“Fitting the Pieces Together”: The Experiences of Caregivers of Children With Medical Complexity

From February 2021 to January 2022, caregivers were recruited from the complex care clinic at an academic medical center in the mid-South United States; in this clinic, medical complexity is defined by the presence of a lifelong chronic medical condition, the involvement of 4 or more subspecialties in the child’s care, dependence on at least 1 type of medical technology, and increased risk of hospitalization due to medical fragility. This complex care team is staffed by 3 physicians, 2 nurse practitioners, and a part-time social worker who, together, serve 450 patients across a tristate area. This team provides direct medical management of acute and chronic conditions, care coordination across medical subspecialties, continuity as an inpatient consultation service for admitted patients, and assistance with appointment scheduling, home nursing, durable medical equipment and supply management, insurance coverage needs, and pharmaceutical access. Institutional review board approval was obtained from this site (protocol #210192).

Study information was distributed to all eligible participants by the complex care team during routine clinic visits. Eligible participants were (1) the primary caregiver (biological parent, adoptive parent, or legal guardian) of a child seen in the complex care clinic, and (2) spoke English as their primary language (due to limitations of the study team and lack of funding resources for translation). Nineteen caregivers of CMC participated in this study (Table 1).

At the time of participant recruitment, this complex care clinic maintained a roster of 431 patients, which can fluctuate as patients leave, die, or are added to the caseload. Of these, 41 had languages other than English as their primary language. Additionally, 48 of these patients were aged >18 at the time of recruitment. Taking these into account, there were a total of 342 eligible participants for this study; the sample of 19 parent/caregiver participants reflects a 5.6% response rate, which the research team anticipated because of high family caregiving loads and the amount of time and coordination needed to participate. The recruitment period spanned 12 months to give all families an opportunity to participate because clinic visit frequencies can vary from monthly to annually depending on the child’s status and other admissions or health care encounters.

Participants completed an in-depth interview about their experiences of caring for CMC, their unmet needs and persistent challenges, and insights into their child’s unique characteristics and personality (Table 2). Although the primary complex care physician (AK) provided information about the study via flyers during clinic visits, potential participants were informed that she was not involved in further data collection in any capacity. All interviews were coordinated and conducted by EH, a trained graduate student who was not involved in the child’s direct care experiences to avoid undue coercion or discomfort. Interviews lasted up to 2 hours and were audio-recorded and transcribed verbatim.

With psychological phenomenology as the operant methodology for this study, an inductive coding approach^45,46  was used to identify emergent themes without imposing a priori assumptions. After group coding training, each transcript was independently coded by 2 research team members with varied disciplinary perspectives: a pediatrics board certified complex care physician (AK), a certified pediatric nurse practitioner (AW), a Certified Child Life Specialist (JB), and 3 graduate students in psychology and human development (EH, YW, VT). Both sets of codes were included in the secondary categorization step of the analysis. Discrepancies were resolved via consensus meetings until final themes were identified; transcripts were then re-reviewed to ensure the accuracy and completeness of interpretations.

In terms of caregiving experiences, participant responses revolved around 4 themes: (1) the many responsibilities of caregiving, (2) insufficient respite care and skilled support, (3) financial limitations and costs of care, and (4) challenges with mental health and wellbeing. Participants identified their unmet needs in 6 dimensions: (1) transition stress, (2) communication across teams, (3) learning to be an advocate, (4) purposefully inclusive environments, (5) finding connections and community, and (6) the challenges of coronavirus disease 2019 (COVID-19; Table 3).

Participants articulated their caregiving experiences as all-encompassing; they reported a need for more skilled support and respite care access, highlighted the immense costs of care and financial limitations, and described mental health challenges.

The responsibilities of caregivers of CMC are vast. One caregiver described that her son “pretty much requires complete care and is very dependent” (Participant 3). Assistance with daily personal care tasks, like diapering, bathing and teeth brushing, performing patient transfers, and providing enteral or oral feedings were the primary duties recounted by participants. Additional tasks were specific to the child’s medical condition, like administering medications, performing therapy regimens or exercises, and preparing specialized diets.

