We used an Internet search engine (Google) and prior knowledge of organisations working in this field to identify available resources between June and September 2021, which we then collated, analysed and categorised by obtaining resources, summarising their key characteristics and comparing their features. We define “resource” to include any materials aimed at providing information about end-of-life care or supporting the processes involved, including, but not limited to: booklets, webpages, videos, podcasts, tools/toolkits, or fact sheets.
Inclusion criteria
Resources designed to support end-of-life care processes and advance care planning for adult patients (aged 18 or over), who were either identified as likely to be in the last year of life, or planning ahead for this period (e.g. due to life-limiting conditions) were included. We included resources aimed at health and social care professionals, individuals considering end of life, and those important to them. Included resources were intended for a UK audience or international resources with relevance to a UK audience (for example those including reference to UK guidelines such as NICE).
Exclusion criteria
Resources that had no relevance for a UK audience, or were not focused on medical preferences, treatment or care (e.g. resources relating to financial matters or environmental factors such as music to be played during last days of life) were excluded.
Search and selection strategy
First, resources were identified using the websites of organisations working in this area familiar to research team members, searching for content of relevance to end-of-life care. Resources that were accessible via those links were then considered for inclusion in the catalogue.
To maximise coverage of relevant materials from the selected organisations, a systematic search approach was taken which incorporated Google searches of key terms ("advance care" OR "end of life" OR “palliative”) for each organisation’s website. The top 20 results were reviewed to determine whether the material accessed met inclusion criteria and whether it had been previously captured in the catalogue.
To identify resources beyond the research team organisation list, a systematic approach was carried out using a series of key search terms on the Google search engine (see Appendix 1). The top 50 results were reviewed to determine whether the material met inclusion criteria.
Finally, for resources that comprised lists of other resources, a click-through of each link to search for additional tools/toolkits was carried out. Where a tool/toolkit or proforma was identified, it was also added to the catalogue.
Data extraction and synthesis
Resources that met the inclusion criteria were collated into a spreadsheet. Data was extracted from each resource regarding key characteristics – e.g. organisation, resource modality, reference to evidence etc. (see Table 1). Codes for each characteristic were initially developed inductively through review of the first 100 resources, and the coding frame was then applied to remaining resources. Coding was reviewed upon completion; disagreements were discussed and coding was adapted as necessary. In addition, we sought to categorise each resource in terms of its relevance to the following domains in the process of planning and delivering care for people approaching end of life:
Table 1
Key features collated for each resource. Categorisations with asterisks had over 100 unique labels.
Data Field
|
Categorisations Assigned
|
Resource title
|
● Title*
|
Publishing Organisation
|
● Organisation name*
|
Organisation type (e.g. charity)
|
● Charity
● Hospice
● Not for Profit/Non-Governmental Organisation
● Private Sector
● Professional Membership Organisation
● Public Sector (Local Authority)
● Public Sector (NHS)
● Regulatory/policy
● Research Institute
● Web/Information Hub
|
Modality
|
● Booklet
● Fact Sheet
● Podcast
● Tool/Toolkit
● Video
● Web Page
|
Function
|
● Informational
● Learning and development
● List of Resources
● Proforma / Documentation
● Protocol
|
Link
|
● Hyperlink to resource*
|
Target audience
|
● Caregivers, family, and important others
● General
● Health and social care professionals
● Patients and people approaching end of life
|
Target condition/population (e.g. cancer)
|
● Acute care
● Advanced Cancer
● Alzheimer's
● Brain tumour
● Cancer
● Cancer and non-cancer patients
● Care home residents
● COVID19
● Dementia
● Diabetes
● Frailty
● General
● Heart Failure
● Homeless people
● Intellectual disabilities
● Kidney disease
● Learning disabilities
● Learning disabilities and Covid
● LGBT+
● Life limiting illness and COVID19
● Long term lung condition
● Motor neurone disease
● Pancreatic cancer
● Parkinson's Disease
● South Asian community
|
Population specificity
|
● Disease-specific
● General
● Patient community
● Setting
|
Country setting (if not UK)
|
● Ireland
● Netherlands
● USA
|
1.Identification of people who may be entering the last year of life
|
● Yes
● No
|
2. Access to end of life care services
|
● Yes
● No
|
3. Initiation and conduct of important conversations about end-of-life care and preferences
|
● Yes
● No
|
4. Advance care planning, including recording of preferences and plans
|
● Yes
● No
|
5. Ensuring that plans and preferences are accessed and used by health and social care services
|
● Yes
● No
|
Refers to evidence / literature
|
● Yes
● No
|
Refers to NICE guidelines?
|
● Yes
● No
|
- Identification of people who may be entering the last year of life
- Access to end-of-life care services
- Initiation and conduct of important conversations about end-of-life care and preferences
- Advance care planning, including recording of preferences and plans
- Ensuring that plans and preferences are accessed and used by health and social care services
Interactive resources for appraisal
We then sought to identify those resources within the catalogue that included ‘interactive’ elements, defined by the following criteria:
-
Any tools, toolkits or proformas which facilitated decision-making through interactivity with the user (e.g. decision support tool), included instruction for the user (e.g. algorithm on what to do when) or were intended to be used as part of the planning and delivery of care (e.g. proforma) were categorised as interactive resources.
-
Resources and resource lists which had no interactivity, instruction, simplification or direction were categorised as non-interactive.
Two researchers independently reviewed each resource and allocated it to either the interactive or non-interactive group, on the basis of these criteria. Where the reviewers were in disagreement, allocation was determined via discussion with a third researcher.
In order to identify the characteristics which might be most helpful in embedding best practice end-of-life care, interactive resources were then explored individually and sequentially across each of the five domains described above. One researcher reviewed the content of interactive resources line-by-line, and inductively identified themes arising relating to their utility, which could influence adoption of best practice. These themes were discussed and agreed with other team members, and are presented below under the domains of planning for end-of-life treatment and care to which they related.