Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review

G Model PEC 6145 No. of Pages 15

Patient Education and Counseling xxx (2018) xxx–xxx

Contents lists available at ScienceDirect

Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

Review article

Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review Michelle Gatesa , Jocelyn Shulhan-Kilroya , Robin Featherstonea , Tara MacGregora , Shannon D. Scottb , Lisa Hartlinga,* a b

Alberta Research Centre for Health Evidence (ARCHE), Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Canada Evidence in Child Health to Advance Outcomes (ECHO), Faculty of Nursing, University of Alberta, Canada

A R T I C L E I N F O

A B S T R A C T

Article history: Received 23 October 2018 Received in revised form 10 December 2018 Accepted 12 December 2018

Objective: To inform evidence-based knowledge products (i.e., infographics, videos, eBooks) of relevance to parents, we systematically reviewed evidence on parent experiences and information needs related to bronchiolitis. Methods: We searched Medline, CINAHL, PsycINFO, and ProQuest Dissertations & Theses Global, and scanned reference lists for studies published post-2000. We appraised quality in duplicate using the Mixed Methods Appraisal Tool (MMAT) and synthesized findings narratively. Results: We retrieved 797 records and included 29; 14 (48%) met >50% of MMAT criteria. Studies predominantly enrolled mothers. Most reported quantitatively on hospitalization experiences (n = 9, 31%), treatments (n = 5, 17%), or respiratory syncytial virus (RSV) prophylaxis (n = 9, 31%). Ten (34%) studies reported on information needs; 3 contributed qualitative data. Parents could not always identify bronchiolitis symptoms. During hospitalization, parents endured guilt and anxiety. Mothers wanted to take an active role in their child’s care but often felt uninvolved. Barriers to RSV prophylaxis included transportation, scheduling, and insurance issues. Conclusions: Evidence focused primarily on hospitalization, which parents found frightening. More information is needed on home care experiences and information preferences. Practice implications: Timely education and support from healthcare providers may help to alleviate parents’ fears and enhance involvement in their child’s care. © 2018 Elsevier B.V. All rights reserved.

Keywords: Systematic review Child Bronchiolitis Parent Experience

Contents 1. 2.

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Background . . . . . . . . . . . . . . . . . . . . . . . . Methods . . . . . . . . . . . . . . . . . . . . . . . . . . Review conduct . . . . . . . . . . . . . . . 2.1. Eligibility criteria . . . . . . . . . . . . . 2.2. 2.3. Search strategy . . . . . . . . . . . . . . . Screening . . . . . . . . . . . . . . . . . . . . 2.4. Data extraction . . . . . . . . . . . . . . . 2.5. Methodological quality appraisal . 2.6. 2.7. Data synthesis and interpretation Results . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Study selection . . . . . . . . . . . . . . . Study characteristics . . . . . . . . . . . 3.2. 3.3. Quality appraisal . . . . . . . . . . . . . . Quantitative findings . . . . . . . . . . 3.4.

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* Corresponding author: Edmonton Clinic Health Academy 4-472, University of Alberta, 11405-87 Avenue NW, Edmonton, Alberta, T6G 1C9, Canada. E-mail addresses: [email protected] (M. Gates), [email protected] (J. Shulhan-Kilroy), [email protected] (R. Featherstone), [email protected] (T. MacGregor), [email protected] (S.D. Scott), [email protected] (L. Hartling). https://doi.org/10.1016/j.pec.2018.12.013 0738-3991/© 2018 Elsevier B.V. All rights reserved.

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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4.

3.4.1. Parent experiences with hospitalization . . . . . . . . . . . . . . Parent experiences and preferences related to treatment 3.4.2. Experiences with respiratory syncytial virus prophylaxis 3.4.3. Parent information sources and needs . . . . . . . . . . . . . . . 3.4.4. Qualitative findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5. Being unprepared and afraid . . . . . . . . . . . . . . . . . . . . . . . 3.5.1. Feeling excluded and uninvolved . . . . . . . . . . . . . . . . . . . 3.5.2. Mothering instincts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5.3. 3.5.4. Lacking information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion and conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. 4.2. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Practice implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3. Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Declarations of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Data availability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Protocol registration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1. Background Bronchiolitis is an acute lower respiratory tract infection commonly affecting children in their first two years of life [1]. The condition most often occurs due to respiratory syncytial virus (RSV) infection [2], and is characterized by inflammation and edema within the bronchioles and increased mucus production [3,4]. Bronchiolitis is often mild and self-limiting [3], but young children’s small anatomy means that respiratory distress can occur even with minor inflammation. Parents need to be able to recognize the symptoms that indicate a need for further treatment [3,5]. Current clinical practice guidelines [3,4] advise that a bronchiolitis diagnosis should be guided by the child’s symptoms and clinical examination. Supportive care, including hydration and oxygen therapy, are the mainstay of treatment [3,4]. For most otherwise healthy children, empiric evidence does not support extensive diagnostic testing [6] nor additional pharmacologic treatments [7–9]. Clinicians’ approach to treatment remains highly variable and the overuse of unnecessary tests and treatments is common [10,11]. The uncertainty about recommended medical treatments highlights the need for parents to understand the nature of the condition and the role that they can play in their child’s care. Parents want to make informed decisions about their child’s care, but are faced with pressures from a variety of sources and may not know who to trust [12,13]. When simple supportive care is recommended, worried parents who perceive their child’s illness to be severe may question the credibility of a clinician’s diagnosis [14]. A lack of concrete treatment advice can leave parents feeling helpless about their ability to reduce their child’s suffering [14]. To help parents understand bronchiolitis and its treatment, we aim to develop evidence-based knowledge products (i.e., infographics, videos, and/or eBooks). To inform these products, and to optimize their relevance to the target audience, we synthesized the available evidence on parents’ experiences and information needs related to bronchiolitis in their child. Our research question was as follows: What are parents’ self-reported experiences and information needs related to bronchiolitis in their infant or child? 2. Methods 2.1. Review conduct We followed rigorous Cochrane methods [15], adhered to a predefined protocol (PROSPERO registration #CRD4201707998,

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http://www.crd.york.ac.uk/PROSPERO/display_record.php? ID=CRD42017079985), and did not make any changes to the protocol while undertaking the review. Herein, we report our findings as suggested by the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement [16]. 2.2. Eligibility criteria We included primary research studies published in any language from January 1, 2000 onwards, and excluded nonresearch, reviews and overviews of reviews, and abstracts. Restricting the search to post-2000 ensured relevance to current medical practice and the ways in which parents access information (we acknowledge that these are continually evolving). To be included, studies had to present outcomes related to parents’ or caregivers’ self-reported experiences or information needs concerning their child’s bronchiolitis. We adopted a definition of ‘experiences’ that we have used previously in reviews of parent experiences and information needs [17,18]. Thus, we defined ‘experiences’ as events or circumstances that have affected parents and the extent to which their needs have been met [19]. We excluded studies that reported only on satisfaction, symptoms or actions taken without explanation. We defined ‘information needs’ as the type, timing and quantity of information that parents desire. We included parent reports of knowledge but did not infer information needs based on reports of knowledge or actions that were not aligned with current evidence. 2.3. Search strategy A research librarian (RF) developed strategies that combined MeSH terms and text words for concepts related to bronchiolitis, parents, experiences, and information needs, and searched the following databases on 27 October 2017: Ovid Medline Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Ovid Medline (1946-), Ovid PsycINFO (1987-), CINAHL via EBSCOhost (1937-), and ProQuest dissertations and Theses Global. The full search strategy is available from the authors upon request. We limited the searches to records indexed since January 2000. We uploaded results to an EndNote (v.  5, Clarivate Analytics, Philadelphia, PA) library and removed duplicates. We also scanned the reference lists of the included studies and relevant reviews. We intended to contact the authors of relevant abstracts, but for the one relevant abstract that we located, author contact details were unavailable.

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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2.4. Screening

3. Results

We exported the search results to a Microsoft Office Excel (v. 2016, Microsoft Corporation, Redmond, WA) spreadsheet. Using a standardized screening form, two reviewers (MG and TM) independently selected studies for inclusion following a twostage process. First, the reviewers screened the records by title and abstract. This was followed by a full text review of any record categorized as potentially relevant by either reviewer. Prior to each stage, the reviewers piloted the screening criteria on a small sample of records to reconcile differences in understanding of the concepts of interest. At each stage of the selection process, the reviewers resolved disagreements by discussion, or by consulting a third reviewer with content or methods expertise (SDS and/or LH).

3.1. Study selection

2.5. Data extraction Prior to undertaking data extraction, two reviewers (MG and JSK) piloted a standardized data extraction form and minor changes were made (i.e., addition of columns for inclusion and exclusion criteria, and clarification of study design definitions). Then for each included study, one reviewer extracted: study characteristics (i.e., author, year, country, funding source, study design), participant characteristics (i.e., inclusion and exclusion criteria, sample size, age and sex distribution, setting, details of the illness), characteristics of the interventions or exposure, and data collection methods. For quantitative studies, we extracted outcome data related to parent-reported experiences and information needs. For qualitative studies, we extracted all relevant data identified as ‘findings’ or ‘results’ by the study authors [20], and transferred these verbatim to a Microsoft Office Word (v. 2016, Microsoft Corporation, Redmond, WA) document. A second reviewer (MG or JSK) verified all extracted data for accuracy. The two reviewers resolved disagreements with regard to the extracted data by discussion. 2.6. Methodological quality appraisal We appraised the quality of all included studies using the Mixed Methods Appraisal Tool (MMAT) [21,22]. We first categorized the studies as one of (1) qualitative, (2) randomized controlled trial, (3) quantitative non-randomized, (4) quantitative descriptive, or (5) mixed methods [21,22]. Two reviewers (MG and JSK) then independently assessed the quality of the included studies. Reviewers resolved disagreements about study quality by discussion. 2.7. Data synthesis and interpretation We synthesized the extracted data following a two-phase sequential explanatory approach [23]. That is, we first synthesized the quantitative data and then used the qualitative synthesis to expand upon the initial findings and assist in interpretation. Due to heterogeneity in outcomes, we described the quantitative findings narratively and performed univariate descriptive analyses to characterize the studies’ relevant features. We then used a thematic synthesis approach [20] to synthesize the qualitative data. First, one reviewer (MG) coded each line of text inductively [23]. We then re-examined all lines following a constant comparative approach to ensure the consistency and completeness of the interpretation [20]. We then looked for similarities and differences between the codes and organized them into analytical categories and themes [20]. To reduce the risk of interpretive bias, a second reviewer (JSK) reviewed and confirmed the codes, categories and themes [24]. The two reviewers resolved discrepancies in interpretation by discussion.

