Public Reporting of Adverse Events From Long-Term Care Facilities for Older Persons and People With Disability in Ireland 2013-2019: Development of an Openly Accessible Database and Descriptive Analyses

O’Regan, Stephanie; McGrane, Niall; Dunbar, Paul; Dunnion, Mary; Leistikow, Ian; O’Connor, Laura

doi:10.1016/j.jamda.2021.09.015

Cited by 12 publications

(22 citation statements)

References 3 publications

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“…Three parent themes were identified and there was evidence for these in each interview, from both settings. Privacy was a major concern of the residents, reiterating the concerns of the LENS project team who were already in the process of ensuring the database did not contain any information that could be used to identify an RCF or an individual [ 13 ]. The concerns of residents reinforced the focus of anonymity by the team.…”

Section: Discussionmentioning

confidence: 99%

“…The database developed, known as the Database of Statutory Notifications from Social Care in Ireland [ 13 ], contains data surrounding AEs involving vulnerable populations, older people and people with disability. While the LENS project does not have participants, members of these groups who are residents of RCFs may be impacted by any improvements in the quality of care as a result of the LENS project research.…”

Section: Methodsmentioning

confidence: 99%

“…Opinions and insights into two different topics were sought during the interview. The first pertained to the development of the Database of Statutory Notifications from Social Care in Ireland [ 13 ]. The second pertained to research being carried out by the researchers using this same database, in general and specifically on practice surrounding adverse events in RCFS in Ireland [ 16 ].…”

Section: Methodsmentioning

confidence: 99%

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To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

2023

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Background Public and patient involvement and engagement (PPIE) is an important part of research. The inclusion of PPIE in research is becoming more widespread, however, there are some areas where it is still uncommon. For example, undertaking PPIE in secondary analysis projects is uncommon and PPIE with difficult to reach populations and vulnerable groups can be seen as being too difficult to facilitate. The aim was to summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary analysis with a vulnerable, hard to reach population; residents of residential care facilities (RCFs), during the COVID-19 pandemic. Methods As part of a project to develop a publically available database of statutory notifications of adverse events from RCFs in Ireland, residents (n = 9) from RCFs for older people and people with disability were telephone interviewed. Residents were engaged through gatekeepers and posted participant information and consent forms. Themes were identified using content analyses of interview notes. Results Three parent themes were identified, each with two subthemes: privacy concerns, enthusiasm and dissemination of research findings. Residents highlighted the importance that no personal information be shared in the database. Once data were anonymized, residents thought that the database should be published and shared. Residents reported being happy about research being undertaken using the data and thought that publishing the database would help inform the public about RCFs. Completing a PPIE project with a vulnerable group during the global COVID-19 pandemic required planning and resources. Resources included finances, time and expertise. Conclusions The involvement of residents informed the data inclusion in the published database and the approach taken in the protection of personal data. Enthusiasm for publication and research using the database by residents encouraged the developers as it was considered something that was wanted by residents. The benefits of PPIE can be achieved with vulnerable groups during unprecedented times with the appropriate planning. It requires dedication of time, finances and expertise. Overcoming the obstacles was achievable and worthwhile. The approach outlined can be used as an example to support PPIE in secondary analysis projects and or with vulnerable groups.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

2023

Self Cite

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“…The rst pertained to the development of the Database of Statutory Noti cations from Social Care in Ireland. (9) The second pertained to research being carried out by the researchers using this same database, in general and speci cally on practice surrounding adverse events in RCFS in Ireland (HSCC reference when published) and on contributing factors to adverse events in RCFs in Ireland (JAMDA reference when published). No demographic data, other than sex, were collected as we felt it was unnecessarily intrusive in a study of this nature as demographic data would not impact on the results of the study.…”

Section: Data Collectionmentioning

confidence: 99%

To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

McGrane

Dunbar

Keyes

2022

Preprint

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BackgroundPublic and patient involvement and engagement (PPIE) is an important part of research. The inclusion of PPIE in research is becoming more widespread, however, there are some areas where it is still uncommon. For example, undertaking PPIE in secondary analysis projects is uncommon and PPIE with difficult to reach populations and vulnerable groups can be seen as being too difficult to facilitate. The aim was to summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary analysis with a vulnerable, hard to reach population; residents of residential care facilities (RCFs), during the COVID-19 pandemic. MethodsAs part of a project to develop a publically available database of statutory notifications of adverse events from RCFs in Ireland, residents (n=9) from RCFs for older people and people with disability were telephone interviewed. Residents were engaged through gatekeepers and posted participant information and consent forms. Themes were identified using content analyses of interview notes. ResultsThree parent themes were identified, each with two subthemes: privacy concerns, enthusiasm and dissemination of research findings. Residents highlighted the importance that no personal information be shared in the database. Once data were anonymized, residents thought that the database should be published and shared. Residents reported being happy about research being undertaken using the data and thought that publishing the database would help inform the public about RCFs. Completing a PPIE project with a vulnerable group during the global COVID-19 pandemic required planning and resources. Resources included finances, time and expertise. ConclusionsThe involvement of residents informed the data inclusion in the published database and the approach taken in the protection of personal data. Enthusiasm for publication and research using the database by residents enthused the developers as it was considered something that was wanted by residents. The benefits of PPIE can be achieved with vulnerable groups during unprecedented times with the appropriate planning. It requires dedication of time, finances and expertise. Overcoming the obstacles was achievable and worthwhile. The approach outlined can be used as an example to support PPIE in secondary analysis projects and or with vulnerable groups

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“…This database includes all notifications received by HIQA since November 2013 from RCFs nationwide. There were 14,611 notifications from 1764 active RCFs in 2018 (O'Regan et al, 2021). Notifications of unexpected death, infectious disease outbreak, serious injury to residents, unexplained absence of residents, allegations of abuse, staff misconduct, professional review of members of staff and, any fire, loss of service or unplanned evacuation were analysed.…”

Section: Study Settingmentioning

confidence: 99%

Management and reporting of safety incidents by residential care facilities in Ireland: A thematic analysis of statutory notifications

McGrane

O'Regan

Dunbar

et al. 2022

Health Social Care Comm

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The prevention of safety incidents (SI) in health and social care settings is an ongoing undertaking. Limited research has been conducted on SIs outside of acute care.Internationally residential care facilities (RCFs) are typically regulated to promote quality and safeguarding. A part of this regulation is the statutory responsibility of RCFs to notify the regulator about SIs. Notifications include details surrounding SIs and are used to inform the regulatory monitoring approach. The recent development of the Database of Statutory Notifications from Social Care in Ireland facilitates indepth analysis of notifications which can be used to inform the management of SIs and thus, improve quality and safety. The aim of this study was to analyse narratives provided in statutory notifications for older persons and people with disability, in order to identify current management of SIs, system vulnerabilities and reporting practices.A Qualitative Descriptive approach was taken. A random sample of notifications received in 2018 was drawn and stratified by service-type and notification-type. Data extraction was conducted against priori agreed target areas of management, system vulnerabilities and reporting practices. Inductive thematic analysis was used identifying two parent themes: 'chronology' and 'regulatory input'. 'Chronology' subthemes included 'pre-event', 'immediate response' and 'continued response'. Measures that are resident focused and follow policies and protocols in RCFs to prevent or mitigate the seriousness of SIs were evident in the immediate response and continued response. The actions taken in the immediate and continued response in turn became part of the pre-event of future SIs. Under 'regulatory input' subthemes included 'inaccurate reporting', 'lines of inquiry', 'requests for further information', 'identification of repetitive patterns' and 'satisfactory conclusion'. In conclusion, RCFs manage SIs with short and longer term actions focused on resident wellbeing. These actions in turn become part of the pre-event of future SIs. Regulatory input highlighted regulatory burden. K E Y W O R D Sadverse events, incident reports, nursing homes, residential care facilities | e4937 MCGRANE et al.

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Public Reporting of Adverse Events From Long-Term Care Facilities for Older Persons and People With Disability in Ireland 2013-2019: Development of an Openly Accessible Database and Descriptive Analyses

Cited by 12 publications

References 3 publications

To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic

Management and reporting of safety incidents by residential care facilities in Ireland: A thematic analysis of statutory notifications

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