HRB open research最新文献

{"title":"The impact of COVID-19 on clinical research: the PIPPRA and MEDRA experience","authors":"Louise Larkin, Tala Raad, Anusha Moses, Alexander Fraser, Stephen Gallagher, Bente Appel Esbensen, Liam Glynn, Anne Griffin, Audrey C Tierney, Norelee Kennedy","doi":"10.12688/hrbopenres.13283.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13283.2","url":null,"abstract":"<ns7:p>Background Coronavirus disease 2019 (COVID-19) has had a significant impact on clinical research. This paper aims to provide an insight into how the COVID-19 pandemic, associated public health restrictions and international guidance on the conduct of clinical research impacted two clinical rheumatology research trials - the Physiotherapist-led Intervention to Promote Physical Activity in Rheumatoid Arthritis (PIPPRA) and the MEDiterranean diet in Rheumatoid Arthritis (MEDRA) projects. Methods The March 2019 public health restrictions imposed to mitigate the risk of COVID-19 occurred at a time when PIPPRA was in the process of delivering assessment and intervention on a face-to-face basis (n=48) and MEDRA had commenced recruitment. Participants in PIPPRA and MEDRA had a diagnosis of rheumatoid arthritis, with some being immunosuppressed and thus at a higher risk for COVID-19. The decision-making processes of both trials is outlined to demonstrate the required amendments to continue in the context of the COVID-19 pandemic. Results Amendments to PIPPRA and MEDRA trial protocols were agreed and received ethical and funder approval. Both trials switched from a face-to-face delivery to a telehealth using online platforms. The PIPPRA study was paused for five months (April-August 2020), resulting in n=33 (60%) negative deviations from assessment protocol. MEDRA switched from face-to-face to online recruitment with 20% (n=35/44) negative deviations in recruitment. Of the n=18 participants who consented to participating in a face-to-face trial, just n=2 (11%) opted to engage with telehealth delivery of the intervention. MEDRA assessment and intervention deviations were 100% as no sessions were completed as planned in 2020. Conclusions The COVID-19 pandemic has severely impacted the PIPPRA and MEDRA clinical trials. Moving face-to-face clinical research to telehealth delivery may not be the panacea it is purported to be. Our experiences may be of benefit to researchers, clinicians, and funders in seeking to continue clinical research during a global pandemic.</ns7:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"106 16","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135136407","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient and clinician perspectives of online-delivered exercise programmes for chronic musculoskeletal conditions: protocol for a mixed-methods systematic review.","authors":"Avantika Bhardwaj, Caoimhe Barry Walsh, Allison Ezzat, Cliona O'Riordan, Norelee Kennedy, Clodagh M. Toomey","doi":"10.12688/hrbopenres.13551.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13551.2","url":null,"abstract":"<ns3:p>Background Despite the growing economic and social impact of chronic musculoskeletal (MSK) conditions, there has been low uptake of clinical guidelines for management, owing partly to the negative perceptions of patients and clinicians of their appropriateness and accessibility. Online-delivered exercise programmes (ODEPs) offer an alternative that can reduce costs and offer convenience for those with mobility limitations. As such, investigating participants’ perceptions of such programmes provides insight into the complexity and interplay of factors associated with uptake and optimization of implementation strategies. Objectives This study aims to systematically review of the literature of patients’ and clinicians’ perceptions of ODEPs for chronic MSK conditions. Methods To ensure the likelihood of identifying all relevant published articles, the following databases will be searched from inception to end of the project: CINAHL Complete, MEDLINE, SportDiscus, AMED, APA PsycArticles, APA PsycInfo, Scopus, and Cochrane Library. Included articles will qualitatively and/or quantitatively report the perceptions of participants of ODEPs for chronic MSK conditions. ODEPs are defined as either (a) synchronous, participants can exchange information simultaneously, or (b) asynchronous, with at least one synchronous feature, or (c) neither, where the authors investigate a participant’s past experiences and/or likelihood of participating in such a programme. Article screening and quality assessment using the Critical Appraisal Skills Programme (CASP) checklists will be performed by two independent reviewers. All findings from included articles will be extracted and coded using a thematic synthesis approach. Discussion It is important to offer diverse resources to address the growing public health burden of chronic MSK conditions. This study will explore patients and clinicians’ perceptions of ODEPs including needs, appropriateness and acceptability. Our findings could be used by policy makers, clinicians, and researchers to generate new models of care that could influence the uptake and long-term sustainability of ODEPs for chronic MSK conditions. PROSPERO registration CRD42021273773.