Skip to main content

Table 5 Data extraction

From: International palliative care research priorities: A systematic review

Authors

Year

Aim of Study

Geographical Location

Participants

Methodology

Data Analysis

Priorities Identified (summarya)

De Vries et al.

2016

To inform organizational decision making and policy development regarding future research priorities for a hospice service in New Zealand

New Zealand

Palliative care staff (n = 10, 18, and 9 per round 1–3) volunteers (n = 10, 12, 11 per round) patients and family members (n = 6, 8 for round 1 and 2), and community linked professionals (n = 3)

Modified Delphi

Technique

Descriptive statistics. For each question, the proportion of scores of four or more were calculated and ranked to

identify the 48 most preferred topics

Patients and Families:

• Decision-making

• Bereavement and loss

• Symptom management

• Recognition of need and response of service

Staff and Volunteers:

• Symptom management

• Aged care

• Education

• Community

• Patient/family

• Bereavement & support for young people

Diffin et al.

2017

The aim of this project was to identify EoL research priorities specific to Greater Manchester via a consultation process with both healthcare professionals (HCPs) and carers

Greater Manchester (United Kingdom of Great Britain and Northern Ireland)

Healthcare Professionals from Greater Manchester (n = 32)/

Family carers from greater Manchester (n = 26)

Initial Scoping followed by consultation through informal workshops and interviews

Data organised under six main topic areas and ranked

Top 3 priorities for both groups:

1. Access to 24 h care

2. Planning end-of-life care in advance

3. Staff and carer education

Common themes:

• Need for improved communication between stakeholders

• Need for equal access to care

• Management of both the patient and carers, and HCPs

Palliative and end of life care

Priority Setting Partnership

2015

To identify unanswered questions

which are most important for people in their last years of life, current and bereaved carers, and health and social care professionals

United Kingdom and Ireland

1403 initial survey participants (48% professional; 35% bereaved carers; 13% current carers; 10% other; 4% patients; 3% volunteers)a

1331 interim prioritisation survey participants (64% professional; 22% bereaved family/carer; 9% current family /carers; 11% other; 8% public; 2% patient)a

24 workshop participants

aoverlap reported in categories as respondents reported as belonging to more than one category

James Lind Alliance Methodology

Initial survey generated 83 Qs. Ranking of 83 priorities.

Workshop (NGT) ranked top 28 questions to result in 10 priorities

Ranking

Top 10 in order of priority:

1. The best ways of providing palliative care outside of working hours.

2. Improving access to palliative care services be improved for everyone regardless of location?

3. Benefits of Advance Care Planning and other approaches.

4. Information and training for carers and families

5. Ensuring staff, including healthcare assistants, are adequately trained.

6. Determining palliative care needs for patients with non-cancer diseases

7. Core palliative care services regardless of diagnosis.

8. Benefits of providing care in the patient’s home

9. Ensuring continuity for patients at the end of life.

10. Assessing and treating pain and discomfort in people at the end of life with communication and/or cognitive difficulties.

Pan-Canadian Framework for Palliative and End –of-Life Care Research

2017

To develop a research framework for palliative and end-of-life care

Canada

36 Interviews with individuals drawn from a number of stakeholder groups (patients, caregivers, health care practitioners, health care administrators, opinion leaders and others with an interest in palliative and eol issues.

172 completed surveys (51 patients/caregivers; 41 practitioners; 62 Researcher/Clinician Researcher; 13 decision makers; 5 volunteers)

Literature review (2005–2013), interviews (face-to face and by telephone and online survey

Thematic grouping

Priority research areas identified under three broad themes and eight sub-themes:

1. Transforming model of care

a. Engaging communities using a public health approach

b. Early and integrated palliative care

c. Access to quality palliative and end-of-life care

2. Patient and family centeredness

a. Pain and symptom management

b. Optimising quality of care

c. Person-reported outcomes

3. Ensuring equity

a. Addressing the needs of special populations

b. Addressing health disparities

Perkins et al.

