The Family Perspective on Hospital to Home Transitions: A Qualitative Study
BACKGROUND AND OBJECTIVE: Transitions from the hospital to home can be difficult for patients and families. Family-informed characterization of this vulnerable period may facilitate the identification of interventions to improve transitions home. Our objective was to develop a comprehensive understanding of hospital-to-home transitions from the family perspective.
METHODS: Using qualitative methods, focus groups and individual interviews were held with caregivers of children discharged from the hospital in the preceding 30 days. Focus groups were stratified based upon socioeconomic status. The open-ended, semistructured question guide included questions about communication and understanding of care plans, transition home, and postdischarge events. Using inductive thematic analysis, investigators coded the transcripts, resolving differences through consensus.
RESULTS: Sixty-one caregivers participated across 11 focus groups and 4 individual interviews. Participants were 87% female and 46% nonwhite; 38% were the only adult in their household, and 56% resided in census tracts with ≥15% of residents living in poverty. Responses from participants yielded a conceptual model depicting key elements of families’ experiences with hospital-to-home transitions. Four main concepts resulted: (1) “In a fog” (barriers to processing and acting on information), (2) “What I wish I had” (desired information and suggestions for improvement), (3) “Am I ready to go home?” (discharge readiness), and (4) “I’m home, now what?” (confidence and postdischarge care).
CONCLUSIONS: Transitions from hospital to home affect the lives of families in ways that may affect patient outcomes postdischarge. The caregiver is key to successful transitions, and the family perspective can inform interventions that support families and facilitate an easier re-entry to the home.
- CCHMC —
- Cincinnati Children’s Hospital Medical Center
What’s Known on This Subject:
Transitions from hospital to home are stressful for patients and families. If unsuccessful, these transitions can lead to suboptimal patient outcomes, such as hospital readmission. Interventions that are family-centered are key to successful transitions from hospital to home.
What This Study Adds:
Hospital-to-home transitions affect families. This study provides an in-depth look into transition-related experiences, beliefs, challenges, and needs. The family’s voice can be used to inform the design of interventions aimed at improving care delivery during the transition period.
The transition from the hospital to the home is a vulnerable time for patients and their families. This experience is associated with increased family stress,1–4 which can occur with hospitalizations of any duration, including those for common, acute conditions that typically resolve without long-term medical sequelae.5–7 Stress can impede safe transitions home for children and families. The complexity of the discharge process and disjointed nature of the health care system can further complicate transitions8,9; 1 in 5 families report major problems with the transition, which may place children at risk of poor outcomes.3,10
Poor transitions may lead to suboptimal patient outcomes. Readmissions may reflect poor hospital-to-home transitions. In children, readmissions occur at a rate of ∼13%, considerably lower than that for adults.11–13 Other consequences include emergency department revisits, medication errors, primary care provider dissatisfaction with communication or confusion regarding discharge care responsibilities, patient or family dissatisfaction, and unanticipated out-of-pocket costs.14–20 Current care delivery models propagate fragmented transition processes that place undue burdens on patients, families, and the health care system.
The importance of successful transitions is recognized by leading academic societies in medicine, pediatrics, and nursing. These societies have identified the need for novel patient- and family-centered approaches to improve transitions in ways that ensure safe discharge to the home.15,21,22 Improvement efforts are directed at multiple facets, including communication with families and primary care providers, coordination of care, and family understanding of and comfort with management plans.21 Ideally, planning for discharge should begin soon after a patient is admitted and evolve during the hospitalization. The amount of information families receive about new diagnoses or complications of an existing diagnosis, adjusted medication regimens, or need for outpatient follow-up can be overwhelming and affect a family’s comfort and adherence to postdischarge care.23,24 Families may also experience a sense of abandonment if they are unable to contact their inpatient health care providers for postdischarge guidance.25
The design and implementation of interventions that address these issues and improve transitions are crucial to avoiding postdischarge complications. We expect that successful interventions will need to be family-centered. Thus, we sought to develop a comprehensive, qualitative understanding of hospital-to-home transitions from the family perspective and to identify commonly experienced barriers to successful transitions. A greater understanding of barriers, from the voice of the family, would allow us to more effectively tailor transition interventions.
This is an institutional review board–approved study at the Cincinnati Children’s Hospital Medical Center (CCHMC), a free-standing, academic children’s hospital with >500 inpatient beds. Approximately 8000 children are hospitalized annually for general pediatric conditions, with ∼85% of such admissions staffed by hospitalists.