</ns3:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"155 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135476274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prehospital characteristics that identify major trauma patients: A hybrid systematic review protocol","authors":"Nora Donnelly, Matthew Linvill, Ricardo Zaidan, Andrew Simpson, Louise Brent, Pamela Hickey, Siobhan Masterson, Conor Deasy, Frank Doyle","doi":"10.12688/hrbopenres.13730.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13730.2","url":null,"abstract":"<ns3:p>Background International evidence has demonstrated significant improvements both in the trauma care process and outcomes for patients through re-configuring care services from that which is fragmented to integrated trauma networks. A backbone of any trauma network is a trauma triage tool. This is necessary to support paramedic staff in identifying major trauma patients based on prehospital characteristics. However, there is no consensus on an optimal triage tool and with that, no consensus on the minimum criteria for prehospital identification of major trauma. Objective Examine the prehospital characteristics applied in the international literature to identify major trauma patients. Methods To ensure the systematic review is both as comprehensive and complete as possible, we will apply a hybrid overview of reviews approach in accordance with best practice guidelines. Searches will be conducted in Pubmed (Ovid MEDLINE), Embase, Cochrane Library of Systematic Reviews and Cochrane Central Register of Clinical Trials. We will search for papers that analyse prehospital characteristics applied in trauma triage tools that identify major trauma patients. These papers will be all systematic reviews in the area, not limited by year of publication, supplemented with an updated search of original papers from November 2019. Duplication screening of all articles will be conducted by two reviewers and a third reviewer to arbitrate disputes. Data will be extracted using a pre-defined data extraction form, and quality appraised by the Newcastle Ottawa Quality Assessment form. Conclusions An exhaustive search for both systematic reviews and original papers will identify the range of tools developed in the international literature and, importantly, the prehospital characteristics that have been applied to identify major trauma patients. The findings of this review will inform the development of a national clinical prediction rule for triage of major trauma patients.</ns3:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135480256","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dementia research in Ireland: What should we prioritise?","authors":"Carol Rogan, Bernadette Rock, Emer Begley, Barry Boland, Kevin Brazil, Unai Diaz-Orueta, Sarah Donnelly, Michael Foley, Tony Foley, Caoimhe Hannigan, Louise Hopper, Fiona Keogh, Brian Lawlor, Iracema Leroi, Cora O'Neill, Laura O'Philbin, Maria Pertl, Dominic Trépel, Seán Kennelly","doi":"10.12688/hrbopenres.13563.2","DOIUrl":"10.12688/hrbopenres.13563.2","url":null,"abstract":"<p><strong>Background: </strong>Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.</p><p><strong>Methods: </strong>(1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.</p><p><strong>Results: </strong>Eight of the top ten research priorities in the survey of professionals ( <i>n</i>=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( <i>n</i>=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.</p><p><strong>Conclusions: </strong>Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"6 ","pages":"12"},"PeriodicalIF":0.0,"publicationDate":"2023-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10638481/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89720954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes of out-of-hospital cardiac arrest in Ireland 2012-2020: Protocol for an observational study","authors":"Tomás Barry, Alice Kasemiire, Martin Quinn, Conor Deasy, Gerard Bury, Siobhan Masterson, Ricardo Segurado, Andrew Murphy","doi":"10.12688/hrbopenres.13699.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13699.2","url":null,"abstract":"<ns4:p>Background Out-of-hospital cardiac arrest (OHCA) is a leading cause of preventable mortality that now affects almost 3,000 people each year in Ireland. Survival is low at 6–7%, compared to a European average of 8%. The Irish Out-of-Hospital Cardiac Registry (OHCAR) prospectively gathers data on all OHCA in Ireland where emergency medical services attempted resuscitation. The Irish health system has undergone several developments that are relevant to OHCA care in the period 2012–2020. OHCAR data provides a means of exploring temporal trends in OHCA incidence, care, and outcomes over time. It also provides a means of exploring whether system developments were associated with a change in key outcomes. This research aims to summarise key trends in available OHCAR data from the period 2012 – 2020, to explore and model predictors of bystander CPR, bystander defibrillation, and survival, and to explore the hypothesis that significant system level temporal developments were associated with improvements in these outcomes. Methods The following protocol sets out the relevant background and research approach for an observational study that will address the above aims. Key trends in available OHCAR data (2012 – 2020) will be described and evaluated using descriptive summaries and graphical displays. Multivariable logistic regression will be used to model predictors of ‘bystander CPR’, ‘bystander defibrillation’ and ‘survival to hospital discharge’ and to explore the effects (if any) of system level developments in 2015/2016 and the COVID-19 pandemic (2020) on these outcomes. Discussion The findings of this research will be used to understand temporal trends in the care processes and outcomes for OHCA in Ireland over the period 2012-2020. The results can further be used to optimise future health system developments for OHCA in both Ireland and internationally.</ns4:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"101 ","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135870806","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes of out-of-hospital cardiac arrest in Ireland 2012-2020: Protocol for an observational study.","authors":"Tomás Barry,&nbsp;Alice Kasemiire,&nbsp;Martin Quinn,&nbsp;Conor Deasy,&nbsp;Gerard Bury,&nbsp;Siobhan Masterson,&nbsp;Ricardo Segurado,&nbsp;Andrew Murphy","doi":"10.12688/hrbopenres.13699.1","DOIUrl":"10.12688/hrbopenres.13699.1","url":null,"abstract":"<p><strong>Background: </strong>Out-of-hospital cardiac arrest (OHCA) is a leading cause of preventable mortality that now affects almost 3,000 people each year in Ireland. Survival is low at 6-7%, compared to a European average of 8%. The Irish Out-of-Hospital Cardiac Registry (OHCAR) prospectively gathers data on all OHCA in Ireland where emergency medical services attempted resuscitation.The Irish health system has undergone several developments that are relevant to OHCA care in the period 2012-2020. OHCAR data provides a means of exploring temporal trends in OHCA incidence, care, and outcomes over time. It also provides a means of exploring whether system developments were associated with a change in key outcomes.This research aims to summarise key trends in available OHCAR data from the period 2012 - 2020, to explore and model predictors of bystander CPR, bystander defibrillation, and survival, and to explore the hypothesis that significant system level temporal developments were associated with improvements in these outcomes.</p><p><strong>Methods: </strong>The following protocol sets out the relevant background and research approach for an observational study that will address the above aims. Key trends in available OHCAR data (2012 - 2020) will be described and evaluated using descriptive summaries and graphical displays. Multivariable logistic regression will be used to model predictors of 'bystander CPR', 'bystander defibrillation' and 'survival to hospital discharge' and to explore the effects (if any) of system level developments in 2015/2016 and the COVID-19 pandemic (2020) on these outcomes.</p><p><strong>Discussion: </strong>The findings of this research will be used to understand temporal trends in the care processes and outcomes for OHCA in Ireland over the period 2012-2020. The results can further be used to optimise future health system developments for OHCA in both Ireland and internationally.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"6 ","pages":"17"},"PeriodicalIF":0.0,"publicationDate":"2023-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10474347/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10152691","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol","authors":"Melissa Kinch, Thilo Kroll, Diarmuid Stokes, Suja Somanadhan","doi":"10.12688/hrbopenres.13684.3","DOIUrl":"https://doi.org/10.12688/hrbopenres.13684.3","url":null,"abstract":"<ns4:p>Background Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families. Methods A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools. Conclusions Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.</ns4:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"65 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136103326","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol.","authors":"Melissa Kinch,&nbsp;Thilo Kroll,&nbsp;Diarmuid Stokes,&nbsp;Suja Somanadhan","doi":"10.12688/hrbopenres.13684.2","DOIUrl":"10.12688/hrbopenres.13684.2","url":null,"abstract":"<p><strong>Background: </strong>Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be a challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families.</p><p><strong>Methods: </strong>A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools.</p><p><strong>Conclusions: </strong>Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"6 ","pages":"9"},"PeriodicalIF":0.0,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10439360/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10406192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The impact of telemedicine enabled pre-hospital triage in acute stroke - a protocol for a mixed methods systematic review.","authors":"Deirdre McCartan, Stuart Lee, Jorin Bejleri, Paul Murphy, Anne Hickey, David Williams","doi":"10.12688/hrbopenres.13514.2","DOIUrl":"10.12688/hrbopenres.13514.2","url":null,"abstract":"<p><strong>Introduction: </strong>Increasing access to thrombolysis and thrombectomy through improved pathway organisation remains a health service challenge that requires contextualisation to the geographic, demographic and resourcing status of any regional stroke service. Pre-hospital delays or delays during inter-hospital transfers can result in patients being outside the window for one or both interventions. Pre-hospital triage using technology-enabled interdisciplinary communication networks may facilitate rapid individualized care decisions, permitting streamlined care pathways to hospital sites most appropriate to their clinical presentation and history in the first instance. Understanding the experience of those involved in efforts to improve or reorganise care may help to explain the impact observed.</p><p><strong>Objectives: </strong>1. To review the impact of pre-hospital telemedicine enabled workflow intervention strategies on patient outcomes and on service process metrics in hyper-acute stroke care2. To examine how the experience of those involved in providing or receiving such interventions might identify key characteristics of effective interventions.</p><p><strong>Inclusion criteria: </strong>Quantitative, qualitative and primary mixed methods studies will be included. Quantitative studies will assess effectiveness of telemedicine-enabled interventions that facilitate pre-hospital acute stroke triage. Intervention effects on functional outcomes of patients, on intervention rates and on key time metrics in hyperacute stroke care will be assessed. Qualitative studies will explore the experiences of people involved in or impacted by these interventions.</p><p><strong>Methods and analysis: </strong>A convergent segregated mixed methods systematic review will synthesise and integrate primary qualitative, quantitative and mixed methods studies using the Joanna Briggs Institute methodology. Database searches will include OVID (MEDLINE), EMBASE, The Cochrane Library, CINAHL and Web of Science. Critical appraisal will include the Mixed Methods Assessment Tool. Results of quantitative studies and findings of qualitative studies will be integrated and configured to explore and contextualize each single method synthesis.</p><p><strong>Systematic review registration: </strong>This protocol has been submitted for registration with PROSPERO.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"5 ","pages":"32"},"PeriodicalIF":0.0,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10632592/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89720956","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Perspectives and factors associated with informal human milk sharing: a mixed-methods systematic review protocol","authors":"Niamh Vickers, Anne Matthews, Gillian Paul","doi":"10.12688/hrbopenres.13718.2","DOIUrl":"https://doi.org/10.12688/hrbopenres.13718.2","url":null,"abstract":"<ns4:p>Background The practice of informal human milk sharing is a relatively new phenomenon and poses significant questions in the domain of infant feeding. Informal human milk sharing is a means of donating human milk from another lactating individual who is not the child’s biological parent, in a casual manner, that is, without the involvement of health professionals or agencies. The advent of digital technology has facilitated the donation and receipt of human milk through digital online platforms and thus has amplified this modern practice. This research aims to comprehensively examine and synthesize evidence about the motivations, barriers, facilitators and experiences of individuals who both donate (donors) and the primary care givers of the infants who receive (recipients) human milk informally to provide to infants. Methods A mixed-methods systematic review will be undertaken. This review will consider qualitative, quantitative and primary mixed-methods studies which report on the factors associated with informal milk sharing, and on donors’ and recipients’ experiences of the practice. Primary mixed-method studies will be included if the individual qualitative and quantitative components can be extracted. Five databases will be searched for studies on informal human milk sharing published from inception of the database. Study quality will be evaluated using the standardized JBI critical appraisal tools, selected based on the methodology in each individual study. Data extraction will be conducted using the JBI mixed methods data extraction form followed by data transformation, synthesis and integration. This mixed-methods systematic review will follow a convergent integrated approach in accordance with JBI guidance. Discussion Informal human milk sharing is a novel practice in the domain of infant feeding. This review will enable a thorough understanding of this practice from both the donors and recipients’ perspective and will have implications for healthcare professionals, policy and future clinical decision-making. Protocol registration number PROSPERO CRD42023405653</ns4:p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":"13 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135113987","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}