Hospital discharge intervention developed in a dialogical way with families to prepare them to care for children with chronic diseases at home: Mixed methods study

Abstract

A convergent parallel mixed methods design with qualitative data collection embedded in a quasi-experimental study was developed to examine the potential of three modalities of preparation for hospital discharge of the families of children with chronic diseases in terms of uncertainty levels and management of the disease at home. Caregivers of these children were divided into three groups: two experimental groups and one control group. Two scales were applied: one measured family management, and the other evaluated uncertainties in relation to the disease. In addition, an in-depth interview was conducted. Wilcoxon’s test and the integrated response index were used in data analysis to compare performance between the groups. Inductive thematic analysis was employed for the qualitative data. The data were integrated, comparing the groups before and after preparation for hospital discharge. Twenty-five family caregivers completed this study. Data integration showed that the intervention group, in which the families developed planning to prepare for discharge in a dialogical way with professionals, presented better perceptions regarding care management when compared to structured guide and usual care groups. Participation of families in planning for hospital discharge showed a reduction in uncertainties regarding the disease and better care management of children at home.

Keywords

patient discharge chronic disease child preschool infant family health education

Introduction

Family caregivers of children with chronic diseases (FCCCDs) need to be prepared during hospitalization to provide home care (Klein et al., 2021; Kuntz et al., 2021; Bom et al., 2021). However, parents of hospitalized children do not feel prepared after discharge to manage the disease at home (Góes and Cabral, 2017; Klein et al., 2021; Kuntz et al., 2021; Sawin et al., 2017; Smith and Kendal, 2018; Weiss et al., 2017). This is because this preparation for hospital discharge only occurs occasionally and without listening to families’ anxieties and questions. Health professional was focusing on the disease and using traditional teaching based on content transmission and demonstration of techniques decontextualized from the family life context (Góes and Cabral, 2017; Smith and Kendal, 2018).

Difficulties experienced by FCCCDs in managing the disease at home after hospital discharge arise from weaknesses in some areas such as lack of health education process, lack of appreciation of family singularities when preparing for discharge, and lack of attention by professionals on hospital teams in ensuring care follow-up in care networks after hospital discharge of children with chronic diseases (Toomey et al., 2016). Additionally, poor communication between professionals and families and lack of information (LI) support interferes negatively in the relationship (Smith and Kendal, 2018) and minimize questions.

This inadequate family preparation for hospital discharge has a negative impact on how they cope with the disease and on the prevention of new hospital admissions of children (Weiss et al., 2017). One obstacle identified in a study carried out at a university hospital in the southern of Brazil referred to health professionals’ difficulty cooperating with each other for hospital discharge planning, with a predominance of individualized and non-integrated actions (Kuntz et al., 2021). These actions can lead to hasty discharge, without clarifying questions of families about the care of children with chronic diseases, and don’t guarantee safe hospital discharge (Klein et al., 2021). Thus, it is necessary to identify more effective methods to minimize uncertainty about diseases and to improve care management in this population.

Disease management refers to a way in which families actively respond to diseases in different health care situations (Bousso et al., 2017). Disease-related uncertainties can influence this management. Greater uncertainties are, greater difficulties for families to understand the disease process (Madeo et al., 2012; Fedele et al., 2011). This interferes with decision-making and skills to manage care, generating physical and emotional overload in structuring, organizing or predicting the care demands for children with chronic diseases (Barbosa, 2012).

A scoping review identified different strategies for performing hospital discharge preparation in adults (MacDonell et al., 2020). Usual preparations for hospital discharge were evaluated in a study carried out in India that found a significant association between reporting of poor-quality hospital discharge with death and with chronic disease decompensation at 18 weeks of follow-up (Humphries et al., 2020). Preparation for dialogical hospital discharge was analyzed in a Danish study carried out with patients with chronic obstructive pulmonary disease, which identified a strengthening of knowledge and self-management of diseases after hospital discharge (Andersen et al., 2017). Dialogical way is an intervention that embraces specific needs of families, with back-and-forth dialog, in a participative and interactive way, as opposed to a prescriptive approach (Freire, 2015). This discharge preparation strategy can be defined as health coaching (MacDonell et al., 2020).

According to Stephens et al. (2017) and Weiss et al. (2017), there is few studies that investigate interventions for hospital discharge in FCCCDs and the complexity of this preparation. Given the lack of interventional studies, we proposed the following research questions:

• How do different modalities of preparation for hospital discharge impact levels of uncertainty and management of the disease by FCCCDs?

• When comparing preparation for hospital discharge developed in a dialogical way (Freire, 2015) with families, and preparation conducted by a structured guide and usual care, are there differences in levels of uncertainty and management of the disease by FCCCDs at home?

