Patient and Family Experience With Discharge Directly Home From the Pediatric ICU

We conducted a single-center exploratory mixed-methods study of children discharged directly from the PICU of the Institution is Sainte-Justine Hospital. A qualitative description¹⁵  using thematic analysis of the patient and family experiences surrounding DDH was conducted to complement and expand on a quantitative assessment of patient and family anxiety and comfort. Institution is Sainte-Justine Hospital is a pediatric tertiary care center with a combined medical and surgical PICU that has over 1000 admissions per year, of which approximately 15% are discharged directly home.¹² 

A convenience sample of eligible patients discharged from the PICU between February 24 and June 30, 2021 was selected. We included parents or caregivers of patients in the PICU who were expected to be DDH within the following 12 hours. There were no restrictions on whether family members or caregivers could participate. We excluded patients who (1) had parents or caregivers with a significant language barrier in either English or French, (2) were not under the care of a family member, (3) were receiving comfort only care (expected to die at home), and (4) were temporarily discharged from the hospital.

Written parental and caregiver consent to participate was obtained, and patient consent for separate interviews was obtained for patients over 14 years of age with the capacity to consent. For children under 14 years of age, the assent for the interview was sought. This study was approved by the Research Ethics Board of Institution is Sainte-Justine Hospital.

We sought to understand the patient and family experiences through semistructured interviews at 3 time points: on the day of PICU discharge, 7 days after discharge, and 28 days after discharge. On the discharge day, the parents and families were approached for in-person semistructured interviews and questionnaire completion. Interviews were conducted in the patient’s room or in a private room, according to parental preference. On days 7 and 28 postdischarge, the patients and families were contacted by telephone to complete a shorter interview.

A semistructured interview guide was created a priori by the investigators, structured around: (1) understanding critical illness, (2) feelings surrounding DDH, (3) preparation for discharge, and (4) home support and resources (Supplemental Table 2). The interview guide was piloted by a patient-partner (J.D.-R.) (person, generally patient or caregiver, who collaborates with researchers as a member of a research team) and a clinician to ensure readability and comprehensiveness. The interviews used open-ended questions, were audio recorded, and were conducted by trained staff (N.R., M.E.F.) in English or French, according to their preferences. The data were collected until saturation was achieved. For qualitative analysis, all audio interviews were transcribed verbatim using NVivo software (QSR International Pty ltd. 2020), and deidentified.

For the quantitative assessment of patient and family comfort, we used a 5-point Likert scale, ranging from “very uncomfortable¹  to very comfortable⁵ .” To measure anxiety related to DDH, we used the Generalized Anxiety Disorder Questionnaire (GAD-7).¹⁶  This screening tool scores from 0 to 21, with ≥10 indicating moderate anxiety, with consideration for referral. The tool has been validated for use in adults, with good internal consistency and criterion validity.¹⁶ 

The thematic analysis followed the approach of Braun and Clarke,¹⁷  in which themes were built from codes. Qualitative interviews were conducted by an independent team member to identify major themes and establish a codebook. A handful of interviews were independently coded by the principal investigator (N.R.) to verify themes, codes, and review analysis. The discussion and grouping of themes were reviewed by an expert in qualitative methods (F.C.). Themes unrelated to discharge were discarded and overlapping themes and subthemes were grouped together. Quotes were selected to illustrate the themes and were translated where appropriate. Thematic analysis was undertaken in the interview language to maintain the original meanings, but themes and subthemes were coded in English. The verbatim quotations were translated into English for publication and annotated “M” for mother, “F” for father, and “C” for child.

Quantitative assessments of demographics, comfort, and GAD-7 scale results are presented as numbers, proportions, and medians (interquartile ranges [IQRs]). Both comfort and anxiety measures were evaluated separately for patients and families with a short PICU stay (≤28 days) and prolonged PICU stay (>28 days). The study reporting followed the Standards for Reporting Qualitative Research¹⁸  supported by the Equator network.¹⁹ 

The study included 39 participants from 25 families (34 approached, 74% consent rate), with 24 mothers, 11 fathers, and 4 patients participating in the interviews. All families completed the interview on discharge day and day 7 postdischarge, and 21 of the 25 completed the 28-day postdischarge interview (Fig 1). Overall, children tended to be infants or preschoolers (n = 20, 80%), without comorbidities (n = 16, 64%), and had nonsurgical diagnoses (n = 16, 64%) (Table 1). The majority were not ventilated during PICU admission (n = 15, 60%) and had a PICU length of stay of <5 days (n = 19, 76%). Three patients had medical complexity with organ support dependency (oxygen, ventilation, and/or gavage feeding), 2 of which were returning home for the first time after prolonged PICU stay. Within the 28-days, 6 (24%) of the 25 patients returned to the emergency department (reasons: suicidality, pilonidal cyst, rash, respiratory distress, fever, and upper respiratory infection); of these, 2 were readmitted to the hospital (psychiatry and PICU).

