A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center

Abstract

Objective –

Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers’ perceptions of what constitutes high-quality care at a complex care center.

Methods –

We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children’s hospital. In-depth, semi-structured interviews focused on caregivers’ general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework.

Results –

We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described two major themes: 1) the value of having a clinician “quarterback” who is in-charge of their child’s care and caregivers’ go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to “go above and beyond” for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs.

Conclusion –

Family caregivers of CMC want clinicians who take responsibility for managing their child’s overall care and demonstrate personal commitment to ensuring their child’s well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers’ perceptions of high-quality complex care.

INTRODUCTION

Children with medical complexity (CMC) have chronic and severe health conditions, extensive health service needs, and major functional limitations.¹ Despite high rates of poor health outcomes, CMC often receive inadequate support from pediatric health care systems, with family caregivers arranging and providing much of their child’s medical care.^2,3

To help address the service needs of CMC, national pediatric organizations have endorsed the medical home model.^4,5 An increasingly common approach to implementing the medical home for CMC are pediatric “complex care centers,” which are typically situated in children’s hospitals and offer enhanced care coordination.⁶ At our institution (a quaternary pediatric hospital), a complex care center was established in 2017 and is the only pediatric medical home focused on CMC in western Pennsylvania. This clinic offers both primary and consultative outpatient care, with a focus on care coordination, and serves ~600 CMC. At the time of this study, the clinical team consisted of 4 physicians, 1 nurse practitioner, 1 registered nurse, 2 care coordinators, and an administrative assistant.

Although a body of evidence supports the efficacy of complex care centers, the specific features and services driving these gains are unclear as centers vary significantly (e.g., team composition).^7,8 Even less is known about how family caregivers of CMC view such programs. Understanding family stakeholders’ experiences and beliefs is necessary to ensure future refinements of complex care centers are child- and family-centered.⁹

To address this knowledge gap, we utilized semi-structured interviews to elicit caregivers’ positive and negative experiences at a children’s hospital-based complex care center. We sought to better understand family caregivers’ perspectives about our complex care center and identify aspects of the pediatric medical home which foster perceptions of high-quality care.

METHODS

We conducted qualitative analysis of in-depth, semi-structured interviews between April 2019 and May 2020. The Institutional Review Board at the University of Pittsburgh approved all study procedures.

Participants were family caregivers of children receiving routine medical care at an academic pediatric hospital’s Complex Care Center (C3) located in Pittsburgh, Pennsylvania. Children are eligible to establish care at C3 if they have a high-level of medical complexity, defined as experiencing three or more chronic health conditions (requiring subspecialty care) and medical technology utilization (e.g., gastrostomy tube). To be eligible for the study, a caregiver’s child had to have an established relationship with C3 (≥3 months and ≥2 appointments since child’s initial appointment) and an outpatient appointment within 3 months prior to the interview. Caregivers had to have medical decision-making authority for their child and able to complete interviews in English. To reduce the impact of power differentials between the interviewer and participants, we excluded caregivers whose child had previously received clinical care from the interviewer (a pediatric palliative care physician who does not provide care through C3).

We reviewed C3’s outpatient schedule weekly to screen for eligible participants. Once eligibility was confirmed, we obtained permission to approach caregivers from the C3 medical director. A C3 clinician then obtained approval from eligible caregivers for the research team to approach. Caregivers received additional details about the study either in-person or through follow-up phone calls, based on caregiver preference. All caregivers provided written consent prior to participating and received a $35 gift card as compensation for their time. For participants informed via telephone, we required they return a signed consent form prior to conducting interviews. We used purposive sampling to recruit participants whose children experienced cardiovascular, neuromuscular, and/or congenital/genetic health conditions – the organ systems most commonly affecting CMC.^10,11 As we aimed to elicit the views of the primary family caregiver and maximize diversity of experiences, we conducted one interview per family unit.