Preparation for hospital discharge mediated by dialogicity has same results as have usual or structured preparation;

Families exposed to hospital discharge preparing using dialogical way will have higher quality of discharge teaching with reducing uncertainties and better management of the disease by FCCCDs than families exposed to usual hospital discharge or structured preparation.

Aim

To examine the potential of three modalities of preparation for hospital discharge of families of children with chronic diseases in terms of uncertainty levels and management of the disease at home.

Materials and methods

Design

Convergent and parallel mixed methods approach was used, QUAL + QUAN (Creswell and Clark, 2017), with integration of results generating a third set of data for final interpretation. We opted for a quasi-experimental study, before-and–after, which made it possible to compare statistical performance obtained before and after preparation for hospital discharge. Descriptive-exploratory qualitative study illustrated and favored identifying aspects of preparation for discharge process that facilitated or hindered FCCCDs’ learning. After a separate analysis, quantitative and qualitative results were mixed for final interpretation (Lorenzini, 2017; Lorenzini et al., 2021).

Sample and settings

A purposeful sampling was applied in this study. Family members were recruited by first researcher on first day of children’s hospitalization. Pediatric Department of a university hospital of regional importance for hospitalization of children/adolescents with chronic diseases in a Brazilian state, with 24 active beds for clinical and surgical treatment and one day hospital ward. All participants were included in the sample following of this inclusion criteria: family members primary caregivers of children with chronic diseases in the age group from birth to 12 incomplete years old; and children hospitalized in the period from November 2017 to November 2018. Exclusion criteria were: family caregivers of children with a non-definitive diagnosis; the children hospitalized for a surgical procedure of ostomy reversion; children hospitalized for over a year; and family caregivers had no telephone contact to schedule a second timepoint of data collection.

All FCCCDs and their hospitalized children were eligible to participate in the study were invited and had 24 hours to decide to accept or not to participate in the research. Three had no interest in participating, and two withdrew from the study (in timepoint 1). Participants were divided into three groups according to hospital admission order: first was the group for which the family intervention was developed in a dialogical way, second was usual care group, and third was the structured guide group, following successively.

Study procedures

All groups received usual care hospital discharge preparation offer by professionals' staff of the Pediatric Department, as described for the UCG. The type of discharge preparation in each group was presented below.

UCG (only usual care): Professionals’ staff of the Pediatric Department passed on information that they considered important for the FCCCDs to know how to provide home care. There was no joint planning of actions and each professional, individually, provided guidance on the disease and treatment. On hospital discharge day, specialist physician, together with residents and interns, delivered hospital discharge summaries to families, which presented a summary of the disease history and treatments performed during hospitalization. The purpose of this action was to make a decision about follow-up consultation at the clinic, which took place one week after discharge, and/or to facilitate children’s access to the service, in case there was clinical deterioration.

DIG (usual care added to an intervention plan based on Paulo Freire’s problematizing methodology, in a dialogical way - Freire, 2015): The first researcher, who is a pediatric nurse, performed intervention for all caregivers. To guarantee the consistency of approach, the researcher applied an intervention based on caregivers questions and necessities during the dialogical meeting, as well as monitoring intervention delivery trough evaluating participants’ understanding of information provided by caregivers’ feedback with oral and practical demonstration of knowledge. Children’s caregivers participated in the development of preparation plans for hospital discharge, listing through conversations the meaningful themes according to their priorities, with influence on planning decisions. Caregivers were trained using active teaching-learning methodologies that sought to encourage critical reflection on problems in the home care context to solve them based on knowledge built together with professionals. The themes involved technical training to carry out procedures on children at home, care for basic needs, and knowledge about the disease and treatments. Simulation of procedures was used to demonstrate operation of technological devices and to improve knowledge about the disease, treatment, and care and health care network (HCN); visual resources were used (illustrative folders, informative texts, images) to facilitate learning. DIG’s FCCCDs requested discharge summaries with guidelines for home care, reinforcing their feeling safe with the knowledge acquired in the training, which were delivered on the day of children’s hospital discharge. Families also received a summary of referrals to primary health care (PHC) services, with information necessary for continuity of care provided to the children.

SGG (usual care added to data collection through questions in a structured guide): The intervention was developed by undergraduate students supervised by a professor, coordinator of university extension project entitled “Preparation for hospital discharge in children with chronic health conditions.” To ensure the consistency of approach, students supervisor trained them to apply the standardize discharge protocol and followed each student to certify the information was delivery correctly. A structured guide was applied by health area students trained for data collection along the FCCCDs to plan the preparation for hospital discharge. Demands identified were discussed with project coordinator and collaborators (nursing technician, physiotherapist, nutritionist, social worker from the department’s multidisciplinary team) to elaborate an action plan, which was carried out by students with the support of this team. When families got out of hospital, they were given a discharge summary, referring children with a chronic disease to care continuity in PHC and counter-referral to their cities of origin by telephone.