Participants also described attending to medical equipment, interpreting data from monitors, replacing feeding and tracheostomy tubes, and utilizing specific devices, like suction machines, nebulizers, and ventilators. Caregivers described their role in transporting their child to medical appointments, school, and therapies. They identified several barriers to these care responsibilities, including equipment failure, limited resource availability outside the home, a lack of physical support or assistance, and difficulties navigating inaccessible environments. Amid these many intense caregiving needs, one parent reported, “[I] just try to get some sleep where I can” (Participant 14).

Participants relayed frustrations about the lack of respite support for their family, suggesting “every special needs parent…need[s] respite care” (Participant 16). Participants shared difficulties balancing numerous care activities while also managing household, familial, and personal obligations, such as school, travel, leisure, and socialization for their other children. Some families specifically discussed the challenge involved in family vacations, and 2 described the many risks of traveling with their CMC; for many participants, the benefit of travel did not outweigh the burden. Several verbalized how access to a trusted, skilled support person to assist or provide respite would benefit their child and their family.

Although they desired more assistance and respite care, some participants described negative home health care experiences that compromised their trust, thus solidifying their permanent place as the primary caregiver for their child. One participant shared several traumatic experiences, including an unplanned hospitalization after a home health nursing error. Per one participant, “private duty nursing has been the most challenging aspect of you know all of this stuff” (Participant 6). Families also noted a lack of insurance coverage and adaptability among home health services as barriers to their use of skilled support and respite care.

All participants recounted heavy financial and intrapersonal costs incurred by caring for their child, including money, time, energy, and the sheer cognitive effort required to access needed resources. They described making difficult decisions about retaining versus foregoing employment to qualify for benefits like Medicaid. Others detailed multi-hour phone calls with insurance companies to negotiate reimbursements and billing, which one participant termed, “the hoops they make you jump through” (Participant 7). Financial considerations were a continual stressor, with one mother sharing, “every single day I go to the mailbox, and I’m terrified I’m going to get a letter stating that I’m going to lose money, or that I owe money” (Participant 16).

Several participants described their experience commuting hours across the state to access care and how the time spent and advanced planning necessary to accomplish this felt overwhelming. One father reported making a large withdrawal from his 401k so he could transport his daughter for care, remarking “a lot of grants exclude vehicle purchases. They cover equipment, but they won’t cover vehicles” (Participant 7). Two families shared their active efforts to physically relocate their families closer to medical resources.

Participants described many challenges to their health and wellbeing caring for CMC, the most significant being coping with multiple sources of persistent stress. Participants identified stress related to (1) the physical, social, and emotional needs of the child and (2) the effects of the child’s needs on marital and sibling relationships. Additionally, they described experiencing and negotiating contradictory emotions about their child’s prognosis, feeling like “even though their family member is living and they’re caring for them… they are in the middle of experiencing grief and loss and trauma” (Participant 1). One participant felt strongly that “families should get a family counselor” (Participant 5), whereas another said that “the complex care team [could] hire a psychologist” (Participant 7).

Participants identified numerous unmet needs in caring for CMC and their families, which spanned 6 categories: transition, communication across teams, learning to be an advocate, inclusive environments, connections and community support, and the challenges of COVID-19. Specific, tangible needs noted are also displayed in Table 4.

Transitions in various forms were frequently mentioned by participants. When detailing transitions between the hospital, home, and outpatient clinic, participants stated needing more support and guidance. One participant reported, “we’re just trying to de-medicalize and reintegrate into the community” (Participant 12). Transitions across different educational environments, such as home-bound and community-based schools, were described as “draining” and “miserable.” Of particular salience to participants were anticipated transitions from pediatric to adult care, and even transitions in caregivers as the child and family ages. One caregiver reflected “if something happens to mom and dad who’s gonna watch him as an adult and do the right thing for him?” (Participant 2).

Caregivers of CMC described difficulties with communication across teams. With their child being followed by a primary care provider, numerous specialists, and therapists (often across multiple care institutions), caregivers felt a heavy stress in being the consistent source of information about their child’s history and care. One family described, “twenty specialties and you got to juggle how they are communicating with each other, and you have to remember all the details to share and every appointment” (Participant 5). Even in the time of electronic medical records and designated care coordinators, participants described how “records are scattered across so many different [institutions]…I wish there was some kind of better record sharing” (Participant 12). These difficulties with communication leave caregivers feeling great pressure to correctly report on and communicate for their child.