Using standards for the conduction and reporting of qualitative research, we iteratively developed an in-depth, semi-structured interview guide informed by studies ascertaining caregivers’ perceptions of high-quality care in other clinical settings.^12–15 Interviews began broadly by examining participants’ general experiences interacting with the complex care center. Questions then focused on caregivers’ specific experiences related to the core domains of the American Academy of Pediatrics’ (AAP) definition of the patient/family-centered medical home: accessibility, family-centeredness, continuity, comprehensiveness, coordination, and compassion.^4,16 Additionally, we asked participants to provide recommendations on how to improve C3’s care of CMC. Questions were open-ended and non-leading, with follow-up probes used to elicit more detailed descriptions of individual experiences (full interview guide available from the author by request). Interviews were followed by a brief demographic survey. A single investigator (JY) with training in pediatrics, palliative care, and clinical research conducted all interviews privately, either in-person or through telephone, based on participant preference. Interviews were audio recorded, transcribed verbatim, and conducted until no new themes emerged from additional interviews (thematic saturation).¹⁷

We conducted thematic analysis using a mixed inductive and deductive approach.¹⁸ A preliminary codebook was inductively developed through line-by-line coding of an initial subset of transcripts. We then organized codes using the American Academy of Pediatrics’ medical home framework.⁴ A multidisciplinary team with expertise in palliative care, general pediatrics, pediatric medical complexity, rehabilitative medicine, pediatric oncology, pediatric nursing, and qualitative research compared and refined concepts and codes using constant comparative methodology. During this iterative process of comparison and refinement, the multidisciplinary team also discussed and refined emergent overarching themes. Two investigators then independently applied the final coding structure to a subset of transcribed interviews (75%) using recursive cycles of coding and in-person comparison in which disagreements were resolved through discussion and consensus. As inter-coder agreement was high (Krippendorf’s α >0.95), one investigator (JY) individually coded the final set of transcripts (25%).¹⁹ ATLAS.ti Software (V 8.4.24 Berlin, Germany) facilitated data storage, coding, and analysis. Lastly, we applied our results to the medical home framework to create a conceptual model of the relationship between specific components of the medical home and CMC family caregivers’ perspectives of high-quality care at a pediatric complex care center.^4,16

RESULTS

Of 65 eligible caregivers presenting to C3 during the study period whom we received permission to approach, we informed 40 caregivers (19 missed due to scheduling conflicts; unable to reach 6 via telephone) and 35 consented to participate (enrollment rate 87.5%) (Figure 1). Among consenting caregivers, we completed 20 interviews (thematic saturation reached at 15 interviews). Interviews lasted an average of 43 minutes (range 24–70 minutes). Participants were predominantly white (95%), female (95%), biological parents (90%), and married (75%) (Table 1). For comparison, C3’s overall patient population is 75% white, 20% Black/African American, and 5% identify as Other (less than 1% identify as Hispanic and/or are Spanish-speaking). Our sample also had a larger proportion of caregivers with children ages 5 years or younger. Whereas 55% of participants’ children were 5 years or younger, the proportion of C3’s patient population younger than 6 years is ~25%. Participants’ children experienced chronic health conditions most commonly affecting the neurologic/neuromuscular, gastrointestinal, and respiratory organ systems. All participants cared for children utilizing medical technology.

Figure 1.

Enrollment Flow Chart.

Table 1.

Participant Demographics and Child Clinical Characteristics (N=20)

