Dataset Information

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

ABSTRACT:

Introduction

Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements.

Methods and analysis

This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital.

Ethics and dissemination

This study was granted ethical approval on 1 February 2021 by the Sydney Children's Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.

SUBMITTER: Mimmo L

PROVIDER: S-EPMC8650477 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

Mimmo Laurel L Woolfenden Susan S Travaglia Joanne J Strnadová Iva I Phillips Maya Tokutake And Karen MTAK van Hoek Matthew And Debbie MAD Harrison Reema R

BMJ open 20211206 12

<h4>Introduction</h4>Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements.<h4>Methods and analysis</h4>This study employs an inclusive approach to the study design and e ...[more]

PMID: 34872999

Similar Datasets

Project description:BackgroundPatient-reported outcome measures (PROMs) measure people's views of their health status whereas patient-reported experience measures (PREMs) are questionnaires measuring perceptions of their experience whilst receiving healthcare. PROMs/PREMs have the potential to enable children and young people (CYP) to be involved in decisions about their care and improve the quality of their care but it is not clear how often PROMs/PREMs are incorporated as part of standard care of CYP in the hospital setting. The aims of this scoping review were to understand the extent of the literature and map available evidence on the use, benefits, barriers and facilitators of PROMs/PREMs as part of standard care and treatment of CYP in hospitals.MethodsThe Joanna Briggs Institute review process was used to map existing evidence on the use of PROMs/PREMs in routine care of CYP in different hospital settings worldwide. Key search terms were developed and Ovid (Emcare, Embase MEDLINE, APA PsychInfo), Scopus and Web of Science were searched. Data were analysed using frequency counts and basic content analysis for thematic mapping according to the research questions. We undertook an initial search in February 2021 and updated this in April 2023.ResultsThe search yielded 68,004 studies, 388 were eligible for full text review and 172 met the inclusion criteria. PROMs were more commonly used than PREMs in routine care of CYP in hospitals; these were mostly collected using electronic collection and concentrated in specific specialities, settings, contexts and countries. The findings mapped the use of PROMs/PREMs, including how data are applied in clinical practice and used for service development, but this was not consistently reported. There are specific challenges in the implementation of PROMs/PREMs in routine care of CYP that need to be considered.ConclusionPROMs/PREMs have the potential to improve care for CYP in hospital settings contributing to different aspects of care. A better understanding of their use, how results can be applied in clinical practice and contribute to service development will enable meaningful employment. The popularity of electronically collected and captured PROMS/PREMs warrants further investigation to enable their meaningful use in routine care of CYP.Systematic review registrationNot pre-registered.

Project description:BackgroundThe relationships between specific genetic aetiology and phenotype in neurodevelopmental disorders are complex and hotly contested. Genes associated with intellectual disability (ID) can be grouped into networks according to gene function. This study explored whether individuals with ID show differences in autism spectrum characteristics (ASC), depending on the functional network membership of their rare, pathogenic de novo genetic variants.MethodsChildren and young people with ID of known genetic origin were allocated to two broad functional network groups: synaptic physiology (n = 29) or chromatin regulation (n = 23). We applied principle components analysis to the Social Responsiveness Scale to map the structure of ASC in this population and identified three components-Inflexibility, Social Understanding and Social Motivation. We then used Akaike information criterion to test the best fitting models for predicting ASC components, including demographic factors (age, gender), non-ASC behavioural factors (global adaptive function, anxiety, hyperactivity, inattention), and gene functional networks.ResultsWe found that, when other factors are accounted for, the chromatin regulation group showed higher levels of Inflexibility. We also observed contrasting predictors of ASC within each network group. Within the chromatin regulation group, Social Understanding was associated with inattention, and Social Motivation was predicted by hyperactivity. Within the synaptic group, Social Understanding was associated with hyperactivity, and Social Motivation was linked to anxiety.LimitationsFunctional network definitions were manually curated based on multiple sources of evidence, but a data-driven approach to classification may be more robust. Sample sizes for rare genetic diagnoses remain small, mitigated by our network-based approach to group comparisons. This is a cross-sectional study across a wide age range, and longitudinal data within focused age groups will be informative of developmental trajectories across network groups.ConclusionWe report that gene functional networks can predict Inflexibility, but not other ASC dimensions. Contrasting behavioural associations within each group suggest network-specific developmental pathways from genomic variation to autism. Simple classification of neurodevelopmental disorder genes as high risk or low risk for autism is unlikely to be valid or useful.

