use that. Say like, his G-tube came out, I'm not sure what to do and so say, Dr. [name] is on call, she'll say, okay, you grab all the stuff and I'm gonna call the ED, let them know you're on your way and then they can replace it down in the ER.” (Case 29, Conference 1)  “And one thing I think I heard you guys say too is and maybe wanting the team to comment on, since I might not be an expert, but this fear that he's kind of like, in the hole and so we have sort of this time to make up.” (Case 11, Conference 3)

Expectation manager

“And she'll recover here for a little bit and then she may go back to special care, she may stay up here. But I just wanted to give you a heads up that she will come back to the ICN.” (Case 28, Conference 2)  “So, before you go, so by the time she's ready to go home, once the home health companies become involved, it will actually be the vent that she's gonna go home with. It will be the feeding pump that she'll go home with, so that's what they'll teach you on and then she'll stay on that.” (Case 20, Conference 2)

Care coordinator

“I hear we're going to back and forth, but it sounds the next step is, let's get that telephone number to the doctors who are caring for your son, so we can reach out with them and have conversations with them.” (Case 31, Conference 4)  “And so, as we move forward, I know that when the baby was on the upfront team, you had meetings, kind of every Wednesday at twelve-thirty, so now that she's on the TCN team, is that something that, moving forward, that still makes sense for you and that seems reasonable for the providers as well?” (Case 21, Conference 4)

Supporter

“Cause his comfort is important. And I heard, when you were talking about that, that's why I brought it up, that it was distressing for you.” (Case 33, Conference 2)  “And so, I hope you can kind of remind yourself of that like, you know, that is nothing but a good thing. And [name] loves you regardless, and [name] is gonna be okay too. And it's complicated. It gets really messy, and so thank you for bringing it up. I think it makes a lot of sense, and I know you're here as much as you possibly can and things happen, you know.” (Case 21, Conference 6)

Of the meetings where social workers were present, the social worker spoke in all but three meetings (n = 48/51, 94%). Social workers contributed a minority of dialogue in most meetings. On average, unit social workers contributed 10% of dialogue per meeting (range 0%–41%). Four meetings included a social worker embedded within the palliative care team. In meetings where this social worker was present, they contributed, on average, 6% of dialogue per meeting (range 1%–14%). Nearly every meeting in which social workers spoke (n = 47/48, 98%) included two or more themes. In more than half (n = 27/48, 56%) of conferences, all four themes were represented. Taken together, these findings highlight that social workers played multiple concurrent roles within individual conferences a majority of the time (Fig. 1).

FIG. 1.

Presence of social worker role in family conferences.

Translator: Serving as a communicative bridge between parents and the medical team

Social workers frequently simplified complex information for parents. When other clinicians used complex jargon, social workers often repeated or rephrased information in words that were more digestible. For example, when members of the medical team tried to explain how the infant's clinical features correlated with those of certain medical conditions, the social worker summarized this complicated medical information for the parent, saying, “I think what we're saying is he has some characteristics of hydranencephaly, but additional things that look more like anencephaly.” (Case 31, Conference 5).

Social workers also clarified, summarized, and restated parent statements to the clinical team. In many conferences, this communication behavior took the form of restating parent concerns or values. In a family conference for an infant with severe hypoxic ischemic encephalopathy and poor prognosis, the social worker outlined the parents' anxiety regarding a possible gastronomy tube placement: “[The parents] were worried about another surgery for (name). Seeing where we are today is very different from where he was prior to heart surgery. And so I think that's a really very real fear for them, is him going under anesthesia again and having another procedure.” (Case 5, Conference 1).

Coordinator: Helping parents navigate the health care system and connecting parents to resources

Social workers provided immediate and important coordination within family conferences: liaising among all providers, parents, and external support, such as home health agencies, DME companies, and hospice providers. At the end of a discharge planning conference involving a premature infant with severe ventriculomegaly, the social worker wrapped up the conversation, stating, “I've emailed OT, PT, and speech and then compiled this in one universal document that we can bring to each of these conferences to know exactly where [the] car seat is, exactly where the kid cart is, so that if everyone can't be here in any given week, we have this thing, so that we don't lose steam.” (Case 20, Conference 3).

Social workers also helped parents and clinicians understand health care coverage and financial resources available to help reduce the strain of an extensive NICU stay. This discussion included specific explanations of Medicaid coverage or recommendations of how to access resources. Social workers also often initiated scheduling discussions and created space for parents to offer their preferences for how often to meet with the team. They frequently prompted discussion of future conferences and conversations with clinicians.

Expectation manager: Helping parents conceptualize the remainder of the medical course

Social workers often helped families and clinicians manage expectations; this discussion included anticipatory guidance detailing the remainder of the hospital stay, what the discharge process entailed, and how to integrate outpatient care and therapies into their lives at home. Regardless of time point on the illness trajectory, this dialogue often included general descriptions of typical hospital stays and transitions to home postdischarge, as well as advice catered to families' specific circumstances. For example, during a conference for a child with infantile spasms, a social worker used the experience of other NICU families to help parents conceptualize their own plan to be present for their child's feedings: “I think it might be that we decide on a plan, whomever it's gonna be, and it can be all the people [in your family]…One grandparent had a six pm feed, one grandparent had a six am feed, that you guys tailor [to] your team… We need to put as many people on deck to be here for as many feeds as possible.” (Case 11, Conference 2).