Participant Characteristics	Number (%)
Relationship to Child
Biological Parent	18 (90.0)
Adoptive Parent	1 (5.0)
Grandparent	1 (5.0)
Caregiver Age (mean [SD])	39 (11.7)
Caregiver Gender
Female	19 (95.0)
Male	1 (5.0)
Caregiver Race
White	19 (95.0)
Other	1 (5.0)
Caregiver Marital Status
Married	15 (75.0)
Single	5 (25.0)
Child Age (mean [SD])	6.1 (5.2)
0–5 years	11 (55.0)
6–11 years	4 (20.0)
≥12 years	5 (25.0)
Child Sex
Female	7 (35.0)
Male	13 (65.0)
Child Primary Insurance Coverage Type
Public (Medical Assistance)	9 (45.0)
Commercial Only	1 (5.0)
Commercial (Primary) & Public (Secondary)	10 (50.0)
No. Adults in Household
1	2 (10.0)
2	15 (75.0)
≥3	3 (15.0)
No. other Children in Household
0	8 (40.0)
1	5 (25.0)
≥2	7 (35.0)
Years as Primary Caregiver (mean [SD])	5.8 (4.9)
Receives Home Nursing
Yes	14 (70.0)
No	6 (30.0)
Child Medical Technology Assistance	20 (100)
Child Chronic Conditions
Neurologic/Neuromuscular	19 (95.0)
Cardiovascular	9 (45.0)
Respiratory	14 (70.0)
Renal/Genitourinary	8 (40.0)
Gastrointestinal	19 (95.0)
Congenital/Genetic	17 (85.0)
Hematologic/Immunologic	7 (35.0)
Metabolic	9 (45.0)
Malignancy/Transplant	0 (0)

Abbreviations: SD, standard deviation; No., number

Two overarching themes emerged in caregivers’ description of high-quality care through a pediatric complex care center: 1) the value of having a “quarterback” in charge of their child’s care who is caregivers’ go-to for questions or concerns, and 2) working with clinicians who are willing to go “above and beyond” and personally invested in a child’s well-being. The term “quarterback” refers to the player position in the sport of American football whose primary role is to direct and lead the offensive team’s on-field play.

For each theme, we discuss how elements of the medical home framework enable complex care clinicians to live up to these ideals. Our conceptual model (Figure 2) illustrates the relationship between (1) aspects of comprehensiveness, continuity, accessibility, and care coordination with the “quarterback” role, and (2) how compassion and family-centeredness contribute to perceptions of clinicians’ “going above and beyond.”

Figure 2.

Relationship between CMC Family Caregivers’ Views of High-Quality Complex Care and the Pediatric Medical Home.

Theme 1 - Caregivers of CMC value having a “quarterback” in charge of their child’s care who is their go-to for any questions or concerns.

All participants (n=20/20) expressed their desire to have a single clinician (physician, nurse practitioner) in charge of their child’s care, with several participants labelling the complex care clinician as their child’s “quarterback.” As one participant said, their CMC clinician decides, “what plays we put in place so that all the players [i.e., nurse, care coordinator, subspecialist] are working together… to get my son across the finish line.” Caregivers described their quarterback as the trusted voice they turn to for any questions or concerns. One mother stated, “Sometimes I’m not sure who to call. Issues arise out of nowhere that we’ve never had a problem with before, so having just one number to call makes all the difference.”

Participants highlighted specific aspects of the medical home framework which support clinicians in serving as their child’s quarterback (Table 2).

Table 2.

Relationships between the Medical Home Framework and Caregivers’ Perceptions of Complex Care Clinicians as their Child’s “Quarterback.”