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Of 656 unique records retrieved by the search, we assessed the full text of 93, and included 29 studies (Fig. 1) [25–53]. The studies by Lapillone et al. (2012 [36] and 2013 [55]) and Rolsfsjord et al. (2015 [47] and 2016 [54]) were each represented by two reports. We considered the later publications [54,55] for each study to be associated publications. A list of the studies excluded following full text appraisal is available from the authors upon request. 3.2. Study characteristics Table 1 shows the characteristics of the included studies. Based on the data extracted, we categorized the studies as randomized controlled trials (n = 3) [25,26,44], quantitative non-randomized (n = 8) [35–37,39,45–47,50], quantitative descriptive (n = 16) [27– 34,38,40,42,43,48,49,51,52], or qualitative (n = 2) [41,53]. One study [52] contributed a small amount of qualitative data, but no qualitative synthesis, so we categorized it as quantitative. Studies most often originated from the United States (n = 12, 41%) [26,32,33,35,37,38,40,42,45,46,51,53]. Industry funding was relatively common (n = 10, 34%) [26,28,29,33,35–39,45]. The 29 studies reported data for 27,059 parents or caregivers (median 216, range 6–19,235). When reported (n = 13) [28,30,31,34–37,41,46,49,50,52,53], participants were predominantly (>70% in all but one study) [31] mothers. In studies where it was reported, slightly more than half of infants were boys, and were generally less than 12 months old. 3.3. Quality appraisal Fig. 2 summarizes the appraisals of the methodological quality of the included studies by study design. Full details of the quality appraisals are available from the authors upon request. Fourteen studies [25,29–31,33,36–38,41,45–47,50,52] (48%) met 75% or 100% of MMAT criteria, eight (28%) met 50% [26–28,32,39,43,44,53], and seven (24%) met 0% or 25% [34,35,40,42,48,49,51]. 3.4. Quantitative findings Table 2 provides a summary of the main quantitative findings regarding parent experiences and information needs. We elaborate on these further below, and full details are available in Appendix A. 3.4.1. Parent experiences with hospitalization Nine studies (6 non-randomized [36,37,39,45,47,50]; 3 descriptive [27,28,30]; all with MMAT scores of 50% or 75%) reported on parents’ experiences related to their child’s hospitalization. Four non-randomized studies [36,37,39,50] showed that hospitalization could have negative emotional, time and health impacts on parents. In particular, Leidy (2005) [37] found that the anxiety and stress experienced by female caregivers of infants with RSV could endure for weeks post-discharge. Conversely, two studies [30,47] did not find any impact on parent emotions or anxiety during hospitalization or post-discharge. Three studies [28,36,37] offered insight into contributors to parental distress. Carbonell-Estrany (2018) [28] (n = 105) and Leidy et al. [37] (n = 46) indicated that observing painful or invasive procedures, changing parental roles, not being able to comfort their child, worry about future health issues, and concerns about staff competence contributed to distress. Lapillone et al. [36] found an association between longer hospital stays and increased distress.

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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Fig. 1. Flow of studies through the selection process.

3.4.2. Parent experiences and preferences related to treatment Five studies (3 randomized controlled trials (RCTs) [25,26,44], and 2 descriptive [32,49]) of variable quality (0%, 25%, 50% or 75% of MMAT criteria met) reported on parent experiences and preferences related to treatments. One RCT [25] (n = 92) indicated that 80% of parents believed that aerosol epinephrine treatment in an oxygen hood was better tolerated than via face mask. Another RCT [44] reported that parents (n = 29) perceived no difference in child comfort or treatment effectiveness for various physical therapy techniques [44]. Two studies [26,32] reported on parent experiences with home oxygen, showing an overall preference for treatment at home compared to the hospital [26,32]. Concerns included child noncompliance, difficulties operating the oxygen tank, inconvenience, time off work, and lack of monitoring [32]. One study [49] reporting on infants who were treated at Traditional Chinese Medicine (TCM) and non-TCM hospitals in China, indicated that 73.1% of parents (n = 286) preferred TCM drugs compared to nonTCM drugs, despite efficacy and safety concerns. 3.4.3. Experiences with respiratory syncytial virus prophylaxis Nine studies (2 non-randomized [35,46], 7 descriptive [29,33,38,40,43,51,52]) of variable quality (25%, 50%, or 75% of MMAT criteria met) reported on parent experiences with RSV prophylaxis programs. Two studies [43,46] indicated that participating in prophylaxis could contribute to distress. Eight studies [29,33,35,38,40,43,51,52] reported on barriers to compliance, which commonly included worry about adverse effects [29,52], costs and insurance issues [33,35,38,40,51], scheduling of repeated visits [33,35,52], and transportation difficulties [35,38,52]. Langkamp et al. [35] indicated that as parents’ (n = 211) perception of benefit increased and barriers (transportation and scheduling) decreased, the odds of compliance improved (OR 1.54, 95% CI 1.10–2.16, p = 0.01).

3.4.4. Parent information sources and needs Eight studies (1 RCT [26] (findings from one arm), 7 descriptive [31,32,34,42,43,48,52]) of variable quality (0%, 25%, 50%, or 75% of MMAT criteria met) reported on parent information needs. Two studies [42,52] reported that many parents (69.1% [52] to 74% [42]) believed that they lacked knowledge about bronchiolitis caused by RSV; in another study [31], 81% of parents (n = 396) of children hospitalized for bronchiolitis or pneumonia reported not receiving any information on the spread of RSV. Two studies [43,52] reported on parents’ sources of information related to RSV prophylaxis programs, which commonly included nurses and neonatologists (or discharge physicians). Other sources included written materials, pediatricians, and friends or family [52]. One study [48] showed that parents (n = 35) with children hospitalized in an isolation ward had high information needs. When parents were asked to rate the information that they needed and had received from a list of pertinent information items, in several cases (16 out of 24 items, 67%), there was no significant correlation between parent information needs and the information received [48]. 3.5. Qualitative findings The qualitative synthesis expanded upon many of the quantitative findings, and resulted in four interdependent themes: being unprepared and afraid, feeling excluded and uninvolved, mothering instincts, and lacking information. The majority of the qualitative data were derived from two studies [41,53] that included only mothers (n = 18); a third study (n = 123 caregivers, 92% mothers) was considered to be mainly quantitative, but contributed a small amount of qualitative data related to a RSV prophylaxis program [52]. The studies were of varied quality (50%, 75%, or 100% of MMAT criteria met).

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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Study

Parents or caregivers

Children

Setting

Intervention or exposure

Parent-focused outcomes

Hospitalization with aerosol treatment via: 1. Baby Air hood device (n = 25) 2. Face mask (n = 24) 1. Home oxygen (n = 37) 2. Hospitalization (n = 39) Physical therapy (postural drainage) associated with: 1. tapping + tracheal aspiration (n = 16) 2. EAF + tracheal aspiration (n = 13)

Perception of tolerability of the treatment

Randomized controlled trials (n = 3) Amirav 2005 [25] n = 49 caregivers

n = 49 infants hospitalized for viral bronchiolitis Hospital in Israel

Bajaj 2006 [26]

n = 92 mothers

n = 92 infants diagnosed with viral bronchiolitis ED in the USA

Remondini 2014 [44]

n = 29 caregivers

n = 29 infants with 83 hospital visits for bronchiolitis

Hospital in Brazil

n = 211 infants receiving RSV prophylaxis (preterm or CLD)

Children’s hospital in Ohio, USA

n = 463 infants hospitalized for bronchiolitis; 28% preterm, 6.7% CLD

77 hospitals in France

n = 91 preterm infants hospitalized for laboratory-confirmed RSV LRTI

5 hospitals in the USA

1. Hospitalized for RSV LRTI (n = 46) 2. Not hospitalized for RSV LRTI (n = 45)

Caregiver and family distress

n = 216 preterm infants (27% hospitalized for bronchiolitis) n = 486 infants (19% preterm, 2.1% past RSV diagnosis) hospitalized for bronchiolitis n = 143 infants receiving RSV prophylaxis (16% preterm, 47% on oxygen for CLD)

Hospitals in Spain

1. Hospitalized for RTI (n = 71) 2. Not hospitalized for RTI (n = 145) Hospitalization for bronchiolitis

Caregiver overload, quality of life

Quantitative non-randomized (n = 8) Langkamp 2001 [35] n = 211 caregivers; 85% mothers, 6% both mothers and fathers Lapillone 2012 [36] n = 368 parents (87% mothers, 7% fathers, 6% both) Leidy 2005 [37] n = 91 female caregivers (93% mothers, 7% legal guardians) Mendez Rubio 2005 n = 216 caregivers [39] Robbins 2006 [45] n = 486 caregivers Robbins 2002 [46]

n = 143 parents (91% mothers, 9% fathers)

Rolfsjord 2015 [47]

n = 415 parents

Spuijbroek 2011 [50]

n = 457 parents (83% mothers, 17% fathers)

Quantitative descriptive (n = 16) Bhuiyan 2017 [27] n = 39 families Carbonell-Estrany 2018 n = 105 caregivers (72% [28] mothers, 19% fathers, 9% other) Chan 2015 [29] n = 19,235 mothers Cunningham 2015 [30] Di Carlo 2010 [31]

n = 615 parents (93% mothers) n = 396 (50% mothers)

Freeman 2017 [32]

n = 225 caregivers

Golombek 2004 [33]

n = 1,446 caregivers (1,193 with data available)

Hasniah 2016 [34]

n = 308 caregivers (71% mothers) n = NR caregivers

Matias 2014 [38]

Hospital in the USA

RSV prophylaxis with Palivizumab 1. Compliant (n = 178) 2. Non-compliant (n = 33) Hospitalization for bronchiolitis

Hospital in Arkansas, USA RSV prophylaxis with: 1. Immune globulin (n = 82) 2. Palivizumab (n = 61) n = 415 infants hospitalized for bronchiolitis and Hospitals in 8 counties in 1. Hospitalized for bronchiolitis (n = 217) controls from the general population southeast health region of 2. Not hospitalized for bronchiolitis (n = 198) Norway n = 457 infants hospitalized for RSV bronchiolitis Hospital in the 1. Hospitalized for RSV and controls from the general population Netherlands bronchiolitis (n = 47) 2. Not hospitalized for RSV bronchiolitis (n = 410) n = 39 infants hospitalized for laboratoryconfirmed RSV infection n = 105 infants hospitalized with confirmed RSV LRTI; 52% with GA < 36 weeks

4 hospitals (3 public, 1 Hospitalization for RSV private) in Bangladesh 4 hospitals (2 in Italy, 2 in Hospitalization for RSV LRTI Spain)

n = 19,235 infants receiving RSV prophylaxis; 64% preterm n = 615 infants with bronchiolitis

32 immunization sites in Canada ED or acute area of 8 hospitals in the UK Infectious disease unit of a hospital in Italy

n = 198; hospitalized for bronchiolitis or pneumonia n = 225 infants hospitalized for hypoxemic bronchiolitis n = 1446 infants receiving RSV prophylaxis following discharge from the NICU

Worry, perceptions, barriers to compliance Impact of hospitalization and related factors

Normalization of family routine postdischarge, predictors of normalization Distress

Impact on emotions, time, and family cohesion Impact on emotions, time, and family cohesion

Family coping strategies related to costs Contributors to parent distress

RSV prophylaxis with Palivizumab

Reasons for non-compliance

Hospitalized for bronchiolitis

Anxiety related to bronchiolitis admission and recovery Information received from general practitioner or pediatrician about reducing the spread of ARIs Preferences and comfort with home oxygen; questions and concerns Experiences with in-home prophylaxis; reasons for non-compliance

Hospitalization for LRTI

Home setting, USA

Discharge on home oxygen

44-county region of New York State, USA

RSV prophylaxis with Palivizumab: 1. At home (n = 969) 2. At PCP office (n = 477) None. Parents were sampled while infants were Desire for more information on risks of at the hospital for consultation. environmental smoke exposure RSV prophylaxis with Palivizumab Reasons for non-compliance

ED or pediatric ward of a hospital in Malaysia Sites in Puerto Rico, USA

5

n = 308 infants diagnosed with asthma, bronchiolitis, or pneumonia n = 868 infants (55% preterm) receiving RSV prophylaxis

Preferences for treatment setting; adequacy of instructions Perspective on child’s experience and efficacy of the intervention

M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx

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Table 1 Characteristics of included studies on parents’ experiences and information needs related to bronchiolitis.

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Yael Kopacz 2013 [53]

ARI: acute respiratory infection; BPD: bronchopulmonary dysplasia; CLD: chronic lung disease; EAF: expiratory acceleration flow; ED: emergency department; LRTI: lower respiratory tract infection; RSV: respiratory syncytial virus; RTI: respiratory tract infection; TCM: Traditional Chinese medicine; URTI: Upper respiratory tract infection; UK: United Kingdom; USA: United States of America.

Hospitalization for RSV

Experience with hospitalization and oxygen therapy; information needs Experiences with RSV, self-reported knowledge and information needs Hospitalization for bronchiolitis

RSV prophylaxis with Palivizumab Hospital in Calgary, Alberta, Canada Xu 2006 [52]

Weber 2001 [51]

Hospital in Queensland, Australia Hospital in Alaska, USA

In-home RSV prophylaxis with Palivizumab Home setting, USA

2 TCM and 1 non-TCM hospitals in China Shang 2015 [49]

Rotegård 2007 [48]

n = 12 mothers (and 12 n = 12 infants hospitalized for bronchiolitis and nurses) requiring oxygen therapy n = 6 mothers (50% lived in n = 6 preterm infants hospitalized with RSV remote areas) infection

Barriers to compliance, worry about child’s health

Discharged from hospital following preterm birth Hospitalization in an isolation unit for RSV or gastroenteritis Treatment for bronchiolitis Hospital in Puerto Rico, USA Hospital in Norway Perez 2010 [42]

Paul 2002 [40]

Qualitative (n = 2) Peeler 2015 [41]

Reasons for non-compliance

RSV prophylaxis with Palivizumab at home Home setting, USA

Concerns and preferences for TCM or western medicine

Experiences and difficulties, sources of information Reasons for non-compliance

Self-reported knowledge about bronchiolitis Information received and needed

Parent-focused outcomes

RSV prophylaxis with Palivizumab

n = 216 caregivers (father or n = 216 infants (preterm or with other risk mother) factors) receiving RSV prophylaxis n = 175 caregivers n = 175 preterm infants receiving RSV prophylaxis n = 32 caregivers n = 32 late preterm infants; 3% with pneumonia, 9% bronchiolitis, 71% URTI n = 35 parents (some from n = 27 infants and young children hospitalized same family) with RSV (77%) or gastroenteritis (23%) n = 286 infants diagnosed with acute n = 286 caregivers (73% bronchiolitis mothers, 15% fathers, 12% grandparents) n = 396 caregivers n = 396 infants (95% preterm; 23% also had CLD or BPD, 4% other respiratory diseases) receiving RSV prophylaxis n = 123 infants (93% preterm) n = 107 caregivers (92% mothers, 5% fathers, 4% other) Pignotti 2006 [43]

Table 1 (Continued)

Children Parents or caregivers Study

Setting

Intervention or exposure

M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx

Hospital in Italy

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3.5.1. Being unprepared and afraid A child’s hospitalization for bronchiolitis was often unexpected, frightening and emotional [41,53]. Mothers felt unprepared for how quickly their child’s health deteriorated [41,53], and sometimes felt guilty for not having identified the condition sooner [53]. Peeler et al. described mothers’ perception of admission to hospital as a life-threatening crisis that they were not equipped to deal with [41]. Mothers panicked once they were informed of the severity of their child’s condition, and worried that the child might die [41,53]. Seeing their child in the oxygen hood or hooked up to machines was a shock [41,53], and mothers worried about whether their child would fully recover [41]. They also faced practical challenges, and worried about the contagiousness of RSV [41,53]. Conversely, Xu [52] showed that RSV prevention programs can provide parents with the peace of mind that their infant is being protected from a severe illness. 3.5.2. Feeling excluded and uninvolved The study by Peeler et al. showed that during hospitalization, mothers felt uninvolved in their child’s care [41]. Mothers felt excluded from their child’s care, and described feeling as though they were at the mercy of doctors and nurses, whom they did not always feel that they could trust [41]. This was especially the case when mothers felt uninformed about their child’s treatment and prognosis (see 3.5.4 Lacking Information). During their child’s treatment, mothers sometimes viewed nurses as unsympathetic because they perceived that nursing staff did not want them to touch their child (most often related to oxygen hood therapy) [41]. Mothers did not always understand why they were restricted from being involved in their child’s care, especially when the child was being treated in the oxygen hood [41]. During oxygen hood therapy, mothers felt physical and emotional isolation from their child [41]. Mothers described being unable to breastfeed, hold their child, or attend to their daily needs, all of which made them feel helpless [41]. 3.5.3. Mothering instincts Mothers felt that they had an important role to play in comforting their child, but often felt inadequate when they could not fulfill that role [41,53]. They instinctively wanted to hold and comfort their child to convey a message of love and support, and being unable to do so contributed to anxiety [41]. Some questioned their ability to be a ‘good mother’ when they felt that all they could do was sit and watch their child suffer [41]. Mothers also felt a need to stay in the hospital to be close to their child [41,53]. They did not trust that staff could care for their child in the same way that they could, or that someone would be there to comfort their child when they were gone [41]. This lack of trust in nursing staff sometimes made parents feel trapped, as if they were ‘stuck in the hospital’ [53]. 3.5.4. Lacking information A lack of information and understanding seemed to an important contributor to the feelings of fear, isolation, and helplessness described in the preceding themes. Parents could tell that their child was sick, but did not always think that they could correctly identify the signs of a RSV infection [41,53]. They sometimes felt unaware of what symptoms might warrant further medical care, but knew when their child needed to go to the hospital [41,53]. Once their child was hospitalized, mothers felt that they did not receive clear explanations of what was happening [41]. Mothers believed that receiving timely information would help to alleviate their fears and help to establish a trusting relationship with healthcare providers [41]. However, because the hospital experience was overwhelming, mothers found it difficult to take in information during this stressful time [53].

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Fig. 2. Summary of quality appraisals of the included studies.

4. Discussion and conclusion 4.1. Discussion We synthesized evidence on parent experiences and information needs related to bronchiolitis, which was primarily quantitative and focused on experiences related to hospitalization (i.e., severe cases). Though many children with bronchiolitis may be cared for at home, we located very little research on parent experiences in this setting. It was clear that most parents felt unprepared to deal with hospitalization. Mothers in particular wanted to take an active role in their child’s care but often felt isolated, uninformed, and misunderstood by healthcare providers. Conversely, RSV prophylaxis programs provided parents with peace of mind. Although parents’ need for information was clear, we located only limited research to inform the type, timing, and source of information that they would find most useful. Many parents have difficulty assessing the seriousness of respiratory tract infections [13,56], which may lead to missed opportunities for timely treatment. Qualitative evidence showed that parents did not always recognize the symptoms of bronchiolitis but realized their child’s condition was serious [41,53]. Recognizing the need for further care is important, because parents may hesitate to seek care if they believe that their concerns will not be taken seriously [56]. However, parents’ preferences or desires regarding their child’s treatment may not always align with evidence-based standards of care, especially if they believe their child’s illness to be severe [14]. For example, many parents overestimate the effectiveness of antibiotics for respiratory tract infections [57]. Advice for parents on how best to care for their child at home, and how to distinguish between clinically important and unimportant symptoms, may provide reassurance and ensure that children who need further care receive it in a timely way. Parents commonly experienced negative emotional, time, and health impacts related to their child’s hospitalization. Healthcare professionals are uniquely positioned to support parents, but the study by Peeler et al. [41] showed that healthcare providers may not fully appreciate the intensity of fear that parents experience. A 2017 systematic review showed that coping support interventions for parents during acute hospitalizations were feasible to implement and resulted in reduced parent anxiety and stress [58]. Similar to previous research on the experiences of hospitalized children [59,60], several studies showed that the distress of a bronchiolitis hospitalization can extend for weeks after discharge

[36,37]. Nevertheless, Rotegård et al. [48] found that few parents received any information about what to expect after leaving the hospital. The disruption of a parent’s usual role in their child’s care can be an important source of stress during hospitalization for an acute illness [61]. We found that parents wanted to take an active role in their child’s care but often felt isolated and misunderstood [28,37,41]. Current evidence suggests that the family-centered care model, which supports a family’s unrestricted presence during a child’s hospitalization, may improve clinical care and parent satisfaction [62]. Especially when they are unable to comfort and care for their child physically, parents should be provided with alternate means of taking an active role. For example, most parents are interested in engaging in shared decision-making about their child’s treatment [63]. Despite identifying that parents of children with bronchiolitis have high information needs that are often not being met, we located very little information on the type, quantity, or timing of information that would be most desirable. We also located no information on parent decision-making regarding RSV prophylaxis, though a few studies indicated that parents lacked knowledge about the spread of RSV [31,42,52]. Research on parent experience with respiratory tract infections shows that parents desire consistent advice from a number of trusted sources [13]. Gaps in knowledge about how parents would like to receive information about bronchiolitis will need to be addressed to inform knowledge products. This review was limited by the fact that we located few studies on parent experiences of home care, indicating that our sample is biased toward more serious cases of bronchiolitis requiring hospitalization. Participants were predominantly mothers. The findings may be less directly applicable to fathers, and to parents of children with less severe cases of bronchiolitis. We located only two qualitative studies, thus the generalizability of the qualitative findings may be limited (e.g., may not reflect practices occurring in other settings). We minimized the potential for interpretive bias via the use of inductive coding techniques and verification of the codes, categories and themes by a second researcher. 4.2. Conclusion Parents may not always be aware of how to prevent bronchiolitis or be able to recognize the symptoms that indicate a need for a higher level of care. Hospitalization can be frightening

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and stressful, and mothers often feel restricted from taking an active role in their child’s care. Though many cases of bronchiolitis can be treated at home, we located limited information on the experiences of parents caring for a child in this setting, or about the decision to participate in RSV prophylaxis. These should be a focus in future research. Timely information and support from healthcare providers may help to alleviate parents’ fears and help parents understand how they can be involved in their child’s care. 4.3. Practice implications

MMAT:Mixed methods appraisal tool; RCT: randomized controlled trial; RSV: respiratory syncytial virus. a Detailed results for all studies are shown in Appendix A.

