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Short stay hospital admissions for an acutely unwell child: A qualitative study of outcomes that matter to parents and professionals (2022)
Journal Article
Malcolm, C., King, E., France, E., Kyle, R. G., Kumar, S., Dick, S., …Hoddinott, P. (2022). Short stay hospital admissions for an acutely unwell child: A qualitative study of outcomes that matter to parents and professionals. PLOS ONE, 17(12), Article e0278777. https://doi.org/10.1371/journal.pone.0278777

Background Numbers of urgent short stay admissions (SSAs) of children to UK hospitals are rising rapidly. This paper reports on experiences of SSAs from the perspective of parents accessing urgent care for their acutely unwell child and of health pr... Read More about Short stay hospital admissions for an acutely unwell child: A qualitative study of outcomes that matter to parents and professionals.

Insights from and limitations of data linkage studies: analysis of short-stay urgent admission referral source from routinely collected Scottish data (2022)
Journal Article
Dick, S., Kyle, R., Wilson, P., Aucott, L., France, E., King, E., …Turner, S. W. (2023). Insights from and limitations of data linkage studies: analysis of short-stay urgent admission referral source from routinely collected Scottish data. Archives of Disease in Childhood, 108(4), 245-246. https://doi.org/10.1136/archdischild-2022-324171

Introduction This study identified the referral source for urgent short-stay admissions (SSAs) and compared characteristics of children with SSA stratified by different referral sources. Methods Routinely acquired data from urgent admissions to Sc... Read More about Insights from and limitations of data linkage studies: analysis of short-stay urgent admission referral source from routinely collected Scottish data.

A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why? (2022)
Journal Article
Malcolm, C., & Knighting, K. (2022). A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?. BMC Palliative Care, 21, Article 31. https://doi.org/10.1186/s12904-022-00921-8

Background: Children’s palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family’s preferred place, which may include home, hospital or hospice. Limited evidence on models of best practic... Read More about A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?.

Practice based approaches to supporting the work related wellbeing of frontline care workers in care homes: A Scoping Review (2021)
Journal Article
Johnston, L., Malcolm, C., Rambabu, L., Hockley, J., & Shenkin, S. D. (2021). Practice based approaches to supporting the work related wellbeing of frontline care workers in care homes: A Scoping Review. Journal of Long-Term Care, 2021, 230-240. https://doi.org/10.31389/jltc.66

The COVID-19 pandemic has reinforced the need to ensure that strategic and operational approaches to retain high quality, resilient frontline care home workers are informed by context specific, high quality evidence. A targeted scoping review asked t... Read More about Practice based approaches to supporting the work related wellbeing of frontline care workers in care homes: A Scoping Review.

What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents (2021)
Journal Article
Malcolm, C., & Knighting, K. (2021). What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents. Palliative Medicine, 35(8), 1602-1611. https://doi.org/10.1177/02692163211023300

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely re... Read More about What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents.

Written Evidence to Independent Review of Adult Social Care Scotland (2021)
Report
Johnston, L. Written Evidence to Independent Review of Adult Social Care Scotland. Scottish Government

• The evidence presented here relates to four research studies conducted in relation to workforce resilience, burnout and support around death and dying in the care home sector. • While there are a wealth of resources to support care home staff well... Read More about Written Evidence to Independent Review of Adult Social Care Scotland.

Avoiding Burnout of the Care Home Workforce During the COVID-19 Pandemic and Beyond: Sharing National Learning and Local Initiatives (2021)
Journal Article
Johnston, L., Malcolm, C., Rambabu, L., Hockley, J., & Shenkin, S. D. (2021). Avoiding Burnout of the Care Home Workforce During the COVID-19 Pandemic and Beyond: Sharing National Learning and Local Initiatives. Age and ageing, 50(Suppl. 1), i12-i42. https://doi.org/10.1093/ageing/afab030.62

Introduction COVID-19 in care homes has heightened the risk of staff burnout, undermining already problematic staff retention and low morale. There has been an associated proliferation of resources and online initiatives to support frontline workers... Read More about Avoiding Burnout of the Care Home Workforce During the COVID-19 Pandemic and Beyond: Sharing National Learning and Local Initiatives.

What are the components of an effective model of home-based end of life care for children and families? (2020)
Presentation / Conference
Malcolm, C., & Knighting, K. (2020, October). What are the components of an effective model of home-based end of life care for children and families?. Paper presented at 2020 International Congress on Palliative Care, Montreal, Canada

Objectives: To assess the effectiveness of a home-based end of life care service delivered via a partnership model by two organisations as perceived by families who have accessed the service and professionals delivering the service. Methods: A rea... Read More about What are the components of an effective model of home-based end of life care for children and families?.