Data collection

Quantitative and qualitative data collection occurred simultaneously in two timepoints, when was applied two scales and interviews carried out as follow: at admission and after hospital discharge. Completion of scales in all groups was mediated by main researcher, who read the items and alternatives based on a Likert Scale (1 - strongly disagree to 5 - strongly agree). Thus, participants could choose the answer that best suited their situation.

Mishel Uncertainty in Illness Scale - Family Member (Mishel) measures the level of uncertainty of FCCCDs. It is subdivided into four dimensions: ambiguity (AM): uncertainties related to decision-making, planning and implementation of the care provided (from 13 to 65 points); lack of clarity (LC): weaknesses in the explanations received or difficulty in understanding them (from 9 to 45 points); LI: LC due to not sharing information about diagnosis and disease with the family (from 5 to 25 points); and unpredictability (UN): family inability to make daily or future predictions for the disease symptomatology or evolution (from 4 to 20 points). Higher score indicates higher level of uncertainty (Barbosa, 2012).

Family Management Measure (FaMM) is subdivided into six dimensions: CDL—Child’s Daily Life (from 5 to 25 points); CMA—Condition Management Ability (from 12 to 60 points); CME—Condition Management Effort (from 4 to 20 points); FLD—Family Life Difficulty (from 14 to 70 points); VCI—View of Condition Impact (from 10 to 50 points); and PM—Parent Mutuality (from 8 to 40 points). PM was only filled out by caregivers who lived with a spouse/partner in the same household. Higher scores in CDL, CMA, and PM indicate greater ease in managing the disease, and CME, FLD, and VCI indicate greater difficulty in doing so (Bousso et al., 2017).

Scales were reliable tools to be applied in clinical practice with this population, based on a satisfactory index of Cronbach’s alpha on the Mishel scale (0.686) and a desirable index (0.9119) on the FaMM, showing its internal consistency and reliability from the measurement to the applied reality (Balbinotti and Barbosa, 2008).

Thus, in timepoint 1 (T1), Mishel and FaMM scales were applied within 48 hours of admission for all recruited families to measure levels uncertainty and disease management before preparation for hospital discharge. In the qualitative study, an in-depth interview was carried out personally with the FCCCDs, conducted by the first researcher. Questions asked to families before preparing for discharge were: “Tell me about your experience and that of your family in daily care of [name of child with chronic disease]. What questions do you have regarding the care of your child?” This data provided support for the planning of hospital discharge for the DIG.

To avoid overlapping interventions of the experimental groups (DIG, SGG), the Pediatric Department was visited daily to identify admission of children with chronic disease, and thus ensure control of the experiment during the hospitalization process, and all groups were visited by the researcher to follow the progress of the case. In timepoint 2 (T2) of the study, which took place two months after children’s hospital discharge, the two scales were reapplied, and a new in-depth interview was conducted. Questions asked were: “How do you evaluate the preparation for hospital discharge performed during hospitalization?” and “What is your perception of your child’s home care after hospital discharge?” Participants were contacted by telephone to schedule day, time, and preferred location for the interview.

Data analysis

Quantitative data were tabulated and processed in R software, version 4.1.0. Descriptive statistics were used to characterize the FCCCDs; given the small sample size, we used the Wilcoxon test (W) for paired samples to compare performance of each group before and after hospital discharge with the following hypotheses: H0: Scale scores before and after discharge preparation are equal; H1: Scale scores before and after discharge preparation are different. In the intergroup comparison, integrated response (IR) index was applied, in which the UCG was considered a control group for having received only the usual hospital discharge preparation in the Pediatric Department.

A significance level of 5% was used in all tests. A 95% confidence interval (CI) was calculated to analyze statistical trends in the scale dimensions. When calculating the RI index (Sanchez et al., 2013), the mean (X̄) of each item in the subscales was verified, followed by logarithmization of the ratio between the values of the groups, with the addition of one unit, by mean. Overall means and standard deviations were calculated for all groups. Logarithmized values were standardized using the effect size formula for all groups. Baseline was created centered on zero to represent variation of each of the instruments’ questions. Difference between each standardized answer (Zi) and mean of the values of each question in the reference group (Z0) were calculated to obtain the deviation index (A) that determined the effect size in each group studied in its respective timepoint. Values of A were added up determine the IR value for each group by timepoint. In the radar type graph, data by subscale were represented, indicating deviation of the DIG and SGG in relation to the UCG. UCG IR values were considered as reference values to compare performance of the experimental groups before and after the intervention.