Thematic analysis identified 51 subthemes clustered into themes according to the topics addressed in the discharge interviews: (1) understanding critical illness, (2) feelings around DDH from the PICU, (3) preparation for DDH, and (4) posthospitalization support. Overall, parental experience with intensive care and DDH was fairly congruent. The major themes in understanding critical illness, include experiencing stress and fearing death. In feelings around DDH from PICU, principal themes were feeling stress and anxiety, confidence and miscommunication, whereas in preparation for DDH, understanding home care was most important, and in posthospitalization support utilizing varied support systems and accessing primary care were principal themes. The sections below and Supplemental Table 2 outline each of these themes and subthemes with exemplar verbatim quotes.

Most parents expressed a clear understanding of the need for intensive care for their children, whether for postoperative monitoring, respiratory support, or invasive therapy. This understanding was associated with themes related to experiencing stress or anxiety and the subtheme of fearing death. Many parents associated the PICU with stress and anxiety about their child’s outcome and a realization of the severity of their child’s disease; “It is like the worst, of the worst, of the worst… we really talked about death” (20-M) (Translated from French). One mother described the PICU admission as “a shock” and fearing immediately the potential loss of her daughter; “[…] and then, I am automatically in shock. I said ‘God. Will I lose my daughter? Will she die?’” (17-M) (Translated from French). Others described feeling helpless with the progressive deterioration of their child’s illness, leading to PICU admission. Feeling uncertainty remained common as parents did not know what to expect from the care, interventions, and outcomes. Seven days postdischarge, most patients recovering from critical illness at home had returned to their daily activities. Despite this, lingering trauma persisted for some parents: “For sure now, there are little psychological and emotional impacts” (7-M) (Translated from French).

The recurring themes were experiencing anxiety and stress. Parents expressed that they were not certain that they could provide appropriate childcare. A subtheme characterizing this anxiety was anticipating and identifying problems at home, with concern for recurrence of the presenting illness and the management of this recurrence - “My question is, ‘when is the next crisis’? How long it will take? The damages it may cause to the brain, it’s a lot of worries.” (11-M) (Translated from French). Feeling uncertain about recovery from new diseases was another subtheme related to this anxiety. On the other hand, parents of children with reversible conditions often felt confident and secure about their ability to care for their child at home after critical care. Many parents were feeling eager to return home and regain normalcy in their lives. They felt that explanations were satisfactory and empowered by knowing the signs and symptoms to watch for.

Although the experience was positive for many families, it was negative for others. Three families (12%) reported uncertainty, discomfort, and skepticism regarding home discharge. One family was surprised at going home because of a miscommunication with the medical team; their child presented with repeated suicidality and neither the parents nor the child felt ready to return home, scoring a 2 of 5 on the Likert scale (uncomfortable with home discharge). This patient was readmitted within 7 days and parents expressed knowing that the discharge was too premature: “We think the discharge was too soon.” (12-F) (Translated from French). Another family expressed skepticism regarding preparing emergency seizure medication that was not tested while in the hospital and felt that a longer period of observation would have been justified, rating their comfort as 3.5 of 5. A family member with a chronically home-ventilated son worried that they would not detect an early lack of tolerance to new ventilator settings. All 3 families were feeling disappointment at 7 days and 2 were readmitted during the study period. They all initially rated their comfort with a home discharge of less than 4 out of 5.

Most parents had a good understanding of home care in the preparation for discharge. They received explanations for the administration of medications, side effects, and symptoms to watch for upon return. Others felt they needed guidance for the management of new medications or treatment plans. “They haven’t told me anything. The medication… the care needed afterwards? […] she had psychological services before, but it’s stopped since the holidays… do we go back to that?” (12-F) (Translated from French). This highlights inconsistencies in the communication provided by the discharging team and lends credence to the potential role of post-PICU follow-up in supporting families. On day 7, the mother of a child with persistent fever was happy to receive a follow-up phone call because she was unable to get in touch with the surgical team.

When asked about posthospitalization support, families described utilizing a broad range of support systems, including family, friends, and community resources, with outreach describing supporting goods and finances. Social media played an important role in parents of children with chronic diseases, finding support for parents living with similar challenges. “So I go on Facebook, […] I’ll go into groups of parents that have the same situation basically. It gives me a chance to ask ‘did you go through this? And how did you?…’” (8-M). Many families have mentioned challenges in accessing healthcare services, including medical specialists and community services, were mentioned by many families.

The coronavirus disease 2019 (COVID-19) pandemic has had a significant impact on the support and resources for certain families. Not only was access to primary and urgent care limited, but public health protection also reduced home support provided by family members or extended families. One parent described the added challenge of accessing physicians during the pandemic: “Then all that is accentuated by the pandemic. The family doctors are hardly reachable; they don’t want to see them” (19-M) (Translated from French). Despite difficult access to care, virtual care was not specifically mentioned as support by families. Another mother described her husband being stuck out of the country during COVID-19 travel restrictions for non-Canadian nationals and having to manage work, her child with chronic epilepsy, and her other children. Extended family support was also reduced as older family members (grandparents) were encouraged to self-isolate themselves.

