Prolonged grief: setting the research agenda.
Ontology highlight
ABSTRACT: Background
Prolonged grief disorder is proposed for the International Classification of Diseases (ICD-11), though it was rejected as a diagnosis for DSM-5.Objective
This review outlines findings and defines important areas for future research viewed from a lifespan perspective.Results
The development and psychometric evaluation of measures for the new diagnosis is paramount, specifically for children and adolescents. Treatments need to be adapted for specific subgroups and research findings have to be disseminated into various professional settings.
SUBMITTER: Rosner R
PROVIDER: S-EPMC4439410 | biostudies-literature | 2015
REPOSITORIES: biostudies-literature
Publications
Prolonged grief: setting the research agenda.
European journal of psychotraumatology 20150519
<h4>Background</h4>Prolonged grief disorder is proposed for the International Classification of Diseases (ICD-11), though it was rejected as a diagnosis for DSM-5.<h4>Objective</h4>This review outlines findings and defines important areas for future research viewed from a lifespan perspective.<h4>Results</h4>The development and psychometric evaluation of measures for the new diagnosis is paramount, specifically for children and adolescents. Treatments need to be adapted for specific subgroups an ...[more]
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Project description:BackgroundEmploying malaria operational research (MOR) findings in planning national malaria control programmes is gaining increased attention. The malaria control foci are diverse, resources are limited; therefore, agreeing on priority areas is critical. Hitherto, the process of prioritising MOR questions in Nigeria has been limited to few stakeholders. In support of the National Malaria Elimination Programme's (NMEP) effort at setting a MOR agenda, the Nigeria Field Epidemiology and Laboratory Training Programme (NFELTP) in collaboration with NMEP conducted preliminary exploratory study to identify key malaria research gaps and needs, and provide data to inform setting a robust national MOR agenda. The process of generating data is presented in this paper.MethodsA twelve-member task-team comprising NFELTP, university researchers and NMEP officers was commissioned. Following an inaugural meeting the task-team developed a framework of activities and held five planning meetings, conducted five-week online and self-administered paper-based surveys, key informant interview (KII), two-day desk review workshop, seven-day qualitative data analysis, ten-day result and five-day report writing workshops. Paired group members conducted the interviews across six geopolitical zones of Nigeria. Abridged study report was used for a two-day MOR setting agenda stakeholders' workshop.ResultsA structured framework, study protocol and data collection instruments were developed and submitted for ethical approval. The instruments included survey questionnaire for detailed information on researchers and other stakeholders' experience with MOR, the gaps and needs in thematic MOR areas; KII and Delphi guides. After an initial scoping review, primary data were collected from purposively selected survey participants using mixed methods: - online survey (n?=?100), self-administered paper-based survey (n?=?85), KII (n?=?40), desk review workshop (n?=?22) and Delphi interviews (n?=?8). Comprehensive lists of research gaps/bottlenecks and needs were generated for each thematic area in malaria control. These were used at a two-day national MOR setting stakeholder workshop (n?=?54) to guide the development of national MOR agenda document.ConclusionsA systematic approach involving broad stakeholder engagement provided data and evidence-based information for development of a robust national MOR agenda. The processes involved are recommended for use in malaria endemic settings.
| S-EPMC6004659 | biostudies-literature
Project description:Recent advances in genomic research have demonstrated a substantial role for genomic factors in predicting response to cancer therapies. Researchers in the fields of cancer pharmacogenomics and pharmacoepidemiology seek to understand why individuals respond differently to drug therapy, in terms of both adverse effects and treatment efficacy. To identify research priorities as well as the resources and infrastructure needed to advance these fields, the National Cancer Institute (NCI) sponsored a workshop titled "Cancer Pharmacogenomics: Setting a Research Agenda to Accelerate Translation" on July 21, 2009, in Bethesda, MD. In this commentary, we summarize and discuss five science-based recommendations and four infrastructure-based recommendations that were identified as a result of discussions held during this workshop. Key recommendations include 1) supporting the routine collection of germline and tumor biospecimens in NCI-sponsored clinical trials and in some observational and population-based studies; 2) incorporating pharmacogenomic markers into clinical trials; 3) addressing the ethical, legal, social, and biospecimen- and data-sharing implications of pharmacogenomic and pharmacoepidemiologic research; and 4) establishing partnerships across NCI, with other federal agencies, and with industry. Together, these recommendations will facilitate the discovery and validation of clinical, sociodemographic, lifestyle, and genomic markers related to cancer treatment response and adverse events, and they will improve both the speed and efficiency by which new pharmacogenomic and pharmacoepidemiologic information is translated into clinical practice.