Focus groups and individual in-depth interviews were selected as the optimal methodology to generate consensus themes about patient and family experiences and preferences during the transition period. Parents or caregivers of children discharged with common, acute medical conditions were eligible for recruitment if they were English speaking, had a child admitted to Hospital Medicine, Neurology, or Neurosurgical Services, and could attend a focus group within 30 days of discharge. Caregivers of children ≥18 years of age or those who were hospitalized for a psychiatric diagnosis, discharged to a care facility or institution, in the custody of the county or state, or were already receiving home health services were excluded.
The sample was stratified by the family's socioeconomic status because experts in focus group formation have noted that focus group participants are more willing to talk openly when among participants of similar backgrounds.26,27 Thus, socioeconomic strata were established by mapping participants who resided within socioeconomically similar areas. Census tracts, relatively homogeneous areas of ∼4000 individuals, were chosen as our primary geographic unit given their relative homogeneity and their utility in detecting socioeconomic gradients through a linkage to US Census American Community Survey poverty data.28–31 We defined thresholds that separated individuals into 2 socioeconomically distinct groupings on the basis of the proportion of patients with a home address in a census tract with <15% or ≥15% of the population living in poverty.31 These cut-points enabled us to ensure an equivalent number of eligible focus group participants within each stratum and diversity in our sample.
Parents or caregivers were recruited on the inpatient unit during their child’s hospitalization. Participants returned to CCHMC facilities for the focus group within 30 days of discharge. Although efforts were made to enhance participation by scheduling sessions at multiple sites and on weekdays, evenings, and weekends, 4 sessions yielded just 1 participant; thus, the format for those sessions became an individual interview. Child care was provided, and participants received an incentive gift card for attending.
An open-ended, semistructured question guide, developed de novo by the research team, was used to direct the discussion for focus groups and interviews (Appendix). As data collection progressed, the question guide was adapted to incorporate new issues raised by participants. Questions focused on aspects of the inpatient experience, discharge processes, and health system and family factors thought to be most relevant to patient- and family-centered outcomes. An experienced moderator (S.N.S.) used probes to further elucidate responses and expand discussion by participants. Sessions were held in private conference rooms, lasted ∼90 minutes, were audiotaped, and were transcribed verbatim. Identifiers were stripped and transcripts were reviewed for accuracy. After conducting 11 focus groups and 4 interviews, the research team determined that thematic saturation32 was achieved, and recruitment was suspended.
An inductive, thematic approach was used for analysis. Transcripts were independently reviewed by a multidisciplinary team of 4 researchers including 2 pediatricians (L.G.S. and A.F.B.), a clinical research coordinator (S.A.B.), and a qualitative methods expert (S.N.S.) to identify emerging concepts and themes related to hospital transitions and experiences. The varied perspectives of team members yielded a nuanced and robust interpretation of results and helped ensure that the data were analyzed in a nonbiased manner via investigator triangulation.32,33
During the first phase of analysis, investigators independently read several transcripts before convening to identify and define initial concepts and themes. A preliminary codebook was designed. The team continued to review and code transcripts independently, then met regularly to discuss coding decisions in a collaborative fashion and to resolve any coding differences through consensus.33 As patterns in the data became apparent, the codebook was modified in an iterative fashion: adding, subtracting, and refining codes as needed and grouping related codes. Coded data were maintained in an electronic database.
During subsequent analyses of the data, the team created a conceptual model that was used to categorize themes and depict relationships between themes. During this phase, findings were also reviewed in multiple forums with key stakeholders (parents, inpatient and outpatient pediatricians, and home health nurses) with the goal of further triangulation.
Sixty-one parents or caregivers of children discharged from CCHMC participated. Of participants, 87% were female and 46% were nonwhite; 38% were the only adult in their household, and 56% resided in census tracts with ≥15% of residents living in poverty (Table 1). These participant characteristics aligned closely with the demographic characteristics of the children and families admitted to the CCHMC.