2008

Assess patients research priorities for palliative care

East Anglia (United Kingdom of Great Britain and Northern Ireland)

Patients (n = 112)

Questionnaire

Statistical Analysis

Questions

1. Emergency:

2. Pain Control:

3. Helping doctors to hear and understand what patients are saying

Thematic areas ranking:

1. Talking with patients

2. Medication

3. Symptoms

4. Help for patients/ families

Pillemer et al.

2015

To identify knowledge gaps and types of studies that should be conducted to improve providers’ ability to deliver palliative care most effectively.

New York, United States of America

Researchers (n = 18)

Practitioners (n = 65)

Research-Practice Consensus Workshop

Ranking and consensus

• Research to improve individual-level palliative care practice

• Research is needed on the physiology of the end of life, including nutrition, hydration, and oxygen, and on nonpharmacological approaches, including complementary and alternative therapies.

• Research to improve system-level palliative care practice and capacity

• Research on societal context for palliative care in the United States

Powell et al.

2014

To develop a prioritized research agenda for palliative care in

Africa.

Africa

Palliative care professionals and

Researchers

Phase 1: (n = 49)

Phase 2: (n = 14)

Phase 1: Consultative workshop

Phase 2: Prioritization

using a consensus

development process.

Descriptive analysis

Three broad thematic areas were identified:

• Patient, family, and volunteers

• Health providers

• Health systems

Riffin et al.

2015

To identify important directions for future research and inform the development of effective health policy and clinical practice in palliative care.

International Literature

n/a

Innovative Analytic Approach

(Systematic Review technique)

Immersion--- crystallization framework

The identified research recommendations fell into 2 distinct, broad themes:

• ways in which research methodological approaches should be improved

• specific topic areas in need of future study

Shipman et al.

2008

To investigate what was understood by generalist end of life care and the current concerns and preferences for service research and development from the perspectives of clinicians, user groups, commissioners, academics and policy makers.

United Kingdom – London, East of England, Warwickshire and Scotland

210 participants including: health and social care practitioners; service commissioners; policy makers; academics; user and voluntary groups

National consultation and prioritisation exercise using a modified form of nominal group technique.

Semi-structured questionnaires administered by email and telephone/face = to-face interviews

Thematic analysis

Research priorities identified in generalist end of life care included:

• The need to improve service provision, including out of hours care

• Identification of a model of care to address the supportive and palliative care needs of non-cancer patients in the community

• Place of care and death and the associated costs and resources to be supported within national policies on care delivery

• Understanding of patients and carers’ experiences

Sullivan et al.

2018

To gain a consensus on the research priorities of palliative care clinicians and researchers with a view to establish a prioritised research agenda for adult palliative care in Australia

Australia

25, 14 and 13 panelists (experts in palliative care research and/or practice in Australia) in rounds 1, 2 and 3 respectively.

A modified three round Delphi survey using questionnaires administered online

Statistical analysis.

Research priorities which emerged from the three rounds were ranked in order to priority to the top ten listed as:

• To develop communication which facilitates patients’ and families’ understanding of transition from active treatment to palliative care

• To improve the communication of accurate information about prognosis to patients when diagnosed

• To improve palliative care for indigenous communities

• To establish palliative care models for those who wish to remain at home but have significant care needs outside of care provided routinely

• routine and formal identification and addressing of family caregivers’ support needs during the palliative care trajectory

• to investigate how the aged care sector can identify and provide for the potentially chronic end-of-life support to aged people with multiple comorbid conditions but without a clear diagnosis for palliative intervention

• to improve patients’ and families’ involvement in decisions regarding care in the last week of life

• to explore cross-cultural approaches to terminal illness, death and dying and how these can inform palliative care

• to assess the impact of the legislation on assisted dying on family decision-making and bereavement outcomes

• to improve bereavement care in rural, remote and aboriginal populations

  1. aMore detailed descriptions of priorities were included in the thematic synthesis