1 RCT (one arm) 7 descriptive Information sources and needs

50% (0% to 75%)

2 non-randomized 7 descriptive Experiences and barriers related to RSV prophylaxis

75% (25% to 75%)

3 RCT 2 descriptive Experiences related to treatment

50% (0% to 75%)

Hospitalization can have negative emotional, time and health impacts on parents which may endure for several weeks postdischarge (n = 4 studies). Contributors to distress included observing painful procedures, changing roles, worry about the future, inability to comfort child, finances (n = 3). 681; Parents preferred treatment via the oxygen hood to a face mask (n = 1 study), but had no preference for varied physical therapy 92 (29 to 286) treatments (n = 1). Parents preferred home oxygen over hospitalization (n = 2), despite the associated challenges (e.g., inconvenience, time off work). 22,813; Participation in RSV prophylaxis could contribute to distress (n = 2 studies). Barriers to compliance included worry about adverse 216 (123 to 19,235) effects, costs and insurance issues, scheduling repeated visits, and transportation difficulties (n = 8). Parents preferred in-home to office-based programs (n = 1). 1,427; Parents lacked knowledge about bronchiolitis and the spread of RSV (n = 2 studies). Sources of information included nurses and 170 (32 to 396) neonatologists, written materials, pediatricians, friends and family (n = 2). Parents of hospitalized children had high information needs that often were not being met (n = 1). 2,782; 415 (39 to 615) 75% (50% to 75%) Experiences related to hospitalization

6 non-randomized 3 descriptive

N parents; median (range) Intervention or exposure

Contributing studies

Median (range) MMAT criteria met

Main outcomesa

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Table 2 Summary of the main quantitative findings regarding parent bronchiolitis-related experiences and information needs.

8

Having a child with bronchiolitis can be stressful experience, and qualitative information from this review indicates that HCPs may not always fully appreciate the extent of fear that parents experience [41]. Much of parents’ fears may be related to feeling uninformed about what is happening to their child. Parents want to be involved in their child’s care but often feel isolated. By providing timely information and support, HCPs are in a position to help ease parents’ fears and allow them to feel more engaged in their child’s care. Because this review located limited evidence to inform the timing, type, and source of information parents would prefer, parent stakeholders will need to be engaged to inform useful evidencebased knowledge translation products for both parents and HCPs. We located limited information specific to parents caring for a child with a mild case of bronchiolitis at home. Still, it is clear that waiting until a child is hospitalized to provide information is not ideal, as parents may be too overwhelmed at that time to be able to process much new information [41,53]. Drawing from research on respiratory tract infections in general, information provided to parents in advance of their child’s illness can help them to understand when to seek care [64]. It is recommended that these include mention of specific symptoms, engage the child if possible, and include relevant illustrations to make them more accessible [64]. Engagement of parent stakeholders will be needed to tailor these recommendations and inform their applicability to bronchiolitis in specific. Funding Support was received from the Network of Centres of Excellence in Knowledge Mobilization, TREKK (TRanslating Emergency Knowledge for Kids), and the Women and Children’s Health Research Institute. SS is a Canada Research Chair (Tier II) for Knowledge Translation in Child Health. The study sponsors had no role in the study design; collection, analysis and interpretation of data; writing the report; nor the decision to submit the manuscript for publication. Declarations of interest The authors have no real or perceived conflicts of interest relevant to this article to disclose. Data availability The data associated with this manuscript are available from the corresponding author upon reasonable request. Protocol registration PROSPERO registration #CRD42017079985 Acknowledgments We thank MacKinna Hauff for assisting with article retrieval. We thank the following individuals for assisting with full text

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screening of non-English articles: Alba Antequera (Spanish), Jorge Andrés Delgado Ron (Spanish), Tine Emily Stower (Danish), Izabela Figueiredo (Portuguese). There are no conflicts of interest or funding sources to declare.

Study, Design, Funding source

Participantsb and setting

Interventions or exposures

Experiences with hospitalization Caregivers (72% CarbonellHospitalization for RSV Estrany 2018 mothers, 19% fathers, 9% lower respiratory tract Crossother or not reported) of illness sectional 105 infants (56% male; Industry range 0-24 months; 52% funding GA < 36 weeks) hospitalized in the past 2 years with a RSV lower respiratory tract illness in Italy and Spain

Bhuiyan 2017 Crosssectional Government funding

Cunningham 2015 RCT Government funding

Rolfsjord 2015c Nonconcurrent cohort Government funding

Lapillone 2012 Crosssectional Industry funding

Caregivers of 39 infants Hospitalization for RSV (69% male; median 4, illness IQR 3-7 months) hospitalized for RSV at 3 public and 1 private hospital in Bangladesh

9

Appendix A. Detailed characteristics and results of the included quantitative studies Detailed description of studies reporting quantitative data on parent experiences related to bronchiolitis (n = 23).a

Data collection

Results

Contributors to parent distress assessed during hospitalization and after discharge using a Parent Distress Questionnaire including 110 potential factors scored from 0 (very unimportant) to 10 (very important)

Top contributors to distress were (mean (SD)): need to be sure that clinical staff were aware of latest developments (8.2 (7.0)); worry about readmission (8.1 (2.0)); fear of further infections (8.0 (2.3)); stressful, painful, or invasive procedures (8.0 (2.3)); positive experience with HCPs (7.7 (2.2)); serious breathing difficulty/need for respiratory therapy (7.4 (2.6)); exacerbation of problems of prematurity (7.4 (2.7)); ongoing health issues (7.1 (3.0)). Most important financial factor: rearranging work schedules or taking time off (mean 5.77); 19% reported severe detrimental impact on work productivity. Multivariate analysis: significant drivers of distress in hospital were providing comfort for their child, having good contact with HCPs, feeling they received positive treatment, positive experience in PICU (all p < 0.001). At discharge, significant driver was need for clinicians to have better training (p < 0.01). Coping strategies in poorer (n = 20) vs. wealthier (n = 19) families: 3 (15%) vs. 2 (11%) received a contribution from relatives; 13 (65%) vs. 7 (37%) borrowed money (loans); 14 (70%) vs. 6 (32%) decreased their monthly food expenditures.

Coping strategies used to deal with treatment costs assessed via structured questionnaire at a home visit posthospitalization (mean 26, range 8 to 47 days) Parents (93% mothers) Hospitalization; Parent anxiety assessed Median (IQR) anxiety scores did not change significantly over time. At treatment with a of 615 infants (57% using the Hospital admission:7 (4 to 11); 7 days: 4 (2 to 7); 14 days: 3 (1 to 5); 28 days: 3 (1 male; median 5.3, IQR standard pulse Anxiety and Depression to 6); 6 months: 4 (1 to 7). 2.9-7.9 months; 13% oximeter vs. a modified Scale at admission and preterm) with pulse oximeter that 7, 14, 28 days and 6 bronchiolitis (73% RSV showed an oxygen months +) at 8 hospitals in the saturation of 85-94% UK when it was really 8590% so that improvement would appear more rapid than it was in reality Parents of 217 infants Hospitalization for Parental emotional and Parent emotional impact in bronchiolitis vs. control group, mean (95% (59% male; mean 4.1 acute bronchiolitis (3 time impact, and family CI): 93.6 (92.7 to 94.5) vs. 93.5 (92.6 to 94.4), ns; by subgroup, mean months) hospitalized severity groups: no cohesion measuring (variance): no supportive treatment (n = 104): 93.7 (1.0), supportive for acute bronchiolitis supportive treatment, using the Infant Toddler treatment (n = 91): 93.7 (1.2), ventilator support (n = 14): 89.1 (3.4); in in 8 counties in Norway, supportive treatment, Quality of Life regression analysis, ventilator support was associated with lower and 198 control infants ventilator support) vs. Questionnaire at 8-9 impact on emotions after controlling for age, gender, one previous (56% male, mean 6.4 controls who were not months after obstruction (regression coefficient (95% CI) vs. no support): -5.2 (-9.4 to months) from the hospitalized for hospitalization -1.0), p < 0.05. general Norwegian bronchiolitis Parent time impact in bronchiolitis vs. control group, mean (95% CI): population 94.1 (92.9 to 95.2) vs. 94.1 (93.0 to 95.3), ns; by subgroup, mean (variance): no supportive treatment (n = 104): 94.7 (1.2), supportive treatment (n = 91): 95.4 (1.2), ventilator support (n = 14): 89.3 (4.2); in regression analysis, ventilator support was associated with lower impact on time after controlling for age, gender, one previous obstruction (regression coefficient (95% CI) vs. no support): -6.5 (-11.9 to -1.0), p < 0.05. Family cohesion in bronchiolitis vs. control group, mean (95% CI): 85 (85 to 85) vs. 85 (85 to 85), ns. Parents (87% mothers) Mean (SD) IBHQ at discharge (n = 91 to 315): worries and distress 57.5 Hospitalized for Impact of of 463 infants (55% bronchiolitis hospitalization on (23.5), fear for future 66.6 (27.2), male; 3.3 (2.7) months, parents assessed at 1 guilt 38.0 (25.5), daily organization 62.7 (23.6), physical 55.4 (21.0), 28% preterm) week and 3 months behavior with hospitalized infant 55.3 (25.5); finances 21.4 (19.4), hospitalized for post-discharge using breastfeeding 49.5 (33.0), bronchiolitis (of 92% the Impact of physical reaction of hospitalized infant 30.5 (25.9), tested, 72% RSV+) at one Bronchiolitis feeding of hospitalized infant 40.1 (26.1), behaviour with other children Hospitalization of 77 hospitals in France 56.6 (27.5). Questionnaire (IBHQ); Mean (SD) IBHQ at 3-months post-discharge (n = 82 to 314): worries scales from 0 (no and distress 45.4 (26.8), fear for future 59.0 (28.3), guilt 34.1 (26.6), daily impact) to 100 organization 18.4 (18.8), physical 39.6 (24.2), behavior with (maximum) hospitalized infant 45.8 (24.4), financial 13.3 (14.0), breastfeeding 43.5 (35.2), physical reaction of hospitalized infant 18.0 (22.0), feeding of hospitalized infant 15.6 (18.9), behaviour with other

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M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx (Continued)

Study, Design, Funding source

Participantsb and setting

Spuijbroek 2011 Crosssectional Funding NR

Parents (83% mothers) of 47 infants (45% male; median 2, IQR 1-9 months) hospitalized for RSV bronchiolitis, and 410 control children (50% male; median 24, IQR 13-25 months) without bronchiolitis in the Netherlands

Robbins 2006 Retrospective cohort Industry funding

Parents of 486 infants 12 months hospitalized for their first episode of bronchiolitis (55% male; 66% < 4 months; 19% preterm) in the USA

Leidy 2005 Prospective cohort Industry funding

Mothers (93%) or female legal guardians of 46 preterm infants (51% male; 10.2 (9.3) months) admitted to one of 5 hospitals in the USA with RSV lower respiratory tract infection, and 45 controls (49% male; 10.6 (9.1) months) who were not admitted

Mendez Rubio 2005 Crosssectional Industry funding

Caregivers of 216 preterm infants (60% male; age NR), 72 (33%) of which were hospitalized for a respiratory tract infection during one RSV season in Spain

