A Methodological Review of Mixed Methods Research in Palliative and End-of-Life Care (2014-2019).
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SUBMITTER: Fabregues S
PROVIDER: S-EPMC7312170 | biostudies-literature | 2020 May
REPOSITORIES: biostudies-literature
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A Methodological Review of Mixed Methods Research in Palliative and End-of-Life Care (2014-2019).
Fàbregues Sergi S Hong Quan Nha QN Escalante-Barrios Elsa Lucia EL Guetterman Timothy C TC Meneses Julio J Fetters Michael D MD
International journal of environmental research and public health 20200529 11
Mixed methods research has been increasingly recognized as a useful approach for describing and explaining complex issues in palliative care and end-of-life research. However, little is known about the use of this methodology in the field and the ways in which mixed methods studies have been reported. The purpose of this methodological review was to examine the characteristics, methodological features and reporting quality of mixed methods articles published in palliative care research. The auth ...[more]
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Project description:ObjectivesTo explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.DesignA rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.Data sourcesSix databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.Eligibility criteriaPrimary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018.ParticipantsPrisoners, prisoners' families, prison healthcare staff and other prison staff.Data extraction/synthesisData extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions.Quality appraisalTwo researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal.Results23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons.ConclusionsThe key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified.Prospero registration numberPROSPERO ID: CRD42019118737. Registered January 2019.
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Project description:BACKGROUND:Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. OBJECTIVE:To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. DESIGN:This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. SETTINGS:Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. MAIN OUTCOME MEASURES:Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. RESULTS:Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources. LIMITATIONS:Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias. CONCLUSIONS:Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision. These data will inform strategies to reduce these perceived barriers.
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Project description:BackgroundPalliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research.MethodsA mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis.ResultsParticipants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities.ConclusionsProfessionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.
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Project description:INTRODUCTION:In light of this growing palliative care and end of life care patient population, as well as new (expensive) drugs and treatments, quality research providing evidence for decision-making is required. However, common research guidance is lacking in this field, especially in respect to the methods applied in economic evaluations. Therefore, the aim of the planned systematic review is to identify and summarise relevant information on methodological challenges, potential solutions and recommendations for conducting economic evaluations of interventions in adult patients, irrespective of their underlying disease and gender in the palliative or end of life care settings, with no restrictions in regards to countries/geographical regions. The results of this systematic review may help to clarify the current methodological questions and form the basis of new, setting specific methods guidelines and support ongoing applied economic evaluations in the field. METHODS AND ANALYSIS:A systematic review will be conducted using Medline, Embase, Health Technology Assessment Database and NHS Economic Evaluation Database to identify the studies published from 1999 onwards with relevant information on methodological challenges, potential solutions and recommendations for conducting economic evaluations in the palliative or end of life care settings. Articles in English, German, Spanish, French or Dutch language will be considered. Two independent reviewers will conduct the screening of articles; any discrepancies will be resolved by discussion and involvement of a third reviewer. Predesigned data extraction forms will be applied, consequently narratively synthesised and categorised. Studies' methodological quality will be critically appraised. Besides existing economic guidelines and checklists for specific information on the palliative and end of life care sector will be searched. ETHICS AND DISSEMINATION:Ethical approval is not required, as this is a planned systematic review of published literature. An article will be disseminated in a related peer-reviewed journal, as well as presented at leading palliative care and health economic conferences. PROSPERO REGISTRATION NUMBER:CRD42020148160.
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Project description:IntroductionLittle consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.Materials and methodsA mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity.ResultsThere were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued.ConclusionRelationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.
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Project description:BackgroundFrameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies.AimTo summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to.DesignSystematic review.Data sourcesFour electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021.ResultsA total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor).ConclusionsWe examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline's single domain, while the rest two or more of eight guidelines in quality palliative care domains.
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Project description:The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.
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Project description:Methodologically sound mixed methods research can improve our understanding of health services by providing a more comprehensive picture of health services than either method can alone. This study describes the frequency of mixed methods in published health services research and compares the presence of methodological components indicative of rigorous approaches across mixed methods, qualitative, and quantitative articles.All empirical articles (n = 1,651) published between 2003 and 2007 from four top-ranked health services journals.All mixed methods articles (n = 47) and random samples of qualitative and quantitative articles were evaluated to identify reporting of key components indicating rigor for each method, based on accepted standards for evaluating the quality of research reports (e.g., use of p-values in quantitative reports, description of context in qualitative reports, and integration in mixed method reports). We used chi-square tests to evaluate differences between article types for each component.Mixed methods articles comprised 2.85 percent (n = 47) of empirical articles, quantitative articles 90.98 percent (n = 1,502), and qualitative articles 6.18 percent (n = 102). There was a statistically significant difference (?(2) (1) = 12.20, p = .0005, Cramer's V = 0.09, odds ratio = 1.49 [95% confidence interval = 1,27, 1.74]) in the proportion of quantitative methodological components present in mixed methods compared to quantitative papers (21.94 versus 47.07 percent, respectively) but no statistically significant difference (?(2) (1) = 0.02, p = .89, Cramer's V = 0.01) in the proportion of qualitative methodological components in mixed methods compared to qualitative papers (21.34 versus 25.47 percent, respectively).Few published health services research articles use mixed methods. The frequency of key methodological components is variable. Suggestions are provided to increase the transparency of mixed methods studies and the presence of key methodological components in published reports.
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Project description:BackgroundMixed methods designs are increasingly used in health care research to enrich findings. However, little is known about the frequency of use of this methodology in chiropractic research, or the quality of reporting among chiropractic studies using mixed methods.ObjectiveTo quantify the use and quality of mixed methods in chiropractic research, and explore the association of study characteristics (e.g., authorship, expertise, journal impact factor, country and year of publication) with reporting quality.MethodsWe will conduct a systematic search of MEDLINE, EMBASE, CINAHL, and the Index to Chiropractic Literature to identify all chiropractic mixed methods studies published from inception of each database to December 31, 2020. Articles reporting the use of both qualitative and quantitative methods, or mixed qualitative methods, will be included. Pairs of reviewers will perform article screening, data extraction, risk of bias with the Mixed Methods Appraisal Tool (MMAT), and appraisal of reporting quality using the Good Reporting of A Mixed Methods Study (GRAMMS) guideline. We will explore the correlation between GRAMMS and MMAT scores, and construct generalized estimating equations to explore factors associated with reporting quality.DiscussionThis will be the first methodological review to examine the reporting quality of published mixed methods studies involving chiropractic research. The results of our review will inform opportunities to improve reporting in chiropractic mixed methods studies. Our results will be disseminated in a peer-reviewed publication and presented publicly at conferences and as part of a doctoral thesis.
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