An essential component of caring for CMC, participants reported, is learning to be an advocate; as one mom shared, “that’s one of the hardest things about being a mom of a kid that’s got complex medical needs - you have to learn how to advocate because if I didn’t advocate, I don’t know where we would be” (Participant 16). As the child’s primary caretaker, “no one is ever going to advocate for health and life of your child like [you] are” (Participant 8). Advocacy meant communicating their child’s needs to various stakeholders, such as schools, insurance companies, and medical teams. Additionally, participants described the need to advocate within their community for inclusive environments and social activities to create safe opportunities and engagements for their children and other CMC.

Most participants detailed difficulties finding and navigating health care spaces with their child, from parking garages to patient rooms and restrooms. One mother described parking blocks away from the hospital because of the lack of wheelchair-accessible, van-sized parking spaces in the patient parking garage, sharing, “you have all this equipment you’re carrying…and supplies, and you’re pushing maybe 100 pounds of child and chair and you’re parked way down there…sometimes I have to back the van up out into the roadway, stop (laughs), put the ramp down, and just [get her in] with the van out in the middle of the roadway” (Participant 10). Inside the hospital facility, participants identified the lack of slings or lifts to help them transfer their child as a stressor and injury risk; similarly, the lack of larger child- or adult-sized changing tables in hospital restrooms was a point of concern. One mother shared, “no one ever told me where any of those long adult-size changing tables were, I had to stumble on them over the last 12 years” (Participant 1).

Participants also described the lack of adaptive equipment and furniture for use by CMC; one parent recounted spending hours hand-feeding her daughter with a syringe because the hospital feeding pump was incompatible with their home device. Additionally, on inpatient units, the bedside rocking chairs were not large enough for caregivers to rock children larger than the size of a typical toddler. Participants felt this to be a significant coping barrier for children who rely on the normalcy of positive caregiver touch and connection throughout the day.

One frequently discussed unmet need across multiple participants was a lack of community. In some cases, participants felt that they lacked community because “(they) don’t fit into any kind of typical group” or “it’s not like there’s a lot of other people to … talk to” (Participants 2 and 16). Caregivers struggle to find community support because their child’s diagnosis may be statistically rare or multifaceted. One participant expressed a lack of community because “[they’ve] been so wrapped in [our child] that [they] haven’t met anybody” (Participant 11). The needs of a CMC can be immense enough that caregivers do not have the time to seek and create community among other families in similar circumstances. A lack of community can cause caregivers to feel lonely and unsupported and adversely affect mental health.

Several participants described how COVID-19 negatively impacted them. One of the major consequences of the pandemic was a shortage of staff. In the case of home nursing, failing to find consistent coverage may put the child at greater risk because “several people [are] bringing germs into your house” (Participant 17). Meanwhile, COVID-19 has caused delays in care and a lack of acute care resources. One mother reported that it was “almost impossible to get in the ER” when COVID-19 first hit (Participant 17). Elective procedures and hospital visits were often canceled, as well. Although some regular therapies went online, many caregivers did not think their child responded well to telehealth, and it was a challenge to get the child to cooperate: “We couldn’t handle the virtual therapies. It’s really boring, and when he’s bored, he’s not cooperating” (Participant 9). The pandemic has also led to more social isolation. One mother shared that her son “gets very frustrated if he can’t go and interact with people’” (Participant 16), and another mother described that their family was “more sheltered than ever” (Participant 6).

Despite the difficulties caused by COVID-19, some participants talked about the benefits of virtual appointments. For caregivers who need to travel long distances for appointments, it was far less physically demanding and time-consuming when things went online. One mother wished that they could “keep on doing the virtual appointments as much as possible” because bringing the child to hospital visits itself is “a lot of work” and difficult for the patient (Participant 10).

Participants in this study described their experiences along 4 themes: the many responsibilities of caregiving, insufficient respite care and skilled support, financial limitations and costs of care, and challenges with mental health and wellbeing. They also identified 6 areas of unmet need: transition stress, communication across teams, learning to be an advocate, purposefully inclusive environments, finding connections and community, and the challenges of COVID-19.