Themes Resulting From Focus Groups and Individual Interviews
The initial analysis revealed 12 major themes and associated subthemes. Each of these themes and subthemes are nested within 1 of 4 overarching concepts. The 4 main concepts were as follows: (1) “In a fog” (barriers to processing and acting on information), (2) “What I wish I had” (desired information and suggestions for improvement), (3) “Am I ready to go home?” (discharge readiness), and (4) “I’m home, now what?” (confidence and postdischarge care). Using these concepts, we then created a model through which we could understand the family’s experience with the hospital-to-home transition as shown in Fig 1.
Participants described “a fog” as “And you kind of . . . you go into a fog when you come here. You forget what day it is, what time,” which pervaded their entire experience and affected their ability to process information (concept 1). The continuous interactions between the 3 remaining concepts reveal that these experiences do not occur in isolation. For instance, a caregiver’s confidence in caring for his or her recently hospitalized child is dependent on his or her comfort with discharge and with the information about the diagnosis and care received during hospitalization. The themes and subthemes that characterize each of the 4 concepts are depicted by representative verbatim quotes contained in Tables 2, 3, 4, and 5.
Concept 1: In a Fog
There were 4 major themes nested within this first concept highlighting a caregiver’s ability to process information: (1) mental exhaustion (this is too much), (2) handling uncertainty, (3) information overload, and (4) usability of information (Table 2). The emotional toll of having an ill, hospitalized child and the accompanying uncertainty was frequently voiced. The amount of information imparted on families during the transition created additional stress for many families. Regarding the usability of information, there were 2 subthemes: actual content received and the relatively common description of unclear messages.
Concept 2: What I Wish I Had
There were 2 major themes nested within this second concept: (1) information desired and (2) suggested improvements in the discharge process (Table 3). Concerning desired information, 2 subthemes were identified. The first, general instructions, describes the basic information caregivers want regarding their child’s care. Some caregivers acknowledged that the instructions they were given were too general. Others commented on the content of and mode in which they would have preferred to receive information. The second subtheme, red flags/what to watch for, highlighted a strong desire by caregivers to receive details about when to worry and how to manage their child’s recovery postdischarge. On the basis of their own experiences, caregivers also shared suggestions for improvement in the discharge process that included adding discharge coordinators and patient advocates to help ease the hospital-to-home transition. They also recommended that information and plans be reviewed in clearer and more consistent terms by health care team members.
Concept 3: Am I Ready To Go Home?
There were 2 major themes nested within this third concept: (1) emotional discharge readiness and (2) clinical discharge readiness (Table 4). Emotional discharge readiness was often described in different ways, sometimes by the same caregiver. Many discussed feeling relieved about their child getting better and their associated desire to go home. At the same time, many also identified anxiety from the experience of having a child hospitalized. Others acknowledged their unease and lingering concerns with discharge. Clinical discharge readiness related to a patient’s clinical progress. Some noted that parental intuition helped them to know when their child was better and ready to be discharged; others relied completely on the medical team’s criteria for discharge. Still others commented on the desire for a complete recovery before discharge and the dissatisfaction felt with being sent home too soon.
Concept 4: I’m Home, Now What?
There were 4 major themes nested within the fourth concept: (1) knowing who to call, (2) bridging the gap (desiring a call or nurse home visit), (3) caring for a sick child, and (4) confidence in caring for a sick child (Table 5). These themes show the stress accompanying the change from 24-hour in-hospital care delivery by an interdisciplinary team to being home where caregivers are responsible for supporting the child through to recovery. Even knowing who, or how, to call with questions after discharge was often unclear. Those who thought that the inpatient team was the best venue for questions did not necessarily know how to get in touch with them after discharge; others were unsure of what their pediatrician knew about their child’s hospitalization. Some expressed a desire for follow-up after discharge via phone or a nurse home visit so as to feel supported and receive answers to lingering questions. This desire for a phone call or home visit was especially the case for those who described challenges with keeping up with a child’s changing care needs and managing a slow recovery or a worsening clinical course. In addition, the barriers and challenges faced by caregivers postdischarge greatly influenced their ability to confidently care for a recently hospitalized child.
We used qualitative methods to understand how the transition from the hospital to home is experienced by families, highlighting informational challenges and varying perceptions of discharge readiness and confidence in providing postdischarge care. The family perspective, or voice, is critical as we develop interventions aimed at improving the effectiveness and safety of the hospital-to-home transition. Health care providers and the health care system increasingly place a premium on interventions that can limit the risk of postdischarge complications. With the expectation that the most successful interventions will target the needs and wants of families, the voice of this key stakeholder, the family, is essential to identify and address barriers to successful transitions.
