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- BLOG - Access to secure data during the Covid-19 pandemic - a model for the future?
- Covid-19 and Care Homes: Advances in Administrative Data Research during the pandemic
- DATA INSIGHTS -Deprivation and informal care at the end of life
- BLOG - Reflections on engaging with children & young people about data
- NEWS - Innovative new residential linkage tool launched
- BLOG SERIES - Dramatic increase in deaths at home- No.4
- DATA INSIGHTS - Youth Movements, Social Mobility and Health Inequalities
- NEWS - New report warns of deepening poverty crisis for Scottish families
- New report on Infants Born into Care in Scotland
- Spotlight on Dr Elizabeth Lemmon
- Spotlight on Jan Savinc
- BLOG - Covid-19 fines in Scotland: What we know so far
- BLOG - The value of social science and administrative data research in Scotland: how we are helping respond to COVID-19
- NEWS - Joining together with Research Data Scotland to co-host existing public panel on data
- DATA INSIGHTS - Exploring illegal drug consignments in Scotland
- DATA INSIGHTS -Linking two administrative data sets about looked after children
- NEWS - ADR UK grants 20 PhD studentship opportunities focused on quantitative research using linked administrative data
- NEWS – ADR Scotland data ambassadors launched
- Spotlight on Peter Christen
- The importance of administrative data
- Virtual Conference - Data Linkage: Information to Impact
- An Introduction to Data Science for Administrative Data Research course - March 2023
- BLOG SERIES - Dramatic increase in deaths at home - No.7
- BLOG SERIES - Dramatic increase in deaths at home
- BLOG SERIES - Dramatic increase in deaths at home- No.3
- DATA INSIGHTS - Investigating the effects of class composition and class size on pupils’ attainment in Scottish primary schools
- NEWS - New opportunity to join ADR Scotland’s Public Panel
- BLOG - Engaging the public through our public panel
- BLOG - Exploring the potential of synthetic data
- Children’s Health in Care in Scotland (CHiCS)
- DATA INSIGHTS - Automatic Coding of Occupations: Methods to create the Scottish Historic Population Database (SHPD)
- DATA INSIGHTS - Selective schools: do they improve health?
- DATA INSIGHTS - Were people who died at home less likely to attend hospital at the end of life during the Covid pandemic?
- EVENT - Active Travel: New Data, New Insights
- EVENT - Holyrood Evidence Week: Doing Data Better for Policy and Public Good
- EVENT - Unlocking criminal justice data in Scotland: Findings from Data First
- IPDLN Conference - Data linkage research: informing policy and practice
- NEWS - Making nursing data available to inform policy
- NEWS - New report on The Impact of Covid-19 on Children’s Care Journeys in Scotland: An Analysis of the Administrative Data on 'Looked After' Children
- NEWS - Updated report on Infants Born into Care in Scotland
- Scout and Guide participation boosts later life health
- BLOG - Geospatial Ambitions
- BLOG - Taking historical death records and developing a database for future analysis
- BLOG - Unlocking criminal justice data
- DATA INSIGHTS - Community mortality due to Covid-19
- DATA INSIGHTS - What makes people more likely to cycle to work?
- Future-proofing investment into administrative data research announced in Scotland
- NEWS - Understanding the dynamics of the nursing workforce: the potential of routinely collected data
- Spotlight on Joanna Soraghan
- Spotlight on Katherine Falconer
- Why misconceptions about population data can lead to bad outcomes
- ADR Scotland publishes its strategy for 2022-2026
- BLOG - Developing and re-shaping our public panel
- BLOG - Review of the recent DWP Areas of Research Interest Workshop
- BLOG: Developing a cross-national research agenda on crime and convictions
- BLOG: Working together to make a difference with data
- DATA INSIGHTS - Homelessness duration in Scotland: how long does rehousing take?