Project description:IntroductionOdors are closely linked to emotions, play an important role in the well-being of individuals and can influence mood. Despite these crucial properties, the hedonic responses to odors of people with profound intellectual and multiple disabilities (PIMD) remain little explored.AimThis within-subjects study aims to examine whether children and young people with PIMD react in a differentiated way to odors evaluated as pleasant or unpleasant by neurotypical adults and, if so, with which behaviors. The influence of their global mood on their emotional responses to odors is also examined.MethodTwenty children and young people (7-18 years old) with PIMD were exposed to four pairs of hedonically contrasted odors. A control stimulus was presented before each odorant. Five emotional responses, one physiological reaction (nausea reactions), and three responses reflecting approach toward or avoidance of the stimulus were recorded throughout the duration of the stimulus exposure. The participants' global mood status was measured before the start of the research with the French version of the Mood, Interest and Pleasure Questionnaire (Ross and Oliver, 2003).ResultsThe results show that when exposed to pleasant odorants, participants kept their heads aligned with the odorant source longer, smiled longer, and produced more positive vocalizations. In contrast, unpleasant odorants elicit more pouts and grimaces. Nausea reactions occurred in the presence of unpleasant odorants. The hedonic responses were more marked during the second presentation of the stimuli. Participants with a higher MIPQ score showed significantly more emotional reactions to odors.ConclusionThe results confirm the presence of olfactory preferences in participants with PIMD and the existence of a link between their mood, emotions and olfactory hedonic processing. They prompt the use of odors to support not only the cognitive development of this population, but also their mood and their emotional regulation abilities.

Project description:People with an intellectual disability face inequality accessing healthcare that extends to end-of-life care. Furthermore, end-of-life care for people with an intellectual disability is more complex than that for the general population. This protocol sets out how our review will explore the available evidence and identify the key characteristics of care that are required for people with an intellectual disability to have a good end-of-life experience. A critical interpretive synthesis approach will be adopted, combining some elements of a systematic review with interpretive synthesis. This approach has been selected as it allows a diverse body of literature to be considered. Furthermore, it is compatible with theory generation allowing new insights to emerge in an iterative process. Electronic databases and grey literature sources will be searched using pre-defined search terms. Following initial title and abstract screening, eligible papers will undergo full text screening. Papers that are deemed to be 'fatally flawed' will be excluded and remaining papers appraised for relevance. Resultant papers will be included in the sampling frame from which data extraction will occur. An existing framework outlining key factors in the provision of excellent end-of-life care to people with an intellectual disability will be used to support data extraction and synthesis. Data extracted will be integrated into a synthesising argument in the form of a theoretical framework. This will identify the key characteristics in the provision of care that are required for people with an intellectual disability to have a good end-of-life experience. The developing theoretical framework will guide further selection of relevant literature to fill any conceptual gaps until saturation is reached. Our review will add to the existing body of evidence, shedding light on the key factors necessary in the provision of care to ensure that people with an intellectual disability have a good end-of-life experience.

Project description:The aims of this study were to analyze the interactions of mothers and fathers with their children with intellectual disabilities, focusing on certain parental behaviors previously identified as promoting child development, and to explore the relations between parenting and some sociodemographic variables. A sample of 87 pairs of mothers and fathers of the same children were recruited from Early Intervention Centers. The children (58 male and 29 female) were aged 20-47 months. Most of the families (92%) were from the province of Barcelona (Spain), and the remaining 8% were from the other provinces of Catalonia (Spain). Parenting behaviors, divided into four domains (Affection, Responsiveness, Encouragement, and Teaching) were assessed from self-recorded videotapes, in accordance with the validated Spanish version of the PICCOLO (Parenting Interactions with Children: Checklist of Observations Linked to Outcomes). Parents were administered a sociodemographic questionnaire. The results revealed strong similarities between mothers' and fathers' parental behaviors. Mothers and fathers were more likely to engage in affectionate behavior than in teaching behavior. Only maternal teaching presented a significant positive relation to the child's age. With respect to the child's gender, no differences were observed in mothers' parenting. Conversely, fathers scored significantly higher in Responsiveness, Encouragement and Teaching (and had higher total parenting scores) when interacting with boys. The severity of the child's ID had a statistically significant effect only on fathers' Teaching, which showed lower mean scores in the severe ID group than in the moderate and mild ID groups. Teaching also presented a significant positive relation to mother's age, but father's age was not related to any parenting domain. Mothers with a higher educational level scored significantly higher in Encouragement and Teaching, and the fathers' educational level was not significantly related to any parenting domain. Mothers' and fathers' Teaching, and fathers' Responsiveness, Encouragement and total parenting scores, presented a significant positive relation to family income. Finally, mothers spent more time in childcare activities than fathers, particularly on workdays. Our main conclusion is that mothers and fathers show very similar strengths and weaknesses when interacting with their children with intellectual disabilities during play.

Dataset Information

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

Introduction

Methods and analysis

Ethics and dissemination

Publications

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets