Dataset Information

Parent experiences and information needs relating to procedural pain in children: a systematic review protocol.

ABSTRACT:

Background

There exist many evidence-based interventions available to manage procedural pain in children and neonates, yet they are severely underutilized. Parents play an important role in the management of their child's pain; however, many do not possess adequate knowledge of how to effectively do so. The purpose of the planned study is to systematically review and synthesize current knowledge of the experiences and information needs of parents with regard to the management of their child's pain and distress related to medical procedures in the emergency department.

Methods

We will conduct a systematic review using rigorous methods and reporting based on the PRISMA statement. We will conduct a comprehensive search of literature published between 2000 and 2016 reporting on parents' experiences and information needs with regard to helping their child manage procedural pain and distress. Ovid MEDLINE, Ovid PsycINFO, CINAHL, and PubMed will be searched. We will also search reference lists of key studies and gray literature sources. Two reviewers will screen the articles following inclusion criteria defined a priori. One reviewer will then extract the data from each article following a data extraction form developed by the study team. The second reviewer will check the data extraction for accuracy and completeness. Any disagreements with regard to study inclusion or data extraction will be resolved via discussion. Data from qualitative studies will be summarized thematically, while those from quantitative studies will be summarized narratively. The second reviewer will confirm the overarching themes resulting from the qualitative and quantitative data syntheses. The Critical Appraisal Skills Programme Qualitative Research Checklist and the Quality Assessment Tool for Quantitative Studies will be used to assess the quality of the evidence from each included study.

Discussion

To our knowledge, no published review exists that comprehensively reports on the experiences and information needs of parents related to the management of their child's procedural pain and distress. A systematic review of parents' experiences and information needs will help to inform strategies to empower them with the knowledge necessary to ensure their child's comfort during a painful procedure.

Systematic review registration

PROSPERO CRD42016043698.

SUBMITTER: Gates A

PROVIDER: S-EPMC5461670 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Parent experiences and information needs relating to procedural pain in children: a systematic review protocol.

Gates Allison A Shave Kassi K Featherstone Robin R Buckreus Kelli K Ali Samina S Scott Shannon S Hartling Lisa L

Systematic reviews 20170606 1

<h4>Background</h4>There exist many evidence-based interventions available to manage procedural pain in children and neonates, yet they are severely underutilized. Parents play an important role in the management of their child's pain; however, many do not possess adequate knowledge of how to effectively do so. The purpose of the planned study is to systematically review and synthesize current knowledge of the experiences and information needs of parents with regard to the management of their ch ...[more]

PMID: 28587663

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Project description:BackgroundChildren experience multiple painful procedures when being cared for in emergency departments (EDs). Unfortunately, evidence-based interventions to manage such pain and distress are under-utilized across EDs. Caregivers are uniquely positioned and invested to advocate for the adaptation of such evidence into practice. Our objective was to gather information from caregivers of children experiencing procedural pain in the ED to inform the development of a novel, caregiver-focused knowledge translation (KT) tool.MethodsThe study design was qualitative description. Caregivers of children who underwent intravenous (IV) insertion or venipuncture in the pediatric ED at an urban tertiary care centre were interviewed. Thematic analysis was applied to the data. The TRanslating Emergency Knowledge for Kids (TREKK) Parent Advisory Group continuously informed this study, and provided input on interview guide development and piloting, data collection, analysis of the data, interpretation of the results, and development of next steps.ResultsInterviews revealed four major themes: 1) source of healthcare information; 2) delivering healthcare information; 3) communication with caregivers; and 4) procedure-related anxiety and long-term effects. Caregivers most valued receiving information directly from their healthcare provider. They also expressed that healthcare providers should direct information about the procedure to their child and identified strategies to involve children in their care. Caregivers wanted to be empowered to ask informed questions of their healthcare providers. Finally, caregivers reported negative experiences with procedures for their children, occurring mainly at non-pediatric centres.ConclusionsWe have identified core information needs for caregivers whose children are experiencing IV insertion or venipuncture. These results will form the foundation for the development of a KT tool that may empower caregivers to actively participate in their child's healthcare.

Project description:IntroductionInfants and children are frequently exposed to painful medical procedures such as immunisation, blood sampling and intravenous access. Over 40 scales for pain assessment are available, many designed for neonatal or postoperative pain. What is not well understood is how well these scales perform when used to assess procedural pain in infants and children.AimThe aim of this study was to test the psychometric and practical properties of the Face, Legs, Activity, Cry and Consolability (FLACC) scale, the Modified Behavioural Pain Scale (MBPS) and the Visual Analogue Scale (VAS) observer pain scale to quantify procedural pain intensity in infants and children aged from 6-42 months to determine their suitability for clinical and research purposes.Methods and analysisA prospective observational non-interventional study conducted at a single centre. The psychometric and practical performance of the FLACC scale, MBPS and the VAS observer pain scale and VAS observer distress scale used to assess children experiencing procedural pain will be assessed. Infants and young children aged 6-42 months undergoing one of four painful and/or distressing procedures were recruited and the procedure digitally video recorded. Clinicians and psychologists will be recruited to independently apply the scales to these video recordings to establish intrarater and inter-rater reliability, convergent validity responsiveness and specificity. Pain score distributions will be presented descriptively; reliability will be assessed using the intraclass correlation coefficient and Bland-Altman plots. Spearman correlations will be used to assess convergence and linear mixed modelling to explore the responsiveness of the scales to pain and their capacity to distinguish between pain and distress.Ethics and disseminationEthical approval was provided by the Royal Children's Hospital Human Research Ethics Committee, approval number 35220B. The findings of this study will be disseminated via peer-reviewed journals and presented at international conferences.