Home-based end of life care for children and their families – a systematic scoping review and narrative synthesis (2020)
Journal Article
Malcolm, C., Katherine, K., & Charlotte, T. (2020). Home-based end of life care for children and their families – a systematic scoping review and narrative synthesis. Journal of Pediatric Nursing, 55, 126-133. https://doi.org/10.1016/j.pedn.2020.07.018

Abstract Problem: There is a growing international drive to deliver children’s palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish t... Read More about Home-based end of life care for children and their families – a systematic scoping review and narrative synthesis.

Supporting the resilience and retention of frontline care workers in care homes for older people: A scoping review and thematic synthesis (2020)
Working Paper
Johnston, L., Malcolm, C., Rambabu, L., Hockley, J., & Shenkin, S. D. Supporting the resilience and retention of frontline care workers in care homes for older people: A scoping review and thematic synthesis

The COVID-19 pandemic has reinforced the need to ensure that strategic and operational approaches to retain high quality, resilient frontline care home workers, who are not registered nurses, are informed by context specific, high quality evidence.... Read More about Supporting the resilience and retention of frontline care workers in care homes for older people: A scoping review and thematic synthesis.

Providing home-based end of life care for children and their families: a realist evaluation of the Care 24 Lothian service (2020)
Presentation / Conference
Malcolm, C., & Knighting, K. (2020, March). Providing home-based end of life care for children and their families: a realist evaluation of the Care 24 Lothian service. Paper presented at Together for Short Lives - Conference 2020: Time for Change?, Manchester, UK

Background - The drive to ensure end of life care and death occurs in a child and families’ preferred setting, be that home, hospice or hospital, has been set by policy makers across the United Kingdom (UK) (Department of Health 2016; National Pallia... Read More about Providing home-based end of life care for children and their families: a realist evaluation of the Care 24 Lothian service.

Understanding the education and support needs of those providing children's palliative care in Scotland (2019)
Presentation / Conference
Malcolm, C., McGirr, D., & Grant, J. (2019, May). Understanding the education and support needs of those providing children's palliative care in Scotland. Paper presented at 16th World Congress of the European Association for Palliative Care, Berlin, Germany

Aim - To identify the current and future education, learning and continuing professional development requirements of staff and volunteers working in children’s palliative care. Design – Employing a qualitative exploratory design, data was collecte... Read More about Understanding the education and support needs of those providing children's palliative care in Scotland.

Scoping exercise to inform the development of an education strategy for Children's Hospices Across Scotland (CHAS) (2018)
Report
Malcolm, C., & McGirr, D. (2018). Scoping exercise to inform the development of an education strategy for Children's Hospices Across Scotland (CHAS). Edinburgh: Children's Hospices Across Scotland

This report presents findings from a scoping project examining current evidence relating to the provision of education across the United Kingdom (UK) and internationally. The overall aim of the project was to inform the development of an evidence bas... Read More about Scoping exercise to inform the development of an education strategy for Children's Hospices Across Scotland (CHAS).

Preparing a paediatric palliative care workforce (2018)
Presentation / Conference
Malcolm, C., McGirr, D., & Grant, J. (2018, October). Preparing a paediatric palliative care workforce. Presented at 22nd International Congress on Palliative Care (PAL), Montreal, Canada

Workshop objectives: This workshop is based on the results and recommendations of an extensive scoping project which aimed to develop an evidence based education strategy for children’s hospice and palliative care. It will be a dynamic and interactiv... Read More about Preparing a paediatric palliative care workforce.

A relational understanding of sibling experiences of children with rare life-limiting conditions: Findings from a qualitative study (2013)
Journal Article
Malcolm, C., Gibson, F., Adams, S., Anderson, G., & Forbat, L. (2014). A relational understanding of sibling experiences of children with rare life-limiting conditions: Findings from a qualitative study. Journal of Child Health Care, 18(3), 230-240. https://doi.org/10.1177/1367493513485825

Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been de... Read More about A relational understanding of sibling experiences of children with rare life-limiting conditions: Findings from a qualitative study.

Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families (2012)
Journal Article
Malcolm, C., Hain, R., Gibson, F., Adams, S., Anderson, G., & Forbat, L. (2012). Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families. Acta Pædiatrica, 101(9), 985-992. https://doi.org/10.1111/j.1651-2227.2012.02680.x

Aim:  The aim was to describe the nature, frequency, severity and management challenges of symptoms in children with two rare life-limiting conditions [Mucopolysaccharide (MPS) and Batten disease]. Methods:  This was an embedded mixed-method study... Read More about Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families.

The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals (2011)
Report
Malcolm, C., Adams, S., Anderson, G., Gibson, F., Hain, R., Morley, A., & Forbat, L. (2011). The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals. Stirling: University of Stirling

This report documents a mixed-method study examining the symptom profile and family experience of two rare life-limiting conditions. Data was collected across the UK, using a symptom diary designed for the study and qualitative interviews, informed b... Read More about The symptom profile and experience of children with rare life-limiting conditions: perspectives of their families and key health professionals.