Exploring Medical Foster Care as a Placement Option for Children With Medical Complexity

In 2017, we collaborated with a state-wide MFC agency to recruit up to 6 care team members per child for 15 CMC. Eligible care team members included English-speaking foster parents, biological parents, MFC caseworkers, MFC nurses, child welfare agency caseworkers and supervisors, and primary care pediatricians (PCPs). Overlap of some care team members among the 15 children meant they may have been interviewed more than once to capture their experiences with individual children.

Study approval was obtained from the institutional review board and the local Social Services Administration Research Review Board. Informed consent was obtained.

Care team members completed audiotaped, semistructured interviews in person or by telephone. Interview questions were drawn from literature regarding MFC and CMC and included the following domains: (1) general information about MFC (eg, what it is, process for entry); (2) child characteristics (eg, medical, social, placement); (3) care team member roles, continuity, and interactions; and (4) QoL. Questions were tailored to care team member role. Participants received a copy of their interview transcript for fact-checking.

All participants were asked to describe the child’s QoL; foster parents additionally completed the 47-item Infant and Toddler Quality of Life Questionnaire (ITQOL-SF47)¹⁸  for children age 2 to 71 months or the 28-item parent proxy Child Health Questionnaire (CHQ-PF28)¹⁹  for children age 5 to 18 years. The questionnaires were used to measure child-focused physical and psychosocial domains.

Qualitative and quantitative analytic techniques were used for this mixed-methods study. Descriptive analyses were performed on transcripts. Two authors (R.R.S. and J.C.R.) independently extracted information about care team roles and continuity; the pathway from CPS referral to MFC; child medical, social, and placement factors; and child QoL. The extracted data were compared, and where there was disagreement, the authors re-examined transcripts until consensus was reached. Similar responses regarding child factors (ie, reason for placement, barriers to permanency) were grouped into categories and modified until agreement among authors was met. Conventional content analysis²⁰  was applied to participant responses regarding suggestions for MFC improvements. Two authors (R.R.S. and E.P.W.) independently coded these responses and grouped codes into themes. All authors then met to discuss the codes and themes and resolve discrepancies as a group. Preliminary results were shared with key stakeholders for member checking. Questionnaire scoring followed manuals provided by HealthActCHQ.^21,22 

Interviews were completed with 2 to 5 care team members (median = 4) for each child (Fig 1). There was overlap of care team members among the 15 children; 58 total interviews were available for analyses (n = 37 participants).

Participants described their role and the roles of other care team members in providing care to each child in MFC.

Foster parents provide around-the-clock care for the child, schedule and attend medical appointments, and coordinate care.

Biological parents are variably involved with the child, from no recent contact to weekly visits. Unless parental rights are terminated, they contribute to medical decisions for their child (eg, consent for surgery).

MFC caseworkers work for the MFC agency, visit the foster family weekly, provide care coordination and case management, ensure the child is safe and receiving medical care, and facilitate team communication.

MFC agency nurses assess the child at least every 3 months to confirm receipt of medical care, train foster and biological parents (ie, in gastrostomy tube feeding), and are resources for other care team members regarding the child’s medical needs.

Child welfare caseworkers work for the child welfare agency and visit the child monthly, ensure a safe and appropriate placement, support biological families toward reunification, and ensure the child receives appropriate services (eg, medical, educational, behavioral).

The PCPs see the child approximately every 3 months and as needed for acute concerns, provide medical care, manage medications, coordinate with subspecialists, communicate with other team members (primarily with the foster parents), and complete health visit reports for the MFC and child welfare agencies.

Participants described numerous additional care team members from multiple systems (eg, child welfare, health care, school) (Supplemental Fig 3).

In Figure 2, we summarize the pathway from CPS referral to MFC, as described by participants. When MFC placements are not readily available, hospital discharge can be delayed or alternative placement options may be considered.

A child welfare caseworker said, “If a child’s in the hospital, and they have special needs…it could take a couple of days [to find a placement]. It could take a week. It could take longer.”

Another child welfare caseworker stated, “If the child has severe medical needs, and we couldn't find a foster home, our last resort would be looking at a group home. . .and the very last resort, you know, we don’t like to send kids out of state, but I know in the past I’ve had kids that have gone out of state.”