Interventions or exposures

Data collection

Results

children 39.8 (28.7). Multivariate model (discharge): Longer hospitalization associated with greater impact on worry and distress (p < 0.001), fear for future (p = 0.006), daily organization (p = 0.015), finances (p = 0.007), feeding (p = 0.007). Parent education level associated with worries and distress (p < 0.001), fear for future (p = 0.0064), guilt (p < 0.001), and impact on daily organisation (p < 0.001) (parents in extreme categories, i.e., <5 and >16 years education) experienced less emotional impact and higher daily organisation impact than those with 5-16 years of education. Multivariate model (3-month follow-up): Longer hospitalization associated with greater impact on worries and distress (p = 0.024), fear for future (p = 0.019), daily organization (p < 0.001), physical impact (p = 0.025). Parent education level associated with worries and distress (p < 0.001), fear for future (p = 0.004), impact on daily organisation (p = 0.034), impact on behaviour with hospitalised infant (p = 0.021), financial impact (p = 0.001), physical reaction of hospitalised infant (p = 0.049), impact on feeding of hospitalised infant (p = 0.004) Parental emotional and Emotional impact in bronchiolitis vs. controls, mean (SD): 85.3 (17.3) Hospitalized for bronchiolitis vs. time impact, family vs. 92.1 (10.5), p < 0.05. controls who were not cohesion measured Time impact in bronchiolitis vs. controls, mean (SD): 85.5 (21.0) vs. 93.0 hospitalized using the Infant Toddler (11.0), p < 0.05. Quality of Life Family cohesion in bronchiolitis vs. controls, mean (SD): 80.9 (17.4) vs. Questionnaire at 2 to 6 75.3 (18.8), ns. months posthospitalization; scale from 0 (worst possible score) to 100 (best possible score) Hospitalization for Normalization of family Family routine: returned to normal at approximately the same rate as bronchiolitis. 73% were routine at mean 9.1, the infant's feeding, sleeping, and activity levels. 73% were back to a back to a normal routine standard deviation 3.6 normal routine at 5 days post-discharge, 19% were not. at 5 days postdays post-discharge, In logistic regression, predictors of delayed return to normal routine discharge, 19% were not. assessed using a pilot- were commercial insurance (vs. Medicaid or self-pay, OR 1.81, 95% CI tested questionnaire 1.00, 3.31), longer time since hospital discharge (OR 1.07, 95% CI 0.99, 1.17), and having infants with 5 days of difficulty sleeping (OR 2.65, 95% CI 1.42, 4.96), activity limitations (OR 2.98, 95% CI 1.27, 7.00), were not as happy or content as usual (OR 2.62, 95% CI 1.05, 6.52). Parental Stressor Scale (mean (SD) in RSV group): 3.06 (0.79); most Hospitalization with Caregiver and family RSV lower respiratory distress assessed using stressful experiences were watching the child undergo procedures, tract infection vs. no the Parental Stressor change in parental roles, concerns about not taking care of child admission Scale (scores range from themselves, not being able to be with crying child, not seeing child 1-5), Parental Concerns when they wanted. Scale (1 to 4), Parental Concerns Scale (mean (SD) in RSV group): 3.05 (0.67); most Spielberger State-Trait concerned about parenting and the child’s experiences during Anxiety Inventory (20- hospitalization. Caregiver state anxiety (mean (SE)): admission: control 28.2 (3.4), RSV 80), Global rating of stress (1-7) and health 50.8 (3.7), p < 0.0001; ns difference at days 4, 14, 21; day 60: control 26.1 (0-100), and Family (2.4), RSV 30.6 (3.0), p < 0.05. Adaptability and Caregiver stress (mean (SE)): admission: control 4.00 (0.6), RSV 5.4 Cohesion Evaluation (0.3), p < 0.001; ns difference at day 4; day 14: control NR, RSV 2.8 (0.6), Scale (0-100), during p < 0.01; ns difference at day 21; day 60: control 3.4 (0.6), RSV 2.5 (0.6), admission and at days 4, p < 0.05. 14, 21, and 60 postCaregiver health (mean (SE)): admission: control 87.6 (4.2), RSV 80.6 discharge (6.2), p < 0.05; ns difference at day 4, 14, 21, 60. Family cohesion (mean (SE)): admission: control 69.6 (1.9), RSV 64.0 (3.4), p < 0.001; day 4: control NR, RSV 65.6 (2.7), p < 0.05; ns difference at day 14, 21, 60. Family adaptability (mean (SE)): admission: control 52.4 (1.7), RSV 48.0 (2.0), p < 0.01; ns difference at day 4; day 14: control NR, RSV 48.9 (2.2), p < 0.05; Day 21: control NR, RSV 49.4 (2.5), p < 0.05; ns difference at day 60. Family health (mean (SE)): control 92.6 (3.0), RSV 84.0 (5.0), p < 0.0001; day 4: control NR, RSV 86.8 (3.3), p < 0.05; ns difference at day 14, 21, 60. Mean (95% CI) overload: not admitted (n = 128) 7.6 (6.4-8.8) vs. Caregiver overload Hospitalization for a respiratory tract assessed with the Carer admitted (n = 70) 8.9 (7.2-10.6), p < 0.05. infection (of n = 72, 82% Overload Scale of Zarit Mean (95% CI) physical quality of life (SF-12): not admitted (n = 138) had bronchiolitis; 48% (Likert scale of 0 (never) 52.9 (51.8-54.1), admitted (n = 69) 50.6 (48.7-52.5), p < 0.05. RSV+) to 4 (almost always), Mean (95% CI) mental quality of life (MCS-12): not admitted (n = 138) total 0 to 44) and quality 49.0 (47.4-50.7), admitted (n = 69) 47.9 (45.4-50.4), ns. of life with the SF-12 and MCS-12 at the time of admission or end of the RSV season

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx Experiences and Freeman 2017 Prospective cohort No funding

preferences for treatment Following an 8-hour Caregivers of 225 infants (54% male; observation period, median 7, IQR 7-11 infant was discharged months) who visited on home oxygen the ED of a hospital in the USA with bronchiolitis and hypoxia

Caregivers (73% mothers, 15% fathers, 12% grandparents) of 286 children (74% male; range 27 days to 34.4 months) hospitalized with acute bronchiolitis in 3 hospitals (2 nontraditional, 1 traditional Chinese medicine (TCM)) in China Remondini 2014 Parents of 29 infants RCT (sex distribution NR; Funding NR mean 5.8, range 3 to 12 months) hospitalized with bronchiolitis in the ICU or pediatric ward of a hospital in Brazil Shang 2015 Crosssectional Government, academic funding

Hospitalized for bronchiolitis in TCM and non-TCM hospitals

Caregivers’ concerns and preferences regarding traditional Chinese medicine assessed via structured interview using a questionnaire

Physical therapy: postural drainage with tapping and tracheal aspiration vs. postural drainage with expiratory acceleration flow (EAF) and tracheal aspiration

Parent perceptions of the intervention assessed via 14-item questionnaire before the last physical therapy treatment

Aerosol (1.5 mg epinephrine in 4 ml hypertonic saline or placebo) delivered by: Baby Air device (hood) or conventional face mask Mothers of 92 infants Following deep nasal Bajaj 2006 RCT (57% male; mean 7.8, suctioning, 2 albuterol Research range 2-23 months) treatments (2.5 mg) via institute, presenting to the ED of a nebulizer, 8-hour industry children’s hospital in observation period: funding the USA with viral portable home oxygen bronchiolitis unit with 1 L nasal cannula oxygen vs. traditional inpatient hospitalization Experiences and barriers to RSV prophylaxis Parents of 19,235 Receiving RSV Chan 2015 Prospective infants (57% male; 5.6 prophylaxis with cohort (6.3) months; 64% Palivizumab; 61% Industry preterm) enrolled in the compliance funding Canadian Registry of Palivizumab (CARESS) over 10 RSV seasons, with 32 immunization sites across Canada Receiving RSV Golombek 2004 Caregivers of 1446 Prospective infants (56% male; age prophylaxis with cohort NR, mean GA 30.7 (3.7) Palivizumab. Parents Industry weeks) discharged from chose to have injections funding the NICU of the 44delivered every 30 days county region of New by a nurse at their home York state, USA, (n = 969, 98% receiving RSV compliant), or in their prophylaxis during one primary care provider’s season office (n = 224, 89% compliance). Receiving RSV Langkamp 2001 Caregivers (85% Crossmothers) of 211 infants prophylaxis with sectional (demographic Amirav 2005 RCT Funding NR

Parents of 49 infants (69% male; 2.7 (2.2) months) hospitalized with viral bronchiolitis (88% RSV+) in Israel

Parent preferences and opinion assessed via interview, e-mail or mailed questionnaire. Caregiver comfort level with home oxygen assessed on a scale of 1 (very uncomfortable) to 10 (very comfortable).

Parent assessment of treatment tolerability collected via response to one question at the end of the study

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Median (IQR) caregiver comfort level: 9 (8-10) for those successfully treated (n = 188), 9 (7-10) for failures (n = 11). Concerns (n = 225): 45 (20%) reported problems including 27 (12%) child non-compliance (note: assumed to mean removal of nasal prongs or face mask), 3 (1%) difficulty operating the tank, 3 (1%) ran out of oxygen. Other concerns were delay in home health company receiving or discontinuing orders, difficulty figuring out the flow rate, child getting tangled in the tubing, inconvenience. Preferences related to observation period (n = 188): 145 (64%) appropriate, 35 (16%) too long, 8 (4%) too short. Choice of home oxygen (n = 188): 166 (88%) would choose home oxygen over hospitalization. For those who did not, reasons were child noncompliance, difficulty arranging time off work or travelling to appointments, communication challenges, feeling scared or uncomfortable (n = 8), concern about lack of monitoring (n = 9). Concerns about TCM drugs (% no vs. moderate vs. very): Efficacy: 1.1 vs. 4.5 vs. 94.4; safety: 0.3 vs. 3.5 vs. 96.2; price: 51.4 vs. 26.2 vs. 22.4. Preference for TCM drugs: 73.1% Reasons to prefer TCM drugs: 8.1% more trust in TCM or believe TCM is better, 9.1% feel TCM is more efficient, 63.7% less toxicity/fewer adverse effects, 14.8% feel TCM is more efficient and safer, 4.3% other. Reasons to prefer non-TCM drugs: 41.5% taste better, 31.2% act faster, 9.1% less toxicity/adverse effects, 7.8% child is too young, 10.4% other.

Parent perceptions for tapping (n = 15) vs. EAF (n = 13): Child was calm (% yes): 93.8 vs. 100, classification of maneuvers (% relaxing (vs. tiring)): 100 vs. 100, maneuvers helped improve breathing (% yes): 93.8 vs. 100, child was calm during aspiration (% yes): 100 vs. 100; tracheal aspiration helped improve breathing (% yes): 100 vs. 100; treatment performed by different professionals were similar (% yes): 100 vs. 100, child benefitted (% yes): 93.8 vs. 100, improved child’s sleep (% yes): 81.3 vs. 76.9, improved difficulty in breathing (% yes): 100 vs. 92.3, improved feeding (% yes): 43.8 vs. 53.8, improved nasal congestion (% yes): 87.5 vs. 84.6, improved mood (% yes): 43.8 vs. 61.5, would recommend this treatment (% yes): 93.8 vs. 100. No significant differences for any outcome. Perception of tolerance: 39/49 (80%) believed the hood was better tolerated; 9/49 (18%) preferred the mask; 1/49 (2%) indifferent.

Parent preferences collected via telephone follow-up at 72 hours post-discharge or 1 week posthospitalization

Home oxygen group (n = 33): 26 (79%) preferred to be at home, 5 (15%) would have preferred to be in hospital; 2 (6%) had no preference. [1](3%) believed the parent observation was too short, 13 (40%) thought it was right, 15 (45%) too long. Hospital group (n = 33): 12 (36%) would have preferred home care, 16 (49%) preferred to be in hospital, 5 (15%) had no preference.