Regarding the qualitative data, six steps of inductive thematic analysis were used: interview transcription for familiarization with the empirical material, initial coding, classification of codes into pre-themes, review of pre-themes, definition of themes, and elaboration of final report (Braun et al., 2019). No software was used for qualitative data analysis. Data were organized manually into analytical tables and the generating themes were identified by any means of chromatic marking.

Qualitative and quantitative data were integrated and organized in a joint display. Qualitative data helped to understand the scores obtained in the group that received usual preparation for discharge when compared to experimental groups.

Ethical considerations

Study was approved by Research Ethical Committee and its implementation followed Brazilian guidelines and norms regulating research involving human subjects. All participants signed consent forms. Before, questions about the study were clarified and the right to accept or deny participation on the study without impacting care, and the right to withdraw from participating were guaranteed. Anonymity of families was guaranteed by using letters and numbers to identify their respective groups.

Results

Sample characteristics

The 35 FCCCDs included, 25 completed the two timepoints of this convergent and parallel mixed method study (DIG n = 7; UCG n = 10; SGG n = 8). Children and their caregivers’ characteristics are presented by group in Table 1.

Table 1.

Sociodemographic and clinical characteristics children and their caregivers for groups. Children’s characteristics.

Groups	Diagnoses
UCG	Nephrotic syndrome; diabetes mellitus using insulin therapy; Kawasaki disease; congenital hypothyroidism, intra-atrial communication and Down syndrome; rheumatic fever; multiple congenital malformation syndrome using gastrostomy; Budd-Chiari syndrome; idiopathic thrombocytopenic purpura; Sturge-Weber syndrome; tetralogy of Fallot
DIG	Henoch-Schoenlein purpura with renal complications; subglottic stenosis and tracheomalacia using tracheostomy; chronic granulomatous disease and pulmonary tuberculosis; pyoderma gangrenosum using a dressing; bronchiectasis; nephrotic syndrome; cerebral palsy and West syndrome using gastrostomy
SGG	Cystic fibrosis; chronic kidney disease with cystostomy; chronic liver disease; generalized psoriasis; sickle cell anemia; hydrocephalus and neurogenic bladder with intermittent bladder catheterization; liver cirrhosis and chronic lung disease using oxygen therapy; oro-nasopharyngeal hemangioma using tracheostomy
	UCG		DIG		SGG
Sex	n	%	n	%	n	%
F	4	40	2	28.6	4	50
M	6	60	5	71.4	4	50
Age
<1 years	2	20	1	14.3	2	25
1–3 years	3	30	3	42.8	4	50
4–7 years	2	20	2	28.6	—	—
8–11 years	3	30	1	14.3	2	25
Chronic disease diagnosis time
Up to 6 months	7	70	3	42.8	5	62.5
6–12 months	1	10	1	14.2	1	12.5
>12 months	2	20	3	42.8	2	25
Special health care needs
Only medication	8	80	4	57.1	4	50
Technologic dispositive used (tracheostomy, gastrostomy, insulin therapy, oxygen therapy)	2	20	2	28.6	2	25
Needs others (bandages, cystostomy care, bladder catheterization)	—	—	1	14.3	2	25
Hospitalization time
Up to 14 days	7	70	2	28.6	4	50
From 15 to 30 days	—	—	4	57.1	2	25
>30 days	3	30	1	14.3	2	25
Caregivers’ characteristics
	UCG		DIG		SGG
	n	%	n	%	n	%
Relationship
Mother	10	100	7	100	7	87.5
Other	—	—	—	—	1	12.5
Age
Up to 19 years	2	20	—	—	—	—
20–29 years	3	30	6	85.6	4	50
30–39 years	3	30	1	14.3	2	25
>40 years	2	20	—	—	2	25
Education
Illiterate	—		—	—	1	12.5
Up to 8 years of study	4	40	4	71.4	5	62.5
>8 years of study	6	60	2	28.6	2	25
Other children
Yes	7	70	5	71.4	7	87.5
No	3	30	2	28.6	1	12.5
Perception of current family income
Sufficient for monthly expenses	4	40	2	28.6	—	—
Insufficient for monthly expenses	5	50	5	71.4	8	100
Leftover money at the end of the month	1	10	—	—	—	—

Narratives in the FaMM and Mishel scale before and after preparation for hospital discharge

Measurement and perceptions of the FCCCDs on their levels of uncertainty about the disease can be seen in the joint display (Table 2).

Table 2.