Project description:IntroductionSanfilippo syndrome (MPS III) is a rare, degenerative condition characterized by symptoms impacting cognitive ability, mobility, behavior, and quality of life. Currently there are no approved therapies for this severe life-limiting disease. Integrating patient and caregiver experience data into drug development and regulatory decision-making has become a priority of the Food and Drug Administration and rare disease patient communities.MethodsThis study assesses parents' perceptions of their child's Sanfilippo syndrome disease-related symptoms using a research approach that is consistent with the Center for Drug Evaluation and Research (CDER) guidance. This study was initiated by the Cure Sanfilippo Foundation, and all steps in the research process were informed by a multidisciplinary advisory committee, with an objective of informing biopharmaceutical companies and regulatory agencies. We explored caregiver burden, symptoms with greatest impact, and meaningful but unmet treatment needs. Data were collected from 25 parents through three focus groups and a questionnaire. Transcripts were coded and analyzed using inductive thematic analysis, and descriptive analysis of quantitative data was conducted.ResultsParticipating parents' children ranged in age from 4 to 36 years. Participants endorsed high caregiving burden across all stages of the disease. Analysis revealed multiple domains of unmet need that impact child and family quality of life, including cognitive-behavioral challenges in communication, relationships, behavior, anxiety, and child safety; and physical health symptoms including sleep, pain, and mobility. Participants reported placing high value on incremental benefits targeting those symptoms, and on a treatment that would slow or stop symptom progression.ConclusionEven modest treatment benefits for Sanfilippo syndrome were shown to be highly valued. Despite high caregiver burden, most parents expressed a willingness to "try anything," including treatments with potentially high risk profiles, to maintain their child's current state.

Project description:BackgroundWhile hospitalized in the NICU, preterm neonates undergo many painful procedures. This may be the same for full-term neonates when longer hospitalization is required. Untreated and repeated pain has short-term as well as long-term consequences for these neonates. Pharmacological pain management methods have many limitations in their applications for both preterm and full-term neonates. A combination of different non-pharmacological methods is recommended for pain management. The effect of olfactive stimulation as a non-pharmacological pain management method was investigated by a few studies in the past years with premature and term neonates, but no systematic review has been conducted. The objective of this systematic review is to evaluate the effect of olfactive stimulation intervention on the pain response of preterm and full-term neonates during painful procedures.MethodsAn electronic search will be conducted in various databases such as PubMed (1946 to date), MEDLINE (1946 to date), CINAHL (1981 to date), Embase (1947 to date), PsycINFO (1806 to date), Web of Science (1945 to date), CENTRAL and Scopus (1960 to date), and Proquest, without restriction for the year of publication. Only studies published in English or French will be included. The search will be conducted using the following three concepts: pain, odors, and neonates. Selection of articles, data extraction, and assessment of risk of bias will be conducted by two independent researchers. A third researcher will intervene in case of disagreement. According to the availability of studies and data homogeneity, the results will be combined to perform a meta-analysis, or they will be described by a narrative synthesis.DiscussionThis systematic review will provide light on the current state of knowledge on the effectiveness of olfactive stimulation interventions for managing pain in preterm and full-term neonates. This review will guide clinical practice as well as research to improve preterm and full-term neonates' pain management and prevent short-term and long-term complications caused by pain.Systematic review registrationPROSPERO CRD42017058021.

Project description:BackgroundBurns and related procedures are painful and distressing for children, exposing them to acute and chronic sequelae that can negatively affect their physiological, psychological, and social functions. Non-pharmacological interventions such as distraction techniques are beneficial adjuncts to pharmacological agents for procedural pain, state anxiety, and itch in children with burns but have limitations (e.g. lack of research on burn-related itch, tailoring, and consensus on optimal treatment). Hypnotherapy is a non-pharmacological intervention that can be tailored for varied settings and populations with evidence of benefit for itch and superior effectiveness in comparison to other non-pharmacological interventions for children's procedural pain and state anxiety. Thus, children with burns can benefit from hypnotherapy as an adjunct to pharmacological agents. Yet, in paediatric burns, rigorous studies of effectiveness are limited and no studies have been identified that screen for hypnotic suggestibility, an important predictor of hypnotherapy outcomes. Considering potential barriers to the delivery of hypnotherapy in paediatric burns, the proposed study will examine the feasibility and acceptability of hypnotic suggestibility screening followed by hypnotherapy for procedural pain, state anxiety, and itch in children with acute burns.MethodsAn observational mixed-methods feasibility and acceptability study will be conducted over 15 weeks. Eligible children (N = 30) aged 4 to 16 years presenting to a paediatric burns outpatient centre in a metropolitan children's hospital in Australia with acute burns requiring dressing changes will be included. Eligible parents of children (N = up to 30) and clinicians who perform dressing changes (N = up to 20) will also be included. Child participants screened as having medium to high suggestibility as assessed by behavioural measures will receive hypnotherapy during dressing changes. A process evaluation will target feasibility and acceptability as primary outcomes and implementation (i.e. fidelity in delivery), reach, potential effectiveness, and adoption of evaluation procedures and intervention as secondary outcomes.DiscussionEthical approval was obtained from the Queensland Children's Hospital and Health Service ethics committee. Results will be published in peer-reviewed publications and conference proceedings. The findings will guide the design of future trials on the effectiveness of hypnotherapy and inform the development of child-centred hypnotic interventions in children with burns.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12620000988954.

Dataset Information

Parent experiences and information needs relating to procedural pain in children: a systematic review protocol.

Background

Methods

Discussion

Systematic review registration

Publications

Parent experiences and information needs relating to procedural pain in children: a systematic review protocol.

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