What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change

In 2017, HRSA funded the CMC CoIIN over 5 years to drive system innovation through QI and fiscal innovation, partnered with family colleagues across 10 multidisciplinary state teams.¹⁴ Two of the 3 CMC CoIIN goals are of particular interest here, to improve CMC QoL and family WB, captured by 4 of the 5 project objectives: Increasing from baseline (1) CMC reporting single point/locus of management in a patient/family-centered medical home; (2) CMC with a shared plan of care; (3) families of CMC reporting previously unmet needs are being met; and (4) families reporting engagement on the clinical level (Fig 1).

The CMC CoIIN was the first HRSA-funded care transformation project to focus on child QoL and family WB as explicit shared outcomes. In turn, the CMC CoIIN produced a diverse array of practical frameworks, models, strategies, and processes that may also be applicable to children with disabilities and CYSHCN generally.

By design, CMC CoIIN family colleagues co-led every aspect of the project at the network and state team levels, based on the core values of accountability, equity, and transparency (Fig 2). As a network-level measurement workgroup worked to identify quantitative measures, it became clear that existing medically focused measures tend to score high, suggesting at baseline that health care systems are working well for CMC and families. Yet, family colleagues made clear that systems fall far short in meeting QoL/WB needs, and measures needed to address the child and family holistically to drive the most meaningful system changes.

In turn, the Boston University–led team convened a family-led workgroup of mostly family colleagues, who each then helped implement family focus groups within their state teams to capture “the real-world” lived experience of child QoL, family WB, and families’ needs. Each state determined eligibility based on that team’s cohort criteria; we did not collect specific demographics of participants. Local family leaders facilitated groups to build trust and rapport (Supplemental Addendum 1), leading with an icebreaker on the joy in raising a CMC for shared connection and to uphold each CMC as a whole child like any other child. Families shared what both child QoL and family WB look like for them, and then how their care team could support that outcome.

Boston University graduate research assistants conducted an inductive content analysis¹⁵ of transcribed focus groups; inter-rater reliability between research assistants was ∼80% across all coded transcripts. Open coding in NVivo 12 allowed creation of themes and subthemes based on the literature and supervising lead team’s expert content knowledge (Supplemental Addendum 2). We also shared timely deidentified focus group summaries back to the pertinent state team to drive practical, real-life system responsiveness in each QI project.

The Boston University institutional review board determined the CMC CoIIN was not human subjects research and deemed it exempt. State teams followed their own institutions’ guidance for institutional review board determination/approval.

Results derive from 2 to 3 rounds of annual family focus groups (27 total) across 10 geographically diverse state teams (N = 127). Although some emergent themes confirmed the current state of evidence (Fig 3; Supplemental Addendum 3), we chose to focus on the 2 family-driven themes most salient for care system transformation.

Under theme 1 (What’s missing – human dignity), family subthemes describe feeling alone in the care journey because of societal bias and lack of dignity as having the greatest impact on their child’s QoL and family’s WB. Theme 2 (What families really need and recommend in care) addresses family subthemes of caring for the whole child and family, articulating what works, and does not, in practice, as well as essential but too often lacking elements of care design.

“She is just as valuable a person as any of us.”

For families of CMC, recognizing and celebrating their child’s value matters above all else. Pervasive societal bias (including ableism) and associated isolation is a reality that profoundly impacts both child QoL and family WB.¹⁶ 

“Sometimes when I was asked about my daughter’s quality-of-life or issues that she was having from her disorder, I was responded with…And it’s hard to talk about…‘Well, you do know that there’s no cure, right? There’s nothing we can do.’”

They insist their child be seen fully as a unique person, not constrained by the larger medical community or other’s judgments about the value or quality of their child’s life.

“Ask more questions, like spend more time…getting to know… you wanna feel like… they are seeing you and your kid as an individual and unique in that moment.”

“Of course, they have to give the worst-case scenario, but you have to find some joy in there, give some hope too, that it doesn’t have to just be that way.”

“I just want them to be a kid.”

Child QoL “isn’t just the absence of physical symptoms.” Families need care teams to relate in practice to their child “as always a whole person, not just as those needs.” It’s critical for systems of care to also creatively actualize the shared human need for childhood experiences and connection because CMC are often “even more isolated with complex needs.”

“… to give her a chance and not to just rule her out just because she fits in some label that someone’s kind of trying to put her in… or she’ll shutdown.”

“…a very fine line…to balance the family time, the mental health and the medical needs.”

