Social media for palliative and end-of-life care research: a systematic review.

BACKGROUND: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach. METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications. RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed. CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.

Advance care planning before and during COVID-19: evaluation of 73,675 patients' records.

BACKGROUND: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. AIM: To compare use of ACP before and during the COVID-19 pandemic. DESIGN & SETTING: Retrospective, observational cohort study, comparing the creation, use and content of Electronic Palliative Care Co-ordination System records in London. Individuals aged 18+ with a Coordinate My Care Record, created and published in the pre-pandemic period (01/01/2018-31/12/2019), Wave1 (W1) (20/03/2020-04/07/2020), and Wave2 (W2) (01/10/2020-05/03/2021). METHOD: Patient demographics and components of ACP were compared using descriptive and comparative statistics. RESULTS: 73,675 records were included; 35,108 pre-pandemic, 21,235 W1, 9,925 W2. Most records were created in primary care (56% pre-COVID, 76% in W1 and 48% in W2).Compared to the pre-pandemic period, the average weekly number of records created increased by 297% W1 (P<0.005) and 29.1% W2 (P<0.005). Patients with records created during the pandemic were younger (61% aged 80+ W1, 59% W2, 65% pre-pandemic (P<0.005)). Patients with records created in W1 had longer estimated prognoses at record creation (73% had an estimated prognosis of 1 year+ W1 vs 53% pre-pandemic (P<0.005)) and were more likely to be "For Resuscitation" (38% W1 vs 30% pre-pandemic (P<0.005)). CONCLUSION: During the COVID-19 pandemic, increased ACP activity was observed, especially in primary care, and for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care.

Examining how goals of care communication are conducted between doctors and patients with severe acute illness in hospital settings: A realist systematic review.

BACKGROUND: Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care planning within hospitals remains limited, particularly where mismatches in shared understanding between doctors and patients are present. AIM: To identify and critically examine factors influencing goals of care conversations between doctors and patients during acute hospital illness. DESIGN: Realist systematic review following the RAMESES standards. A protocol has been published in PROSPERO (CRD42021297410). The review utilised realist synthesis methodology, including a scoping literature search to generate initial theories, theory refinement through stakeholder consultation, and a systematic literature search to support program theory. DATA SOURCES: Data were collected from Medline, PubMed, Embase, CINAHL, PsychINFO, Scopus databases (1946 to 14 July 2023), citation tracking, and Google Scholar. Open-Grey was utilized to identify relevant grey literature. Studies were selected based on relevance and rigor to support theory development. RESULTS: Our analysis included 52 papers, supporting seven context-mechanism-output (CMO) hypotheses. Findings suggest that shared doctor-patient understanding relies on doctors being confident, competent, and personable to foster trusting relationships with patients. Low doctor confidence often leads to avoidance of discussions. Moreover, information provided to patients is often inconsistent, biased, procedure-focused, and lacks personalisation. Acute illness, medical jargon, poor health literacy, and high emotional states further hinder patient understanding. CONCLUSIONS: Goals of care conversations in hospitals are nuanced and often suboptimal. To improve patient experiences and outcome of care interventions should be personalised and tailored to individual needs, emphasizing effective communication and trusting relationships among patients, families, doctors, and healthcare teams. Inclusion of caregivers and acknowledgment at the service level are crucial for achieving desired outcomes. Implications for policy, research, and clinical practice, including further training and skills development for doctors, are discussed.

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities.

BACKGROUND: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. AIM: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. METHODS: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. RESULTS: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. CONCLUSIONS: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.

Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

BACKGROUND: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. AIM: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. DESIGN: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. SETTING/PARTICIPANTS: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. RESULTS: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. CONCLUSIONS: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.

Advance Care Planning and Place of Death During the COVID-19 Pandemic: A Retrospective Analysis of Routinely Collected Data.

Increased advance care planning was endorsed at the start of the Coronavirus disease 2019 (COVID-19) pandemic with the aim of optimizing end-of-life care. This retrospective observational cohort study explores the impact of advanced care planning on place of death. 21,962 records from patients who died during the first year of the pandemic and who had an Electronic Palliative Care Coordination System record were included. 11,913 (54%) had a documented place of death. Of these 5,339 died at home and 2,378 died in hospital. 9,971 (45%) had both a documented place of death and a preferred place of death. Of these, 7,668 (77%) died in their preferred location. Documented elements of advance care planning, such as resuscitation status and ceiling of treatment decisions, were associated with an increased likelihood of dying in the preferred location, as were the number of times the record was viewed. During the COVID-19 pandemic, advanced care planning and the use of digital care coordination systems presented an opportunity for patients and healthcare staff to personalize care and influence end-of-life experiences.

