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Table 1 “Round robin” results: identified research priorities palliative care (PC) of people with intellectual disabilities (ID)

From: Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Not in order of importance; grouped in categories for ease of reading
  1. Mapping PC services accessed by people with ID in Europe (availability; usability)
  2. Collect data on death and dying across Europe in the general population and inclusion of people with ID in those data (Clarification: investigate existing data bases)
  3. Mapping transitions of people with ID at EoL, incl impact on the patient
  4. How many people with ID are currently on PC pathways? How are they identified, what are their characteristics; at local/national/international level? (Clarification: what is the scale, scope and cost of the problem?)
  5. What healthcare services do people with ID access at EoL across Europe?
  6. What are the relevant (inter) national laws across Europe? (Clarification: laws affecting the PC of people with ID)
  7. What is the provision of care for people with ID dying of cancer?
  8. What are the societal attitudes towards dying and people with ID across Europe?
Quality of care
  1. Level of patient involvement in all aspects of PC (actual and preferred)
  2. Develop a bank of case studies on organisation development, to develop PC for people with ID in one research framework
  3. What is the quality of care provided to people with ID in Europe? What explains variability?
  4. What are the challenges in achieving the Consensus Norms across Europe?
  5. What are best practice norms for PC for the general population and for people with ID across Europe? (Clarification: What are the national indicators for good PC practice?)
  6. What are the perspectives on PC needs from: people with ID; family/carers; staff – across Europe?
  7. Identifying facilitators and barriers to achieving high quality PC for people with ID throughout Europe
  8. What are the experiences of families and (paid) carers across Europe?
  9. Understanding best practice models for advanced dementia
End of life decisions
  1. Develop a decision making framework for EoL care decisions (to support staff/family)
  2. What are the methods of participation in EoL decisions for people with severe/profound ID across Europe?
  3. How to communicate with people with ID about their situation/illness in order to facilitate their involvement in care/decisions?
  4. Factors determining prevalence and nature of EoL decisions
  5. How do we develop Advance Care Planning for people with ID? (How? When? Who? etc.)
  6. What is the process for deciding a person with ID needs PC? How is that communicated?
  7. Does withholding/withdrawing treatment, and assisted dying, differ for people with ID and the general population? What is the effect on people with ID, carers, professionals?
  1. What is the influence of (inter) national policies and guidelines on PC provision for people with ID? How can policies be used to improve provision?
  2. How to connect individual Person Centred Planning procedures with social care/healthcare/ political planning?
  1. Develop training programme; implement and evaluate
  2. Develop learning programmes on death and dying for people with ID
  3. Developing and collating (inter) national resources: training, information materials
Guidelines and tools on individual level  
  1. What is the impact of breaking bad news on people with ID?
  2. How do we assess symptoms and PC needs of people with ID?
Outcome measures
  1. Identifying and testing patient related outcome measures for PC for people with ID across Europe (i.e. a common instrument); compare and contrast with general population
  2. Test existing instruments / develop new instruments to identify PC needs and priorities for people with ID across Europe and across services
Collaborative working
  1. How to promote collaborative working in settings across Europe?
  2. Test ways to improve PC for people with ID in a sample of European regions/countries
  1. What maximises good results for PC for people with ID at EoL, in the most cost-effective manner?
  2. How to develop economic models for PC for people with ID?
Definitions and philosophies
  1. Clarify and agree definitions: PC, ID, Europe
  2. Investigate and critique the philosophy of PC from an ID perspective
  1. Analyse/review work already done in this area