Families of CMC desire to meet each member’s needs and have quality family experiences, albeit elusive. Improving WB begins with providers who actively partner with families beyond medical goals to navigate care ecosystems and advocate for needed services to uphold their child’s dignity and rights.

“One doctor… spoke to us as a doctor but also a human being. They’re different perspectives. [Providers] are so knowledgeable about medical stuff but there’s more to life … someone who ‘gets it’ makes a difference.”

Families need care teams to respect and honor the nuanced reality of life with a CMC because they regularly face stereotypes and pity.

“Why do you keep saying I’m so strong and then I feel like if I show my weakness and everyone’s like - whoa, you know, like pity. I don’t want you to have pity.”

Families of CMC live in daily uncertainty amid constant change. They need providers to embrace and navigate uncertainty with them, rising to the moment, listening and validating.

“I went into Dr. [name]’s office and my daughter was short of breath. Doctor [name]…told me, ‘Pull your car around … we’re not going to wait for an ambulance.’…She got in my backseat, and she jumped out of the car running into the [emergency room] with my daughter.”

“…before heading to the hospital with [my child’s] seizure… do I keep driving or do I stop?…called our care coordinator…she helped me think in a time where it gets so clouded… There’s no right or wrong. But just those moments where you just need to talk it through and have that reassurance.”

“Think outside the box and look at the whole child.”

Families need care teams to fully grasp their child’s QoL and related needs alongside medical needs. Only then can providers partner with families in centering care that matters.

“[If the care team said] ‘Yes, this is going to be hard, but he can do so many things, and it’s going to look different but he can still have a wonderful life.’ …we would have had a different first year.”

Families require creative thinking in meaningful partnership with care teams to realize unique possibilities for their child beyond current circumstances.

“Some additional things that aren’t necessarily part of the physical therapy, or any therapy, but something to think about, like, ‘Oh, maybe we can get him to do this,’ outside of the box thinking” (Table 1).

“The real true caring part of it”

Families described this as their greatest need, yet it is too often lacking as the cornerstone of care. Parents need providers to tend to their WB as fundamentally interconnected with their child’s QoL. They implore providers to genuinely ask in a way that respectfully elicits “what the family’s going through and addresses the needs of the family in a way that’s going to make the family feel more whole.”

“Where a physician has asked me how I’m doing…I’m so surprised …I just start crying… you would think that my child’s provider would care more about how parents are doing…but to just know that I’m that vital in my child’s life.”

Providers uniquely understand and often experience alongside families the most challenging times with their CMC. Families crave for providers to meet the moment through empathy, such as elemental acts of listening and presence.

“They don’t have to fix it, just get where we’re coming from and validate the load of it, the weight of it.”

“‘How are you holding up?’ … having [a provider] say that to you in a very conversational way, you learn to say ‘Alright, we’re doing okay’ even though something truly awful has just happened, because you know that they’re not really wanting to delve into it.”

Largely because of underlying societal bias, families rarely share struggles in some aspects of life with their child if they fear being shamed, or worse. Providers can earn families’ trust by demonstrating they value the child and by showing compassion and humility.

“…my son has given me the most joy in life and without him, I don’t know what I’d be…The thought of it being taken away scares me more than anything.”

“…acknowledging, ‘Good job, Mom, you got here today at the appointment.’ Like, that’s not always a small thing, or… whether they know the details of it or not, to say ‘You are doing a great job.’ It’s surprising, you think they would all say that, if you are thinking of the person [who] is clearly doing a lot.”

A few families specifically remarked on pediatric palliative care for excellence in centering family WB and compassion.

“[Pediatric palliative care] started out just coming in and lending some support and gauging to see where we were at emotionally and if we wanted to engage.”

“[Pediatric palliative care] do it in such a compassionate way, a way where you don’t feel, it’s not confrontational” (Table 2 and Table 3).

Addressing QoL/WB requires active partnership and skillful communication rooted in shared decision-making. This leads to responsive care plans that address the whole child: medical needs interconnected with all spheres of life (school, home, community) and shaped by the family unit’s needs and priorities.

“He called me beforehand…there was a conversation… he was trying to understand exactly what was important to us… that was impressive to me… really, I got the education I wanted to about her equipment.”

To avoid unintended bias in the care of CMC,¹⁶ care teams need to honor families as clinical partners, listen with humility to understand the whole picture, and respond with respect of their autonomy, dignity, and independence.

“[Complex care] spoke with the team lead that night, and the email said a parent was upset and had reasons to be upset…it makes it easier for me to speak up because I know they are going to back me up when it comes to decisions for my son” (Table 4).

“I can’t imagine this journey without it.”

Overwhelmingly, meeting other families like themselves counteracted isolation and was invaluable.

“Just hearing from other parents … to be able to talk to about the lows, too, to feel not so alone in it.”

Families recounted fumbling around, and constantly fighting, alone, for vital resources until they inadvertently found a peer and/or family-led organization or Facebook group. Most implored providers to connect them to peer resources early on.

“We’ve been doing this for 8 years, and for the first 3 years [complex care] referred us to social work every time and every time they said you make too much for Medicaid or the Children’s Program – I had no idea of the waiver. NO ONE EVER TOLD ME ABOUT THE WAIVER.”

The CMC CoIIN’s commitment to systems codesign with family colleagues provided an unusual and powerful opportunity to analyze themes that systematically address QoL and WB with 127 families in 27 focus groups nationwide. Here, families of CMC unequivocally express an urgency for systems leaders to recognize, absorb, and be transformed by the dehumanizing shortcomings in systems of care. Furthermore, the focus groups also provide direction to operationalize family-centered care and system redesign to achieve QoL and WB.

Above all, families express a deep need for systems to combat bias of the medical model and uphold dignity, genuinely valuing their child as a whole and unique human being whose QoL holds meaning and joy, not just as a diagnosis. Families discussed the primacy of the universal human need to live, play, grow, and learn as a child and family, which they report remain largely elusive. It is not caring for their CMC that reduces QoL/WB, but the highly untenable personal and financial cost of navigating dehumanizing systems of care, including the incessant need to fight for their whole child’s QoL needs to be met, with direct impacts on mental health.¹⁷ 

We uncovered families’ universal hunger for improved relationship and compassion from their providers as partners in the care of their CMC. Although some care teams received high praise, this was variable and inconsistent in experience, despite family-centered care as the standard. Families are beholden to their providers to engage and communicate with humility as equal partners in their child’s care, respecting the families’ expertise. Strikingly, focus group results confirm a large disconnect, in which families are surprised that providers rarely recognize their vital WB needs as inextricably connected to their child’s QoL. In light of cumulative experiences of judgment and pity, families do not often share their most difficult and pressing needs. To drive meaningful care and outcomes, families need providers to take the time to develop real trust and human reciprocity (Table 2), including taking care to simply ask how families are doing and understand what they are going through.

Families asked for openness and creativity in problem-solving⁴ their child’s complex conditions within their unique and ever-changing circumstances, based on their child’s hopes and dreams. Uncertainty is a definitive reality; families of CMC crave providers’ presence to navigate the shared unknown, empathize and hold the reality of the most challenging moments with them, and broach difficult yet important topics proactively.⁷ The simple human acts of presence, listening and showing up offer powerful tools of support that are often lacking. Some of the most profound moments described by families centered around human-to-human connection when a provider recognized and was able to bear the emotional load with parents or validated their efforts.

Families also called out operational structures of care essential to cultivating relationships and humanizing systems (Table 4).¹⁸ These include basic communication structures within a medical home, such as a dedicated care team navigator and advocate, consistent follow up, and brief check-ins. Families repeatedly mentioned that providers who paid attention to depth and quality of communication and relationship made a significant difference in QoL/WB.

A key barrier to QoL/WB is continued reliance on the limited lens of the medical model of disability and care. Families were able to clearly list whole-child QoL-related needs that must be brought into the mainstream for providers as a matter of routine (Table 1), such as adaptive and inclusive recreation. Essential resources, referrals, and connections to tangible services and supports are vital to meet holistic needs and move out of “survival mode” for both CMC and families (Table 4).

Families reported that peer support, such as Family-to-Family organizations, provide “game-changing” expertise in services and supports for both intangible elements of care and tangible resources. Families emphatically declared that systems of care must connect them to other families routinely early and throughout the care journey. This is a straightforward yet profound strategy to structurally integrate the power of shared lived experience as a key element into care.

The needs families expressed directly align with integrating humanism into systems of care. Humanism is “any system or mode of thought or action in which human interests, values, and dignity predominate.”¹⁹ We propose that codesigning systems of care for CMC with humanism principles puts CMC and families at the center in embracing lived experience and elevating what matters to families to counteract bias. Our findings suggest that humanism principles are aligned with systems change, including how to get the most value out of the components of care that CMC depend on for health and wellness, achieving optimal QoL and WB outcomes, and promoting optimal partnership between families and providers as they codesign better systems of health care.