Parent reasons for discontinuation of prophylaxis assessed monthly during prophylaxis via interview in person or over telephone

Reasons for non-adherence included travel or relocation (n = 153, 18.6%), adverse events (n = 33, 4.0%), presumed inadequate response from Palivizumab (n = 9, 1.1%), other miscellaneous reasons (n = 139, 16.9%), loss to follow-up (n = 355, 43.1%), withdrawal from the study (n = 87, 10.6%), death (n = 47, 5.7%).

Parent experiences with the in-home Palivizumab prophylaxis program and reasons for noncompliance assessed via interview by a nurse at completion of the program, using standard questions Parent worry assessed on a 4-point Likert scale from 1 (not at all) to 4 (a

Convenience: More parents in the in-home group thought the program was convenient vs. the office setting group (p < 0.01, data NR). Reasons for missed or late injections: inability to locate (e.g., no phone), family moved and did not notify anyone, refusal by parents, insurance issues (e.g., lost appeals, failure to enroll), scheduling problems with noncompliance by parents (e.g., ‘no show’ at appointments).

Parent worry ‘a great deal’ in compliant (n = 178) vs. non-compliant (n = 33) patients: 74% vs. 68% about child health, 47% vs. 36% about child’s lung condition, 60% vs. 65% about child getting RSV, 12% vs. 12%

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx (Continued)

Study, Design, Funding source Industry funding

Pignotti 2006 Crosssectional Funding NR

Matias 2014 Retrospective cohort Industry funding Paul 2002 Nonconcurrent cohort Funding NR

Robbins 2002 Retrospective cohort Funding NR

Participantsb and setting

Interventions or exposures

Data collection

characteristics NR; 97% premature 35 weeks, 1% CLD from other causes) eligible to receive Palivizumab, administered at a Hospital in Columbus, Ohio, USA during one RSV season

Palivizumab (84% compliance)

Parents of 216 infants (sex distribution NR; 4.7 (4.1) months; preterm or with other risk factors) receiving Palivizumab prophylaxis over 4 RSV seasons at a hospital in Florence, Italy Parents of 868 mostly preterm or at-risk infants (53% male; age NR) receiving RSV prophylaxis during one season in Puerto Rico Parents of 175 preterm infants (demographics NR) receiving Palivizumab prophylaxis at home during one RSV season in the USA Parents (91% mothers) of 143 infants (85% male, 4.6 (4.5) months; 16% preterm, 64% on oxygen for CLD) receiving RSV prophylaxis during two RSV seasons in the USA

Receiving RSV prophylaxis with Palivizumab (87% compliance)

about side effects, 16% vs. 19% about injection discomfort, ns. Parent health beliefs ‘a great deal’ in compliant vs. non-compliant patients: 48% vs. 52% for susceptibility to RSV, 64% vs. 48% that lungs will worsen with RSV, ns; 67% vs. 48% for benefit of Palivizumab, p = 0.04. Barriers to compliance ‘a great deal’ in compliant vs. non-compliant patients: 65% vs 69% for costs, 86% vs. 73% for scheduling, ns; 85% vs. 65% for difficulty with transportation. Concerns: 25% of parents expressed concern about costs of Palivizumab or time spent negotiating with insurance company. Logistic regression for compliance: Only significant factors were greater benefits/reduced barriers (OR 1.54, 95% CI 1.10 to 2.16, p = 0.01), interaction about worry about disease and insurance (OR 6.62, 95% CI 1.22 to 35.97, p = 0.03), i.e., increased worry improved compliance only in those receiving Medicaid. Parent experiences with General impressions: 88% felt that the program was positive, did not the prophylaxis consider the monthly schedule to be stressful. program assessed via Distress: 12% witnessed their infants in distress during injections; 55% questionnaire at the end were distressed during their child's treatment, but 96% said they would of the RSV season participate again. Barriers: Planning appointments, distance to the hospital, and transportation were not barriers; 5% had difficulty in the management of other children; 2% incurred additional costs; 88% took time off work for the treatments, but did not say this was a problem. Parent reasons for non- Reasons for non-compliance: non-approval by the medical insurance compliance with RSV (53%), unavailability of the parents (31%), sick infant (11%), not being prophylaxis program able to afford co-pay (3%), lack of transportation (1%), and no interest in assessed via the prophylaxis (1%). retrospective chart review Parent reasons for non- Reasons for missing doses: parental refusal of further dosing and third compliance with RSV party payers refusing to pay for the home administration. prophylaxis program were collected (method NR), presumably at completion of the program Parent experiences of Parent distress score in RSV-IG vs. Palivizumab group, mean (SD): 1.8 observing infant (0.7) vs. 1.2 (0.3), p < 0.001. distress assessed using Parent distress for aspects of the procedure in RSV-IG vs. Palivizumab the Parent Distress group: bothered by watching (% moderately/very): 21.9 vs. 3.4, p < 0.01; Scale during telephone upset by seeing nurse hold baby down (% somewhat/very): 42.9 vs. 4.9, interviews at the end of p < 0.01; upset by needle stick (% somewhat/very): 54.4 vs. 9.8; upset by each RSV season length of treatment (somewhat/very): 16.5 vs. 3.3, p < 0.05; upset by seeing needle taken out (% somewhat/very): 13.0 vs. 1.6, p < 0.05; turned away during procedure (% yes): 38.4 vs. 19.7, p < 0.05; left the room during procedure (% yes): 12.3 vs. 0.0, p < 0.01; cried during procedure (% yes): 21.9% vs. 1.6%, p < 0.01. Preferences: 91% preferred the in-home program (vs. physician’s office) Parent preferences assessed using a survey if they were to have another high risk infant. after the last visit, and Reasons for non-compliance: family relocation, change in health reasons for nonservices agency, change in third-party payer requirements. compliance with the inhome prophylaxis program assessed monthly via nurse records from the home visits Opinions and barriers to Barriers to participation, % somewhat/a great deal: worry about sideparticipation and effects (n = 107): 19.6, worry about discomfort (n = 107): 24.3, repeated caregiver opinions (monthly) hospital visits (n = 104): 9.6, difficulty scheduling time for regarding their infant’s visits (n = 104): 9.6, difficulty in transportation (n = 104): 8.7, poor health were assessed weather (n = 104): 7.7. using closed-ended Worry about child’s health, % a great deal (n = 107): physical health: questions in a 44.9, susceptibility to general illness: 39.3, infant would get RSV telephone infection: 24.3, infant had high risk of RSV: 32.1, infant’s lungs would questionnaire (4-point worsen if got RSV: 61.7. Likert scale from 1 (not Opinions on the program (n = 107): 92% believed it was somewhat to at all) to 4 (a great very convenient. Primary inconvenience was difficulty parking. All but deal)). Timing NR. one believed that the program would help infants somewhat to greatly. 92.4% would be somewhat or very likely to participate again. Preferences about where injections are received (n = 107): 56.7% inhome, 16.5% community health centre, 13.4% hospital clinics, 13.4% family doctor’s office.

Receiving RSV prophylaxis with Palivizumab (<50% compliance)

Receiving RSV prophylaxis with Palivizumab, with injections administered at home (67% compliance) Receiving RSV prophylaxis with RSV immune globulin (RSVIG; 62% compliance) or Palivizumab (86% compliance)

Weber 2001 Nonconcurrent cohort Funding NR

Parents of 396 infants (53% male, mean 7.5, range 1-48 months; 95% preterm, 20% also had CLD or BPD) receiving in-home RSV prophylaxis with Palivizumab during one RSV season in the USA

Xu 2006 Retrospective cohort Funding NR

Primary caregivers (92% Receiving RSV mothers) of 123 infants prophylaxis with receiving RSV Palivizumab prophylaxis with Palivizumab during one RSV season at a hospital in Calgary, Canada

Receiving in-home RSV prophylaxis with Palivizumab (85% completion; 98% compliance)

Results

great deal). Parent perceptions and barriers to compliance measured via questionnaire at the end of the RSV season

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx a

Organized by topic, then by year of publication. b Age reported as mean (standard deviation) unless otherwise specified. c Some of the presented data are from the associated publication, Rolfsjord et al., 2016. Abbreviations: BPD: bronchopulmonary dysplasia; CI: confidence interval; CLD: chronic lung disease; ED: emergency department; GA: gestational age; HCP: healthcare provider; IQR:

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interquartile range; NR: not reported; ns: not statistically significant; OR: odds ratio; RCT: randomised controlled trial; RSV: respiratory syncytial virus; TCM: traditional Chinese medicine; UK: United Kingdom; USA: United States of America. Summary of studies reporting quantitative data on parent information needs related to bronchiolitis (n = 8)a

Study, Design, Funding source

Participantsb and setting

Interventions or exposures Data collection

Results

Freeman 2017 Prospective cohort No external funding

Caregivers of 225 infants (54% male; median 7, IQR 7-11 months) who visited the ED of a hospital in the USA with bronchiolitis and hypoxia

Following an 8-hour observation period, infant was discharged on home oxygen

While 179/225 (79.6%) reported no additional concerns, some had questions about viral illnesses and the expected duration of home oxygen.

Hasniah 2016 Crosssectional Government funding

Caregivers (71% mothers, 29% other) of 308 infants (sex distribution NR; 60 (6) months) diagnosed with asthma (60%), bronchiolitis (13%), or pneumonia (23%) at a hospital in Kuala Lampur, Malaysia Parents (n = 396, 50% mothers, 50% fathers) of 198 infants (59% male; median 7, range 0.5-24 months; of 157 virological tests, 62% were RSV+) hospitalized for a lower respiratory tract infection in Italy Parents (n = 32) of preterm infants (sex distribution NR, <6 months) born at a hospital in Puerto Rico over a one-year period

Visiting the hospital or hospitalized for asthma, bronchiolitis, or pneumonia

Di Carlo 2010 Crosssectional Funding NR

Perez 2010 Crosssectional Funding NR

Rotegård 2007 Crosssectional Funding NR

Parents (n = 35) of 27 children aged 0-3 years hospitalized for RSV illness or gastroenteritis in Norway

Parent questions (information needs) were assessed by interview or questionnaire post– discharge (range: 3-28 days or after home oxygen was discontinued) Parent desire for more information assessed via questionnaire at the time of consultation or followup visit

More than 80.0% of parents would like more information about the health risk of environmental smoke exposure, provision of smoking cessation clinic and advice from health professionals.