Enhancing equity and diversity in palliative care clinical practice, research and education.

Health disparities in palliative care are preventable consequences of structural discrimination and marginalization. The first step in addressing a problem is recognizing there is one and devotion to fully understanding its multifaceted nature. Palliative care clinicians, educators and researchers must prioritize investigating and mitigating the effects of racial, social, and intersectional injustice.

Public Opinions About Palliative and End-of-Life Care During the COVID-19 Pandemic: Twitter-Based Content Analysis.

BACKGROUND: Palliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC during the pandemic. Given that social media have the potential to collect real-time public opinions, an analysis of this evidence is vital to guide future policy-making. OBJECTIVE: This study aimed to use social media data to investigate real-time public opinions regarding PEoLC during the COVID-19 crisis and explore the impact of vaccination programs on public opinions about PEoLC. METHODS: This Twitter-based study explored tweets across 3 English-speaking countries: the United States, the United Kingdom, and Canada. From October 2020 to March 2021, a total of 7951 PEoLC-related tweets with geographic tags were retrieved and identified from a large-scale COVID-19 Twitter data set through the Twitter application programming interface. Topic modeling realized through a pointwise mutual information-based co-occurrence network and Louvain modularity was used to examine latent topics across the 3 countries and across 2 time periods (pre- and postvaccination program periods). RESULTS: Commonalities and regional differences among PEoLC topics in the United States, the United Kingdom, and Canada were identified specifically: cancer care and care facilities were of common interest to the public across the 3 countries during the pandemic; the public expressed positive attitudes toward the COVID-19 vaccine and highlighted the protection it affords to PEoLC professionals; and although Twitter users shared their personal experiences about PEoLC in the web-based community during the pandemic, this was more prominent in the United States and Canada. The implementation of the vaccination programs raised the profile of the vaccine discussion; however, this did not influence public opinions about PEoLC. CONCLUSIONS: Public opinions on Twitter reflected a need for enhanced PEoLC services during the COVID-19 pandemic. The insignificant impact of the vaccination program on public discussion on social media indicated that public concerns regarding PEoLC continued to persist even after the vaccination efforts. Insights gleaned from public opinions regarding PEoLC could provide some clues for policy makers on how to ensure high-quality PEoLC during public health emergencies. In this post-COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from web-based public discussion how to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media's potential in acting as an effective tool to reflect public opinions in the context of PEoLC.

A Core Outcome Set for Interventions to Prevent and/or Treat Delirium in Palliative Care.

CONTEXT: Delirium is a serious neurocognitive syndrome which is highly prevalent in people approaching the end of life. Existing trials of interventions to prevent or treat delirium in adults receiving palliative care report heterogeneous outcomes. OBJECTIVES: To undertake an international consensus process to develop a core outcome set for trials of interventions, designed to prevent and/or treat delirium, for adults receiving palliative care. METHODS: The core outcome set development process included a systematic review, qualitative interviews, modified Delphi method and virtual consensus meetings using nominal group technique (Registration http://www.comet-initiative.org/studies/details/796). Participants included family members, clinicians, and researchers with experience of delirium in palliative care. RESULTS: Forty outcomes were generated from the systematic review and interviews informing the Delphi Round one survey. The international Delphi panel comprised 92 participants including clinicians (n = 71, 77%), researchers (n = 13, 14%), and family members (n = 8, 9%). Delphi Round two was completed by 77 (84%) participants from Round one. Following the consensus meetings, four outcomes were selected for the core outcome set: 1) delirium occurrence (incidence and prevalence); 2) duration of delirium until resolution defined as either no further delirium in this episode of care or death; 3) overall delirium symptom profile (agitation, delusions or hallucinations, delirium symptoms and delirium severity); 4) distress due to delirium (person with delirium, and/or family and/or carers [including healthcare professionals]). CONCLUSION: Using a rigorous consensus process, we developed a core outcome set comprising four delirium-specific outcomes for inclusion in future trials of interventions to prevent and/or treat delirium in palliative care.

Researching minoritised communities in palliative care: An agenda for change.

