Coping Factors for Caregivers of Children With Medical Complexity During Hospitalization Free

This study is a qualitative analysis of semistructured interviews and was designed according to established Standards for Reporting Qualitative Research.⁷  This study was approved by the local institutional review board.

Patients were identified from the inpatient and outpatient complex care services at a single, urban children’s hospital in the Northeast through electronic health record registries (each containing ∼150 CMC). Inclusion criteria included children aged 1 to 18 years with multiple chronic conditions and technology-dependence (eg, G-tube or tracheostomy), which is aligned with the nationally accepted CMC definition.¹  Eligibility criteria for caregivers included: over 18 years of age, English-speaking, and legal guardian of the child. We recruited and enrolled caregivers by telephone and collected self-reported demographic information during this call. Purposive sampling was used in attempt to recruit a diverse cohort of caregivers based on race, ethnicity, and gender by oversampling non-white, Hispanic and male caregivers. Caregivers were compensated with a $20 gift card for their participation.

The study team developed an interview guide that included questions gathering child and caregiver demographics and eliciting caregiver perceptions of how they cope with their child’s hospitalizations guided by a conceptual framework of caregiver adjustment to pediatric chronic disorders.⁸  These questions were initially developed by study team members and edited with input from members of our institution’s Pediatric Family Advisory Council (PFAC), a group primarily composed of caregivers whose children have received significant care at our children’s hospital. Pilot testing of interview questions was conducted with 2 PFAC volunteers and modifications were made based on feedback. Interview questions are listed in Table 1, and the interview guide instructed interviewees to probe for caregiver responses related to hospitalizations.

The interviews were semistructured and primarily conducted by a medical student (K.D.K.), who was mentored and trained by an experienced qualitative interviewer (N.D.B.). Interviewers asked open-ended questions followed by probing questions to clarify and further explore caregiver perceptions. The interviews were conducted through videoconference software, lasted between 30 and 60 minutes, and occurred between June and August of 2021. Caregivers completed interviews from their homes or place of work. The interviewers were not previously known to the caregivers, and none of the interviewed caregivers had children who were hospitalized at the time of interview.

The interviews were audio-recorded, transcribed by a Health Insurance Portability and Accountability Act (HIPAA) compliant vendor, deidentified, and imported into MAXQDA coding software for analysis.⁹  Our coding method was a modified grounded theory approach, where we assigned process and in vivo codes to the transcripts through open and initial coding.¹⁰  To create our codebook, 2 study team members (K.D.K. and N.D.B.) completed an initial round of coding by independently reviewing 3 transcripts and then developed a final codebook by comparing and combining codes. Utilizing the final codebook, 3 team members (K.D.K., M.F., and N.D.B.) then coded all of the interviews, processed disagreements collaboratively, and grouped codes into categories to inform further analysis. Final themes were identified through interpretative analysis and by group consensus with the entire study team, which consisted of complex care physicians, psychologists, and qualitative researchers. We performed interviews until we reached thematic saturation and additional interviews no longer produced new data.¹¹ 

To strengthen our themes via triangulation, we presented our findings to the PFAC (n = 10 caregivers of children with multiple chronic conditions) and modified our themes and wording to incorporate their feedback.¹² 

We interviewed 14 caregivers (11 mothers and 3 fathers) of CMC aged 2 to 16 years old. All CMC had been hospitalized within 5 years of the interview and the median number of hospitalizations per child in the 2 years before the interview was 3 (interquartile range 2–6). CMC were hospitalized for respiratory and gastrointestinal illnesses, surgeries, and technology malfunctions. Participant demographics are listed in Table 2. Our analysis yielded 3 themes of factors that contribute to coping for CMC caregivers while their children are hospitalized, which are presented below and in Table 3, along with illustrative quotes.

Caregivers described that during the acute episode of their child’s hospitalization, they focused on their child’s needs and sacrificed meeting their own needs. One parent stated, “I’m the one that’s got to do it. You know, I’m the one that’s got to be the guy to keep everyone going, you know. I mean, it’s a role to hold,” emphasizing the deep responsibility that caregivers feel (Caregiver 7). When asked from where they draw the strength to get through hospitalizations, caregivers responded with the idea of, “just taking care of my family” (Caregiver 17).