Various studies, many in adult populations, have created interventions to facilitate a safe transition home, generally altering care models with the aim of decreasing postdischarge health care utilization and costs.34–42 Care transition theory and other models support that engagement and needs of key stakeholders are important to inform systems-level interventions and improve outcomes.34,43–46 As a result, some have incorporated the family or patient perspective when evaluating previously implemented interventions.47–50 Others have shown that family-centered interventions improved certain outcomes, such as satisfaction, discharge readiness, and medication adherence and, in some cases, decreased health care utilization. However, a recent review that included pediatric studies involving only emergency department-to-home transitions highlights that, in pediatrics, family-centered interventions are not routinely informed by solicited input from families.35 Smith and Daughtrey3 surveyed parental perceptions after discharge to determine their needs and to identify areas necessitating improvement, with results generally supporting our findings; however, this study was limited by the use of phone surveys and interviews. Thus, there remains a gap in the literature with respect to how families view the hospital-to-home transition period and how their input could be translated into targeted family-centered interventions.
Our conceptual model (Fig 1) highlights key characteristics of the transition period. Our first concept, related to being in “a fog,” is supported by existing literature related to the stress of hospitalizations on families. It is best described in complex patient populations, including those cared for in NICUs and PICUs.1,5–7,51,52 Our findings extend this previous work by describing, in detail, why caregivers of a child hospitalized with an acute illness feel enveloped by this “fog” and how its pervasiveness can prevent them from appropriately processing information that may be critical to caring for their child. Understanding how a parent’s potentially limited ability to process information gathered during even a brief hospitalization for an acute illness is important when developing interventions intended to improve both transitions home and patient outcomes.
The second concept relates to information sought by caregivers. The desire for a better understanding of red flags (ie, what to watch for) came through clearly and consistently. This red-flags concept, a type of educational strategy, is well described in adult studies.8,53–55 Others have investigated the information desired by patients before discharge, primarily via surveys or qualitative interviews.3,4,44 In our study, participants expressed a desire for specific details about worrisome clinical signs or symptoms and findings that prompt additional evaluation. Interventions designed to address informational needs and gaps identified by caregivers may improve feelings of discharge readiness and perceived preparation for transition home.
This readiness for discharge is the third concept we address, considered from both a clinical and emotional perspective. A caregiver’s perspective on discharge goals typically goes beyond the objective findings of his or her child and incorporates an emotional component. Thus, a caregiver’s assessment of his or her child’s readiness for discharge may not always align with the health care team’s assessment: the health care team may define clinical goals that must be fulfilled before discharge, perhaps with inconsistent family input. Such misalignment can lead to miscommunication or contention if not proactively identified and addressed. The lack of discharge readiness and/or difficulty with coping skills after discharge is associated with greater odds of health service reutilization.23,24 Finding ways to enhance a caregiver’s readiness for discharge by improving communication and incorporating shared decision-making may decrease undesired postdischarge utilization while also increasing satisfaction.
Many identified their limited understanding of how to care for their child, and their reduced confidence in doing so, as a major postdischarge concern. Many also noted feeling unsure about whom to call with questions after arriving home. As a result, some expressed a desire for a follow-up phone call or postdischarge home nurse visit to help them adjust to their re-entry into the home and to address lingering questions or concerns. There is evidence, primarily in newborn and high-risk adult populations, that postdischarge home nurse visits or phone calls can improve outcomes such as decreased health care utilization.35–42 Such evidence, in combination with our findings, reinforces the need for further study of visits or calls that are tailored to meet the needs of families after hospital discharge. Determining their impact on both family-centered outcomes in addition to health care utilization is critical.
We acknowledge limitations to our study. First, this study was conducted at a single academic institution with English-speaking participants. Therefore, the included participants may not be reflective of patients and families who seek care in other more ethnically or linguistically diverse settings. However, at CCHMC, the patient population is diverse both demographically and clinically, which was reflected in focus group and interview participants. Although it was a convenience sample of participants, our sampling strategy ensured socioeconomic diversity. In addition, recall bias is possible because participants were asked to reflect on a discharge experience that occurred in their past. We attempted to minimize this bias by holding sessions no more than 30 days from the day of discharge. Finally, qualitative methods are inherently concept- and hypothesis-generating, not confirming. Still, the interpretive nature of our analysis emerged through multiple analytic iterations that included a diverse team of researchers and added scrutiny and feedback from a larger group of stakeholders.