These themes and areas of unmet need both align with and department from previous literature in this area. First, the compilation of themes and needs identified by this group of participants resonates with the authors of several previous studies, who explored these specific topic areas, for instance, around caregiving responsibilities,^{7,9,13,17,32,33}  respite care,^{10,11,20–22}  and the financial costs of care due to lost or changed employment.^17,18,31,40  Participant perspectives in this study also aligned with previously identified parent/caregiver needs for enhanced transition support,^36,38  care coordination and collaboration,^15,16,37  and community-based social supports.^13,30  Unfortunately these outstanding needs and continued difficulties suggest that existing supports either do not exist, are not accessible, or are not effective in meeting these needs.

There were some interesting points of department in the results of this study. For instance, participants reported feeling as if telehealth did not effectively meet their child’s needs and stated a preference for attending in-person appointments and therapies, even when a commute was necessary. This suggests that interest in and preferences about telemedicine options may be more variable than initially proposed by previous research and advocacy.^1,2,27  However, this could be because the research site rarely incorporated telemedicine until the COVID-19 pandemic, and perhaps, responses to the pandemic and social isolation may have influenced participants’ experience of this early iteration of virtual care interactions.

These experiences of caregiving, when considered alongside the lack of adequate support described by these participants, have several implications for direct patient- and family-centered care provision. As caregivers in this study noted, the many responsibilities and few resources available when caring for a CMC are challenging for some families. Perhaps, at the time of diagnosis or discovery of medical complexity, interdisciplinary teams could partner with families to prepare them for the journey ahead by teaching advocacy skills, sharing insights into how to navigate services, and building confidence in their ability to care for their child’s long-term needs. Along with this, psychosocial providers, such as social workers, case managers, and child life specialists can collaboratively offer families accessible information about available social and financial resources, adaptive equipment vendors, and family-to-family support programs to help them build a network of ongoing support. When serving pediatric patients with medical complexity, providers and psychosocial care professionals should partner with families to assess their caregiving responsibilities and identify supports in home and community settings that can help with these activities. For instance, it may be possible to work with nonprofit organizations or tap into federal or private funds to access respite services, whether from volunteers or skilled nursing support. Attention can also be given to aligning tasks of care to be completed at home, much like in the hospital, to help cluster care for parents/caregivers to manage by volume and frequency.

On an institutional level, more attention should be given to the physical environment in health care settings and purposefully inclusive design. Several participants in this study specifically mentioned increasing the number of changing tables, particularly those large enough for an adolescent or adult, creating more parking spaces for oversized vehicles carrying adaptive equipment, and gaining access to lifts and larger-sized furniture in clinic rooms and inpatient units. At the higher policy level, caregivers of CMC may benefit from more respite care options, continuous coverage from medical providers who are also accessible through telehealth (although telehealth was not the preferred option for all families in this study), and more widespread options for convenient, coordinated, and comprehensive care. More grant opportunities are also needed, as well as improved access to current grant offerings, and direct advocacy to insurance companies to lessen the financial burdens of caring for CMC and possibly improve caregiver experiences.

Unlike other research to date, this study gathered first-hand, in-depth perceptions of current caregivers of specifically CMC. Rather than employing a preexisting framework or codebook, the inductive analytic approach allowed openness to participant insights that other analyses may have failed to capture. However, the results of this study are not without limitations. First, participants were recruited from a singular hospital and may not be representative of other facilities or regions. Second, the racial, ethnic, and socioeconomic backgrounds of participants were relatively homogeneous and, thus, may not reflect the experiences of other positionalities. Third, perspectives represented here are from English-speaking families, who may have more access to and knowledge about health care and psychosocial services than those who speak other languages, so application to non-English speaking groups should be done with caution. Finally, given the high quantity and intensity of caregiving needs reported by participants in this study, time may have been a notable barrier to participation for some potential participants, meaning that some key perspectives and needs may not be represented fully by this study.

Caring for CMC involves many varied and constant responsibilities on the part of parents and caregivers, and these may have a physical, emotional, and psychosocial toll on parents and caregivers. With this awareness, it is essential that home- and hospital-based staff and providers, through coordinated and family-centered care, partner with families to assess support and information needs and identify opportunities to help families generate long-lasting networks of support beyond the hospital walls. More research is needed to continue to understand the needs of this patient and family population, as well as effective interventions for addressing these needs and bolstering wellbeing.