- DATA INSIGHTS - Occupation and COVID-19 deaths: Scotland in a comparative perspective
- DATA INSIGHTS -The health and economic benefits of active commuting in Scotland
- EVENT - ADR UK Conference 2023
- EVENT - RSE The secret world of data
- NEWS - New comic on children's rights and data
- NEWS - Report published on our children’s engagement pilot study
- NEWS - When did fines issued by the police for breaking Covid rules peak?
- Scotland’s portfolios: Research and Statistical Data - building a new approach to thematic data linkage
- Spotlight on Cecilia Macintyre
- Spotlight on Dr Evan Williams
- Spotlight on Fernando Pantoja
- Spotlight on Laurie Berrie
- ADR Scotland Winter Partnership Session - **internal event**
- BLOG - AGEING AND HOMELESSNESS IN SCOTLAND
- BLOG - Can we use linked administrative data to identify social disadvantage?
- BLOG - Commuting and its impact on health
- BLOG - The Dynamics of the Nursing Workforce in the UK: Using data to support our nurses
- BLOG: Growing up in kinship care
- Congratulations to Alastair McAlpine, the new Chief Statistician for Scottish Government
- DATA INSIGHTS - Analysing a season of death and excess mortality in Scotland’s past
- EVENT - ADR UK Virtual Half Day event
- EVENT - HDR UK Conference: Data for global health and society
- EVENT - Introduction to Data Science for Administrative Data Research course (IDS-ADR)
- Event - Public data for public good: towards better understanding children's lives
- NEWS - ADR Scotland's first flagship dataset
- NEWS - Data research initiative secures £90 m funding extension
- NEWS: Our role supporting the new Covid-19 research data service in Scotland
- Spotlight on Gina Anghelescu
- Spotlight on Michelle K Jamieson
- Webinar - An Introduction to Looked-After Children Dataset
- ADR Scotland Away Day (**for staff only**)
- BLOG - An Inside Job: Using Criminology, Police Data and a Lot of Nouse
- BLOG - Improving justice data to promote data justice in Scotland
- BLOG - Location of death in 2020: a changing trend from hospitals to homes
- BLOG - Reflecting on the ADR UK Conference: Insights from our new PhD Researchers
- BLOG - Seeking feedback on Research Data Scotland’s core principles via our public panel
- BLOG - What skills, training and support are required by those wishing a career as an administrative data researcher?
- BLOG No. 9 - Final blog in this 'deaths at home' series
- BLOG SERIES - Dramatic increase in deaths at home - No. 6
- BLOG SERIES - Dramatic increase in deaths at home - No.8
- BLOG SERIES - Dramatic increase in deaths at home- No.5
- BLOG: 5 things I've learnt about working with policymakers...
- BLOG: Automating Coding for Large Historical Datasets
- BLOG: COVID-19- How increased deaths at home impact the carer community
- DATA INSIGHTS -Postal deliveries of drugs in Scotland
- EVENT - 'Getting things done with data in government'
- EVENT - Linking public sector data for research: an ADR UK showcase event
- EVENT Seminar - Administrative data for social policy research: potential and pitfalls
- NEWS - ADR Scotland launches new podcast series
- NEWS - Additional funding for Understanding Children’s Lives and Outcomes
- NEWS - Engaging children and young people
- NEWS: Police use of Fixed Penalty Notices under the Covid-19 regulations in Scotland: A new data report highlights links with deprivation and inequality
- NEWS: Police use of the new Covid-19 powers: Using administrative data to analyse and evaluate practice
- Research Data Scotland - New user forum
- Spotlight on Dr Patricio Troncoso
- Spotlight on Renata Samulnik
- Summary of ADR Scotland Winter Partnership session
- Directorship of the International Population Data Linkage Network (IPDLN) for 2021-22.
- BLOG: In the light of experience: InterRAI and the final thousand days of life
- Multiple health conditions and social care
- NEWS - Susan McVie elected as Fellow of the Academy of Social Sciences
- SCADR relocates to the Bayes Centre
- EVENT: Four day introduction to using administrative data for social and health research
- BLOG: The value of administrative data: DALYs and the Scottish Burden of Disease study
- BLOG: Where to start with parliamentary and policy engagement
- EVENT - International Conference on Administrative Data Research, Cardiff
- EVENT - Using data to realise the potential of the 'Last 1000 days'
- EVENT: TalkingData: ADR Scotland mini-summit
- EVENT: “Let’s use data to save time, money and lives”: ADR Scotland partners gather for mini-summit
- EVENTS: ADR Scotland researchers present at international conference in Cardiff
BLOG SERIES - Dramatic increase in deaths at home - No.7
Our seventh blog in the 'Deaths at Home' series looks at the outcome of conducting qualitative data with care service providers, who together with their patients have been affected the most by the increase in non-Covid related deaths at home during the pandemic.
Introduction
Commencing in July 2021, the Edinburgh Napier research team have carried out qualitative data research in order to add value to the existing research by engaging with care service providers, such as care homes, GPs, palliative care hospices and home care providers. The qualitative research that we have carried out so far has involved a series of one-to-one interviews and focus group discussion.
Research
Our engagement work has contributed to our understanding of the pandemic on the frontline and highlighted two main areas:
1. Fear
- Aspects of the pandemic, such as the restrictions on visits to hospitals, hospices and care homes, generated an increase in deaths at home due to the fact that those patients had relatives who could support them during the final phase of their life. This decision meant that their loved ones could continue their palliative care at home in the company of their families: ...‘reluctance of people to be admitted and try to avoid being admitted was probably because the primary driver of that was around restrictions on visitation and not being able to see loved ones.’ (Responder 4).
- Fear of contracting the virus - some families did not allow health service staff to enter their homes: ...‘there's been some reluctance from families to have people in the home for those fears about Covid, so they've waited as long as they possibly can before asking for support.’ (Responder 4).
2. Restrictions to Care Provision
- Living in remote areas - in some cases it was more difficult to access the provision of care: ...‘The care provision was much more difficult [in rural areas] because there was a distinct lack of care, such as not being able to go into people´s homes and provide the care they were doing beforehand in certain very remote areas.’ (Responder 5).
- Care packages - issues of lack of supervision or social care packages in place: …‘Currently I don´t have the data, but I know locally it appears to be a significant increase and I think this is sinister…it´s an increase in people being found dead basically at home without social care packages in place, without really oversight of the system’ (Responder 6). ...‘People are saying they felt abandoned by care packages which were withdrawn and staff who weren't able to do what they previously had been able to do. I think you know, a troubling one emotionally and I think it's something that we're going to be dealing with as a society for years to come.’ (Responder 3).
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Service users/family lived experience - ‘There is the lived experience that goes alongside the numbers'. Some responders raised concern that people looking from the outside in may perceive that 'Death at home is a good thing, isn't it? And you have to then explain to them, well, not potentially. So yeah, I think that it's a hugely important piece of work…’ (Responder 4). ...‘This burden of care largely falls on families and they've been the person who's actually had this experience' therefore it's important to find out 'what it means for that family member that's been carrying out that caring role' and also to discover what's the long term impact of that? (Responder 4).
The Future...what next?
This research has allowed us to collect ideas and recommendations for the development of a much broader study to capture the experiences of informal carers and family members with respect to care at home, in particular palliative care. The findings so far have illuminated the need for further engagement to address some of the least desirable experiences that have occurred within the palliative care provision.
By hosting additional focus group discussions, we aim to explore the informal carer or family member's perspective of palliative care provision during the pandemic in Scotland. Once we have captured their perceived experience, we will then return to the quantitative data of the larger study, to ascertain if we can find any evidence that justifies those concerns.
Further information
If you would like to find out more about this research, please get in touch with Yina by emailing: y.garcialopez2@napier.ac.uk.
Author information
This article was published on 28 Oct 2021