Joint display comparing quantitative data by dimensions of the Mishel scale and qualitative data with the FCCCDs of the DIG, SGG, and UCG on levels of uncertainty before and after hospital discharge.

		Quantitative			Qualitative
		Means and standard deviation			Narratives
		Before	After	p-value	Before	After
Intervention Group produced in dialog with the family (DIG) n = 7	TS	107.29 ± 14.87	98.14 ± 16.83	0.074	I Have some questions about his disease. [...] the only thing the doctors explain is that he needs to undergo this procedure [endoscopic balloon dilation] (P2). [...] because he’s so feverish, I keep thinking that it could be an infection. As the doctor said that he has low immunity, he gets any disease (P3). Sometimes I have questions about his disease, his treatment, but as his [nephrologist] is very tough, I think if I keep asking, it’ll irritate her (P6)	In my experience, preparation for discharge was complete […]. I didn’t feel any difficulties when I got home, because everything was clarified (P2). Preparation for discharge [...] should always guide cleaning and feeding care, how to proceed if the child has a fever. I believe I was provided with this information (P3). The attention you gave me there, [...] this attention, the doctors and nurses there (the hospital) do not give (P6)
	AM	44.86 ± 9.91	40.29 ± 10.04	0.207
	LC	32.29 ± 4.50	32.00 ± 5.69	0.684
	LI	18.29 ± 3.50	15.29 ± 3.86	0.072
	UN	11.86 ± 3.13	10.57 ± 3.60	0.345
Structured Guide Group (SGG) n = 8	TS	105.38 ± 7.07	106.13 ± 15.72	0.799	If you explain calmly, I know how to take care of her later. [...] I don’t understand what they say in their language (P1). [...] We’ve never gone through this, it’s the first time, then it’s hard to understand, but there are things I understand (P2). The doctors said he has anemia [sickle cell] that can’t be cured, [...] that he lived normal, [...] because he feels pain, they didn’t explain it to me (P5). They [health professionals] say everything, but they could give a more detailed explanation [...] sometimes they just say what they are going to do and nothing else (P7)	About the care measures for her [child with cystic fibrosis], they were never guided (P1). I think that to be better [preparation for discharge] ... there are things I understand and there are things I don’t understand. Everything is very new for me (P2). The professionals talked about his disease, explained how to examine him when crises happen (P5). It’s practically like taking care in the hospital [...], watch if he’s getting worse, if he feels something different from what he already felt [...] (P7)
	AM	45.38 ± 7.60	45.50 ± 10.78	0.726
	LC	31.88 ± 2.53	32.13 ± 3.48	0.610
	LI	15.38 ± 2.88	14.88 ± 3.48	0.672
	UN	12.75 ± 5.39	13.63 ± 4.03	0.735
Usual Care Group (UCG) n = 10	TS	103.40 ± 18.17	102.20 ± 19.84	0.778	My biggest questions are in relation to this fever and this anemia of his. I can’t go home without finding out why (P4). My knowledge is very little. He will need a lot from now on [...]. I want to know exactly what this rheumatic fever is. [...], because I don’t know (P5). They explain everything well. [...] sometimes they speak another language that I don’t understand and I look for the resident doctor. He can explain it to me properly (P9)	They just told me to continue the medication [...]. The professional has to find out about the questions to explain (P4). [...] they did the basics, saying they had to give the medication at the right time, rest, not to go to bed late [...], not to miss medical consultations. All this I already knew (P5). The professionals were always very communicative. The problem was on the discharge day [...] he only delivered the paper with the report, he told me to read it [...]. I should have talked more and explained more (P9)
	AM	39.10 ± 12.28	38.70 ± 12.17	0.953
	LC	33.20 ± 5.73	33.00 ± 5.92	0.758
	LI	16.30 ± 3.30	16.80 ± 4.69	0.593
	UN	14.80 ± 4.89	13.70 ± 4.35	0.474

AM: Ambiguity; LC: Lack of Clarity, LI: Lack of Information, UN: Unpredictability, TS: Total Score.

p-value (W): Wilcoxon’s test.

Although no statistically significant difference before and after intervention was found, there was a trend towards a lower overall score for levels of uncertainty in the DIG (p-value = 0.074; X̄1 = 107.29, 95% CI 96.27–118.31 and X̄2 = 98.14, 95% CI 85.67–110.61). Qualitative data showed greater satisfaction about families' expectations being met regarding preparation for the intervention that involved hospital discharge planning produced in dialog with the families. Figure 1 presents the comparison of the IR values calculated for DIG and SGG with the UCG.

Figure 1.

Integrated response index related to the Mishel scale before (timepoint 1) and after (timepoint 2) interventions evaluated in the DIG and SGG when compared to UCG.

When quantitatively comparing performance of the experimental groups with control group (UCG), a reference for the IR index, the results of the Mishel scale showed a statistically significant difference in the DIG indicated reduction of uncertainties after the intervention, observed with the reduction of all the dimensions (IR1: 1.25 and IR2: −1.23). In the SGG, there was no significant difference in levels of uncertainty in this group when compared to the usual discharge preparation group (IR1: 0.46 and IR2: 0.58).

In the FaMM results, statistical trends before and after interventions were observed in the DIG with better perception in the CDL X̄1 = 14.00, 95% (CI 10.80–17.20) and X̄2 = 17.57, 95% CI (14.49–20.65). In the SGG were observed a better perception in the FDL X̄1 = 45.00; 95% CI (32.94; 57.06) and X̄2 = 37.63, 95% CI (25.16–50.10). In the UCG a worst perception in VCI were observed X̄1 = 25.80, 95% CI (20.54–31.06) and X̄2 = 33.60 95%, CI (24.69–33.51). DIG’ narratives before and after discharge indicated that the trend was due to perceptions of management improvements in disease caused by reduction FCCCDs insecurity regarding decision-making, although no statistically significant difference was found. Better perceptions of children’s lives minimize families’ concerns about future implications of the disease for their own and children’s lives. SGG’ narratives showed that trend resulted from the support received from the HCN services or from family support, which minimized FCCCDs’ difficulty and insecurity in decision-making. UCG’ trend approached statistical significance with an increase in scores, indicating greater family concern with severity and implications of disease for children and for future of families. Narratives showed family insecurity due to the fragility of knowledge about the disease and treatment, resulting in inability to make decisions, as shown in the joint display (Table 3).

Table 3.

Joint display with comparison of quantitative data by dimensions of the FaMM scale and qualitative data with the FCCDC among DIG, SGG and UCG on disease management before and after hospital discharge.

	Quantitative				Qualitative
	Means and standard deviation or median and IQR				Narratives
		Before	After	p-value	Before	After
Intervention Group produced in dialog with the family (DIG) n = 7	CDL	14.00 ± 4.32	17.57 ± 4.16	0.074	Now when he comes home, I don’t know, because a lot will change [...] in the routine it will prevent me from doing some things so I can be closer to him (P2). [...] I stay only indoors; I avoid going out with him [...]. Then I wonder at school what it's going to be like, because of his immunity (P3). She eats almost everything but put in a blender. [...] just be careful because she chokes a lot. [...] at home it wasn’t so bad, but after she got here and choked the first time it got worse (P7)	Now I’m seeing his disease much better [...]. The only thing that is different about him is the tracheostomy [...], I treat him normally, just the care precautions that were indicated right here (P2). He managed to develop more than I expected [...] He only had 3 days of fever in February. He didn’t have it anymore (P3).She taught me to understand her way more [...] I see her much better nowadays, interacting more [...]. I didn’t understand that she had difficulty (P7)
	CMA	45.00 ± 9.54	44.29 ± 5.99	0.753
	CME	17.86 ± 2.54	16.71 ± 3.35	0.674
	FLD	44.00 ± 11.85	38.00 ± 10.04	0.674
	VCI	30.71 ± 4.46	30.14 ± 3.89	0.734
	PM	32 (13.5–34)*	28 (11.5–37.5)*	0.854
Structured Guide Group (SGG) n = 8	CDL	18.88 ± 5.99	17.38 ± 7.29	0.581	This girl takes blood pressure medication [...] if they [PHC professionals] looked at the pressure, at least followed it there, this girl was fine. [...] when she gets here, it’s a great treatment, but there she never had it (P7). When she went into deep sleep, the hemangioma swelled up, she was all purple and floundering. I had to stay awake with her standing at night and when I went to sleep, my husband would stay with her. [...] what is most difficult to take care of today is the tracheostomy (P8)	She’s being monitored by a health team [from PHC] [...]. The doctor visits every Thursday. [...]. The nurse on Monday [...] the [hospital] called the city hall [...] and when it came [discharge] they were following her (P7). She’s fine, sleeping well, I’m sleeping and so is the father, everything is peaceful. [...] today she breathes through this tracheostomy, like a normal child. She now plays, [...] sleeps and eats well and has even gained weight and is growing (P8)
	CMA	38 (35.25–41.5)*	42.5 (38.25–46.25)*	0.624
	CME	15.00 ± 5.16	14.88 ± 4.61	0.888
	FLD	45.00 ± 17.40	37.63 ± 17.99	0.080
	VCI	31.00 ± 7.07	28.75 ± 2.30	0.596
	PM	30.5 (0–38.5)*	29.5 (0–40)*	0.999
Usual care group (UCG) n = 10	CDL	17.50 ± 5.56	18.80 ± 6.61	0.292	I’ll take care of her like a normal child, but with a little extra care with the pressure, preparing food without salt, like that, but that “care”. (P1). My biggest questions are in relation to this fever and this anemia of his. I can’t go home without finding out why (P4). Why do you get that in a child’s liver? [...] this swelling [ascites] in her belly [...] I wanted to understand (P7)	[...] the last exam she took, the first time was better. The doctors say it’s chronic, but the only thing I want is for her to get well and ready (P1). His anemia is being investigated [...], I’m waiting at home. [...] I worry too much about his future. If I die, if the father dies, how will he be? Just what I think (P4). I’m really afraid she’ll fall and hurt her belly so it doesn’t get worse, because her liver is overgrown (P7)
	CMA	44.30 ± 4.67	46.70 ± 6.41	0.171
	CME	13.80 ± 5.01	14.80 ± 4.95	0.609
	FLD	36.90 ± 12.71	33.60 ± 14.66	0.312
	VCI	25.80 ± 8.48	29.10 ± 7.11	0.058
	PM	33 (29.75–38.25)*	39 (34.75–40)*	0.123

