|
1
|
Investigating issues around end of life decision making. This could include:
|
3
|
2
|
3
|
2
|
2
|
38 (12)
|
|
• Profile of end of life decisions for people with ID, incl: starting PC pathways, withholding/withdrawing treatment
|
|
• Methods and processes of decision making
|
|
• Influencing factors on decision making
|
|
• Patient participation in decision making, incl communication issues
|
|
• Developing a decision making framework
|
|
2
|
Mapping the scale and scope of the issue: What is the current state of affairs with regards to PC for people with ID, and how does this compare to the general population? This could include:
|
4
|
3
|
-
|
1
|
-
|
34 (8)
|
|
• Access to healthcare and PC services
|
|
• Societal attitudes towards dying and people with ID
|
|
• Relevant national and international laws
|
|
• People with ID, cancer and access to cancer services
|
|
• Transitions between services
|
|
3
|
Investigating the quality of PC for people with ID.
|
3
|
2
|
2
|
1
|
1
|
32 (9)
|
|
This could include:
|
|
• Challenges in achieving best practice (Consensus Norms)
|
|
• Perspectives and experiences of people with ID, families, carers, staff
|
|
• Levels of patient involvement
|
|
• Understanding best practice models for dementia
|
|
• Collating case studies on patients and/or organisational developments
|
|
4
|
Developing outcome measures and instruments for PC of people with ID. This could include:
|
2
|
1
|
1
|
2
|
1
|
22 (7)
|
|
• Common European instrument for measuring quality of PC for people with ID
|
|
• Adapting existing measures (incl contrast with general population)
|
|
• Developing new measures/instruments
|
|
5
|
Clarifying definitions and philosophies:
|
-
|
2
|
1
|
-
|
2
|
13 (5)
|
|
Develop a common language
|
|
“Intellectual disabilities”, “Palliative care”, “Europe”
|
|
6
|
Developing specific tools and guidelines to improve PC of individuals with ID (and investigating the impact of such tools). This could include:
|
-
|
1
|
1
|
2
|
1
|
12 (5)
|
|
• Assessment of pain and other symptoms
|
|
• Breaking bad news
|
|
7
|
Focusing on training and resources.
|
-
|
1
|
-
|
2
|
1
|
9 (4)
|
|
• Develop resources, incl. training programmes
|
|
• Collate (inter) national resources (training, information)
|
|
8
|
Investigating economic issues. This could include:
|
-
|
-
|
1
|
-
|
3
|
8 (4)
|
|
• Developing economic models
|
|
• Investigating ways to maximise good results in cost-effective ways
|
|
9
|
Promoting collaborative working. This could include:
|
-
|
-
|
1
|
-
|
2
|
5 (3)
|
|
• Testing ways to improve care through collaboration
|
|
10
|
Investigating policies and strategies. This could include:
|
-
|
-
|
1
|
1
|
-
|
5 (2)
|
|
• Investigating connections between local needs/person-centred
|
|
• Influence of (inter) national policies on PC for people with ID
|
|
• Plans with national policies and service provision
|
|
11
|
Review and analyse work already done.
|
-
|
-
|
1
|
-
|
-
|
3 (1)
|