Family colleagues and providers need each other’s complementary perspective, expertise, and camaraderie to humanize systems design at every level as the 2 groups most engaged in the care of CMC.²⁰ There is distinct emotional impact and moral distress in complex care work for providers; thus, it is notable that in addition to improving care for children/families, humanism also improves provider wellness.²¹ Providers bring essential experience to complement families and imagine new solutions together.

For example, across several focus groups, some families organically elevated pediatric palliative care (distinct from hospice end-of-life care) as exceptional in honoring lived experience driven by child QoL/family WB upfront.²² The practices they describe are fundamental, and map directly to findings herein to operationalize humanism in care (Supplemental Addendum 5). This was subsequently and emphatically affirmed by CMC CoIIN family leaders. They described palliative’s holistic and compassionate approach (which largely overlaps with the patient-centered medical home) as effectively encapsulating essential yet underdeveloped functions in comprehensive care of CMC²³; growing expert consensus agrees.²⁴ Working together, family leaders and providers could shift mindsets around primary palliative care, integrating key competencies to further develop and deepen skills of all CMC providers successfully at any point in their career.^25,26 

Much of families’ expressed WB needs in Tables 3 and 4 translate directly to specific policy priorities for system leaders to infuse humanism in care, as well as policy makers for upstream solutions.²⁷ The tables’ subthemes can also inform strategies to implement the federal Maternal and Child Health Bureau’s recently released Blueprint for Change.²⁸ The vision for the Blueprint for Change is to provide a 10- to 15-year strategic plan to advance the system that serves CYSHCN, including those with medically complex conditions, to improve their lives and the well-being of their families.

In practice, a care coordinator/navigator role is vital with specific CMC expertise for raising awareness and navigating cross-sector services and supports, including waivers and other public programs, paperwork to reduce administrative burden for families (eg, care plans, waiver applications), and scheduling.²⁹ One emerging model in Medicaid asks health care systems to prioritize establishing formal subcontracted community-based partnerships for standardized referral pathways, which could strengthen collaboration with peer and family support organizations with this expertise. Last, state-level policies to pay families as caregivers are vital as an option for families of CMC,³⁰ as are federal policy priorities to build home- and community-based services.³¹ 

Notably, our focus groups were not designed as pure research, but for QI purposes within the CMC CoIIN toward systems transformation. Nonetheless, limitations to these results include lack of representativeness and use of a convenience sample from enrolled families in each state’s QI project. Also, participants were limited in diversity (albeit several focus groups were conducted in Spanish) and nearly all were the biological mothers of CMC. Furthermore, there may be unintended bias in analysis and interpretation of results. Last, qualitative thematic analysis cannot fully account for the diversity and individuality of lived experience that families call on systems to tailor care to by design.

The shortcomings in the system of care for CMC are too complex for any 1 stakeholder group to solve alone.⁴ To effectively and creatively address the most urgent needs that matter to CMC and families, systems-level changes need to embed “lived experience.” The framework of humanism embodies meaningful change, combatting bias inherent in the medical model of care by centering human context and meaning for QoL/WB, to drive holistic care, much of which could apply across care settings. Providers and family colleagues can codesign elements of care that actively operationalize humanism principles, as well as the commensurate family-driven measures of improvement for accountability and sustainability. Along the way, as powerfully articulated in this final quote, humanism is the “why” that helps us remember what we are fighting for in the first place.

“And so I want [my son’s] life - however long that is - to just be able to impact other families and other people, and that [other people] can see the joy that yes, it’s hard, and yes, there’s struggles, but there’s such joy in it. And I think by starting off with [“What brings you joy in raising your child/ren with medical complexity?”] … it allowed us to remember while we’re here why, why we fight for them - you know, that they can impact other people.”

The authors gratefully acknowledge the thorough and thoughtful analysis of the family focus group data by Christopher Louis, PhD, MHA; Rubina Veerakone, MPH; and Megan Eaves, MPH; all valued colleagues with the Boston University School of Public Health.

CMC

children with medical complexity

CMC CoIIN

Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity

COVID-19

Coronavirus disease of 2019

CYSHCN

Children and Youth with Special Health Care Needs

F2F HIC

Family-to-Family Health Information Center

HHS

US Department of Health and Human Services

HRSA

Health Resources and Services Administration

QI

Quality improvement

QOL

Quality of Life

RA

Research Assistant

WB

Well-being