Paid Family Caregiving for Children With Medical Complexity

Study reporting is guided by the Consolidated Criteria for Reporting Qualitative Health Research¹⁰  and was conducted in partnership with Family Voices Colorado, a grassroots advocacy group run by parents of children with special healthcare needs.

Semistructured interviews were conducted with CNA family caregivers (FCs), primary care providers (PCPs), and home health administrators (HHAs). PCPs and HHAs were included to examine the perspectives of healthcare workers familiar with the program. The study was approved by the Colorado Multi-institutional Review Board.

FC participants were eligible if they were the parent or a relative of a child with medical complexity less than 19 years old and provided licensed CNA care to the child at home. Since Hispanic and rural families may have lower access to pediatric home health,^11,12  we aimed to include at least 5 caregivers with Spanish as their preferred language and 5 living in rural areas. The FC interview guide was piloted with 5 participants and amended with their feedback before study use. PCPs of the same children were identified through the electronic health record. HHAs were administrative leaders of Colorado-based home health agencies that provide pediatric home healthcare services, such as CNA and home nursing care. The purposive sample strategy was based on available funds and time limits associated with the study’s grant funding.

Eligible FCs were recruited using a recurring electronic health record report that identified children who were discharged from our children’s hospital with home CNA services in the prior 3 months. A professional bilingual research assistant experienced in qualitative interviews recruited FCs by phone. PCPs and HHAs were invited to participate via phone or e-mail. Because of the 2020 coronavirus disease 2019 (COVID-19) restrictions on in-person research, consenting and interviews were conducted over the phone by the research assistant. All participants were compensated with gift cards. Interviews lasted approximately 30 to 60 minutes.

Interview guides were based on the Impact-on-Family scale,¹³  a review of published literature on CMC and research team discussions. FCs were asked to describe their child’s medical conditions, their daily routines, and hours worked versus paid. Interview questions focused on the program’s benefits, burdens, and implications for the child’s and FC’s quality of life (QoL). Demographic questions included age, race or ethnicity, marital status, education, relationship of FC to child, and urban or rural home (Appendix 1 in Supplemental Infomation).

Interviews for PCPs and HHAs broached similar questions about the program’s benefits, burdens, and implications for the child and FC’s QoL, (Appendices 2 and 3 in Supplemental Infomation). PCPs were asked about their clinician type (pediatric, family practice, etc.), practice setting, and the percentages of children (and CMC) in their practice. HHAs were asked about their role in the agency and number of years spent in that role.

Semistructured interviews were recorded, professionally translated, and transcribed verbatim. Although we prompted participants with questions about positive and negative aspects of the program, we chose not to apply a preemptive conceptual framework because of the exploratory nature of the work. We used an iterative, inductive strategy, drawing on qualitative content methodology and reflexive team analysis.^14,15  The transcripts were coded and analyzed using ATLAS.ti version 8.3.20 (Scientific Software Development, GmbH, Berlin). Three study team members (M.B., C.C., J.Z.) independently reviewed and coded a subset of transcripts to identify and define inductive codes. The research team met monthly to review the coded transcripts and to reconcile any discrepancies in the code definitions until a final codebook was developed and used to code the remaining transcripts. The coded data were analyzed to identify key themes summarizing the benefits, drawbacks, and impacts on patients and caregivers QoL of the family CNA model. After a final set of themes was developed, the executive director for Family Voices Colorado facilitated a virtual presentation of results to the Children’s Disability Advisory Committee to the Colorado Department of Healthcare Policy and Financing to elicit additional feedback from community advocates and policymakers.

Semistructured interviews were conducted with 25 English- and Spanish-speaking FCs, 10 HHAs, and 10 PCPs between September 2020 and June 2021. Children of FCs (age range: 1–18 years; 40% female) had variable chronic conditions, including congenital genetic and metabolic disease, cerebral palsy, seizures, and intellectual and developmental disabilities (Supplemental Table 2). Many relied on medical technologies such as oxygen, feeding tubes, central lines, and ventilators, and almost all had additional home health services such as skilled nursing and physical, occupational, or speech therapies.