CMC in MFC have a combination of complex medical and social challenges that contribute to foster care placement. Half (53%) of the children were boys, and age ranged from 1 to 11 years old (median = 4). Participants described the complex medical needs, diagnoses, and placement characteristics for the children (Table 1).²³  Most had a developmental delay or disability (87%) and technology dependence (87%). Each had several medical conditions and multiple subspecialists (range = 2–12; median = 5). Eleven (73%) entered MFC directly from a hospital. Medical neglect contributed to placement for most children (87%). Parental rights were terminated for 1 child. Nearly half of the children (n = 7) were in MFC for over 2 years (range = 2 months to 8 years). Participants identified several barriers to achieving permanency for each child (eg, reunification with biological family, adoption, guardianship).

Changes in care team members were common; since initial entry into foster care, 53% had a change in foster parent and 67% had a change in child welfare caseworker. Reasons for foster parent placement changes included the following: child reentry into foster care after unsuccessful reunification, poor fit with child’s needs, foster parent physical or health challenges, hostile relationship between biological and foster parent, and foster parent not compliant with agency regulations. Since being placed with this MFC agency, 60% had a change in MFC caseworker and 27% had a change in MFC nurse. In regard to PCP continuity, 75% (9 out of 12 responses, 3 missing responses) had a change in PCP at entry into foster care (n = 3) or during time in foster care (n = 6). Reasons for PCP changes included foster parent preference, PCP unable to handle medical complexity, placement changes (ie, previous PCP too far from new placement), and PCPs retiring or moving.

In Tables 2 and 3, we compare QoL scores for CMC in MFC (n = 9 for ITQOL-SF47; n = 4 for CHQ-PF28) to normative data.^22,24  QoL scores were lower (more impaired) across nearly all domains for CMC in MFC compared with both the age-matched general population and children with 2 or more chronic conditions. When asked “how would you describe this foster child’s quality of life?” the care team members noted the individual child’s limitations while also highlighting positive aspects of the child’s QoL.

An MFC caseworker said, “She has two [foster] parents who are very caring and well equipped to take care of her. They love her very much. She obviously had some feeding issues, which I believe could interfere with her quality of life. But she doesn’t know any better, so I believe her quality of life is very good.”

A PCP said, “His quality of life is about as good as you can expect for a [child his age] who’s developmentally a 1-month-old or lower. He can’t even eat, but he is loved. He is well cared for. He is warm, dry, fed, and all of those things. The biggest one is that he is loved, and he’s appropriately stimulated.”

When asked on the surveys how the child’s health has changed over the past year in MFC (or since MFC placement, if <1 year), all foster parents scored the child’s health as stable or improving (Tables 2 and 3). This change in QoL was echoed during interviews with foster parents and other care team members.

A foster parent said, “Call me biased, call me whatever; since he’s been here, his quality of life has improved greatly.”

An MFC nurse said, “I think that when she first came in, she did have pain; she was struggling to breathe often. She was throwing up quite often, had very severe reflux, wasn’t thriving, wasn’t gaining weight. She definitely is a different child now…she’s growing and thriving, interacting, laughing, and babbling.”

Participants provided suggestions to improve care within MFC (Table 4). Care team members could benefit from increased medical training and enhanced communication and accountability across the myriad of systems involved with these children. A medically fragile unit within the child welfare agency could promote optimal care for CMC. Participants advocated for more MFC placements, awareness of MFC programs, and support for foster parents. Finally, the health care system could better facilitate access to medical records and equipment.

Across the United States, there is a growing population of CMC.^1,2  Because of intensive care needs, some children cannot be cared for by their biological parents and require out-of-home placements.¹³  MFC is in increasing demand as a promising placement option offering consistent medical supervision in a family home, as opposed to a more-restrictive setting. To date, children in MFC have been largely invisible in the medical and child welfare literature.

With this study, we offer insight into how individuals from child welfare, an MFC agency, and the medical system collaborate to care for CMC. In our convenience sample of CMC in MFC, most entered MFC directly from the hospital, underscoring the importance for hospitalists to understand MFC, learn to navigate MFC services, and recognize their role in assuring high-quality care.

Pediatricians should be aware that MFC is a placement option for CMC who cannot be cared for by their families. Despite their significant daily care burdens, extensive problem lists, need for subspecialists, and dependence on therapies and technologies, MFC permits these children to live in a home setting. Despite their limitations, their care team describes them as well cared for with stable or improved health during MFC placement. This may reflect the additional resources and supports that children receive within MFC that they often did not get before entering care, including intensive case management, nursing support, and consistent health supervision.⁴  We have previously argued that providing a similar bundle of MFC resources and supports to biological families may prevent out-of-home placement for some CMC.⁴ 

With so many people involved in the child’s care, participants highlighted the importance of communication and accountability across team members as an essential component of MFC. Coordination of care is particularly important for CMC who are at risk for fragmented care.²⁵  This likely requires more intentional care team interactions. Currently, medical team members meet to plan a child’s medical management, and child welfare and MFC team members meet separately to discuss the child’s placement, but these care plans should be intimately informed by each other. Routine interdisciplinary meetings could ensure that the MFC placement is appropriate to deliver recommended care and services.