Hospitalized for a lower respiratory infection (bronchiolitis or pneumonia)

24/195 (12.3%) had received information about preventing the One question used at the time of hospitalization to spread of acute respiratory infections, 158/195 (81.0%) had not assess whether parents’ received any information, and 12/195 (6.7%) were unsure. family pediatrician had ever talked to them about how to prevent the spread of acute respiratory infections

Post-discharge, 3% were diagnosed with pneumonia, 9% bronchiolitis, 71% upper respiratory tract infection (common cold)

Parents’ self-reported knowledge about bronchiolitis assessed via telephone survey after discharge from hospital, up to infant age of 6 months Parents’ self-reported need and receipt of general, medical, partnership, discharge, and other information using a questionnaire adapted from the Needs of Parents Questionnaire (NPQ) and Information and Support Needs Questionnaire (ISNQ) 1 week postdischarge

Hospitalized in an isolation unit (mean 3.8 days) for RSV (72%) or gastroenteritis (23%)

74% of the parents considered themselves to have lack of knowledge about bronchiolitis due to RSV

General information: 58-88% expressed a need and 69-89% received general information. 94% did not receive information about financial rights. On several items the parents had to request information - how to find equipment (37%), telephoning (37%), parental food (34%) and visiting (21%). Written information for all items was needed, especially for financial rights (25%). Medical information: 91-97% expressed a need and 83-94% received medical information. On several items 3-32% had to request the information. On all items, 27-47% received only part of the information. Parents' needs were met on “visiting” and “how to find equipment”, but not for “information about the responsible nurse on the shift”. Partnership (interaction with nurses) information: Information needs varied from 83% for “possibilities for relief” to 36% for “planned and structured conversations”. Received information varied between 77% for “nursing interventions” and 14% for “parental role at the hospital” and “expectations of the nurse”. 3-37% of the parents had to ask for information about partnership and 11% of the parents needed written information about partnership. Parents' needs were met on "planned and structured conversations”, “nurses' expectations of the parents” and “how to understand the child's reactions” but not for "planned and structured information conversations with the nurse”. Discharge information: 43-94% needed discharge information. Most received information on 2 items, “care and cure at home” (71%) and “home journey, date and time” (86%). Several parents received only part of the information (18-40%) or after asking (18-28%). 3-31% received the remaining information. Parents' needs were not met on “date, time and follow up of the discharge” (p = 0.1000) and “information to the district nurse about the disease and following up” (p = 0.1000). 36 % needed written information about how to prevent spread of infection; 28% about care and cure at home and 19% about the child's

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

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M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx (Continued)

Study, Design, Funding source

Pignotti 2006 Crosssectional Funding NR

Xu 2006 Retrospective cohort Funding NR

Bajaj 2006 RCT Research institute, industry funding

Participantsb and setting

Interventions or exposures Data collection

Results

development. Other information needs added by parents on the questionnaire: normal reactions of parents and what to expect regarding physical and psychological reactions, time for shift changes and rounds, where to pump breasts for mothers' milk, car park at emergency admissions and the basis for the medical diagnosis. Also, information was needed before hospitalization about the illness, its cause, course and seriousness. 88% of parents said they had received information about the Parents of 216 infants (sex Receiving RSV prophylaxis Information that parents distribution NR; 4.7 (4.1) with Palivizumab (87% had received about the prophylaxis program from neonatologists, 8% from medical months; preterm or with compliance) prophylaxis program was doctors, 6% from family pediatricians. Only 0.5% were advised other risk factors) assessed via questionnaire against prophylaxis by a family pediatrician. receiving Palivizumab at the end of each RSV prophylaxis over 4 RSV season seasons at a hospital in Florence, Italy Caregivers' knowledge: knew nothing or very little about RSV Receiving RSV prophylaxis Caregivers’ self-reported Primary caregivers (92% mothers) of 123 infants with Palivizumab knowledge of RSV assessed before participating in the program, n = 97 (69.1%); receiving RSV prophylaxis via questionnaire before knew somewhat or a great deal about RSV after participating in with Palivizumab during and after participation in the program, n = 107 (80.4%); knew nothing or very little about one RSV season at a the RSV prophylaxis Palivizumab before child's first injection, n = 88 (90.7%); knew hospital in Calgary, Canada program somewhat or a great deal about Palivizumab after child's last injection, n = 64 (59.8%). Parent-reported information sources for the RSV prevention program: Nurses in general (68.2%), NICU nurse (42.1%), RSV nurse (18.7%), transitional care nurse (12.1%), community nurse (0.9%); reading materials (46.7%) including books, pamphlets, posters and the Internet; hospital clinics (37.4%); discharge physician, (28%); pediatrician (17.8%); friend/family member (10.3%). Television advertisements were mentioned infrequently (data NR). Mothers of 92 infants (57% Following deep nasal One question at 72-h post- At the 72-h survey, 33/33 (100%) of mothers who responded felt male; mean 7.8, range 2 to suctioning, 2 albuterol discharge was used to they had received adequate instruction on the use of home 23 months) presenting to treatments (2.5 mg) via assess whether parents oxygen. the ED of a children’s nebulizer, 8-hour believed that they had hospital in the USA with observation period: received adequate viral bronchiolitis portable home oxygen instruction on how to use unit with 1 l nasal home oxygen cannula oxygen vs. traditional inpatient hospitalization

References [1] H. Nair, D.J. Nokes, B.D. Gessner, M. Dherani, S.A. Madhi, R.J. Singleton, K.L. O’Brien, A. Roca, P.F. Wright, N. Bruce, A. Chandran, E. Theodoratou, A. Sutanto, E.R. Sedyaningsih, M. Ngama, P.K. Munywoki, C. Katasasmita, E.A.F. Simões, I. Rudan, M.W. Weber, H. Campbell, Global burden of acute lower respiratory infections due to respiratory syncytial virus in young children: a systematic review and meta-analysis, Lancet 375 (2010) 1545–1555. [2] Miller E.K, T. Gebretsadik, K.N. Carroll, W.D. Dupont, Y.A. Mohamed, L.-L. Morin, L. Heil, P.A. Minton, K. Woodward, Z. Liu, T.V. Hartert, J.V. Williams, Viral etiologies of infant bronchiolitis, croup, and upper respiratory illness during four consecutive years, Pediatr. Infect. Dis. J. 32 (2013) 950–955. [3] J.N. Friedman, M.J. Rieder, J.M. Walton, Canadian pediatric society acute care committee & drug therapy and hazardous substances committee, bronchiolitis: recommendations for diagnosis, monitoring and management of children one to 24 months of age, Paediatr. Child. Health 19 (2014) 485–491. [4] S.L. Ralston, A.S. Lieberthal, H.C. Meissner, B.K. Alverson, J.E. Baley, A.M. Gadomski, D.W. Johnson, M.J. Light, N.F. Maraqa, E.A. Mendoca, K.J. Phelan, J.J. Zorc, D. Stanko-Lopp, M.A. Brown, I. Nathanson, E. Rosenblum, S. Sayles, S. Hernandez-Cancio, Clinical practice guideline: the diagnosis, management, and prevention of bronchiolitis, Pediatrics 134 (2014) e1474–e1502. [5] A. Nicolai, M. Ferrara, C. Schiavariello, F. Gentile, M.E. Grande, C. Allesandroni, F. Midulla, Viral bronchiolitis in children: a common condition with few therapeutic options, Early Hum. Dev. 89 (2013) S7–11. [6] W. Bordley, M. Viswanathan, V.J. King, F.S.S.F. Sutton, A.M. Jackman, L. Sterling, K.N. Lohr, Diagnosis and testing in bronchiolitis: a systematic review, Arch. Pediatr. Adolesc. Med. 158 (2004) 119–126. [7] A.M. Gadomski, M.B. Scribani, Bronchodilators for bronchiolitis, Cochrane Database Syst. Rev. 6 (2014) CD001266. [8] R.M. Fernandes, L.M. Bialy, B. Vandermeer, L. Tjosvold, A.C. Plint, H. Patel, D. W. Johnson, T.P. Klassen, L. Hartling, Glucocorticoids for acute viral bronchiolitis in infants and young children, Cochrane Database Syst. Rev. 6 (2013) CD004878.

[9] R. Farley, G.K.P. Spurling, L. Eriksson, C.B. Del Mar, Antibiotics for bronchiolitis in children under two years of age, Cochrane Database Syst. Rev. 10 (2014) CD005189. [10] T.A. Florin, T. Byczkowski, R.M. Ruddy, J.J. Zorc, M. Test, S. Shah, Variation in the management of infants hospitalized for bronchiolitis persists after the 2006 APP bronchiolitis guidelines, J. Pediatrics 165 (2014) 786–792 e1. [11] V. Mittal, M. Hall, R. Morse, K.M. Wilson, G. Mussman, P. Hain, A. Montalbano, K. Parikh, S. Mahant, S.S. Shah, Impact of inpatient bronchiolitis clinical practice guideline implementation on testing and treatment, J. Pediatrics 165 (2014) 570–576 e3. [12] C. Jackson, F.M. Cheater, I. Reid, A systematic review of decision support needs of parents making child health decisions, Health Expect. 11 (2008) 232–251. [13] J. Ingram, C. Cabral, A.D. Hay, P.J. Lucas, J. Horwood, Parents’ information needs, self-efficacy and influences on consulting for childhood respiratory tract infections: a qualitative study, BMC Fam. Pract. 14 (2013) 106, doi:http://dx. doi.org/10.1186/1471-2296-14-106. [14] C. Cabral, J. Ingram, A.D. Hay, J. Horwood, “They just say everything’s a virus”parent’s judgment of the credibility of clinician communication in primary care consultations for respiratory tract infections in children: a qualitative study, Patient Educ. Couns. 95 (2014) 248–253. [15] J.P.T. Higgins, S. Green (Eds.), Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0, The Cochrane Collaboration, London, UK, 2011. [16] A. Liberati, D.G. Altman, J. Tetzlaff, C. Mulrow, P.C. Gotzsche, J.P. Ioannidis, M. Clarke, P.J. Devereaux, J. Kleijnen, D. Moher, The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration, PLoS Med. 6 (2009), doi:http://dx.doi.org/10.1371/journal.pmed.1000100 e1000100. [17] A. Gates, K. Shave, R. Featherstone, K. Bukreus, S. Ali, S.D. Scott, L. Hartling, Procedural pain: systematic review of parent experiences and information needs, Clin. Pediatr. 57 (2018) 672–688. [18] A. Gates, J. Shulhan, R. Featherstone, S.D. Scott, L. Hartling, A systematic review of parent’s experiences and information needs related to their child’s urinary tract infection, Patient Educ. Couns. 101 (2018) 1207–1215.

