Caregiver Experiences in Pediatric Hospitalizations: Challenges and Opportunities for Improvement

We conducted individual qualitative interviews with caregivers of pediatric inpatients admitted to an academic hospital in the Pacific Northwest from December 2018 to June 2019 as a subgroup of a larger ongoing study examining social risk epidemiology among hospitalized patients.¹⁷  Eligibility criteria included age 16 years or older, the parent or legal guardian of an admitted child aged 18 years or younger, and proficient in English or Spanish. Potential participants were identified by the treating physician and study team using the active inpatient hospitalist patient census and screened on a consecutive basis after meeting eligibility criteria.¹⁷  Caregivers with specific characteristics (diversity in child age, medical complexity, zip code, and readmission status [initial admission or readmitted within 30 days of a previous discharge]) were prioritized in the presence of time constraints. Only 1 caregiver per family was eligible to participate. Consent was obtained while the child was hospitalized. Participants completing interviews received a $30 gift card. Recruitment continued until thematic saturation was achieved.¹⁸  The study was approved by our institutional review board.

Upon consent, caregivers completed a demographic survey before their child’s discharge date.¹⁷  Interviews were scheduled at a time convenient for the caregiver within 30 days postdischarge for nonreadmitted patients and during the current admission or within 1-week postdischarge for caregivers of readmitted patients. Interviews were conducted by 1 of 3 trained research assistants (1 of whom was a native Spanish speaker), supervised by trained qualitative researcher (DrPh). Clinicians (physicians and pediatric psychologists) were not involved in individual interviews. If the caregiver was unreachable by phone at the interview time, 5 additional attempts were made over multiple days. All caregivers provided additional verbal consent at the time of the interview.

The research team developed semistructured interview guides based on previous study team findings with this population, with research centered in an interpretivist paradigm.^17,19  Guides were pilot tested with 2 hospital parent volunteers from a patient advisory council to ensure feasibility and appropriateness, resulting in 2 separate guides: 1 for caregivers of children with their first admission and 1 for readmissions (Supplemental Information). Both included open-ended, in-depth questions exploring caregivers’ hospitalization experience and solicited feedback for potential interventions, with probing for clarification or elaboration.

To assess for threats to objectivity and synthesize results, individual interview findings were triangulated with 2, 60 to 90 minute in-person focus groups. One group included parent advisors (PA) recruited from the hospital parent advisory panel (n = 3) and Oregon’s Title V program for Children and Youth with Special Health Care Needs (n = 1) who were not part of the qualitative interviews but had a hospitalized child within the prior 2 years. Another focus group was comprised of pediatric hospitalist physicians and general medicine floor nurses (medical staff [MS]). Triangulation allows for adjustments and/or confirmation of the researchers’ subjective analysis of the data and provision of additional expertise beyond that of the research team.^20–24  Focus groups goals were to assess face validity, contextualize themes, and suggest potential interventions based on themes identified. Informed consent was obtained. We used a semistructured focus group guide, first asking the same questions from individual interviews and then introducing and discussing key themes from individual interviews (Supplemental Information). Each focus group was moderated by 2 research team members, digitally recorded, transcribed verbatim, and analyzed using the previously created framework. PA focus group participants received a $30 gift card; medical staff were not paid.

Interviews were digitally recorded and professionally transcribed verbatim through a transcription service. Protected health information was removed. Transcripts were imported into the qualitative software program Dedoose²⁵  to facilitate thematic data analysis to identify, analyze, and report patterns based on respondents’ answers.