CDL: Child’s Daily Life; CMA: Condition Management Ability; CME: Condition Management Effort; FLD: Family Life Difficulty; VCI: View of Condition Impact; PM: Parent Mutuality.

p-val or (W): Wilcoxon’s test.

*Median (Q1–Q3).

Figure 2 shows the effect size of the FaMM results.

Figure 2.

Integrated response index related to the FaMM results before (timepoint 1) and after (timepoint 2) the interventions evaluated in the DIG and SGG when compared to the UCG.

It is evident that SGG was close to the baseline and, therefore, similar to UCG (IR1: −0.24 and IR2: 0.020), with induction of CMA, CME, and PM and inhibition of CDL and VCI. DIG increased in relation to baseline (IR1: −0.15 and IR2: 0.40) with induction in the CDL, CMA, CME, and PM dimensions when compared to UCG.

Discussion

Explanatory evidence for trends found was identified with databases’ integration (Oliveira et al., 2021). DIG tendency to minimize levels of uncertainty can be attributed to partnership between professionals and families in the development of discharge planning. In the joint construction of this planning, knowledge, experiences, and unique demands of the FCCCDs were valued, as well as their life context. Thus, it resulted in greater appropriation of knowledge to carry out home care, strengthening their confidence in decision-making.

SGG and UCG predominated preparation for hospital discharge without family participation in the planning. Actions taken aimed to pass disease-focused information standardized to FCCCDs, to carried with them on returning home, which did not contribute to reducing uncertainties. According to Paulo Freire, this is the “visão bancária do processo educativo” (“banking view of the educational process”), in which “os homens [são] vistos como seres da adaptação” (“men [are] seen as adaptable beings”) to what is imposed on them (Freire, 2015: p. 83). Dialogical approach is an existential meeting between people who seek to reflect on reality in order to transform and humanize it. Therefore, it cannot be reduced to an act of depositing content from one into the other, nor can it become a simple exchange of ideas between people (Freire, 2015).

Education in health through authentic dialog presupposes qualified listening with appreciation of families’ previous knowledge for the reconstruction of reality (Severo et al., 2019). Engaging FCCCDs in learning prepares them to shape knowledge to meet their needs in the home context. This is the central concept of wayfinding, which surpasses simple information transfer (McDonald et al., 2017), contributing to the autonomy of family decision-making.

Preparation for hospital discharge should start from admission and last during hospitalization, and ambience present during this period influences the teaching-learning process of the FCCCDs. Ambience is made up of the physical structure, the actions by the team’s professionals, and the professional-family-child relationships established. When it is favorable, it impacts positively on reception and resolution of their needs (Fontana et al., 2017) resulting in a sense of safety and well-being (Sundal, 2023).

In this study, ambience was disadvantaged when: (i) families did not participate in the planning of preparation for hospital discharge, which resulted in lack of clarification of their questions; (ii) professionals provided little time for preparation and used language that was difficult to understand; and (iii) there was no cohesion between the types of information provided by the multidisciplinary team to the families.

To change these negative aspects of ambience, it is necessary for health professionals to take an empathetic posture with regard to needs of families which goes beyond the prescriptive posture, in order to favor the bonding created by a true meeting between families and professionals. This bond gives FCCCDs confidence about expressing their questions, expectations, fears and life context, in addition to favoring feedback of their real knowledge about care. In the DIG, bonding and the clarification of caregivers' questions may have been favored by longer hospitalization time (between 15 and 30 days) when compared to the UCG and SIG, with times up to 14 days.