Please cite this article in press as: M. Gates, et al., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Educ Couns (2018), https://doi.org/10.1016/j.pec.2018.12.013

G Model PEC 6145 No. of Pages 15

M. Gates et al. / Patient Education and Counseling xxx (2018) xxx–xxx [19] S.L. LaVela, A. Gallan, Evaluation and measurement of patient experience, Patient Exp. J. 1 (1) (2014) 28–36. [20] J. Thomas, A. Harden, Methods for the thematic synthesis of qualitative research in systematic reviews, BMC Med. Res. Methodol. 8 (2008) 45, doi: http://dx.doi.org/10.1186/1471-2288-8-45. [21] R. Pace, P. Pluye, G. Bartlett, A.C. Macaulay, J. Salsberg, J. Jagosh, R. Seller, Testing the reliability and efficiency of the pilot mixed methods appraisal tool (MMAT) for systematic mixed studies review, Int. J. Nurs. Stud. 49 (2012) 47– 53. [22] P. Pluye, M.-P. Gagnon, F. Griffiths, J. Johnson-Laflear, A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews, Int. J. Nurs. Stud. 46 (2009) 529–546. [23] P. Pluye, Q.N. Hong, Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews, Ann. Rev. Public Health 35 (2014) 29–45. [24] N. Norris, Error, bias and validity in qualitative research, Educ. Action Res. 5 (1997) 172–176. [25] I. Amirav, A. Oron, G. Tal, K. Cesar, A. Ballin, S. Houri, L. Naugolny, A. Mandelberg, Aerosol delivery in respiratory syncytial virus bronchiolitis: hood or face mask? J. Pediatr. 147 (2005) 627–631. [26] L. Bajaj, C.G. Turner, J. Bothner, A randomized trial of home oxygen therapy from the emergency department for acute bronchiolitis, Pediatrics 117 (2006) 633–640. [27] M.U. Bhuiyan, S.P. Luby, N.I. Alamgir, N. Homaira, K. Sturm-Ramirez, E.S. Gurley, J. Abedin, R.U. Zaman, A. Alamgir, M. Rahman, I.R. Ortega-Sanchez, E. Azziz-Baumgartner, Costs of hospitalization with respiratory syncytial virus illness among children aged <5 years and the financial impact on households in Bangladesh, 2010, J. Glob. Health. 7 (2017), doi:http://dx.doi.org/10.7189/ jogh.07.010412 010412. [28] X. Carbonell-Estrany, A. Dall’Agnola, J.R. Fullarton, B.S. Rodgers-Gray, E. Girardi, A. Mussa, N. Paniagua, M. Pieretto, R. Rodríguez-Fernandez, P. Manzoni, Interaction between healthcare professionals and parents is a key determinant of parental distress during childhood hospitalisation for respiratory syncytial virus infection (European RSV outcomes study [EROS]), Acta Paediatr. 107 (2018) 854–860. [29] P. Chan, A. Li, B. Paes, H. Abraha, I. Mitchell, K.L. Lanctot, Caress investigators, adherence to palivizumab for respiratory syncytial virus prevention in the Canadian registry of palivizumab, Pediatr. Infect. Dis. J. 34 (2015) e290–7. [30] S. Cunningham, A. Rodriguez, K.A. Boyd, E. McIntosh, S.C. Lewis, BIDS Collaborators Group, Bronchiolitis of infancy discharge study (BIDS): a multicentre, parallel-group, double-blind, randomised controlled, equivalence trial with economic evaluation, Health. Technol. Assess. 19 (2015) 1–172. [31] P. Di Carlo, A. Romano, M.R. Plano, A. Gueli, F. Scarlata, C. Mammina, Children, parents and respiratory syncytial virus in Palermo, Italy: prevention is primary, J. Child. Health Care 14 (2010) 396–407. [32] J.F. Freeman, S. Deakyne, L. Bajaj, Emergency department-initiated home oxygen for bronchiolitis: a prospective study of community follow-up, caregiver satisfaction, and outcomes, Acad. Emerg. Med. 24 (2017) 920–929. [33] S.G. Golombek, F. Berning, E.F. Lagamma, Compliance with prophylaxis for respiratory syncytial virus infection in a home setting, Pediatr. Infect. Dis. J. 23 (2004) 318–322. [34] A.L. Hasniah, Y.P. Tan, M.A. Nur Buhairah, T.W. Chan, T.I. Muhammad Nabil, S.Z. Syed Sulkifli, Parental awareness and attitude towards environmental tobacco smoke exposure in children with respiratory illnesses, Public Health 127 (2016) 182–184. [35] D.L. Langkamp, S.M. Hlavin, Factors predicting compliance with palivizumab in high-risk infants, Am. J. Perinatol. 18 (2001) 345–352. [36] A. Lapillonne, A. Regnault, V. Gournay, J.-B. Gouyon, H. Gilet, D. Anghelescu, T. Miloradovich, B. Arnould, G. Moriette, Impact on parents of bronchiolitis hospitalization of full-term, preterm and congenital heart disease infants, BMC Pediatr. 12 (2012) 171, doi:http://dx.doi.org/10.1186/1471-2431-12-171. [37] N.K. Leidy, M.K. Margolis, J.P. Marcin, J.A. Flynn, L.R. Frankel, S. Johnson, D. Langkamp, E.A. Simoes, The impact of severe respiratory syncytial virus on the child, caregiver, and family during hospitalization and recovery, Pediatrics 115 (2005) 1536–1546. [38] I. Matias, I. Garcia-Garcia, L. Garcia-Fragoso, M. Valcarcel, Palivizumab compliance by infants in Puerto Rico during the 2009-2010 respiratory syncytial virus season, J. Commun. Health 39 (2014) 1040–1044. [39] I. Mendez Rubio, P. Lazaro de Mercado, X. Carbonell Estrany, J. Figueras Aloy, I. Grupo, Quality of life of preterm infants and admissions due to respiratory infections, An. Pediatr. (Barc.) 73 (2010) 121–131. [40] D.A. Paul, K.H. Leef, A. Chidekel, K. Tran, S. Eppes, J.L. Stefano, Home delivery of palivizumab: outcomes and compliance in regional preterm infants, Del. Med. J. 74 (2002) 11–15. [41] A. Peeler, P. Fulbrook, S. Kildea, The experiences of parents and nurses of hospitalised infants requiring oxygen therapy for severe bronchiolitis, J. Child Health Care 19 (2013) 216–228.

15

[42] L. Perez, Z. Corchado, M. Rodriguez, D. Garcia, L. Medina, A. Vicens, N. Ortiz, L. Garcla, Y. Pedrogo, Respiratory illness in late preterm infants during the first six months of life, Bol. Assoc. Med. P. R. 102 (2010) 18–20. [43] M.S. Pignotti, S. Catarzi, G. Donzelli, A 4-year survey on palivizumab respiratory syncytial virus (RSV)-prophylaxis: how can compliance be improved? J. Matern. Fetal. Neonatal. Med. 19 (2006) 221–224. [44] R. Remondini, A.Z. Santos, G. Castro, C. Prado, L.V. Silva Filho, Comparative analysis of the effects of two chest physical therapy interventions in patients with bronchiolitis during hospitalization period, Einstein 12 (2014) 452–458. [45] J.M. Robbins, U.R. Kotagal, N.M. Kini, W.H. Mason, J.G. Parker, M.S. Kirschbaum, At-home recovery following hospitalization for bronchiolitis, Ambul. Pediatr. 6 (2006) 8–14. [46] J.M. Robbins, J.M. Tilford, S.R. Gillaspy, J.L. Shaw, D.D. Simpson, R.F. Jacobs, J.G. Wheeler, Parental emotional and time costs predict compliance with respiratory syncytial virus prophylaxis, Ambul. Pediatr. 2 (2002) 444–448. [47] L.B. Rolfsjord, H.O. Skjerven, E. Bakkeheim, K.H. Carlsen, J.O. Hunderi, B.K. Kvenshagen, P. Mowinckel, K.C. Lodrup Carlsen, Children hospitalised with bronchiolitis in the first year of life have a lower quality of life nine months later, Acta Paediatr. 104 (2015) 53–58. [48] A.K. Rotegård, K. Sykepleievitenskap, Children in an isolation unit—parents’ informational needs, NVard. Nord. Utveckl. Forsk. 27 (2007) 32–37. [49] X. Shang, T. Liabsuetrakul, P. Sangsupawanich, X. Xia, P. He, H. Cao, Satisfaction and preference for traditional chinese medicine drugs among guardians of children with acute bronchiolitis, J. Altern. Complement. Med. 21 (2015) 623– 627. [50] A.T. Spuijbroek, R. Oostenbrink, J.M. Landgraf, E. Rietveld, A. de Goede-Bolder, E.F. van Beeck, M. van Baar, H. Raat, H.A. Moll, Health-related quality of life in preschool children in five health conditions, Qual. Life. Res. 20 (2011) 779–786. [51] M. Weber, An in-home synagis program for RSV prevention in high-risk infants, J. Manag. Care. Pharm. 7 (2001) 476–481. [52] J. Xu, What Factors Influence Parent Compliance With the Respiratory Syncytial Virus (RSV) Prevention Program? University of Calgary, Calgary, Alberta, 2006. [53] N. Yael Kopacz, E. Predeger, C.M. Kelley, Experiences of Alaskan parents with children hospitalized for respiratory syncytial virus treatment, J. Pediatr. Nurs. 28 (2013) e19–21. [54] L.B. Rolfsjord, H.O. Skjerven, K.H. Carlsen, P. Mowinckel, K.E. Bains, E. Bakkeheim, K.C. Lodrup Carlsen, The severity of acute bronchiolitis in infants was associated with quality of life nine months later, Acta Paediatr. 105 (2016) 834–841. [55] A. Lapillonne, A. Regnault, V. Gournay, J.B. Gouyon, K. Benmedjahed, D. Anghelescu, B. Arnould, G. Moriette, Development of a questionnaire to assess the impact on parents of their infant’s bronchiolitis hospitalization, BMC Health Serv. Res. 13 (2013) 272, doi:http://dx.doi.org/10.1186/1472-6963-13272. [56] N.A. Francis, J.C. Crocker, A. Gamper, L. Brookes-Howell, C. Powell, C.C. Butler, Missed opportunities for earlier treatment? A qualitative interview study with parents of children admitted to hospital with serious respiratory tract infections, Arch. Dis. Child. 96 (2011) 154–159. [57] P.D. Coxeter, C.D. Mar, T.C. Hoffmann, Parents’ expectations and experiences of antibiotics for acute respiratory infections in primary care, Ann. Fam. Med. 15 (2017) 149–154. [58] S.K. Doupnik, D. Hill, D. Palakshappa, D. Worsely, H. Bae, A. Shaik, M. Qiu, M. Marsac, C. Feudtner, Parent coping support interventions during acute pediatric hospitalizations: a meta-analysis, Pediatrics 140 (2017), doi:http:// dx.doi.org/10.1542/peds.2016-4171 e20164171. [59] R. Rodríguez-Rey, J. Alonso-Tapia, G. Colville, Prediction of parental posttraumatic stress, anxiety and depression after a child’s critical hospitalization, J. Crit. Care. 45 (2018) 149–155. [60] R. Stremler, S. Haddad, E. Pullenayegum, C. Parshuram, Psychological outcomes in parents of critically ill hospitalized children, J. Pediatr. Nurs. 34 (2017) 36–43. [61] M. Foster, L. Whitehead, P. Maybee, The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family-centered care within a pediatric critical care setting: a synthesis of quantitative research, J. Fam. Nurs. 22 (2015) 6–73. [62] L. Shields, H. Zhou, J. Pratt, M. Taylor, J. Hunter, E. Pascoe, Family-centred care for hospitalised children aged 0–12 years, Cochrane Database Syst. Rev. 10 (2012) CD004811. [63] E.A. Lipstein, W.B. Brinkman, M.T. Britto, What is known about parents’ treatment decisions? A narrative review of pediatric decision making, Med. Decis. Making 32 (2012) 246–258. [64] T. Andrews, M. Thompson, D.I. Buckley, C. Heneghan, R. Deyo, N. Redmond, P.J. Lucas, P.S. Blair, A.D. Hay, Interventions to influence consulting and antibiotic use for acute respiratory tract infections in children: a systematic review and meta-analysis, PLoS. One 7 (2012)e30334, doi:http://dx.doi.org/10.1371/ journal.pone.0030334.

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