Stress and Anxiety Screening in Caregivers of Children with Pediatric Feeding Disorder

Introduction

One in 37 children under the age of five meet criteria for Pediatric Feeding Disorder (PFD), which is defined as an impaired oral intake that is not age appropriate and marked by nutritional, skill, medical, or psychosocial dysfunction (Kovacic et al., 2021). This condition can impact family functioning, such that daily activities (e.g., eating at a restaurant, traveling) and schedules are dictated by the child’s feeding (Kovacic et al., 2021). The cost and time involved in caring for a child with PFD, which may include medical appointments, therapies, medications, and/or feeding tubes, as well as lost wages related to caregiving responsibilities, add additional burden for caregivers (Greer et al., 2008).

The numerous challenges that caregivers of children with PFD face can lead to high levels of stress. Subsequently, caregivers of children with PFD are at an increased risk for mental health concerns, with stress and anxiety most frequently reported (Lindsay et al., 2017; Osborne et al., 2008). When caregivers experience increased rates of stress and mental health symptoms, it can lead to caregivers engaging in less responsive and supportive feeding practices, reduced effectiveness of caregiver-mediated interventions (Lindsay et al., 2017; Osborne et al., 2008), and can lead to poorer child mental health and health-related quality of life outcomes (Bakula et al., 2019). Family systems-level interventions, which address caregiver mental health, have the potential to mitigate these effects (Acri & Hoagwood, 2015; Brown et al., 2014). Therefore, while the primary focus of PFD care has historically been focused exclusively on the child, it is important that future studies assess feasibility and acceptability of addressing caregiver mental health as a part of PFD care.

Psychologists or social workers on a PFD treatment team can support caregiver mental health concerns through direct intervention or connection to outside referrals. However, screening for caregiver mental health concerns in pediatric clinics is only implemented in certain specialty populations (e.g., pediatric cancer, neonatology intensive care) and is not currently standard of care in pediatric feeding treatment settings (Joffe et al., 2025; Salley et al., 2024), despite comparable rates of mental health concerns (Bakula et al., 2023). Due to the known risk posed by not addressing caregiver mental health concerns, it is important to address barriers to screening. The critical next step is to assess the potential rate of positive screens in this population to understand the clinical demand associated with screening, and assess the acceptability of screening by caregivers. Therefore, the purpose of this study was to (1) assess rates of elevated stress and anxiety identified by brief screeners with caregivers of children with PFD and (2) assess the completion rate of a brief screener for caregiver mental health during an outpatient PFD clinic visit as an indicator of acceptability of screening by caregivers.

Methods

The current study is descriptive and exploratory with data drawn from the caregiver mental health screening procedures of a larger NIH-funded randomized clinical trial (KL2TR002367; PI: Bakula). All caregivers were recruited through an Interdisciplinary Feeding and Swallowing Program between July 2023 through March 2024 at a freestanding pediatric hospital in the Midwest. The clinic serves a large catchment area across two states, including patients with both public and private insurance. Referrals for patients in this clinic come from pediatricians or other pediatric subspecialists. The outpatient clinic has an interdisciplinary team of providers, including gastroenterologists, nurse practitioners, dietitians, psychologists, occupational therapists, speech therapists, social workers, and nurses. Patients are seen in the clinic every 3–4 months by the full team and by individual specialties for outpatient visits as needed between clinic appointments.

Caregivers were eligible to participate in this study if they were above the age of 18 and were a primary caregiver of a child aged 2–6 years with a diagnosis of PFD. During a routine clinic visit at the Interdisciplinary Feeding and Swallowing Program, a trained study coordinator approached caregivers to give an overview of the larger study, which provides intervention to support caregiver mental health, and obtain consent for participation in screening. Caregivers who provided consent then completed the screening process, which included completing measures of anxiety and stress on an iPad via REDCap. Caregivers were informed that if they screened high for anxiety or stress, additional mental health resources would be offered to them as part of the research protocol. Following the completion of screening, caregivers were provided immediate feedback on whether they met criteria for mental health resources through the study and asked if they would like to participate. If they were interested in resources but not through the research study, they were connected with the clinic social worker. Caregivers received monetary compensation for completing screening procedures. A total of 67 eligible caregivers were approached for participation in the screening process. Demographic data was not collected during the screening process to reduce the research burden on caregivers and increase the feasibility of incorporating screening into an existing clinic appointment. Descriptive statistics were computed to understand completion rates of mental health screening and levels of caregiver anxiety and stress. A power analysis was not done due to sample size and focus on feasibility within a pediatric subspeciality clinic at a freestanding pediatric hospital. This study was approved by the Institutional Review Board.

Results

Of the 67 caregivers that met eligibility criteria, 63 (94%) agreed to complete the mental health screening. The majority of participants were consenting as 1) mothers (n = 44), 2) mothers/fathers together (n = 10), and 3) fathers (n = 6). The remaining participants consented as mothers/grandmothers together (n = 2) or as a grandmother (n = 1). About one third (29%) of caregivers reported moderate (n = 12) to severe (n = 6) anxiety (M = 6.78, SD = 4.97). Most (75%) caregivers reported moderate (n = 36) to high (n = 11) stress symptoms (M = 17.43, SD = 7.12). See Table 1 for descriptive statistics of caregiver anxiety and stress levels. See Figure 1 for descriptive statistics of caregiver anxiety and stress levels displayed graphically. Further, 76.2% of caregivers met criteria for either elevated stress and/or anxiety, and therefore were offered additional resources through the larger clinical trial. If we were to increase the threshold for what is considered concerning and warranting additional resources to the severe/high range of anxiety or stress as the threshold, 23.8% of caregivers would meet criteria.