BACKGROUND: Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and moral issues. Without the critical reflection of methods of study and reporting of findings, researchers may inadvertently compromise their contribution to reducing injustices and perpetuating racism. AIM: To examine key evidence of the place of minoritised communities in palliative care research to devise recommendations that improve the precision and rigour of research and reporting of findings. METHODS: Narrative review of articles identified from PubMed, CINAHL and Google Scholar for 10 years augmented with supplementary searches. RESULTS: We identified and appraised 109 relevant articles. Four main themes were identified (i) Lack of precision when working with a difference; (ii) 'black box epidemiology' and its presence in palliative care research; (iii) the inclusion of minoritised communities in palliative care research; and (iv) the potential to cause harm. All stymie opportunities to 'level up' health experiences and outcomes across the palliative care spectrum. CONCLUSIONS: Based on the findings of this review palliative care research must reflect on and justify the classification of minoritised communities, explore and understand intersectionality, optimise data quality, decolonise research teams and methods, and focus on reducing inequities to level up end-of-life care experiences and outcomes. Palliative care research must be forthright in explicitly indentifying instances of structural and systemic racism in palliative care research and engaging in non-judgemental debate on changes required.

Symptom clusters, associated factors and health-related quality of life in patients with chronic obstructive pulmonary disease: A structural equation modelling analysis.

AIMS AND OBJECTIVES: To identify symptom clusters and develop a symptom cluster model among people living with chronic obstructive pulmonary disease (COPD). BACKGROUND: The examination of symptom clusters in COPD patients is an emerging field of scientific inquiry directed towards symptom management. However, no studies have modelled the relationships among symptom clusters, associated factors and health-related quality of life. DESIGN: A cross-sectional design with convenience sampling following STROBE guidelines. METHODS: Data were collected from 450 COPD participants in three university teaching hospitals. Participants were invited to complete a structured questionnaire comprised of a socio-demographic/clinical questionnaire, Integrated Palliative Care Outcome Scale and Clinical Respiratory Questionnaire. Exploratory factor analysis and confirmatory factor analysis were used to identify symptom clusters. Structural equation modelling was used to examine the proposed model. RESULTS: The respiratory related symptom cluster, psychological symptom cluster and cough-insomnia related symptom cluster were identified. The final model demonstrated a good fit with the data. Gender, stage of disease and monthly income were significant factors associated with symptom clusters. Respiratory related and cough-insomnia related symptom clusters had a direct negative impact on health-related quality of life, while the psychological symptom cluster was found to have a direct and indirect negative effect on health-related quality of life. CONCLUSIONS: Final COPD symptom cluster model should serve as a framework to guide intervention research targeting symptom clusters to improve health-related quality of life of people living with COPD. RELEVANCE TO CLINICAL PRACTICE: Nurses should be especially attuned to identify those at most risk of facing a higher symptom burden in this case those who are female, have advanced stage COPD and/or lower income. During the clinical symptom assessment, nurses should pay attention to the close relationships among symptoms within a cluster to identify any 'trigger' symptom that could cause the development or exacerbation of other symptoms.

Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.

OBJECTIVES: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia. METHODS: MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. RESULTS: 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. CONCLUSION: Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.

"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

UK Palliative trainees Research Collaborative (UK-PRC): the first 5 years - 0-100 study sites.

OBJECTIVES: Palliative care research suffers from underfunding and a workforce spread across multiple settings leading to a lack of large-scale studies. To facilitate multisite research and audit we set up the UK Palliative trainees Research Collaborative (UKPRC), the first national trainee-led audit and research collaborative in palliative care. Here, we critically review the progress and potential of the UKPRC since its inception in 2016, identifying key challenges and facilitators. Members of the UKPRC steering committee collaborated to write this reflection, reviewing existing evidence regarding trainee-led research collaboratives. FINDINGS: The UKPRC has representation from 16/19 UK training regions. Projects are run by a core team; local collaborators collect data at each site. The collaborative is supported by academic leads and newly qualified consultants to develop a culture of continuous improvement in practice. We have conducted four national projects to date, including an audit covering 119 sites. Facilitators for our work include a focus on inclusivity and national representation; support from recently qualified consultants to ensure continuity; and taking a pragmatic approach, focusing initially on straightforward projects to build momentum. Challenges include the step from national audit to multisite, patient-facing research and maintaining continuity in a membership with high turnover. CONCLUSIONS: There is potential to change practice through large scale data collection via the trainee-led collaborative model. Collaboration is especially important in a small specialty with limited resources. The UKPRC has demonstrated 'proof of concept' and has the potential to support and sustain a culture where research can flourish within palliative care.

