From: International palliative care research priorities: A systematic review
Authors | Year | Aim of Study | Geographical Location | Participants | Methodology | Data Analysis | Priorities Identified (summarya) |
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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 |