Analysis followed a thematic inductive framework in which themes are identified from the raw data rather than a priori models.^26–28  Two team members independently identified initial codes and themes in 3 to 4 transcripts. After discussion with the entire research team, an initial coding scheme was created, and each transcript was coded independently by 2 different team members. Successive transcripts were independently coded by 2 team members who met regularly to discuss emerging codes, resolve coding differences through consensus with the larger team, and update transcripts with new codes. New codes were iteratively added to the framework when new ideas emerged. Emerging themes and subthemes were ultimately organized into a structured framework that classified caregiver needs during hospitalization and interventions to mitigate these issues. Themes included were either frequently endorsed or applied to specific family experiences that may be particularly challenging (single parent, extended hospital stay). All transcripts were read by at least 2 team members. The coding team identified illustrative quotes from individual interviews.

Demographic and clinical data, when available, were summarized using descriptive statistics. Data from individual interviews and focus groups were analyzed separately. In the focus groups, no new themes were identified, suggesting the most important needs within our sample had been identified; the focus groups led to further definition and clarification of existing themes which are described below.²⁹ 

Of the 24 caregivers initially enrolled into the study, 10 caregivers consented but were lost to followup (including 2 Spanish-speaking caregivers), resulting in 14 completed interviews (median duration 47 minutes). Of these, 7 each were caregivers of readmitted patients (RA parent) or newly admitted patients (Parent). All were female, identified as mothers, and were English speaking. Seventy-two percent identified as white; 21% identified as Latinx. Fifty percent had a high school or less education. Demographics, in aggregate, are reported in Table 1.

Four parent advisors participated in the PA focus group (PA parent). Their children were admitted for various diagnoses: appendicitis, complex congenital heart disease, liver transplant, and panhypopituitarism. Seven medical staff (3 physicians [MD]and 4 nurses [RN]) participated in the MS focus group. Emergent themes and suggested interventions are discussed below.

Among the 14 caregivers, difficulties faced with their child’s hospitalization were anchored on physiologic and psychosocial challenges and were linked to caregiver capacity and communication challenges. Representative quotations from individual caregivers regarding each theme and caregiver-suggested interventions are depicted in Tables 2 and 3, respectively.

Caregivers brought up concerns grouped as physiologic challenges: sleep, personal care or hygiene, and food (Table 2). Sleep was a particular challenge: “The hardest thing about being in the hospital is that there is somebody coming in every hour and it is really hard to get rest… (RA parent 22).” Children may be admitted or transferred at any time and are woken up for rounds or examinations early in the morning. Staff or hospital equipment noises resulted in caregiver sleep-deprivation.

Caregivers described how personal hygiene issues affected how they felt about themselves, including their presentation to the care team: “I just didn’t have anything [oh gosh, like hair stuff, and brushing teeth] … so, that was just pretty stressful, to not have any of my personal stuff with me (Parent 6).” Another parent affirmed: “You don’t think about your own needs, so you don’t think about the last time you showered… ate… breathed fresh air (Parent 7).” Those with an urgent admission may not have had extra clothes with them and limited laundry capabilities.

Two major concerns regarding food access at the hospital emerged: food affordability and caregivers not wanting to leave the bedside to obtain food. The majority of caregivers commented on high food costs and cost accumulation over a hospitalization. “If I didn’t have the money, [I] couldn’t order food or food’s not accessible to me. I was kind of in shock [how much it cost] (parent 6).” Another parent commented, “After 2 weeks, that really adds up to a lot (RA Parent 8).” Caregivers cited frustration with navigating food access during their child’s admission. Caregivers of readmitted patients discovered available food options only after multiple visits. Multiple caregivers shared reluctance to leave the child’s bedside to obtain food elsewhere in the hospital, fearing they would miss a visit from the doctor.

The MS focus group acknowledged and supported caregiver concerns for sleep, hygiene, and food. They noted parents might have missed open cafeteria hours if they arrived in the evening. The MS group expressed frustration and sadness knowing some parents go hungry because of cost, “It’s awful to see it in their face that they feel uncomfortable because they can’t afford that, and you can tell they choose not to eat. That’s terrible (MS RN 1).”