This study gathered rich input from caregivers of pediatric patients admitted with an acute illness. We identified barriers to smooth transitions home, providing an in-depth look at the family experience with hospitalization and re-entry to the home. We developed a conceptual model that integrates our findings and elucidates connections between experiences, beliefs, challenges, and needs. This model, which encompasses the voice of the family, can now be used to inform the design of interventions aimed at improving existing systems.
Appendix: Focus Group and Individual Interview Question Guide
Can you describe how you felt when your doctor or team of doctors told you that your child was ready to be discharged and go home? Walk me through the process when you first heard that your child was going to be going home.
Did you feel your child was ready to be discharged?
Did your child’s health care team (doctors and/or nurses) ask you if you felt that your child was ready for discharge? AND How did your child’s health care team (doctors and/or nurses) involve you in the discussion about discharge?
Some of you may have had a child (this child or another child in family) hospitalized before. If this is the case, do you remember if your experiences with preparing for discharge were better at that time? Worse?
What do you think the doctors and/or nurses should make sure you know about when it comes time for you and your child to leave the hospital? What information was crucial for you to know?
Thinking back to conversations you may have had with doctors/nurses around the time of discharge, how did you feel about them?
Do you recall asking questions of the doctors about your child’s health/discharge processes? Do you recall asking questions of the nurses about your child’s health/discharge processes?
In what ways did you feel that the doctors and nurses in the hospital prepared you for discharge? In what ways did you feel unprepared?
Overall, how satisfied were you with the transition from hospital to home?
What was easiest about the discharge process? What was the best part?
What was most challenging part about the discharge process? What was the worst part?
If you were in charge of improving the discharge process for families, what changes would you make, if any? This includes any type of change to make things easier for families, even if it doesn't apply to your situation or recent experience.
What was it like getting your life back in order after returning home? What was the hardest part for you? What was the easiest part, what went well?
Did the doctors advise you to follow up with your child’s pediatrician or family doctor or another doctor (like a specialist)?
During the first few days after discharge, what questions or concerns arose? What about a week later? Was there ever a time that you felt uncomfortable taking care of your child? Anything you felt unsure about?
Did you experience any difficulties related to medications for your child after discharge?
Did you have concerns about your child's condition getting worse after they got home from the hospital? Several days later?
H2O Study Group
Katherine A. Auger, MD, MSc; JoAnne Bachus, BSN; Monica L. Borell, BSN; Lenisa Chang, MA, PhD; Jennifer M. Gold, BSN; Judy A. Heilman, RN; Joseph A. Jabour, BS; Jane C. Khoury, PhD; Margo J. Moore, BSN, CCRP; Rita H. Pickler, PNP, PhD; Angela M. Statile, MD, MEd; Heidi J. Sucharew, PhD; Karen P. Sullivan, BSN; Heather L. Tubbs-Cooley, RN, PhD; and Christine M. White, MD, MAT.
- Accepted September 9, 2015.
- Address correspondence to Lauren G. Solan, MD, MEd, University of Rochester Medical Center, 601 Elmwood Ave, Box 667, Rochester, NY 14642. E-mail:
Dr Solan participated in conceptualization and design of the study, designed the question guide, participated in data collection, reviewed audio transcripts for accuracy, analyzed the data, and drafted the initial manuscript; Dr Beck participated in conceptualization and design of the study, designed the question guide, participated in data collection, analyzed the data, and reviewed and revised the manuscript; Ms Brunswick recruited participants, reviewed audio transcripts for accuracy, analyzed the data, entered data, and reviewed and revised the manuscript; Ms Sauers recruited participants, participated in final data analysis, and reviewed and revised the manuscript; Ms Wade-Murphy participated in design of the question guide, participated in final data analysis, and reviewed and revised the manuscript; Drs Simmons and Shah conceptualized and designed the study, participated in final data analysis, and critically reviewed the manuscript; Dr Sherman participated in conceptualization and design of the study, designed the question guide, moderated the focus groups and interviews, reviewed audio transcripts for accuracy, analyzed the data, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted.
All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute or its Board of Governors or Methodology Committee.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: This work was partially supported through a Patient-Centered Outcomes Research Institute (PCORI) award (HIS-1306-0081 to Dr Shah).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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