Medical Home Domains	Representative Quotes
Comprehensiveness	[My child’s care] is not just like a puzzle piece that you click it together, it’s more like spaghetti where everything is all intertwined, and you can’t just separate and piecemeal out…You have GI. You have urology. You have pulmonology. You have ENT. You have all these different specialists, but really GI plays into this role, plays into that role, and so I feel like, you know, it’s better to get that all together, and to have somebody that kind of can oversee … the umbrella of it, to go, ‘Okay, well great, this is how we can piece all these things together, what works best for this kid.’ One parent describing her child’s most recent appointment: We had notes that we needed to ask and they [C3] had their list. They went through every specialty for [Child] and made sure we were hitting everything. I appreciated that because it wasn’t like me having to remember, ‘Oh, I wanted to talk about pulmonology!’
Knowledgeable about CMC-related issues (CMCspecific sub-domain)	It definitely provides the best experience because they’re so used to managing kids with those needs or those issues whereas a local pediatrician, I mean, they know about it, but like how many kids do they manage with that?... it’s just nice to have somebody who really gets it and who deals with every day. And who sees it all the time... Having a child with complex needs, we spend a lot of time with doctors, and a lot of those appointments are wasted time because they are not fully educated on a wide range of medical needs, where I find that [Clinician] knows a lot about a lot of different issues, so she’s able to point us in the direction of a doctor that would have the same level of investment as she does…
Continuity	It truly has been life altering for me to be able to just pick up the phone and call one clinic. Not just to help me coordinate things, but to be able to call one clinic and get [Child’s] provider, someone who knows everything about him, someone who does step back and looks at the whole picture, not just one aspect of the picture that is my son… They ask me the hard questions. So they’re able to take an extra step back and have you think about things I might not have thought about.
Accessibility	When I call Complex Care, they already know him. They know his case. They know what new meds he’s on. They know what meds we discontinued. They know upcoming appointments and the procedures we just had… When I’m calling on-call, it’s a critical time. I don’t have time to go over all of that. Knowing that you have that ability to call a clinic and your child’s doctor is going to call you back that same day is…it takes a weight off of you. It allows you…truly, it allows you to breathe a sigh of relief. That I can call here, they’re going to call me back, and I don’t have to sit with this—this unknown, this what do I do next? Do I wait for them to call? Do I go to the ER? You don’t have to sit with that. And that as a parent, you cannot—there are no words to describe that—what that gives you, especially the parent of a complex kid.
Care Coordination	I wasn’t really getting things resolved, it wasn’t working. There were too many pieces in the puzzle, it’s not like I can coordinate a group email to several doctors. So when I went to complex care... they emailed all the specific doctors, got everybody on the same page. I ended up getting a personal phone call from my [child’s] ENT to address my specific concerns. And Complex Care takes that lead and they do all that organization for me, and it has been such weight lifted, because then I’m not worrying about…or second guessing myself, “Did I contact this clinic? Did I remember to reply back to this clinic?” They’re able to do that for me. And as a parent not having to worry about that allows me time with my son that I would normally be on the phone trying to contact everybody to make sure everybody’s on the same page.

Comprehensiveness & Continuity

Interviewees described the importance of the clinician quarterback understanding all of a child’s unique health issues and grasping the broader clinical picture. As one participant expressed, “[Clinician] helps to make sure everything is being looked at in the big picture. It’s sort of the central nucleus of everything. They ensure that every [subspecialist] is looked at, so I feel that we have one place where the full spectrum is available.” Over time, this fosters a clinical and relational familiarity enabling clinicians to provide recommendations which make sense in the context of their child’s overall condition. One mother remarked about the decision-making process for her child’s tracheostomy, “I never feel like we’re just adding something on. It’s really a group decision. [Clinician] really considered how these changes look for our family very carefully.”

Many participants (n=15/20) also discussed the value of working with clinicians knowledgeable about CMC-specific issues. Multiple caregivers described prior encounters with pediatricians who were not comfortable providing medical advice. As one parent recalled, “they were too nervous to answer me and kept telling me to call Children’s [Hospital].” Participants also explained clinicians without CMC expertise often do not take their concerns seriously, “A regular pediatrician would maybe dismiss symptoms that [child] was having… which could create a major health issue for [child]. So, I appreciate them taking everything seriously and not saying it’s just another headache.”

Accessibility

As CMC can “[go] downhill really fast,” the majority of participants (n=18/20) also referenced their ability to quickly and directly communicate with their child’s quarterback, at all times of the day. Prompt responses from clinicians, who already know their child’s history and care plan, were essential to avoiding unnecessary emergency department visits and preventing life-threatening decompensations. As one parent stated, “When I’m calling after hours, it’s „OK, do I need to take my son into the ER or not?’… It’s not something I can wait until the next business day to find out.”