Psychosocial challenges observed include feelings of isolation and acknowledgment of high stress levels. One parent remarked about infection isolation, “The first time I was ever exposed to literally being trapped in my child’s hospital room. I’ve never had that happen before… (Parent 13).” Caregivers described mental stress juggling multiple roles, including acting as primary caregiver for the hospitalized child, responsibilities for other children at home, and work obligations. Parent 13 commented, “You have parental responsibilities regardless of whether you’re at home or you’re at the hospital.” Single parents may have unique struggles as well, “It’s hard being a single parent with not a lot of outside help and having to stay at a hospital (Parent 10).” PA parent 2 noted, “The importance of parents needing resources – needing somebody to simply just pop in and remind them that they need to take a walk, or they need to get some fresh air… because … sitting in the hospital room and being stuck with your thoughts…it’s never a good feeling. It’s extremely stressful.”

The MS group brought up a concept they termed as “shaming,” specifically related to the idea that staff may judge a family based on their availability and presence at bedside. Nurses were especially vocal on this issue: “I feel like there’s still a lot of shaming around the parents that decide…to go home and take care of their other kids or their outside [lives]… (MS RN 3).” Nurses felt parents might sense this, contributing to additional guilt juggling multiple responsibilities.

Caregivers recognized that meeting physiologic needs is crucial for them to function as advocates for their child. “If we’re not fed and we’re sleep-deprived, then how am I going to make good decisions that in my world are life or death? If this worry was minimized, then I have the energy to spend where it really needs to be (PA parent 4).” One parent reported feeling overwhelmed and had challenges concentrating because of stress and inability to process all the information given to them: “It’s very, very overwhelming. Even half the things they tell me, it doesn’t even go into 1 ear, because you’re so overwhelmed, and you’re also just trying to get your child healthy (RA parent 8).” Another parent lamented a care decision: “If I had been clear-minded… if I hadn’t been up for going on over 24 hours of going through all that…I think I needed more professional help in that moment, to make decisions for my son (Parent 12).” Medical staff agreed: “I think it’s unfair to ask parents to make these hard decisions or be thinking clearly if they haven’t eaten for a long time. They haven’t slept, and they’re making these decisions (MS MD 4).” PA parent 2 noted, “If you don’t take care of yourself, you’re not going to be able to be there for your kid in the way that you want to be.”

Communication challenges, particularly information flow between families and medical teams, arose during daily rounds and at discharge. A parent noted, “It was a little stressful at discharge…trying to get everything put together, like transport, trying to make sure we had all of our supplies we needed. It was kind of like everyone was just like discharge…we need to get you out of here (RA parent 15).” Caregivers cited challenges communicating with large hospital teams. Additionally, the complicated structure of health teams, including students, made it hard to know who was in charge and who was responsible for delegated tasks. PA parent 1 commented, “There are so many players in the game. That’s the problem. Information gets passed and lost…residents change, attendings change, nurses change…we’re the only constant.” One nurse stated, “We can always work to improve communication. It’s really important to embrace the family, as they know their child better than anybody. They’re the experts in care and collaborating – they’re an equal member of our team (MS RN 2).”

When probed about how hospitals can address these challenges, one suggestion was to ask a caregiver directly about an issue (for example, whether they had eaten that day) and to acknowledge the stressors. Several caregivers noted that dialogue between medical staff and the parent could be helpful. “You know, sorting out who they are a little bit. ‘How did you get up here? How are you planning to get home? And are you stressed about any of this right now (RA parent 22)?”

Additionally, caregivers advocated that families should be screened for help with food, transportation, etc., irrespective of insurance as a proxy for socioeconomic status. “Always offer, always ask if we need anything, and always bring them in and say, ‘Thought you guys might need some of this stuff (RA parent 8).” Another caregiver endorsed, “There are people who are in an okay financial situation who also need a food voucher. So, just identifying those needs and asking a couple questions around that. ‘I have money, but I can’t access it, because I don’t even have my purse with me,’ right? Like, ‘I don’t even have a debit card with me. I definitely have no cash (Parent 12).” Other caregiver-suggested interventions are illustrated in Table 3.

In this study, we identified personal challenges caregivers faced when caring for their hospitalized child: physiologic (sleep, personal hygiene, and food) and psychosocial (feelings of isolation, mental stress). Without these challenges addressed, caregivers described impaired communication dynamics with the medical team, particularly during rounds and at discharge.

Whereas many hospitals focus their quality improvement efforts on specific points in the hospitalization or from the perspective of clinical stakeholders,^30,31  these critically important quality improvement initiatives may be even more effective if other caregiver needs, especially physiologic and psychosocial, are prioritized and acknowledged. This work adds to growing literature around the personal struggles that families face with a hospitalized child. Although other studies have recognized and created interventions around select issues related to the inpatient stay from the caregiver perspective (decreasing vital sign checking to improve sleep³² ; spatial characteristics of hospital rooms³³ ; food insecurity³⁴ ; and improving communication during rounds^35–37 ), our work highlights the magnitude of these issues: taken singly (lack of food access) are important, but when combined (lack of food, sleep, mental stress), potentiate burdens for families during a hospitalization.

The basis of this work was intended to inform hospital QI efforts. As such, future work should make use of a guiding conceptual framework. Maslow’s Hierarchy of Needs – in which having basic needs met is a necessary prerequisite to pursuing a fulfilling life³⁸  – has been applied to healthcare contexts (physician burnout, foster care, and hospitality services in hospitals),^39–42  but not from the lens of the caregiver. From a theoretical perspective, caregiver interview responses fit well with Maslow’s Hierarchy of Needs; caregiver needs of food, sleep, and hygiene would be considered physiologic needs, whereas issues related to isolation, stress, and caregiver-provider communication difficulties may correspond to needs related to safety, belonging, and esteem (see upper section of Fig 1).

We postulate that downstream consequences of these unaddressed needs may influence perceptions and understanding of the care plan, confidence in decision-making, and engagement in care, all of which are vital in optimizing family-centered care (lower section of Fig 1).⁴³  In the transactional theory of stress, the complexity of an individual’s life experiences, stressors, and environment results in challenges to normal coping mechanisms-potentially resulting in difficulty navigating interactions during hospitalization.⁴⁴  Frustration and stressors during the care experience may further erode trust in the healthcare system, potentially impacting engagement with the medical system, and thus child health outcomes.⁴⁵  This impact may be accentuated in vulnerable families, including those with limited financial resources or language barriers.^46,47  We anticipate exploring this framework in future work with the goal to improve the quality of life of hospitalized patients and families.

Our study has several limitations. The study was conducted at a single, tertiary care academic medical center and with a small sample size that may not reflect the context in other hospitals. As with any qualitative study, biases in caregiver report (recall) and coding (confirmation bias) are possible. Independent parallel coding in addition to broader team review were implemented to mitigate any inherent bias in trustworthiness, reliability, and dependability. Nonclinical research team members conducted interviews and coded transcripts to reduce confirmation bias. Focus groups served as stakeholder checks to review data and thematic interpretation.²³  We recognize that participants were predominantly white, and additional themes related to biases and structural racism were not raised by participants. We had a substantial loss to follow up postenrollment, particularly among Spanish-speaking families. Additional efforts focused on families with limited English proficiency and caregivers identifying as non-white would facilitate and inform culturally proficient QI work.

In conclusion, this study suggests that helping caregivers address their physiologic and psychosocial needs may be critical to improving the experience of hospitalization. Caregivers in this study highlighted specific interventions to offer help and support to deal with each of these challenges. These may inform future quality improvement efforts endorsed and supported by families.

We thank Annie Bateman RN, our hospital Quality Improvement Team, and Tamara Bakewell, MA, from the Oregon Center for Children and Youth with Special Health Needs for their assistance with the focus groups and championing this work on the frontlines.