In a conference for an infant with a severe neuromuscular disease, the social worker helped parents understand their own level of involvement in their child's medical care postdischarge by setting expectations for the amount of nursing support they would receive at home: “We will get nursing [for home], but it's not a guarantee. Typically in the very beginning, it might be twenty-four hours a day, but then it drops down pretty quickly because their goal is you're providing the care; they're being a support.” (Case 26, Conference 4).

Supporter: Validating parental values and concerns

In the majority of conferences, social workers provided emotional support to parents, frequently reminding them to practice self-care while also caring for their critically ill child. Similarly, social workers identified emergent parent values and emotional responses. This role also involved prompting parents to share or expand upon a given worry or concern. In the final family conference for an infant with Trisomy 18, the social worker asked the infant's mother, “what other worries do you have about going home? You mentioned you don't want her to be in any pain.” This question allowed the infant's mother to explain to the medical team the source of distress, sharing “probably her being at home and then she passe[s], I don't want her to pass. At the end of days, I want stuff that I can't have.” (Case 13, Conference 3).

Other utterances coded under this theme were expressions of affirmation and validation for persevering during the chaotic and evolving NICU experience. In the final conference of a long hospital stay for a premature infant with related neurological complications, the social worker ended the conference with parental praise: “I just want to acknowledge you guys for rolling with the punches here… I praise you guys for being open to conversations that are hard to have because they're your sweet [children] and it's hard to consent for a surgery because surgeries are tough…Your experience and your openness is just further proof that they picked really great parents and they're lucky to have you.” (Case 7, Conference 7).

Discussion

In this study of family conferences between parents of critically ill infants and their clinicians, social workers were present for the majority of meetings and contributed only a minority of dialogue. Despite contributing a minority of discussion content, social workers leveraged their speaking time to play critical, multidimensional roles to support both parents and interdisciplinary members of the care team. In serving the roles of translator, coordinator, expectation manager, and supporter, social workers can help mitigate common communication challenges in the NICU setting. Clinicians and researchers can leverage the diverse roles played by social workers to inform clinical care, research priorities, and intervention development.

Clinicians should ensure that social workers are present for and have structured opportunities to speak within family conferences. Tools to structure family conferences have been developed for adult intensive care, hospice, and palliative care settings.¹⁷ The use of a family meeting planner, as has been developed in the adult intensive care unit setting, can help standardize meeting attendees and ensure social workers are proactively included.¹⁸ Family meeting templates have been used in other settings to help ensure key content is addressed; our findings suggest that the adaptation of such templates to the NICU setting should include opportunities for social worker engagement.

Our results suggest that family conferences could benefit from required structured social work involvement in which social workers were empowered to engage with families in distinct roles.^16,19–22 In some units, staffing limitations may limit the feasibility of including social workers in major conversations between the family and health care team. Our results suggest that investing in this key member of the interdisciplinary team can help meet parent communication needs.

Social workers are uniquely positioned to help parents with key issues, such as transitions home, managing uncertainty, and emotional distress. The roles identified here, especially that of expectation manager and translator, are uniquely suited to meet these needs of NICU parents. Prognostic uncertainty is often a source of acute and long-term distress for parents of critically ill children.¹⁰ Many parents struggle to envision what day-to-day life may look like upon discharge, and how they will adapt their lives to accommodate a child with medical needs.⁹ Existing data also suggest that parents experience challenges as a result of fragmented, complex communication.²³

Within our cohort, social workers frequently simplified both complex medical information for parents and parent perspectives for providers. Social workers enable families in the critical care setting to make more informed medical decisions, and help families process complicated and distressing medical information.^22,24–27 These roles complement and extend beyond the scope of other professionals on the health care team, including case management. Offering social workers a more established opportunity to set parental expectations before discharge could help promote parent well-being and self-efficacy.

Our findings suggest individual social workers are managing multiple varied roles in a given communication encounter. The current literature shows mixed findings regarding whether or not this taking on of multiple roles by social workers hinders or promotes optimal care. Some suggest that the interdisciplinary nature of the social work position is a strength, enabling families to have a main point of contact whom they can rely on for a variety of needs as they navigate care.^5,28,29 Yet, other studies have found that social workers in the NICU experience burnout and often cannot provide adequate emotional support to families in the face of high caseloads and family needs.^6,7 Future study should evaluate the sustainability of social workers' current roles within the NICU environment and how to best support social workers in their position.

This study was conducted at a single level IV NICU in the United States and cannot be generalized to other health care contexts. The absence of video recording limits our ability to characterize important nonverbal communication. Social workers deliver care in a variety of settings and formats; this analysis does not include the breadth of communication delivered and is limited to communication in family conferences.

Conclusions

Despite contributing a minority of discussion content, social workers leveraged their speaking time to play critical multidimensional roles to support both parents and interdisciplinary members of the care team. Clinicians and researchers can leverage the diverse roles played by social workers to inform clinical care, research priorities, and intervention development.

Social workers are integral members of family conferences, often serving key roles as supporter, coordinator, and guide. Social workers help teams and parents set and manage expectations, a key challenge in neonatal intensive care. These findings highlight the important role of social work in the care of critically ill infants. Future studies should explore strategies to improve engagement of social workers during family conferences and the impact of social work involvement on communication quality and the parent experience.

Authors' Contributions

All authors made substantial contributions to the conception or design of this article, including the acquisition, analysis, or interpretation of data; drafted or revised it critically for important intellectual content; gave final approval of this draft to be published; and agreed to be accountable for all aspects of the article.

Funding Information

This study was supported by the National Institute of Neurological Disorders and Stroke (K23NS116453) and the Doris Duke Charitable Foundation.

Author Disclosure Statement

The authors have indicated they have no financial relationship relevant to this article to disclose.