Care Coordination

Every participant (n=20/20) praised their child’s quarterback for assuming the responsibility of keeping their child’s entire health care team, particularly medical subspecialists, up-to-date and on the same page. In this regard, participants believed their child’s quarterback could often better advocate than themselves. Participants reported other clinicians were more likely to follow-through with a care plan, especially if it conflicts with a subspecialist’s recommendation, when explained by the child’s quarterback. Recounting an experience in which their quarterback mediated a mother’s disagreement with a subspecialist, “I think it probably went easier because it was coming from a fellow provider than coming from a parent.” Another participant, a former hospital case manager, summarized:

“[It is a] very daunting task to, as I like to put it, try to get everybody to play nice in the sandbox. That is not an easy thing to do with two doctors, let alone, I believe we see 13 or 14 [specialists]. Because of how rare he is, everybody needs to be on the same page. Needs to be consulted when we start a new med, when we are doing a procedure, whatever it may be, everybody has to be in agreement.”

Theme 2 – Caregivers of CMC want clinicians who are willing to go “above and beyond” and personally invested in their child.

Every participant (n=20/20) valued clinicians “going above and beyond” normal expectations to ensure their child’s health and well-being. Caregivers recalled experiences in which CMC clinicians were “willing to take that extra step,” such as accompanying caregivers to subspecialists’ appointments or repeatedly calling insurance providers. One mother summed up, “As a parent, you don’t go to school or know all the stuff, so you rely on [Clinician]. So you need someone you can trust to go above and beyond… like you would for your child.”

Facets of the medical home model were closely associated with participants’ discussions of this theme as well (Table 3).

Table 3.

Qualities of Clinicians who “Go Above and Beyond”

Examples of “going above and beyond”	A mother discussing the support she received in seeking a second opinion: That [clinician] was saying she was for it and, ‘let’s do it,’ and that they were willing to set everything up for [outside institution]... I felt like I wasn’t going in there alone – that I’m not gonna do it by myself and I have [clinician] behind me. They not only made a recommendation for a neurologist, but also met with us and the new neurologist for our first [appointment]. [Clinician] came in and made sure that I was asking the right questions and receiving answers… and then [Clinician] was even able to ask the neurologist if she felt that there was anything physically that could be contributing to his neurological issues.
Medical Home Domains	Representative Quotes
Compassion	They’re just so interested and compassionate about her progress and how we feel about her care. They care about—I feel like they care about us as a family and making sure that her care fits into our family’s routines and procedures. Their ability to interact and treat my child as a person, and not just talk to me, but also interact with my daughter...We’ve been to appointments where the physician comes into the room and it’s like [Child] is not even there. So this is just a funny story. [Child] is growing his hair out, okay? So, [Laughter]… his hair was all puffed up, okay, so the doctor came in and she’s just laughing and howling at him and she brings in the other doctors and the nurses and everybody comes in and they’re like, ‘You’re so handsome!’ And he’s just loving it because everybody is… making this big deal over his poufy hair. Nobody had to do that. Nobody had to recognize the fact that he had poufy hair and he was being all cute because he’s thirteen now…That’s what I mean, they genuinely feel—they give the family a genuine feel of, ‘We’re here to help you.’
Family-Centeredness	One participant on the criteria by which she evaluates her child’s clinicians: Having individuals that are willing to hear you out for your concerns and truly listen to what your concerns are, and offer up an opinion based on those concerns, is one of them. I understand that providers are the professionals, and they know a lot about things I don’t know, but I also know my child best... And I also know what is typical versus not typical. And so having a provider that can develop that relationship, and really listen to the parents—and I’m not saying find a provider that is going to just give you what you want, because that’s not the case at all. But who can have a very logical conversation that considers all sides. We’re not just a number or you know something in the computer. ‘Oh, we only have ten minutes, we have to push this kid out so that we can make money.’ No. It’s ‘we need to take the time, address what needs to be done with the family, the child individually, everyone. Everyone matters. They project that… They don’t just run out the door and say, ‘Here this is done.’

