Dataset Information

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study.

ABSTRACT: OBJECTIVES:To identify the outcome priorities of parents of children who had experienced an acute respiratory infection (ARI). DESIGN:This was a two-phase, mixed methods study with a sequential exploratory design. We used a cross-sectional quantitative web-based survey to elicit parents' priorities for paediatric ARI. We then used a discussion moderated via Facebook to elucidate richer descriptions of parents' priorities. SETTING:Survey and discussion data were collected via the internet. PARTICIPANTS:110 parents (90% women, median age 35 years, 92.7% urban dwelling, 94.5% with a postsecondary education) with a child who had experienced an ARI responded to the survey. Four parents participated in the Facebook discussion. PRIMARY AND SECONDARY OUTCOME MEASURES:The primary outcome was parents' rankings of outcomes related to paediatric ARI. The secondary outcomes were the alignment of parent-reported important outcomes with those commonly reported in Cochrane systematic reviews (SRs). RESULTS:Commonly reported ARIs included croup (44.5%), wheezing (43.6%) and influenza (38.2%). Parents ranked major complications, illness symptoms and length of stay as the most important outcome categories. With respect to specific outcomes, severe complications, major side effects, doctor's assessment, relapse, oxygen supplementation and results from laboratory measures were reported as most important (75th-99th percentile). Taking time off work, mild complications, interference with daily activities, treatment costs, absenteeism, follow-up visits and other costs were deemed minimally important (<25th percentile). In 35 Cochrane SRs, 29 unique outcomes were reported. Although participants' priorities sometimes aligned with outcomes frequently reported in the literature, this was not always true. Additional priorities from the survey (n=50) and Facebook discussions (n=4) included healthcare access, interacting with healthcare providers, education, impact on daily activities and child well-being. CONCLUSIONS:In the context of paediatric ARI, parents' priorities did not always align with commonly researched outcomes. Appealing and efficient strategies to engage patients and parents in research should be developed.

SUBMITTER: Dyson MP

PROVIDER: S-EPMC5736044 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study.

Dyson Michele P MP Shave Kassi K Gates Allison A Fernandes Ricardo M RM Scott Shannon D SD Hartling Lisa L

BMJ open 20171214 12

<h4>Objectives</h4>To identify the outcome priorities of parents of children who had experienced an acute respiratory infection (ARI).<h4>Design</h4>This was a two-phase, mixed methods study with a sequential exploratory design. We used a cross-sectional quantitative web-based survey to elicit parents' priorities for paediatric ARI. We then used a discussion moderated via Facebook to elucidate richer descriptions of parents' priorities.<h4>Setting</h4>Survey and discussion data were collected vi ...[more]

PMID: 29247097

Similar Datasets

Project description:IntroductionDespite recognition of the importance of patient engagement in research and knowledge translation, systematic approaches to engagement and co-ideation remain limited. Living labs are collaborative knowledge sharing systems that use multimethod, user-centred approaches that hold potential to catalyse these aims. However, their use in healthcare is limited, and no living lab has been developed in paediatric rehabilitation. In response to this gap and to propel innovative knowledge exchange, we propose a mixed methods study to co-develop a living lab prototype (ie, preliminary infrastructure with opportunity for scale up) in paediatric rehabilitation, with relevance to other healthcare contexts.MethodsAn exploratory sequential mixed methods study will be undertaken to determine research and knowledge exchange priorities and to inform the development of the living lab prototype. Stage 1: we will use a multipronged approach to sample 18-21 youth with developmental differences or rehabilitation needs, their youth siblings and parents/guardians from a provincial paediatric rehabilitation centre, to participate in qualitative and arts-based data collection. Data will provide insight into desirable features of the living lab. Stage 2: E-surveys to youth, siblings, parents/guardians and clinicians who receive or provide services at this same centre will expand on priorities and living lab features. Stage 3: integrated analysis will inform the living lab prototype development.AnalysisInductive thematic analysis using interpretive description, integrated analysis of visual data and descriptive and content analysis of e-survey data will be undertaken. Joint displays will facilitate data integration. Priorities will be identified using a modified rank-order method for each key living lab domain.Ethics and disseminationInstitutional ethics and site approval have been granted. A parent advisory group and rehabilitation engineering partners will confer on data and inform the development of the living lab prototype. User engagement with the prototype will occur during an online or in-person event, and findings shared through non-technical research summaries, journal articles and academic presentations.

Project description:BackgroundReablement is a multi-professional and internationally established home-based health care service for mainly older people with the aim to reduce the need for long-term care and to promote self-determination. However, it is unknown which factors would facilitate the implementation of reablement in health care services. Therefore, the aim of this work was to identify relevant factors for the implementation process and to elucidate their importance based on the perspectives of experts.MethodsWithin an exploratory sequential mixed-methods design, a literature search followed by framework analysis was carried out using the five domains of the Consolidated Framework of Implementation Research (CFIR) to collect potentially relevant factors for implementation of reablement. A survey was then drawn up encompassing the factors identified. Within the survey international reablement - experts were asked to rate the relevance of these factors .ResultsThe literature search identified 58 publications that served as sources for the framework analysis, where 40 potentially relevant factors were clustered into the five CFIR domains. These 40 factors were rated by experts in an online-survey. Based on the analysis of survey-data, 35 factors were considered as relevant for implementation of reablement services. The CFIR-domain characteristics of individuals, including teamwork and communication skills, was seen as most relevant.ConclusionsThe implementation of reablement services is complex and requires the consideration of numerous factors, especially regarding the CFIR-domain characteristics of individuals. From the perspective of the survey´s participants one important factor of a successful implementation was the engagement of the persons involved. It requires team members with a strong, shared vision. Communication skills are highly important to promote teamwork and intensive training is needed to establish these skills. Further research on the implementation of reablement services is essential to realize its full potential.

