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| Citation number | Author(s); title of publication; journal | Study design; purpose | Region | Findings | Themes | Database |
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| [12] | Bray et al.; Pan-Canadian Framework for Palliative and End-of-Life Care Research | (i) Report
(ii) The purpose of this report was to develop a national framework to guide funders in end-of-life care research | Canada | (i) Need for research support surrounding evidence about improving advance care planning and community-based peer support programs and economic elements of delivering palliative care across different settings
(ii) More research into evidence that can improve training programs for healthcare professionals
(iii) More research into alternative medications for those who cannot handle standard treatment regimens and also caregiving, cultural, psychosocial, and existential aspects of death
(iv) More training for all healthcare providers to deal with palliative patients
(v) There is minimal research into evaluating the best training models for healthcare practitioners in palliative care
(vi) More interventions into making palliative care accessible for marginalized populations and those in hard to reach populations
(vii) There is a need to translate the information gathered in palliative care research into practical elements (practice and policy) and a need to standardize data | Research methodology, clinical, system access to care, and caregiving | Hand search |
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| [13] | Bolmsjo; End-of-Life Care for Old People: A Review of the Literature; American Journal of Hospice and Palliative Medicine | (i) Literature review
(ii) Purpose of this review was to highlight inventory elements of end-of-life care for older individuals and to illuminate gaps in knowledge | Sweden | (i) There is a need for more discussion of suffering in different cultures
(ii) More in depth research into palliative care, specifically empirical studies to assess who has access to palliative care
(iii) More studies needed on the oldest old defined as 80+
(iv) More research needed for family relationships in palliative care | Clinical, research methodology and caregiving | PubMed |
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| [14] | Hendricks; Factors Influencing Interruption in Hospice Home Care | (i) Quantitative
(ii) The purpose of this work was to analyze the decision-making process behind why patients leave and then return to hospice care, referred to as interruptions | The United States | (i) Interruption in hospice care is an under-researched area in hospice home care
(ii) There is a need for more qualitative inquiry into understanding these interruptions and also to evaluate the result of hospice interruptions to compare how one utilizes a home health aide in comparison with being alone | Research methodology | ProQuest Dissertation and Theses |
| [15] | Chuang et al.; “I Just Felt Like I Was Stuck in the Middle”: Physician Assistants’ Experiences Communicating with Terminally Ill Patients and Their Families in the Acute Care Setting; Journal of Pain and Symptom Management | (i) Qualitative
(ii) Purpose of this study was to explore the role physician assistants serve in communicating with terminally ill patients/families | United States | (i) Uncertainty in communicating with patients because of gaps in knowledge, skills, and education
(ii) Issues with structural deficits in the patient care system
(iii) Recommendations to target institutional structures, hospital systems, and roles and responsibilities | Clinical | PubMed |
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| [16] | Breen; The Effect of Caring on Post-Bereavement Outcome: Research Gaps and Practice Priorities; Progress in Palliative Care | (i) Opinion piece
(ii) The purpose of this paper was to address two important gaps in caregivers’ understanding and experiences of the anticipation/preparing for the death of whom they are caring for and the relationship between pre death and post death distress | Australia | (i) There are methodological limitations on what we know about caregiving such as the preparation of caregivers is normally assumed and not assessed directly, postdeath adjustment needs to be assessed differently from quantitative/short period of time, lack of adequate comparison groups in longitudinal studies, and issues in recruiting and retaining participants
(ii) Recommendations include more research into caregivers’ understanding of preparing for death and relationship between grief and distress before and after death | Research methodology and caregiving | CINAHL |
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| [17] | Nedjat-Haiem et al.; Advocacy at the End of Life: Meeting the Needs of Vulnerable Latino Patients; Social Work in Health Care | (i) Qualitative
(ii) Purpose was to explore healthcare providers’ experiences with advocacy in working with vulnerable Latinos | United States | (i) Gaps in patient care especially for Latino patients trying to access care within the public healthcare system
(ii) Providers looked to advocacy to improve patient care
(iii) Need for non-judgemental support, someone who will listen to them and put their needs above that of the organization
(iv) Need to present information in a culturally appropriate way | Clinical and system access to care | PubMed |
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| [18] | Higginson; Research Challenges in Palliative Care; BMJ Supportive and Palliative Care | (i) Editorial
(ii) The purpose of this paper was to discuss the state of palliative care and research challenges in the field | United Kingdom | (i) From the palliative and end-of-life care priority setting partnership study, they found that some priorities in palliative care are how to best provide care outside of working hours, crisis management, and the ability to help people stay in their place of choice and how to improve access to palliative care
(ii) More evidence is needed to support the practical elements of working in palliative care
(iii) In a paper by Gott et al. (2013), some challenges faced by staff are communicating palliative care needs | Clinical and research methodology | Hand search |
| [19] | Murray; Assessing and Addressing Research-Practice Gaps in Practitioners’ Provision of Decision Support for Terminally-Ill Patients Considering the Place of their End-of-Life Care | (i) Qualitative and quantitative
(ii) The purpose of this study was to address barriers to providing decision support for place of end-of-life care and to describe nurses’ perceptions on this topic and to evaluate an educational intervention designed to strengthen quality of practitioners’ decision support | United States | (i) One review highlighted gaps in the completeness, balance, and accuracy of information presented in the patient decision aids (PtDAs), which were evaluated (Feldman-Stewart et al., 2006)
(ii) Other evidence indicated gaps in nurses' awareness of patient decision-making needs
(iii) Participants stated gaps in their education and support systems limited their ability to meet patients’ decision-making needs, and they recommend interactive programs with the opportunity for skill development and practice to address this gap
(iv) Need for development of tools and processes in combination with provider training to mediate the gap between desired and actual decision making of patients
(v) Gaps in education and support systems limit the ability to meet patients’ decision-making
(vi) Targeted education and practical support by employers were identified as strategies to narrow the skills/confidence gap | System access to care and clinical | Ageline |
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| [20] | Unroe and Meier; Research Priorities in Geriatric Palliative Care: Policy Initiatives; Journal of Palliative Medicine | (i) Review paper
(ii) Purpose of this paper was to identify gaps in policy-relevant research and to highlight the disconnect in translating geriatric palliative care models/principles into practice | United States | (i) Targeting a population that will benefit from a given intervention
(ii) Expanded evidence base is needed to show the extent to which geriatric palliative care models can improve quality
(iii) Gaps in quality measures for the care of patients, for example, many have multiple conditions and do not fall easily into categories which focus on single diseases
(iv) Shortages of providers trained in caring for older patients with palliative care needs | Research methodology and clinical | PubMed |
| [21] | Hay et al.; Developing a Practice-Based Research Agenda for Grief and Bereavement Care; Death Studies | (i) Quantitative
(ii) The purpose of this study was to identify priorities for grief and bereavement research | Australia | (i) Gaps exist in understanding growth, resilience, and recovery during the grief process and destigmatizing grief and understanding grief in younger individuals such as children and adolescents and grief from a traumatic death
(ii) Gaps also exist in differentiating grief from other mental illnesses and also recognizing grief to set up the correct counselling services
(iii) Gaps exist in understanding end-of-life care grief on family caregivers and the impact caregiving has on grief
(iv) Practitioners expressed a desire for more research into end-of-life decision making and the relationship between advance care planning and advance directives and grief | Clinical and caregiving | Hand search |
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| [22] | Morrison; Health Care System Factors Affecting End-of-Life Care; Journal of Palliative Medicine | (i) Review paper
(ii) The purpose of this paper was to identify needs and gaps of patients and family members | United States | Our current reimbursement system fails to address many of the needs to address patients with serious and chronic illness | System access to care | PubMed |
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| [23] | Canadian Cancer Society; Right to Care: Palliative Care for All Canadians | (i) Report
(ii) The purpose of this report was to highlight major gaps in care and existing barriers in palliative care | Canada | (i) Gaps in location of death, use of acute care before death, and referrals to formal palliative care
(ii) Surveillance data on palliative care remain sparse and inconsistently collected, leaving gaps in our knowledge
(iii) Gaps are lack of common standards or frameworks, insufficient and inconsistent data collection, insufficient education for healthcare providers, lack of support for caregivers, inadequate investment in palliative care, and misunderstanding of palliative care
(iv) Recommendations include more support for caregivers and patients and families overall; making palliative care accessible to all; setting guidelines or a minimum standard such as bed numbers or healthcare professionals needed and better education for healthcare workers | System access to care, clinical, research methodology, and caregiving | Hand search |
| [24] | Walshe; Palliative Care Research: Has It Come of Age?; Palliative Medicine | (i) Editorial
(ii) The purpose of this editorial was to discuss how to overcome research challenges in palliative care | United Kingdom | (i) Some methodological challenges that exist in palliative care research are continuing implementation, active recruitment that is also precise, randomization, and economic evaluation that goes beyond looking at saving money
(ii) Researchers should refine and develop practice recommendations through critical adoption and feeding back experience | Research methodology | Hand search |
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| [25] | Ritchie and Zulman; Research Priorities in Geriatric Palliative Care: Multimorbidity; Journal of Palliative Medicine | (i) Review paper
(ii) The purpose of this paper was to highlight gaps in geriatric palliative care | United States | (i) One gap highlighted was the exclusion of older adults and multimorbid individuals from clinical trials
(ii) Another gap is what conditions count/can be excluded or included in a multimorbidity index and need for guidance regarding the illness burden that is generated by common combinations of conditions, interactions among those conditions, and more standardized approaches to multimorbidity assessment | Research methodology and system access to care | PubMed |
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| [26] | California Healthcare Foundation; Racial, Cultural and Ethnic Factors Affecting the Quality of End-of-Life Care in California: Findings and Recommendations | (i) Report
(ii) The purpose of this report was to examine end-of-life care delivery for Californians and to understand the impact of race, culture, and ethnicity on the provision of this care | United States | (i) Few studies have addressed situations for decision-making in sudden trajectory situations
(ii) There is also a need for cultural sensitivity and competence in end-of-life care | Clinical, caregiving, and system access to care | Hand search |
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| [27] | White and Coyne; Nurses’ Perceptions of Educational Gaps in Delivering End-of-Life Care; Oncology Nursing Forum | (i) Quantitative
(ii) The purpose of this study was to assess competencies viewed as most important in end-of-life care and to describe what is associated with these competencies | United States | (i) 25% of participants did not believe that they were prepared to care for dying patients
(ii) Nurses perceived a widening gap in quantity and quality of continuing education
(iii) Recommendations include to continually define and improve symptom management programs in nursing education | Clinical | PubMed |
| [28] | Hudson et al.; Psychological and Social Profile of Family Caregivers on Commencement of Palliative Care; Journal of Pain and Symptom Management | (i) Experimental
(ii) The purpose of this study was to analyze the psychological and social profile of palliative caregivers at the beginning of receiving palliative care services | United States | (i) Caregivers reported high levels of caregiver esteem
(ii) Close to half of participants reported an anxiety or depressive disorder
(iii) Preloss grief, anxiety, depression, and demoralization were found to be highly correlated with psychological distress
(iv) Need for a better understanding of prevalence of anxiety/depression in the caregiving population
(v) Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of preloss grief than caregivers without these disorders. Caregivers who were females, who lived with the patient, had poorer health, and who were caring for a spouse also reported higher levels of preloss grief compared with caregivers who were males, who were not living with the patient, had better health, and who were caring for a parent, respectively
(vi) Need for more research in demoralization among family caregivers and to explore the potential benefits of meaning-based therapeutic approaches
(vii) More research needed into better interventions | Clinical and caregiving | PubMed |
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| [29] | Garcia; Systematic Review of the Literature on Why There is Hospice Underutilization | (i) Systematic review
(ii) The purpose of this review was to focus on the under usage of hospice services and to highlight needs and gaps in palliative care | United States | (i) Research to practice gap
(ii) Lack of community education gives hospice poor reputation, and the definition of hospice care is poorly understood
(iii) Some recommendations include being able to organize healthcare delivery to create efficient, high-quality, and cost-effective care; understanding operational effectiveness and the quality of patient outcomes; and creating more partnerships between healthcare agencies such as a nursing home and hospitals in order to create care that is patient-centred | Clinical and caregiving | ProQuest Dissertations and Theses |
| [30] | Herr et al.; Assessing and Treating Pain in Hospices: Current State of Evidence-Based Practices; Journal of Pain and Symptom Management | (i) Experimental study
(ii) Purpose of this study was to report on provider evidence-based assessment and treatment practices for older adults with cancer in community-based hospital settings | United States | (i) Practice gaps in completing comprehensive assessment, reviewing pain treatment plan during reassessment, and monitoring side effects
(ii) Assessment tools needed for diverse cultural groups
(iii) Implications of not having a comprehensive assessment include incomplete records, missing important information, which could limit knowledge of other healthcare practitioners accessing files
(iv) Recommendations include strategies beyond education that are more intensive | Clinical | PubMed |
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| [31] | McEvenue; Palliative Care in Long-Term Care: A Multi-Methods Approach to Assessing Quality | (i) Qualitative
(ii) Purpose of this study was to define high quality hospice palliative care service delivery through the exploration of approaches taken to provide palliative care at Veterans Affairs Canada (VAC) facilities across Canada | Canada | (i) There is little research available relevant to defining a quality hospice palliative care program in the long-term care setting
(ii) Many also felt that, in comparison with physical needs, it was much more difficult to meet the emotional needs of residents, and that improvements in this area were still necessary. As well, meeting the emotional needs of the family was an ongoing challenge in the long-term care setting
(iii) Lack of support in family caregivers
(iv) Bereavement care for families was lacking at some locations used in the study and is a notable gap in services
(v) Recommendations include smaller patient groups to ensure practitioners can form a relationship with the patients; a wide range of training in minority cultures for spiritual providers; a support team available at all HPC teams and modifications to what is looked at when facilities review budgets such as resident accommodations | Research methodology, clinical, and caregiving | ProQuest Dissertations and Theses |
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| [32] | Byrne, Upton, and Townsend; Mind the Gap: A Step Forward in Supporting Hospice-Based Research; BMJ Supportive and Palliative Care | (i) Editorial, highlighting gaps and future steps for hospice-based research
(ii) Proposal of a toolkit to help guide organizations and define roles and responsibilities in terms of research studies | United Kingdom | (i) Applying research to care not just methodologically
(ii) A need to follow patients across settings and times
(iii) There is a gap in hospice organizations’ understanding of research practicalities and procedures | Research methodology | Hand search |
| [33] | Six Nations of the Grand River Territory; Translating Indigenous Knowledge into Palliative Care Policy and Practice: Dissemination Meeting Report | (i) Report
(ii) The purpose of this work was to identify needs in end-of-life care for First Nations communities in Canada | Canada | (i) Need to create formal agreements and understandings along with policy implementation
(ii) Implementing culturally safe and relevant training programs for healthcare providers | Clinical and system access to care | Hand search |
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| [34] | Holroyd-Leduc et al.; Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap; Canadian Journal on Aging | (i) Report
(ii) Purpose was to review current research and conduct dialogue and identify gaps | Canada | (i) Gaps include the challenges of identifying the population and support needed by caregivers who provide end-of-life care
(ii) Recommendations include using results from this meeting to inform future research in caregiver supports and policies to support caregivers | Caregiving and research methodology | PubMed |
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| [35] | Kelley et al; Leveraging the Health and Retirement Study to Advance Palliative Care Research; Journal of Palliative Medicine | (i) Quantitative
(ii) The purpose of this study was to describe how the health and retirement study could be used for improving palliative care research | United States | (i) There is no unifying definition for a target population for palliative care services
(ii) There is little focus on the needs and outcomes of family caregivers during palliative or end-of-life phases or on the care preferences of patients
(iii) There is a need to create and test the use of the Health and Retirement Study’s measures for examining quality of care for nursing home residents with serious illness
(iv) More communication training for providers and interventions to elicit patient preferences and healthcare systems design to record preferences and reconcile care plans and quality metrics with these stated goals
(v) Need to strengthen post death interviews
(vi) Lack of evidence on symptom burden and symptom management. Some recommendations to address this are to conduct research that focuses specifically on symptoms | Caregiving, research methodology, and clinical | Hand search |
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| [36] | Canadian Institute for Health Information; Health Care Use at the End of Life in Western Canada | (i) Report
(ii) The purpose of this report was to analyze statistics and data pertaining to healthcare service use during the end of life | Canada | (i) There is a lack of standardized key data elements on death certificates, hospital discharge abstracts, and provincial drug plans
(ii) There is a need for qualitative and quantitative studies centering around healthcare preferences, quality of care, and innovative models for delivering cost-effective end-of-life care and a need for studies of the appropriateness of dying in hospital, access to community-based supportive care resources, and the adequacy of symptom management at the end of life | Research methodology and system access to care | Hand search |
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