Synergistic Impact of the Symptom Cluster on Health-Related Quality of Life in Patients With Chronic Obstructive Pulmonary Disease: A Secondary Data Analysis.

This study aimed to quantify the synergistic impact of symptom clusters on health-related quality of life (HRQoL) among patients with chronic obstructive pulmonary disease (COPD). We conducted a secondary analysis of a cross-sectional data collected via convenience sampling from patients with COPD. Multiple linear regressions were used to quantify the relationships between symptom clusters and HRQoL. The sample included 106 COPD patients from whom three symptom clusters were identified comprising of dyspnea depression, anxiety-sleep, and depression-anxiety. Depression-anxiety (psychological symptom cluster) was significantly associated with poorer HRQoL (ß = 13.88, 95% CI [7.94, 19.82]), while no significant associations were detected with HRQoL for either depression or anxiety alone (ß = 6.66, 95% CI [-2.99, 16.31]; ß = 7.29, 95% CI [-0.78, 15.35]). Assessment and early intervention led by nurses targeting the psychological symptom cluster may represent an initial approach to improve HRQoL. Understanding the phenomenon of symptom clusters that are present in patients with COPD provides a breakthrough insight to devise strategies for their management.

Does ethnicity affect pain management for people with advanced disease? A mixed methods cross-national systematic review of 'very high' Human Development Index English-speaking countries.

BACKGROUND: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups. METHODS: Mixed methods systematic review. The primary outcome measure was differences in receiving pain medication between people from different racial and ethnic groups. Five electronic databases were searched. Two researchers independently assessed quality using JBI checklists, weighted evidence, and extracted data. The quantitative findings on the primary outcome measure were cross-tabulated, and a thematic analysis was undertaken on the mixed methods studies. Themes were formulated into a conceptual/thematic matrix. Patient representatives from UK ethnically diverse groups were consulted. PRISMA 2020 guidelines were followed. RESULTS: Eighteen papers were included in the primary outcome analysis. Three papers were rated 'High' weight of evidence, and 17/18 (94%) were based in the USA. Ten of the eighteen (56%) found no significant difference in the pain medication received between people of different ethnic groups. Forty-six papers were included in the mixed methods synthesis; 41/46 (89%) were based in the USA. Key themes: Patients from different ethnically diverse groups had concerns about tolerance, addiction and side effects. The evidence also showed: cultural and social doctor-patient communication issues; many patients with unmet pain management needs; differences in pain assessment by racial group, and two studies found racial and ethnic stereotyping. CONCLUSIONS: There was not enough high quality evidence to draw a conclusion on differences in receiving pain medication for people with advanced disease from different racial and ethnic groups. The mixed methods findings showed commonalities in fears about pain medication side effects, tolerance and addiction across diverse ethnic groups. However, these fears may have different foundations and are differently prioritised according to culture, faith, educational and social factors. There is a need to develop culturally competent pain management to address doctor-patient communication issues and patients' pain management concerns. TRIAL REGISTRATION: PROSPERO- CRD42020167890 .

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.

BACKGROUND: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. AIM: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. DESIGN: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). DATA SOURCES: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with 'QualSyst'. RESULTS: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members' concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. CONCLUSIONS: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders' perceptions to identify additional components and linkages between them within family-integrated advance care planning.

Chronic Obstructive Pulmonary Disease Symptom Cluster Composition, Associated Factors, and Methodologies: A Systematic Review.

This systematic review details symptom clusters, their compositions, and associated factors and appraises the methodologies of studies that reported symptom clusters in patients with chronic obstructive pulmonary disease (COPD). Ten studies were eligible for inclusion in this study. Four common symptom clusters were identified. Two theoretical frameworks, four statistical methods, and various symptom assessment tools were used to identify symptom clusters. Factors associated with symptom clusters included demographic, clinical, and biological factors. No studies examined the subjective experiences of symptom clusters. Overall, inconsistencies were identified in the composition of symptom clusters across studies. This may be due to variations in study design, assessment tools, and statistical methods. Future studies should attempt to arrive at a common definition, especially that is theoretically derived, for symptom clusters, standardize the criteria for symptoms for inclusion in the clusters, and focus on patients' subjective experience to inform which clusters are clinically relevant.