Family decision-making is also strengthened when continuity of care in the HCN is guaranteed. Integration of network points enhances support for these children, facilitating access to the actions and services necessary for their care after discharge (Klein et al., 2021; Souza et al., 2020).

Children with chronic disease are dependent on the HCN to meet their health demands (Costa et al., 2020). The FCCCDs learned about the network’s support points and acquired autonomy in decision-making to choose therapeutic itineraries, resulting in better quality of life (McDonald et al., 2017). For families with low education, ensuring this support for continuity of care in community services and additional health providers is critical (Phonpruk et al., 2019).

Telephone contact with health departments of the municipalities of origin of the FCCCDs of the SGG resulted in a tendency to minimize difficulties related to disease, although without statistical significance. SGG achieved better results when compared to the strategy of the DIG of delivering summaries to the FCCCDs to be taken to PHC, or of the UCG of delivering the usual hospital discharge medical summaries.

Studies carried out in Canada (Aued et al., 2019), Madrid, Barcelona, Murcia, Seville, Granada (Costa et al., 2020), and Brazil (Röhsig et al., 2019) show that the coordination of care between HCN services performed by nurses through phone calls in preparation for hospital discharge ensured continuity of care. One study also identified promising results in improving the quality of teaching at discharge when nurses used an iPad application in the preparation of hospital discharge (Lerret et al., 2020). This can also, collaborate with systematization of hospital discharge preparation during hospitalization (Sulino et al., 2021).

UCG’ trend identified was unfavorable for disease management because it represents greater concern for the FCCCDs about the future implications of the disease for the children. In the narratives, efforts by UCG professionals to explain the disease and its treatment were observed, but with unidirectional and informative communication. Families considered information and explanations superficial and/or not understandable due to the use of technical terms that were difficult to understand.

Study limitations

A major limitation of this study is that DIG was administered by MDs, SGG by nursing students, and UCG by clinical care nurses. In addition, inclusion of participants was hampered by administrative problems in the Pediatric Department (need for fumigation in the department, lack of supplies such as peripheral venous catheters, interdiction in the nutrition unit) and the truck drivers' strike in the country, which reduced admissions for approximately three months. Due to the reduced sample size, it not enabled to randomize participants and controls to reduce the possibility of confounding bias. Studied variables such as time of diagnosis and length of hospitalization (longer in the DIG), and caregivers’ levels of education (higher in the UCG) presented some disparities. This indicates need of future randomized studies with large sample sizes to better examine these variables. A final limitation was that long hospital stays (24% with more than 30 hospitalization days) resulted in low bed turnover, compromising participants’ inclusion.

Implications for practice

Overall findings from this study support that when communication by health professionals is unidirectional, informative, and irregular, it hinders appropriation of knowledge, weakens FCCCDs' knowledge. Health professionals should implement shared decision-making to be more productive and contribute to development of more effective relationships and communication (Koch et al., 2022).

For the development of discharge planning in a dialogical way with families, it is necessary to pay attention to the impact of the children’s home care on family dynamics (Góes and Cabral, 2017). Recommendations given are more likely to be effective if Health Care Professionals overcome disease-focused care, which is essentially limited, to open up new horizons with the implementation of individualized care. In unique planning of preparation for discharge, there is deconstruction of power asymmetries between professionals and family caregivers, favoring greater awareness of the families’ life histories and ways of caring for them. In this dialogical construction, traditional narration of content is overcome and becomes construction of family-centered care.

Conclusion

This study found that family participation in planning for hospital discharge led to a reduction in levels of uncertainty regarding the disease and better care management of children at home. Discharge preparation intervention with structured guidelines, which included a telephone call for continuity of care in primary care, showed a tendency to minimize the difficulties related to the disease. To give voice to the participants to explain their necessities during a dialogical discharge preparation contributes to the family-centered-care.

DIG participants had a longer hospital stay. Therefore, it is important that new studies be carried out in order to identify whether dialogical hospital discharge preparation have good results in children with shorter hospitalization time.

Integration of qualitative and quantitative data provided a more comprehensive understanding of preparation for hospital discharge carried out by means of different strategies, identifying its strengths and weaknesses of each on, which can support its improvement.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was financed in part by the Coordination for the Improvement of Higher Education Personnel– Brazil (CAPES) – Finance Code 001.

ORCID iDs

Vanessa Medeiros da Nóbrega

Claudia S Viera

Elisiane Lorenzini

Altamira P da S Reichert

Neusa Collet

Appendix

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