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Table 1.

Descriptive Statistics of Caregiver Anxiety and Stress Levels

Measure	% (n)	M (SD)
GAD-7	100 (63)	6.78 (4.97)
Severe	9.52 (6)	15.50 (0.84)
Moderate	19.05 (12)	12.17 (1.59)
Mild	31.74 (20)	7.00 (1.69)
Low	39.68 (25)	1.92 (1.44)
PSS	100 (63)	17.43 (7.13)
High	17.47 (11)	27.27 (3.04)
Moderate	57.14 (36)	18.61 (3.25)
Low	25.40 (16)	8.00 (3.12)

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Figure 1.

Descriptive statistics of caregiver anxiety and stress levels displayed graphically.

Discussion

Caregivers of children with PFD experience complicated stressors that place them at risk for anxiety and stress. In this study, nearly all caregivers agreed to complete screening (94%), which illustrates the willingness of caregivers to complete mental health screening. Of the 63 caregivers with a child actively receiving treatment for PFD screened, 60.3% of caregivers endorsed mild or greater anxiety and 28.6% endorsed moderate or severe anxiety. This high rate is notable considering that in the general population, only 15.6% of United States adults report mild anxiety on the same scale, and 6.1% endorse moderate or severe anxiety (Terlizzi & Villarroel, 2020). Further, 75% of caregivers endorsed moderate or high stress in this sample, compared to roughly 35% in a general adult population (Mirzaei et al., 2019). In other words, caregivers of children with PFD report anxiety almost four times as frequently as other adults and report high stress levels two times as frequently as other adults in the general United States population. These findings build upon our prior work showing that caregivers of children with PFD report higher levels of mental health concerns broadly, and that of Silverman and colleagues, who found higher levels of parenting stress (Bakula et al., 2023; Silverman et al., 2021). This also indicates that screening for caregiver distress would be high yield, as there would be a notable amount of positive screens that warrant intervention.

To our knowledge, this is the first study to evaluate the acceptability of caregiver mental health screening in pediatric feeding disorder clinics. Our findings suggest that screening for caregiver anxiety and stress is the critical first step to address this remarkably high burden on caregivers of children with PFD. Our results highlight that not only is screening important, but also is highly acceptable to caregivers, with 94% of caregivers approached consenting to participate. Many clinicians shy away from screening caregivers for their own mental health needs because they either feel uncomfortable asking about mental health, or they feel they do not have resources to offer caregivers if they endorse significant concerns (Barrow et al., 2022). The first barrier can be easily overcome with the recognition that caregivers find screening highly acceptable, and in fact want their anxiety and stress to be better addressed by their child’s care team for optimal family-centered support (Popov et al., 2021). The later barrier can be addressed through collaboration with social work and psychology colleagues in clinical settings to identify a list of mental health referrals for caregivers (Pfouts et al., 1963). Although perhaps more resource or cost intensive for clinics, ideal care for children with PFD would involve comprehensive support to address caregiver anxiety and stress. However, there is emerging evidence that imbedded services to address caregiver mental health within pediatric settings is financially self-sustaining once the initial infrastructure is created (Joffe et al., 2025).

Caregiver anxiety and stress are core features of the psychosocial dysfunction associated with PFD and are known to impact caregiving behaviors and caregiver feeding practices (Silverman et al., 2021). Without proper support for mental health needs, many caregivers may struggle to implement medical, behavioral, and dietary recommendations made by their gastroenterologist and feeding teams, which can impact child outcomes (Bakula et al., 2023). Recent research suggests that even brief interventions can meaningfully improve caregiver anxiety and stress, as well as caregiver engagement in treatment recommendations (Brown et al., 2014). Thus, brief, targeted models for intervention may be the most feasible way to integrate caregiver support into busy PFD clinical settings, given that our findings indicate that there would be a robust amount of positive screens (Bakula et al., 2023; Salley et al., 2024).

This study should be interpreted in the context of several limitations. First, demographic data were not collected as part of the screening process. While this decision was made with the goal of reducing research burden on caregivers and increasing feasibility of incorporating screening into an existing clinic appointment, this limits our understanding of whether some demographic factors may impact screening consent rates. Additionally, this data only represents caregivers attending a single freestanding pediatric hospital in the Midwest over several months and may not generalize to other treatment settings.

In sum, there is strong evidence of a high burden of stress and anxiety for caregivers of children with PFD. The most immediate actionable implication for providers is to work with psychology and social work colleagues to develop a system for screening and referring for support. Although there are existing models for integrating caregiver mental health support into subspecialty clinical care settings (McTate et al., 2021), such models have not been evaluated in PFD clinics, or even gastroenterological (GI) clinics more broadly. Future research is therefore needed to determine the optimal models of care for addressing caregiver anxiety and stress as part of routine clinical practice. This includes exploration of caregiver sociodemographic, food insecurity status, and cultural factors (e.g., ethnicity) to identify disparities in caregiver anxiety and stress to ensure equitable support. Additional research is also needed to better understand how rates of caregiver anxiety and stress vary across treatment settings (e.g., inpatient vs. outpatient) and region, including within the US but also across the globe. Finally, implementation studies focused on addressing caregiver anxiety and stress within pediatric feeding and GI clinics are essential.