FCs were primarily the child’s mother (76%), sister (8%), brother (4%), father (4%), and grandmother (4%). Seven (28%) FCs were Spanish-speaking and 8 (32%) lived in a rural community (Table 1). PCPs were either physicians or nurse practitioners from various practice types, including a children’s hospital complex care clinic and urban or rural community pediatric or family practice clinics. HHAs were administrators or managers from local home health agencies that hire FCs as CNAs. In general, FCs and HHAs were more knowledgeable about the program than PCPs, though pediatricians with a higher mix of CMC were more familiar with the program.

The following themes summarizing the benefits, drawbacks, and impacts on patients’ and caregivers’ QoL of the family CNA model (Fig 1; additional quotes, Supplemental Table 3).

FCs wanted to become their child’s CNA because of their emotional and moral commitment to care for their child as a good parent. FCs perceived that they could provide better care for their child than a stranger, even if it meant working many more hours than compensated or sacrificing their own goals or wellbeing.

The idea that FCs could provide higher quality care was pervasive, partly because some had poor experiences or were distrustful of outside home healthcare providers, and others did not have consistently available home CNA support

Interview participants regularly agreed that the program is beneficial for CMC, not only because of the consistency, superior quality, and better coordination of home healthcare, but also because the child is cared for by an emotionally invested and committed caregiver.

Additional benefits were attributed to the FC’s accumulation of expertise and confidence in managing the child’s healthcare issues. Respondents determined that working within the family CNA model provided FCs with more discerning medical judgement and enhanced expertise in managing complex health and equipment issues.

Interview participants viewed the economic benefits of the program as indispensable but also flawed in some cases because of under-compensation for hours worked or lack of pay during a child’s hospitalization (particularly problematic for prolonged admissions). However, the overriding sentiment was that the program was “life-changing,” and a way for families to stay afloat financially or avoid reliance on public assistance programs.

Many FCs were burdened by overwork, under-compensation for hours worked, exhaustion, and occupational injuries. For the most medically complex and chronically ill children, it was understood that around-the-clock caregiving was required.

Because of the chronic nature of care, FCs were prone to sleep deprivation, chronic “physical and mental” exhaustion, poor self-care, injury, and social isolation. Some FCs felt that they were neglecting other family members, and a few disclosed mental health conditions such as depression and anxiety.

Rarely, FCs expressed that they had little alternative because of financial needs or distrust of outside workers.

Nonetheless, interview participants recognized several sources of emotional benefit for FCs, including joy of caregiving, providing financially, knowing that their child was receiving good care, opportunity to spend more time with the child, and developing additional skills and competencies. The latter advantage was viewed as a direct result of the training in some cases, but also stemmed from intimate involvement in the care plans that allowed FC’s to be more well-informed advocates for their children. FCs unanimously recommended the program to prospective families for several reasons, including the acquisition of new skills and correct techniques to care for their children.

Although social isolation and loneliness were acknowledged drawbacks for some, the family CNA program was seen to add social and emotional supports through new social networks and access to agency nursing oversight or expertise.

Respondents acknowledged that some families faced program access barriers because of immigration status, low health literacy, language barriers, or rural home location. Barriers were also attributed to bureaucratic complexities of eligibility and enrollment or to shortages of access to training and testing, particularly for rural families.

There was an appreciation for the opportunity for FCs to use the training as a springboard to other employment opportunities or career growth. However, CNA training often had heavy focus on geriatric or nursing home care. Course length varied widely from 10 days to several months, and class schedules were sometimes inflexible to accommodate difficult circumstances such as health care emergencies.

Some of the FCs learned of the program through happenstance (eg, through a hospital nurse, family of another patient, or family friend) and stakeholders acknowledged lack of awareness for the program.

When study results were presented to the Children’s Disability Advisory Committee to the Colorado Department of Healthcare Policy and Financing, committee members reflected on the importance of continued funding for this essential program, queried whether there were unmet needs among children with mental and behavioral health conditions, and expressed a desire to address FC respite and inequitable access. Committee members also identified the need for more pediatric specific training and better access for non-English speaking FCs (Fig 2).

This study offers a glimpse into the lives of employed family CNA caregivers through qualitative methods. Our study indicates consensus among many local stakeholders that it is a critically needed program with many positive attributes. Yet, there are acknowledged harms that can be addressed to improve the model’s effectiveness, some of which align with previously identified priority areas for research and systems improvements for children with medical complexity.^16,17 

Extant literature focuses on the demands of informal or unpaid caregiving and the implications of traditional pediatric home healthcare insufficiencies.^5,18,19  This study is novel in describing a caregiving model that addresses these deficiencies, particularly pediatric home health workforce shortages, quality problems, and associated parental job loss and financial distress. The program enhances caregiver confidence and self-efficacy, facilitates emotional bonding with the child, and provides structure for both social and professional supports. It is also seen as positive for the child’s health and wellbeing and serves as an important safeguard against the exacerbating impacts of a pandemic on families of CMC.^20,21 

However, the program also poses significant emotional and physical harms to family caregivers, who are often exhausted, and is some cases, socially isolated, burned out, and experiencing deteriorating physical and mental health. Although it is hard to tease apart the effects of chronic caregiving, the program bears some influence because of the allure of financial relief and by enabling the “good parent” heuristic for these caregivers.²²  This belief system prioritizes the parent’s sense of duty to ensure that the child feels loved and is well cared for, while also empowering the parent to be an informed advocate. In so doing, the program may engender overwork, social isolation, and other challenges to physical health and emotional wellbeing. This study suggests that mental health screening and corresponding interventions such as respite care are needed to alleviate social isolation, physical injury, and emotional distress.^23–25 

From the perspective of healthcare equity, the family CNA program undoubtedly improves access to high-quality home healthcare and financial security for many vulnerable and underserved patients and families. Yet, within the training process and administration of the program, there are evident disparities based on preferred language, immigration status, health literacy, and home location. Similar themes were described in a recent study of caregiver and provider experiences of home healthcare quality for children with medical complexity.²⁶  Community advocates reflecting on our findings also raise concerns about ineligibility for patients with severe behavioral or mental health conditions. Awareness of institutional policies, systemic biases, and funding gaps that enable these disparities should be acknowledged as a first step to designing a more equitable and accessible family CNA model of care.²⁷ 

Finally, the CNA training would benefit from standardization, a focus on pediatric complex care, flexibility through virtual education options,²⁸  and appropriate health literacy and translation of course and test materials. This would help to improve client preparedness, satisfaction, and successful completion of training and licensing requirements.

We evaluated a unique program in 1 geographic setting, and therefore, benefits, harms, and lessons learned may not be directly applicable to other paid family caregiving models in other states. Future studies comparing these programs may yield important insights. We did not assess costs associated with this program that would be of interest for future implementation.²⁹  COVID-19 curtailed our ability to recruit for in-person interviews, and there may be a difference between participants that interview in-person versus by phone and there is a chance that we may not have captured caregivers who were not able to access the program or had more negative views of the program (ie, selection bias). Finally, the COVID-19 pandemic may have influenced responses because of associated increases in stress and social isolation and disruptions in available home health services.

Given the disarray of the current pediatric home healthcare landscape²  and the extensive home health needs of these families, it is imperative to develop and disseminate novel home healthcare models for CMC.³⁰  Colorado’s family CNA model holds promise for replication and dissemination to other communities but requires additional research and program improvements to make it a more equitable and sustainable program.

CMC

children with medical complexity

CNA

certified nursing assistant

FCs

family caregivers

HHAs

home health administrators

PCPs

primary care providers