Lastly, financial support was identified as a priority for a single parent whose daughter was awaiting surgery, “I don’t want to stay home without pay. […] Work doesn’t want. They were saying that it isn’t me who is sick […] How will I live?” (17-M) (Translated from French).

A secondary analysis highlighted a variety of themes that were specific to long-stay patients (>28 days, n = 3) with complex medical conditions, including managing equipment at home, frustration with equipment, defining roles as parents, organizing daily care, and ending a long-term relationship with the healthcare team. All 3 families experienced equipment problems within 7 days of departure, either with ineffective nebulized medication, home suctioning, or issues with a feeding pump. Families deal with these challenges in different ways, including visiting the day center, calling a liaison nurse, and returning to the PICU for support. Although all the families had their equipment issues addressed, this generated significant stress and additional healthcare visits. Theme saturation may not have been achieved in this subgroup.

Of the 39 participants interviewed on discharge day, 30 (77%) rated their comfort with DDH from PICU as “comfortable” or “very comfortable” (≥4 of 5) (Fig 2). Three participants (parents) rated their comfort as “uncomfortable” (8%), and 6 (15%, 4 parents, 2 patients) as neither comfortable nor uncomfortable. The median score for the GAD-7 on discharge day was 8 (IQR 4–12, n = 39) for parents, with 16 reporting clinically significant anxiety (score ≥10, n = 10 mothers, 5 fathers, and 1 child) (Fig 3). The GAD-7 scores declined in parents on day 7, and by day 28, 13 of 16 were below the referral range. In parents of complex care patients, the GAD scores increased on day 7 (n = 3). In adolescent patients, the anxiety levels were lower than those of parents 4.25 (IQR 4–8).

This study is the first to describe patient and family experiences of DDH in the PICU. Qualitative analysis complements and expands on quantitative measures of comfort and anxiety. Overall, patients and their families exhibited mixed or paradoxical feelings about DDH. Although they were eager and happy to return home without going to the ward, many were stressed and anxious about recovering from the disease at home. This anxiety has been described in patients discharged from the ICU to the ward.²⁰  Some of these feelings were abated by supportive staff communications. Discharge preparation is crucially important to provide parents with the knowledge, guidance, and confidence to return home. Anxiety reduced in parents over time but less in adolescents, underlining the need for ongoing support postdischarge in this age group.²¹ 

An important finding of this study was that parental discomfort on the day of discharge was potentially associated with their readmission. This highlights that parents may have insight into predicting poor outcomes postdischarge. The medical team’s consent to discharge home did not necessarily translate into the patient or family’s comfort or readiness for home. Miscommunication regarding discharge timing can disrupt the parents’ trust and confidence in the medical team. Parents must be informed and prepared early for the possibility of DDH, as buy-in is essential. We believe that parental discomfort with DDH should be addressed immediately to prevent readmission and increase utilization of health services postdischarge.

Previous studies have highlighted that staff communication, professional attitudes, and inconsistencies in the coordination of care are major themes in experiences in the PICU.²⁰  Appropriate communication, family education, coordination of resources, and follow-up are necessary for confidence and comfort after discharge,^22,23  potentially preventing readmission.

In children with medical complexity, studies have shown that discharge bundles and follow-up clinics are associated with a decrease in readmission rates.²⁴  Both are potentially feasible and effective tools for PICUs to prevent readmissions or emergency department visits. This study focuses primarily on short stay PICU patients, rather than long stay patients or children with medical complexity (CMC). In this case, short stay PICU patient follow-up and support after discharge may need to be stratified based on patient risk and care needs and may not require all the coordinated care^25,26  and cost that some CMC require.^27,28  Indeed, the CMC patients likely resemble complex NICU patients in the coordination of care after discharge. In our short stay patients, the posthospitalization support, including the impact of the COVID-19 pandemic, varied between families, underlining the need to tailor postdischarge support to the family.

Limitations include single-center and the limited number of complex care patients (and CMC) included in the study. Recognizing that these families have different experiences and realities than short-stay patients and acknowledging the limited sample size with lack of saturation, we chose to include them in this study. However, the analysis of this population requires more data and a large sample size. In addition, the interview guide focused primarily on the discharge process and may have failed to capture other important experiences of these individuals. Strengths include the diversity of patient and family recruitment, a high consent rate, and almost complete follow-up of all families at the 3 time points.

Although the child may be clinically ready for discharge, readiness should consider the capacity, availability, and preparedness of caregivers to care for their child in the posthospitalization phase. Understanding parents’ expectations and experiences with discharge directly home are key concepts to address their satisfaction and needs and to optimize the provision of effective and safe family centered care.

Despite feelings of anxiety, many families felt comfortable with DDH in the PICU. Increasing our understanding of the patient and family experiences of discharge from the PICU will help to better support these patients and families during the transition from PICU to home.