Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
Disabled Persons; Siblings; Adolescent; developmental neurology & neurodisability; education & training (see medical education & training); Health Personnel; Humans; Male; paediatrics; Review Literature as Topic
INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability. METHODS AND ANALYSIS: This review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review. DISSEMINATION: Findings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.
Nguyen L; Bootsma J; Di Rezze B; Jack S; Ketelaar M; Gorter JW
BMJ Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2021-053184" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-053184</a>
Building a culture of engagement at a research centre for childhood disability
Childhood disability; Collaborative auto-ethnography; Family engagement in research; Organizational ethnography
Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada.
Pozniak K; Buchanan F; Cross A; Crowson J; Galuppi B; Grahovac D; Gorter JW; Hlyva O; Ketelaar M; Kraus de Camargo O; Krpan Mesic M; Martens R; McCauley D; Nguyen L; Palisano RJ; Phoenix M; Putterman C; Rosenbaum P; Sprung J; Strohm S; Teplicky R; Thomson D; Wright M
Research Involvement and Engagement
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s40900-021-00319-5" target="_blank" rel="noreferrer noopener">10.1186/s40900-021-00319-5</a>
CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
rehabilitation medicine; clinical trials; developmental neurology & neurodisability
Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, a patient-facing e-health intervention. The primary aim of this randomised controlled trial (RCT) was to determine whether the App will result in greater transition readiness compared with usual care for youth with BBD. Secondary aims included exploring the contextual experiences of youth using the App, as well as the interactive processes of youth, their parents/caregivers and healthcare providers around use of the intervention. Methods and analysis We aimed to randomise 264 youth with BBD between 15 and 17 years of age, to receive existing services/usual care (control group) or to receive usual care along with the App (intervention group). Our recruitment strategy includes remote and virtual options in response to the current requirements for physical distancing due to the COVID-19 pandemic. We will use an embedded experimental model design which involves embedding a qualitative study within a RCT. The Transition Readiness Assessment Questionnaire will be administered as the primary outcome measure. Analysis of covariance will be used to compare change in the two groups on the primary outcome measure; analysis will be intention-to-treat. Interviews will be conducted with subsets of youth in the intervention group, as well as parents/caregivers and healthcare providers. Ethics and dissemination The study has been approved by the research ethics board of each participating site in four different regions in Canada. We will leverage our patient and family partnerships to find novel dissemination strategies. Study findings will be shared with the academic and stakeholder community, including dissemination of teaching and training tools through patient associations, and patient and family advocacy groups. Trial registration number NCT03852550.
Gorter JW; Amaria K; Kovacs A; Rozenblum R; Thabane L; Galuppi B; Nguyen L; Strohm S; Mahlberg N; Via-Dufresne Ley A; Marelli A
BMJ Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2021-048756" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-048756</a>
Introduction of triggers for palliative care consultation improve utilization and satisfaction within a level IV NICU
awareness
Objectives * Identify three key elements that influence successful implementation of triggers for palliative care consultation within a NICU setting. * Recall the four major trigger domains that qualify for pediatric palliative care consultation within a NICU setting. Background. The use of a palliative care guideline, such as a trigger list for palliative care consultation (PCC), remains controversial in the NICU. Despite knowledge that a palliative team is present at our institution, the level of utilization of their services, and the NICU providers' attitudes and beliefs regarding neonatal palliative care, are unknown. Aim Statement. We sought to increase awareness of the palliative care team's role and the criteria in which a consultation is appropriate, with a SMART aim to increase the number of PCCs within our level four NICU by 20% by the end of December 2016. Methods. The setting is in a Level four NICU at an academic urban pediatric hospital. The study design included observational time series with multiple planned sequential interventions, which include but not limited to surveys and education. Medical chart review screened for eligibility for PCC. Statistical process control charts show performance over time. Results. Many providers noted a need for a guideline for PCC. Prior to implementation of the triggers, of those who qualified for PCC, 26% received consultation, which increased to 46% after implementation. There was also an increase in the percentage of survey respondents who understand what the team's role is, know when they should be consulted, and noticed a positive difference since their utilization. Lastly, the time until initial consultation decreased from approximately 1.5 months to one week. Conclusions and Implications. We achieved our goal of increasing the number of PCC by 20%, and decreased time to initial consultation. The triggers helped establish prompt and proactive referral. Not only can a written guideline increase awareness of a palliative care team's role within a NICU, but it also enhances the satisfaction amongst providers of the care they are giving. Early integration of palliative care within the NICU can help guide revision of treatment goals, improve communication, and provide continuity of comprehensive care to families.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Nguyen L; Cooperberg D; Spear M
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.184" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.184</a>