Compassion

Most participants (n=18/20) mentioned how they believed their complex care clinician was personally invested in their child’s well-being and saw their child as “more than a number or patient.” One caregiver explained why she maintained her son’s care at the clinic despite moving hours away, “The way that [clinician] cares, her interest in his care and well-being, to me, is worth a five-hour dive... [Clinician’s] thoroughness, I think, is a byproduct of her caring about [child] as an individual.” Participants referred to verbal and non-verbal demonstrations of commitment to their child and family’s well-being, such as complementing a patient about a new haircut or asking an adolescent about his irlfriend.

Family-Centeredness

“Truly listening” to caregivers was another attribute mentioned frequently (n=17/20). Caregivers praised clinicians with whom they felt comfortable asking questions and raising concerns. Participants stressed the importance of clinicians respecting caregivers’ knowledge of their child, considering caregivers’ opinions seriously, and not labelling caregivers as “difficult.” As one parent stated,

“[Being] treated like an equal part of the team, that helps me with how to help the doctors do their job and how to help my son get better, when we’re all working together... [Clinician] is an expert in complex care. [Clinician] is an expert in GI. As a parent, I’m an expert on my son.”

Many participants (n=14/20) also commented on the significant amount of time clinicians spent with their children. This involved systematically addressing all of a child’s issues and needs at each routine check-in, but also referred to clinicians’ ability and willingness to devote long periods of time to simply speak with them. One parent recalled the support she received when her son was diagnosed with a neurodegenerative disease,

“Complex care was very good letting me talk through the things I needed to talk through. It was just very, very helpful always kind of feeling like they had the time when we first got the diagnosis, working things out… there were times I was calling two or three times a day.”

DISCUSSION

In discussing their perspectives about what constitutes high-quality care at a children’s hospital-based complex care center, family caregivers of CMC valued having a clinician “quarterback” who was in-charge of their child’s medical care and they could go to with any questions or concerns. Participants also wanted their child’s clinicians to be willing to go “above and beyond,” with particular focus on perceptions of a clinician’s personal investment in their child. Our analysis demonstrates how the medical home framework enables CMC clinicians to live up to these ideals. It also highlights challenges in longterm sustainability complex care centers face given high resource requirements and inadequate reimbursement.

In their discussion of clinician “quarterbacks,” participants described how the medical home domains of comprehensiveness, continuity, accessibility, and care coordination enable complex care medical providers to serve in this role. Referring to comprehensiveness and continuity, participants explained longitudinal relationships with clinicians who have thorough knowledge of a child’s overall clinical picture provide families with a trustworthy resource for voicing concerns.^16,20,21 Regarding accessibility, participants focused on the ability to quickly communicate with clinicians, familiar with their child, at all times of the day. Similarly, participants concentrated on a particular component of care coordination - ensuring a child’s entire health care team works together in implementing the same plan; often the most difficult and frustrating part of care to arrange.²² These findings are consistent with a large body of evidence linking the medical home with improved outcomes such as increased parent satisfaction, reduced unmet service needs, and lower rates of healthcare utilization and serious illness.^23,24

Although providing a blanket definition of “going above and beyond” is difficult as CMC’s needs and experiences are heterogeneous, participants’ descriptions of clinicians surpassing expectations corresponded to other medical home pillars: compassion and family-centeredness. Compassion referred to clinicians demonstrating commitment to a child’s well-being and seeing each child as an individual person.²⁵ Regarding family-centeredness, participants recounted interactions in which clinicians took caregivers’ concerns seriously, respected caregivers as experts in their child’s care, and spent sufficient time with them. These findings build on literature connecting compassionate communication and family-centered care with improved treatment adherence, child outcomes, and caregiver health-related quality of life.^26,27

Features of our institution’s complex care center exemplify potential approaches to delivering on these concepts in practice, yet also highlight the significant upfront and sustained support needed from health care institutions and payers. For example, enhanced scheduling flexibility (e.g., same-day or joint appointments) allows for more frequent appointments which are longer (e.g., 30–60-minute routine follow-ups) and incorporate the skills and services of a multidisciplinary team. However, this requires adequate staffing to limit individual clinician’s case-loads.²⁸ Prompt, direct, and 24/7 access to familiar clinicians is achievable by utilizing multiple communication modalities (e.g., telephone, e-mail, electronic health record portal) and medical provider coverage of an after-hours/weekend pager (instead of a commercial or trainee-staffed triage service). However, appropriate compensation for this work and ensuring access to information-sharing and care-coordination tools is essential. Furthermore, to justify health system investment by requiring that complex care centers demonstrate costsavings, in addition to improving child health outcomes, is a hinderance to this care model.⁸

Serious consideration and implementation of alternative payment structures is imperative as well. Complex care clinicians engage in non-face-to-face services which are time- and labor-intensive to ensure treatment plans are carried out. From a payer perspective, fee-for-service reforms which adequately compensate care coordination could increase complex care centers’ financial self-sufficiency. Alternatively, CMC-specific payment models such as global payments with shared savings and/or bundled payments for episodic care could be considered.⁵ Institutions can support clinicians by ensuring they have the protected administrative time needed for activities such as interdisciplinary team meetings and paperwork completion (e.g., prior authorizations).

Our results also suggest clinicians require a high-level of competency in interpersonal communication skills. Clear and compassionate communication improves health care experiences and outcomes. However, many pediatric clinicians are uncomfortable engaging in critical aspects of clinician-patient/family communication (e.g., shared decision making), especially in the context of CMC’s uncertain disease trajectories.^29–31 Increased availability of communication training programs throughout clinicians’ careers may help to improve the quality of CMC clinicians’ interactions with CMC families.³² Additionally, we reemphasize that logistical considerations, such as appointment duration and adequate staffing, are equally important in reducing time and workloadrelated barriers to providing family-centered care.

Lastly, there is a tension between caregivers’ preference for working with clinicians with CMC-expertise and the fact that most CMC receive care in community settings from clinicians who are uncomfortable managing CMC-specific issues.³³ Many CMC are geographically isolated from complex care centers often located in urban settings at children’s hospitals. It is also unlikely enough complex care “specialists” will be trained to treat CMC in their local communities. Therefore, broadly accepted competencies regarding CMC medical care for pediatric clinicians should be established. This will guide development, evaluation, and incorporation of CMC-specific education into clinical training.³⁴ Concurrently, expansion and refinement of telemedicine platforms enabling video consultation, remote co-management, and/or home visits could strengthen relationships between complex care centers, community practices, and families of CMC.³⁵

Our study has limitations. Although we purposively sampled caregivers of CMC with diverse underlying health conditions and conducted interviews past thematic saturation, our sample was a relatively small group of caregivers at a single pediatric complex care center. Therefore, our findings may not be representative of caregivers of CMC receiving care at other institutions. Additionally, as our participants predominantly identified as English-speaking, white, female mothers, we were unable to explore differences in responses between racial, ethnic, gender, and language groups. The lack of racial and ethnic minority participants in our sample might explain why participants did not discuss topics such as cultural effectiveness (another pillar of the pediatric medical home) and barriers to accessing medical care at the systems, institutional, and individual levels. This limits the generalization of our findings to more racially/ethnically heterogeneous populations of family caregivers of CMC. Lastly, our study design makes our findings exploratory in nature. Therefore, future work should seek to (1) replicate this study design in a racially and ethnically diverse sample, and (2) quantitatively examine associations between our participants’ desired clinician characteristics and child/family outcomes.

In summary, family caregivers of CMC receiving care at a pediatric complex care center value having clinicians who take responsibility for managing their child’s overall care and demonstrate personal commitment to a child and family’s well-being. Future efforts to improve and expand the complex care center model can incorporate the viewpoints of CMC family caregivers through increased focus on comprehensiveness, continuity, accessibility, compassion, and family-centeredness, in addition to the current emphasis on care coordination.

What’s New.

Caregivers of children with medical complexity treated at a complex care center value having a clinician “quarterback” who goes “above and beyond” for their child. To meet this standard, clinicians can use the medical home model as a guiding framework.

ABBREVIATIONS

CMC

Children with medical complexity

C3

Complex Care Center