Hospital discharge can be delayed when the MFC placement process is prolonged, leading to unnecessary hospital days and costs. Hospitalists can reduce such barriers by facilitating the placement process, for example, contacting the hospital social worker when concerns arise about a family’s ability to care for their child. The sooner it is determined whether additional services and supports for the family will suffice or if foster care placement is required, the faster a determination can be made if MFC is an appropriate and available placement option. As participants in this and our previous study of health care providers describe, the search can take time because of a shortage of MFC homes.⁴  We have previously recommended the use of a hospital to MFC discharge protocol with jointly trained child welfare and health care staff to streamline the placement process.⁴ 

Once the child enters MFC, pediatricians across settings have a continued role in ensuring that the foster parent(s) and care team understand the child’s medical complexity. Health information is often lacking on entry into foster care.^26,27  Foster parents in our study identify obtaining medical records as an area in need of improvement. Because most CMC in our sample entered care because of medical neglect, their history may include multiple “no-show” appointments, resulting in missing records and fragmented care. Child welfare workers can help track down old records, but the pediatrician should then synthesize relevant information into a meaningful summary for the foster parents and other team members.^28,29  When children enter MFC from the hospital, sign-out from the hospitalist to the PCP and comprehensive discharge summaries may be the only medical information readily available for the larger care team to review. Although health systems may share electronic medical records across sites of care, there is a need to additionally link records across systems of care (ie, child welfare, schools) to enable information sharing among team members.

Fragmented care has high-stakes consequences for CMC, so ensuring children in MFC maintain a continuous relationship with a medical home should be prioritized. Half of the children in this study experienced a change in foster care placement and most had a change in PCP. Placement changes can exacerbate behavioral and health problems by disrupting relationships with medical providers³⁰ ; this is a particular risk for CMC who receive care from a network of medical providers, therapists, nursing companies, etc. Because many children enter MFC from the hospital, discharge planning should ensure that PCP and specialist appointments are arranged and additional services are in place. Outpatient providers can assist by expediting appointments for CMC in need of reestablishing medical care. A consistent medical home team (PCP, case manager, social worker, etc) could advocate for these children by facilitating coordination despite placement changes.

Child welfare team continuity is also important for CMC. Participants described the potential value of a specialized unit within child welfare for CMC. Equipped with specific CMC training, this team would oversee the linked medical and social needs of these children. A CMC unit would offer consistent teams with smaller caseloads, which may reduce caseworker turnover³¹  and promote continuity of care. A designated pediatrician with expertise in CMC could serve as a consultant to this special unit and maintain direct lines of communication. Models for medically fragile units do exist, such as the medical placement unit in Los Angeles County, California, and the medically fragile unit at Summit County Children Services, Ohio.^32,33 

We offer a deeper understanding of MFC as a placement for CMC with this exploratory study. To the best of our knowledge, this is the first study to describe the pathway into MFC after CPS referral, the children served, and the system of care delivery from the perspectives of various care team members. Although our group of children was small, we interviewed and compared perspectives of multiple team members for each child. Because CMC from only 1 MFC agency from 1 state were included, these results may not be generalizable. The English-language-only requirement for participants is another threat to generalizability. The overlap of care team members may reflect selection bias. Because QoL surveys were only completed by the foster parents, those results are limited to their perspective and may reflect social desirability bias. Challenges recruiting PCPs and biological parents limit their important perspective in our analysis. The fact that the MFC agency lacked contact information for over half of the biological parents suggests that parental engagement for CMC in MFC may be limited. Future research should examine the lived experience of biological families for children in MFC and explore barriers to parental engagement. Additional studies including the broader medical team (PCPs, outpatient subspecialists, inpatient providers, etc) would provide valuable perspectives.

MFC is a promising placement option for CMC whose biological parents are unable to appropriately provide for their intensive care needs. These children have complex medical and social problems and often spend prolonged periods of time in care. Because CMC often enter MFC directly from the hospital and require ongoing care from pediatric subspecialists, pediatricians across sites of care can benefit from understanding the placement process and the various systems and individuals involved with MFC. Pediatricians can play important roles in ensuring that CMC in MFC receive coordinated and high-quality care.

We thank Jennifer Shepard, CRNP, MBA, for her involvement in study design and data collection.