176 research outputs found

    “We should have been told what would happen”; Children’s and parents’ procedural knowledge levels and information seeking behaviours when coming to hospital for a planned procedure.

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    Children continue to be poorly prepared and informed about clinical procedures, despite increased evidence of the worth of preparation and the availability of information resources. This study used a concurrent mixed-methods approach to explore the information accessed by children and their parents before attending hospital for a procedure. Information was collected separately from 40 children (aged between 8 and 12 years) and their parents using a paper booklet to examine self-reported perceived procedural knowledge and information-seeking behaviours. Data were analysed using descriptive statistics and content analysis techniques. The findings indicate that many children (70%, n = 28) and their parents (65%, n = 26) have low procedural knowledge levels. The majority of children (85%, n = 36) reported not receiving or seeking information about their procedure, despite identifying a desire and preference for more information. This study shows a mismatch between the current provision of procedural information and children and parents’ expectations that information will be provided directly to them by health professionals. In order for this ‘information hole’ to be filled, there needs to be a concerted effort to develop and systematically use meaningful information materials and for children and their parents to have the opportunity to discuss their procedural knowledge with health professionals

    Navigating Uncertainty: Health Professionals' Knowledge, Skill and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment

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    There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A metatheme “navigating uncertainty; deficits in knowledge and skills” and two core themes “framing as different and teasing things out” and “the settling and unsettling presence of parents” were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the child’s parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented

    Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives

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    Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error ("learning to get on with it"); this was accomplished through "learning to know without a rule book or guide"; "learning to be a convincing advocate"; and "learning to endure and to get things right." Experiential and reflective learning was evident in the way the mothers developed a "sense of knowing" their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns

    Acceptability and feasibility of an app to prepare children for a blood test: An exploratory cohort study.

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    Objective: Children report needle procedures as one of their most feared and painful experiences. Negative blood test experiences can lead to life-long implications. Xploro is an online health information platform (app) which uses age-appropriate self-directed augmented reality (AR) techniques. This study evaluated the acceptability, feasibility and self-reported impact of Xploro on children undergoing a planned blood test.Method: Children aged 6-14 years accessed Xploro at home before attending hospital for a planned blood test. Paper data collection booklets were completed by children, their parents and health professionals. We explored participants’ views of using Xploro and the perceived impact on a child’s ability to undergo the blood test. Data were analysed using descriptive statistics and content analysis procedures. Results: 24 children, 24 parents and 6 health professionals participated. Children (96%; n=23/24) reported that Xploro was ‘fun’, ‘easy to use’ and helped them have their blood test (94%, n=17/18), as they ‘knew what to expect’ and what would help them. Parents reported that the app helped ‘open up a dialogue about the blood test’ with their child and helped their child ‘know what would happen during the blood test’ and how to ‘stay calm’. Health professionals (n=6) reported that Xploro helped children access information ‘at their leisure at home’.Conclusion: Xploro is reported as being a useful and engaging self-directed child-friendly information app for children having a planned blood test which helped children know what was going to happen and improved their experiences of having a blood test.<br/

    A qualitative study of health professionals’ views on the holding of children for clinical procedures: Constructing a balanced approach

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    Children undergoing clinical procedures can experience fear, uncertainty, and anxiety which can cause them to become upset and resist procedures. This study aimed to capture an international perspective of how health professionals report they would act if a child was upset and resisted a procedure. An online questionnaire, distributed through network sampling, used three vignettes to elicit qualitative open text responses from health professionals. Seven hundred and twelve professionals participated, resulting in 2072 pieces of text across the three vignettes. Many professionals reported that they would use distraction and spend time to inform and engage children in making choices about their procedure. However, most professionals indicated that if a child became uncooperative they would hold or instruct the holding of the child in order to get the procedure done 'as quickly as possible'. The findings demonstrate that professionals experience difficulty in balancing the different agendas, rights and priorities within the momentum which can build during a clinical procedure, often resulting in the child's voice and rights being undermined. A more balanced approach could be facilitated by a 'clinical pause' that would equip professionals with the time to consider children's expressed wishes and explore alternative approaches to holding