Caregivers spoke about the process of building trust with their child’s medical and nursing teams to mitigate the stresses of hospitalization, stating “I felt pretty confident she was safe… I just put a lot of trust in the people taking care of her” (Caregiver 1). They highlighted that sharing the direct caregiving activities with the nursing team both alleviated stress and introduced stress at different times. Caregivers identified continuity with providers, consistent intrateam communication, and high-quality nursing care as factors that helped them build trust with their child’s team.

Caregivers described that they became familiar with the daily hospital flow and routine, stating, “I think we’ve been there enough that most of the time, it’s mostly a routine. You wait for the doctors to come and do the rounds and then you look forward to ‘What am I going to order off the cafeteria menu?” (Caregiver 1) Caregivers also shared their process of adapting their self-care practices to the hospital setting. One caregiver stated, “I walk and try to keep my mind occupied, try to focus on [child]… That was the only thing I knew how to do” (Caregiver 56). Caregivers described doing exercise videos, walking the halls with a sense of mindfulness, eating meals with family, and talking with loved ones over the telephone to maintain their emotional and physical wellness.

We found 3 factors that impact the CMC caregiver coping process when their children are hospitalized: feeling that they are prioritizing their child’s needs over their own, feeling trust in their child’s interdisciplinary team, and feeling their self-care practices are well incorporated into the hospital routine and flow. Although there are likely many additional factors associated with caregiver coping, our study highlights factors specific to the CMC population that should be considered during future intervention development as an opportunity to enhance caregiver support.

Caregivers of CMC spoke about the importance of focusing their energy on their child’s needs during hospitalizations. Despite these findings, the child’s interdisciplinary healthcare team, comprised of doctors, nurses, social workers, and other providers, should consider that caregivers foregoing their own needs is a potentially concerning coping strategy. We would encourage interdisciplinary teams to consider openly discussing with caregivers how they desire to participate in their child’s care while balancing taking care of their own personal needs during the hospitalization. Affirming the caregiver role in this manner aligns with patient and family-centered care recommendations and could help caregivers feel better supported during a hospitalization.^13,14  Caregivers identified trust in the interdisciplinary team member’s knowledge and consistent communication as a factor that supported their coping. Although the value of continuity of care and open communication with CMC caregivers is well described, trust is a complex construct and more research is needed to understand the nuances of how trust enhances caregiver coping with hospitalizations of CMC.^15–17 

We also identified that caregivers feeling that their self-care practices are incorporated routinely into the hospital flow promotes their coping abilities. When a child is hospitalized, many aspects of the caregiver’s life are disrupted, including their ability to balance family functioning, work, sleep, and practice their established self-care activities.^18–21  Our findings suggest potential value for interventions that help caregivers adapt their existing self-care practices to the hospital setting.

Limitations of our study include that the sample was predominantly mothers with limited racial, ethnic, and language diversity, and the sample size was small at a single site, potentially limiting identification of coping factors that may be specific to caregivers who identify as minorities. However, a qualitative study such as ours was appropriately context-based, not primarily intended to achieve generalizability, and a sample size of our study is expected to reach thematic saturation.²²  Other limitations include that personal and professional identities of the study team may have biased data collection from the caregiver respondents and analysis. Lastly, the impact of the child’s illness severity on caregiver coping was not studied, though is deserving of future research.

We found that CMC caregivers’ abilities to cope with their children’s hospitalizations were impacted by them prioritizing their child’s needs over their own, the extent to which their child’s interdisciplinary team develops trust with them, and adapting their existing self-care practices to the hospital setting. A child’s hospitalization, especially for CMC, is a stressful event and there is a growing need to support caregivers.

We thank the members of the Pediatric Family Advisory Counsel at Golisano Children’s Hospital, University of Rochester under the leadership of Tricia White, Carla LeVant, and Jennifer Johnson for their support and feedback throughout the duration of this study.