Project description:ObjectivesTo describe critically ill children with respiratory infections, classify them by infection syndrome type and determine the prevalence of Mycoplasma pneumoniae detection.Study designA retrospective, single-centre cohort study. All children aged 2 months-18 years with presumed respiratory infection who were admitted to a tertiary hospital paediatric intensive care unit (PICU) between September 2015 and October 2016 were eligible. Subjects were grouped by clinical syndrome (viral respiratory infection, asthma exacerbation, undifferentiated/uncomplicated pneumonia, pneumonia complicated by effusion/empyema and 'other'). All subjects had nasopharyngeal swabs tested for respiratory viruses, M. pneumoniae and Chlamydia pneumoniae.ResultsThere were 221 subjects; the median age was 3.1 years; 44% were female; and 78% had medical comorbidities. The majority (75%) was treated with antibiotics, most often ceftriaxone (90% of treated children). Those with any pneumonia were significantly less likely to have a respiratory virus identified in their nasopharynges and had significantly higher C reactive protein (CRP) values than those in the viral infection and asthma groups. There were 10 subjects in whom M. pneumoniae was detected (4.5%, 95% CI 2.2% to 8.2%). Mycoplasma-positive children were older (difference 3.5 years, 95% CI 0.66 to 6.4 years) and had fewer viral coinfections (30% compared with 69%, p=0.02). The prevalence of Mycoplasma infection in children aged >5 years with any pneumonia was 13.2% (95%CI 4.4% to 28%).ConclusionsThe majority of participants had respiratory viruses detected and were treated with broad-spectrum antibiotics. Differences in CRP and viral prevalence were observed between children with different infection syndrome types. M. pneumoniae infection was not rare in school-aged children with pneumonia admitted to the PICU. Attention to antibiotic treatment and rapid diagnostic testing for Mycoplasma in older, critically ill children should be considered to optimise management and avert morbidity and mortality from respiratory infection.

Project description:ObjectivesGiven the current excellent early mortality rates for paediatric cardiac surgery, stakeholders believe that this important safety outcome should be supplemented by a wider range of measures. Our objectives were to prospectively measure the incidence of morbidities following paediatric cardiac surgery and to evaluate their clinical and health-economic impact over 6 months.DesignThe design was a prospective, multicentre, multidisciplinary mixed methods study.SettingThe setting was 5 of the 10 paediatric cardiac surgery centres in the UK with 21 months recruitment.ParticipantsIncluded were 3090 paediatric cardiac surgeries, of which 666 patients were recruited to an impact substudy.ResultsFamilies and clinicians prioritised:Acute neurological event, unplanned re-intervention, feeding problems, renal replacement therapy, major adverse events, extracorporeal life support, necrotising enterocolitis, postsurgical infection and prolonged pleural effusion or chylothorax.Among 3090 consecutive surgeries, there were 675 (21.8%) with at least one of these morbidities. Independent risk factors for morbidity included neonatal age, complex heart disease and prolonged cardiopulmonary bypass (p<0.001). Among patients with morbidity, 6-month survival was 88.2% (95% CI 85.4 to 90.6) compared with 99.3% (95% CI 98.9 to 99.6) with none of the morbidities (p<0.001). The impact substudy in 340 children with morbidity and 326 control children with no morbidity indicated that morbidity-related impairment in quality of life improved between 6 weeks and 6 months. When compared with children with no morbidities, those with morbidity experienced a median of 13 (95% CI 10.2 to 15.8, p<0.001) fewer days at home by 6 months, and an adjusted incremental cost of £21 292 (95% CI £17 694 to £32 423, p<0.001).ConclusionsEvaluation of postoperative morbidity is more complicated than measuring early mortality. However, tracking morbidity after paediatric cardiac surgery over 6 months offers stakeholders important data that are of value to parents and will be useful in driving future quality improvement.

Project description:Background: Considering the increasing prevalence rate of smoking among Iranian adolescents,and recent evidence on the relationship between obscenity of smoking and tendency of adolescents towards the behavior, there is a need for an appropriate measurement tool to measure the level of obscenity on cigarette smoking among adolescents. This study was conducted to develop a valid and reliable questionnaire for measuring the obscenity of cigarette smoking in adolescents. Methods: This study was conducted in Tabriz, Iran, using an exploratory sequential mixed methods design. To explain the concept of obscenity and develop the questionnaire's items, 18 students attended semi-structured individual interviews and 13 others took part in focus group discussions (FGDs) in three groups of 4-5. Extracting and summarizing the codes derived from the interviews, an item pool was developed, from which the initial draft of the scale was provided.Next, the psychometric properties of the scale were assessed using face, content, construct, and predictive validity, as well as internal consistency, and reliability in a sample of 1013 high school students. Results: The 22-item Cigarette Smoking Obscenity Scale (CSOS) was developed based on thecodes derived from qualitative data. Explanatory factor analysis revealed five-factor structure(Negative Attitude; Negative Consequence; Negative Valuation; Inappropriate Relationship; Agateway to addiction). In confirmatory factor analysis, the ?2/df ratio was 3.911 for the CSOS five-factor structure. Suitable values were obtained for the goodness of fit indices (GFI = 0.88,AGFI = 0.85, NFI = 0.87, IFI = 0.90, CFI = 0.90, RFI = 0.85, and RMSEA = 0.072). The Cronbach's alpha and intraclass correlation (ICC) coefficients for the constructs ranged between 0.77 to 0.90 and 0.80 to 0.91, respectively. Conclusion: The validity and reliability of the CSOS was appropriate; therefore, it can be used infuture studies as a suitable tool for measuring the obscenity of cigarette smoking in adolescents.

Dataset Information

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study.

Publications

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets