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Prioritisation of end-of-life care within Joint Health and Wellbeing Strategies. A total of 150 Joint Health and Wellbeing Strategies were identified, covering all 152 Health and Wellbeing Boards in England. Of these, 72 (48.0%) contained no mention of any end-of-life care key terms. Of the 78 strategies that mentioned end-of-life care, 39 (50.0%) included no information on local needs, aims or planned interventions. Six strategies (4.0% total) included end-of-life care as a priority area.
Source publication
Background:
Prioritisation of end-of-life care by policymakers has been the subject of extensive rhetoric, but little scrutiny. In England, responsibility for improving health and care lies with 152 regional Health and Wellbeing Boards.
Aim:
To understand the extent to which Health and Wellbeing Boards have identified and prioritised end-of-life...
Context in source publication
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Citations
... Though some studies suggest PC is not a priority for policymakers, 33 the Observatory's users suggest the need to be more mindful of the importance of engaging them, mainly through the update of regional atlases and greater use of social networks. An additional effort in the line of policy briefings and dissemination could be desirable; not in vain, policymakers have a crucial starting point for planning and implementing services at a national level. ...
Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used. Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities. Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied. Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out. Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.
... As Ranse et al. (2012) suggested, the inductive process began by reading each review twice, manually coded using an Excel file (Nowell et al., 2017). According to Sleeman et al. (2018), although qualitative analytic software programs are helpful, they are not perfect. Such software can help researchers group data into similar themes, but they may not reflect researchers' impressions of data. ...
Purpose
This study aimed to investigate the lesbian, gay, bisexual, transgender and queer (LGBTQ) hotel selection criteria.
Design/methodology/approach
A thematic analysis was performed to explore 104 LGBTQ traveler comments based on TripAdvisor's top five LGBTQ hotels in Thailand.
Findings
The results indicated that tangible and intangible hotel attributes influence the LGBTQ community's hotel selection.
Practical implications
The results emphasize the need for hoteliers to understand the diversity of the LGBTQ community's hotel selection criteria and adjust or adopt different marketing strategies to engage and attract LGBTQ travelers.
Originality/value
This study contributes to the tourism literature by showing the importance of recognizing the LGBTQ community's hotel selection criteria and providing recommendations to improve product quality and services of hotels.
... ICSs became statutory organisations in July 2022. While there are good reasons for ICSs to include palliative and end of life care in their strategies, previous research has found that palliative care is infrequently a policy priority 4,12 . ...
... ICSs became statutory organisations in July 2022. While there are good reasons for ICSs to include palliative and end of life care in their strategies, previous research has found that palliative care is infrequently a policy priority 4,12 . See introduction, page 2, paragraph 3 ...
Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.
Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.
Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.
Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.
... CCGs with operational EPaCCS or systems in planning should consider collecting indicators that can inform the success (or otherwise) of its implementation that are sensitive to local context and population needs. This would address prior deficits identified across local authority policymaking for palliative care, where there has been a lack of alignment between specific populations, their needs, and interventions used [27]. Furthermore, the development of measures for monitoring EPaCCS and similar technology-mediated approaches to care coordination should consider equity. ...
OBJECTIVE: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation.
METHODS: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS.
RESULTS: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals’ limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences.
CONCLUSIONS: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery.
... The key terms were palliat*, end of* (to capture 'end of life' and 'end of their lives'), terminal, hospice, bereave*, death, die, and dying, EoL and 'of life' (to capture 'last days/months/ years of life'). The key terms were based on those used in previous studies 4, 12 . Where key terms were identified, they were highlighted in the text, and the relevant section of the strategy document was printed to form a resource folder from which familiarisation of data occurred. ...
Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.
Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.
Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.
Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.
... Palliative care has been highlighted as one of the top national priorities by governments worldwide (Sleeman, Leniz, Higginson, & Bristowe, 2018). It has been mentioned as one of the U.S.'s six national priorities (National Priorities Partnership, 2008). ...
... Several actions that policymakers can undertake to facilitate PC programme provision include developing policies, guidelines, and strategies for implementing decision-making processes that support PC services provision (Connor & Sepulveda Bermedo, 2014). Introducing PC within a country's HCS requires not only prioritisation by policymakers, but also policies plans/strategies and guidelines for measuring and supporting the progress and effectiveness provision of PC across settings (National consensus project for quality palliative care, 2018; Sleeman et al., 2018). ...
... Despite the increasing recognition of PC's role, policymakers' priorities to support PC are still unclear and have sometimes engendered controversy (Sleeman et al., 2018). ...
ABSTRACT
Background
Due to a transitional demographic change in population growth globally and an increase in life expectancy, the need for palliative care (PC) has increased, and this approach is urgently required for adoption and integration into healthcare systems (HCSs). The integration of PC services into mainstream HCSs and national policies has been identified as a core foundation for PC development. Despite the significant benefits of PC and the successful introduction of PC services in many countries worldwide, there is so much more to be done in low- and middle-income countries (LMICs), where these services are still largely inaccessible or unavailable. There are no PC services provided in Palestine - a country that experiences a significant increase in cancer diagnosis, population density, economic and financial shortages, drug shortages, and fragmented HCS. The unavailability of PC services in most LMICs, including Palestine, seems incongruous and unacceptable, given the importance of PC services. The unavailability of PC services is attributed to multiple challenges that continue to create obstacles to their availability and development. Considering that other countries have successfully developed PC for their HCS, there are lessons to be learned from them on how to integrate PC services into an existing HCS. Palestine may follow the innovations pioneered in other countries that have successfully integrated PC into their HCS. No research studies have been done focusing on the development of PC. It is apparent that high-level documents from governments or large organisations focus on the implementation and evaluation of PC strategies and models.
Aim and objectives
The objective of this doctoral research thesis is to explore the factors and needs associated with the development of a PC programme in the Palestinian HCS from different key stakeholders’ perceptions. Based on the WHO Public Health PC Model and the socioecological, this doctoral thesis is accomplished through three separate specific studies. Study One aimed to identify the unmet service needs of patients with advanced cancer, with the following five objectives: 1) to determine the prevalence of unmet supportive care needs of patients with advanced cancer; 2) to determine the level of emotional/psychological distress, pain, and other symptoms of patients with advanced cancer; 3) to assess the quality of life (QOL) and spiritual well-being of patients with advanced cancer; 4) to assess the sociodemographic and clinical variables that influence unmet needs; and 5) to examine the association between unmet needs and pain, symptoms, QOL, and the spiritual well-being of patients with advanced cancer.
Study Two aimed to assess PC knowledge, attitude, educational needs and HCS-related issues from the perspective of physicians and nurses, with the following six objectives: 1) to assess the physicians’ and nurses’ knowledge of PC; 2) to explore physicians’ and nurses’ attitudes about end-of-life-care and care of the dying; 3) to assess the needs for PC educational programmes from the perspective of physicians and nurses; 4) to ascertain how far PC services are available in hospitals from physicians’ and nurses’ perspectives; 5) to identify the key barriers to the provision of PC into the HCS from the perspective of physicians and nurses, and 6) to determine the factors that influence their knowledge and attitudes toward PC and care of the dying.
Study Three aimed to explore the perspectives of decision- and policy-makers on the provision of PC services, with the following five objectives: 1) to understand the extent to which PC has been identified as a priority from policymakers' perspectives; 2) to discuss with policymakers existing and new policies (strategies, plans, resources) that support the integration of PC into the structure of national HCSs; 3) to explore policymakers’ perspectives about policies/work being done regarding strengthening human resources, such as training and education; 4) to identify which essential medicines for pain and symptom management are available in the HCS, their cost, and prescribing related-issues from policymakers' point of view; and 5) to identify the challenges and facilitators to the provision of PC from policymakers' perspective. The findings of these three studies will serve as a point for a discussion on how to move forward in the provision of a PC programme into the HCS of LMICs (Palestine).
Methods
A multi-method research design was employed in this doctoral research study to fulfil the overall study aim through three specific studies. The first two studies adopted a quantitative approach (survey), while the third study adopted a qualitative approach (interviews). In Study One, a hospital-based cross-sectional quantitative design was applied on a convenience sample of 379 patients aged 18 or above who had been diagnosed with advanced-stage cancer. Participants were recruited from two hospitals in the Gaza Strip (Al- Shifa Hospital and the European Gaza Hospital), which provide cancer care services to adult patients. A modified Supportive Care Framework for Cancer Care (SCNF) was adopted to guide the study's design and the selection of the outcome variables. The unmet needs of patients were assessed using the Arabic version of the short form of the Supportive Care Needs Survey (SCNS-SF34). Other instruments were utilised to examine their distress [The Arabic version of the Distress Thermometer (DT)], anxiety and depression [The Arabic version of the Hospital Anxiety and Depression Scale (HADS)], physical symptoms [The Arabic Questionnaire for Symptom Assessment (AQSA)], QOL [The Arabic version of the Functional Assessment of Cancer Therapy (FACT-G)], and spirituality [The Arabic version of the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale (FACIT-Sp)].
In Study Two, a cross-sectional quantitative study design was also applied on a convenience sample of 169 professionals working in medical and oncology departments at one of the abovementioned two hospitals, where cancer patients are more likely to be treated, and follow-up care is provided. The Palliative Care Knowledge Test (PCKT), Bradley attitude questionnaire of end-of-life care, Frommelt Attitudes Towards Care of the Dying (FATCOD Form B), and PC Needs Assessment instrument were utilised for data collection. The WHO steps (forward translation, expert panel Back-translation, pre-testing, and final version) were adopted to translate and adapt all study instruments into Arabic-the mother tongue of study participants. Overall, all instruments' item-level content validity index and scale-level content validity index showed a high content validity. The Cronbach’s α coefficient for all instruments was also acceptable.
In Study Three, a descriptive, exploratory qualitative design was employed on a purposive sample of 12 decision and policymakers. Participants were identified as having a policy-making role in the HCS and were responsible for making executive and legislative decisions about matters related to services (including PC). These policymakers had prior experience, either clinical and/or managerial positions in health services developments. Face-to-face, semi-structured interviews were employed to collect the data.
The Statistical Package for the Social Science (SPSS) software version 25 was used to enter and analyse data of the first two studies. Missing data were replaced with multiple imputations. Descriptive statistics were utilized to summarise the personal characteristics of the participants as well as all instruments and their domains. A generalised linear regression analysis was employed to test the relationship between the variables. All statistical tests were two-tailed, and p values of less than 0.05 were treated as significant. A qualitative content analysis approach was adopted for analysis of the interview data of Study Three.
Results
Of the 379 advanced cancer patients recruited in Study One, 96.8% stated they had at least one ‘moderate to high’ level of unmet service needs. The most frequent unmet needs were those in the physical aspects of daily living (Mean 58.94; SD ± 20.93) and psychological (Mean 58.84; SD ± 19.49) domains. Most of the patients (91%) were physically ill and reported experiencing physical symptoms. About 86.3% had a high level of distress. Almost 90% reported signs of depression and anxiety. Although they felt that their spiritual well-being was good, their QOL was poor. Regression analyses identified that educational level, age, gender, marital status, cancer stage, cancer type, physical symptoms, depression, anxiety, distress, QOL, and spirituality were independently associated with unmet service needs.
A total of 169 healthcare professionals (137 nurses and 32 physicians) participated in Study Two. Professionals had insufficient knowledge of PC (Mean 42.8; SD±11.02), but had positive attitudes towards end-of-life-care (Mean 3.32; SD±0.38). Nurses had significantly higher scores on attitudes towards the care of dying than physicians (t= -4.980, p <0.001). A total of 75.1% of professionals would like to learn more about PC. Patients'/families’ avoidance of discussing issues around dying and a lack of training for staff related to PC were the two significant barriers in providing PC. Educational level and previous training were found to be associated significantly with knowledge and attitudes towards PC.
For Study Three, 12 decision and policymakers participated in the semi-structured interviews. The participants' ages ranged from 35 to 57 years. Most had more than 20 years of experience at the Ministry of Health. Four primary categories were identified from the interviews: 1) nature of current PC healthcare services; 2) potential benefits of PC; 3) challenges to PC provision; and 4) considerations for PC integration into the HCS. Each category had two or more subcategories. The current PC healthcare services provided to Palestinian patients with life-threatening illnesses and their families are not comprehensive and limited to symptomatic management. There is a Palestinian national strategic plan for developing PC; however, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Education and training-related challenges were frequent challenges in the GS, followed by funding allocation and medication availability.
Conclusion
Palestinian advanced cancer patients exhibited a significantly high prevalence of unmet needs. Increasing unmet needs have contributed negatively to patients' physical and psychological well-being, and QOL. The high prevalence supports the argument that there is a need to develop a PC programme within the HCS, which would likely help enhance the care provided in the future. High unmet supportive care needs are attributed to insufficient PC knowledge and training of HCPs. Integration of formal and informal education on PC within care services and health curricula is a priority. Educational and training programmes should be comprehensive, covering PC's basic and advanced principles. The findings also help policymakers to build and implement the PC programme in the Palestinian HCS. Although PC is clearly stated in the Palestinian national strategic plan, the goals of development are not clearly defined in the plan, and capabilities to implement the plan are inadequate. Developing policies and plan to align with national laws could help enhance health services for patients and their families and resolve several challenges. Integration of PC into Palestinian universities’ educational curricula as an obligatory course and establishing advanced degree programmes in PC to overcome the shortage of PC specialists is required. The Palestinian government should collaborate with national and international partners to overcome the challenges of PC provision and implement PC into the Palestinian HCS.
... 'Place of death' is extensively used in quality assessment in end-of-life care policies in the UK and internationally [6,7], and in end-of-life care research. [8][9][10] The metric organizes where patients die into residential and institutional categories (typically acute hospital, care home, own home, hospice and other places), with 'better' quality commonly associated with death in non-hospital settings. ...
Background
How quality in healthcare is measured shapes care provision, including how and what care is delivered. In end-of-life care, appropriate measurement can facilitate effective care and research, and when used in policy, highlight deficits and developments in provision and endorse the discipline necessity. The most prevalent end-of-life quality metric, place of death, is not a quality measure: it gives no indication of the quality of care or patient experience in the place of death.
Aim
To evaluate alternative measures to place of death for assessing quality of care in end-of-life provision in all settings.
Method
We examine current end-of-life care quality measures for use as metrics for quality in end-of-life care. We categorise approaches to measurement as either: clinical instruments, mortality follow-back surveys or organisational data. We review each category using four criteria: care setting, patient population, measure feasibility, care quality.
Results
While many of the measure types were highly developed for their specific use, each had limitations for measuring quality of care for a population. Measures were deficient because they lacked potential for reporting end-of-life care for patients not in receipt of specialist palliative care, were reliant on patient-proxy accounts, or were not feasible across all care settings.
Conclusion
None of the current end-of-life care metric categories can currently be feasibly used to compare the quality of end-of-life care provision for all patients in all care settings. We recommend the development of a bespoke measure or judicious selection and combination of existing measures for reviewing end-of-life care quality.
... Palliative care (PC) has been highlighted as a top national priority by governments worldwide [1]. It is ranked as the top policy priority in low-and middle-income countries (LMICs) [2]. ...
... Notwithstanding the increasing recognition of the role played by PC services, the priorities of policymakers in supporting PC are still unclear and have sometimes engendered controversy [1]. Policymakers can undertake several actions to facilitate the the provision of PC programmes, including developing policies, guidelines, and strategies for implementing decision-making processes that support the provision of PC services [5]. ...
... Policymakers can undertake several actions to facilitate the the provision of PC programmes, including developing policies, guidelines, and strategies for implementing decision-making processes that support the provision of PC services [5]. Introducing PC within a country's HCS requires prioritization by policymakers; policies, plans/strategies and guidelines for measuring and supporting progress in PC; and effectiveness in provisioning across settings [1,10]. ...
Background
Despite increasing recognition of the role played by palliative care (PC) services, the priorities of policymakers in supporting PC remain unclear and have sometimes engendered controversy. There are few studies exploring policymakers’ perspectives towards PC services, with most shedding light on obstacles to PC development. Furthermore, no study has explored policymakers’ perspectives towards providing PC at the national level in resource-limited countries. This study provides a platform for providing PC as part of the Palestinian healthcare system (HCS) by exploring policymakers’ perspectives on PC, an essential step to developing a PC programme.
Methods
A descriptive qualitative study design was employed using semi-structured interviews. Participants were those identified as responsible for making executive and legislative decisions about health services (including PC) in the HCS. Data were analysed using qualitative content analysis.
Results
Twelve decision and policymakers participated in the study. Four categories were generated from the content analysis: (1) the nature of current PC healthcare services, (2) the potential benefits of PC, (3) challenges to providing PC, and (4) considerations in providing PC. The current PC services provided to Palestinian patients with life-limiting illnesses and their families are not comprehensive, and are limited to symptom management. There is a Palestinian national strategic plan for developing PC; however, the development goals are not clearly defined, and the plan’s capabilities are inadequate. Several challenges to the provision of PC were found to relate to issues of education and training, the allocation of funding, and the availability of medications.
Conclusions
Integrating PC into the Palestinian university curricula as a compulsory course and establishing higher degree programmes in PC to overcome the shortage of PC specialists is required. Developing policies aligned with national laws could help enhance health services to patients and their families and resolve several challenges. Cooperating with national and international institutions in seeking funding could boost PC development and medication availability.
... A study of the strategies of 152 health and wellbeing boards in England identified 150 strategies, and endoflife care was mentioned in only 78 (52%) and prioritised in only six (4%). 157 As the study observed, prioritisation of endof life care has been the subject of extensive rhetoric, but the implementation falls very short. ...
... The most noteworthy feature of QDA is a systematic and replicable technique which enables researchers to rigorously and systematically analyze the text of policy documents. It also an approach commonly used in other policy analyses [14]. Like other qualitative methods in research, qualitative document analysis requires that data be examined and interpreted in order to gain elicit meaning, develop comprehensive understanding for the intention of policy makers and to verify the assumptions made before [15][16][17]. ...
Background: Multiple countries' experiences have illustrated that integrated care is an ideal choice regarding improving the quality of health care. In China, the central government has enacted a large number of policies to promote the development of integrated care in recent years. Yet, no existing research has examined how these policies to support the development of integrated care. In this paper we seek to address that gap.
Methods: Document content analysis method was used in this paper. Data were collected by carrying out a review of integrated care policies (N=21) published from January 2015 to December 2020. The policy documents of integrated care issued by central governments are retrieved through the Internet. IHSDNSs (Integrated Health Service Delivery Networks)’s essential attributes framework was used to guide data analysis.
Results: The most commonly referenced principal domains of integrated care in China were model of care, there were 45 references to the organization and management, financial allocation and incentives was the least often referenced source of information. The main purpose of reference to information was to support the reform of integrated care decision-making.
Conclusions: A whole range of policies on integrated care were issued in a relatively short time. These policies propose a macro conceptual and operational framework for the development of integrated care. The development of integrated care has been mainly driven by the policy stimulus in China. However, the concrete measures still need clear negotiation and management by the local municipalities. Future policy should improve complementary policies such as financial allocation and financial incentive policy.