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Project description:BACKGROUND:Methodological research into the design, conduct, analysis and reporting of trials is essential to optimise the process. UK specialists in the field have established a set of top priorities in aid of this research. These priorities, however, may not be reflected in the needs of similar research in low- to middle-income countries (LMICs) with different healthcare provision, resources and research infrastructure. The aim of the study was to identify the top priorities for methodological research in LMICs to inform further research and ultimately to improve clinical trials in these regions. METHODS:An online, two-round survey was conducted from December 2016 to April 2017 amongst researchers and methodologists working on trials in LMICs. The first round required participants to suggest between three and six topics which they felt were priorities for trial methodological research in LMICs. The second round invited participants to grade the importance of a compulsory list of topics suggested by four or more individuals, and an optional list of the remaining topics. FINDINGS:Rounds 1 and 2 were completed by 412 and 314 participants, respectively. A wide spread of years of experience, discipline, current country of residence, origin of trials training and area of involvement in trials was reported. The topics deemed most important for methodological research were: choosing appropriate outcomes to measure and training of research staff. CONCLUSION:By presenting these top priorities we have the foundations of a global health trials methodological research agenda which we hope will foster future research in specific areas in order to increase and improve trials in LMICs.
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Project description:BackgroundOver 40% of all deaths among children under 5 are neonatal deaths (0-28 days), and this proportion is increasing. In 2012, 2.9 million newborns died, with 99% occurring in low- and middle-income countries. Many of the countries with the highest neonatal mortality rates globally are currently or have recently been affected by complex humanitarian emergencies. Despite the global burden of neonatal morbidity and mortality and risks inherent in complex emergency situations, research investments are not commensurate to burden and little is known about the epidemiology or best practices for neonatal survival in these settings.MethodsWe used the Child Health and Nutrition Research Initiative (CHNRI) methodology to prioritize research questions on neonatal health in complex humanitarian emergencies. Experts evaluated 35 questions using four criteria (answerability, feasibility, relevance, equity) with three subcomponents per criterion. Using SAS 9.2, a research prioritization score (RPS) and average expert agreement score (AEA) were calculated for each question.ResultsTwenty-eight experts evaluated all 35 questions. RPS ranged from 0.846 to 0.679 and the AEA ranged from 0.667 to 0.411. The top ten research priorities covered a range of issues but generally fell into two categories- epidemiologic and programmatic components of neonatal health. The highest ranked question in this survey was "What strategies are effective in increasing demand for, and use of skilled attendance?"ConclusionsIn this study, a diverse group of experts used the CHRNI methodology to systematically identify and determine research priorities for neonatal health and survival in complex humanitarian emergencies. The priorities included the need to better understand the magnitude of the disease burden and interventions to improve neonatal health in complex humanitarian emergencies. The findings from this study will provide guidance to researchers and program implementers in neonatal and complex humanitarian fields to engage on the research priorities needed to save lives most at risk.
| S-EPMC4057580 | biostudies-literature
Project description:The death of a child is a devastating experience for most parents. Consequently, bereaved parents are at risk to develop physical and mental health problems, including prolonged grief disorder. Nevertheless, there is a lack of evaluated psychosocial interventions for bereaved parents. The primary aim of this study was to examine the feasibility of the My Grief app for bereaved parents. The secondary aim was to evaluate the potential reduction of symptoms of prolonged grief, depression and post-traumatic stress, and cognitive-behavioral processes proposed to prolong grief reactions. The study was a mixed-method open trial design, using pre- and post-intervention surveys and post-intervention interviews. Thirteen parents had access to the app for 4 weeks, eight parents participated in interviews and 10 parents answered the follow-up survey. The study provided evidence for the app's feasibility and acceptability, with participants reporting satisfaction with the app and stating that they would recommend it to parents in similar situations. According to the participants, the app was easy to use, the content gave a feeling of not being alone or weird in how one grieves, and the app gave a valuable overview of information, knowledge and further support. In addition, all parents expressed that an app like My Grief is needed and would be particularly useful to access early in the grieving process. Significant reductions of prolonged grief symptoms (d within = 0.86) and grief-related rumination (d within = 0.72), loss avoidance (d within = 0.95) and negative cognitions (d within = 1.36) from pre- to post-assessment were found. In conclusion, the app appears acceptable and feasible to use and will be evaluated in a larger randomized controlled trial (Trial registration number: NCT04552717, https://clinicaltrials.gov/ct2/show/NCT04552717).
| S-EPMC9082261 | biostudies-literature
Project description:BACKGROUND:Prolonged grief disorder (PGD) has emerged as a well-defined and relatively common mental disorder that will be included in the upcoming revision of the International Classification of Diseases. Recent trials with grief-specific, mostly cognitive behavioral interventions for patients with a clinically relevant diagnosis of PGD showed large effect sizes. However, a small trial suggested that non-specific behavioral activation might suffice to improve PGD. So, more evidence for the relative efficacy of grief-specific treatments is needed, as is more research on the predictors of treatment success. The purpose of the proposed trial is to evaluate a newly developed and successfully pilot-tested, prolonged grief-specific, integrative cognitive behavioral therapy (PG-CBT) compared to an active yet unspecific treatment, present-centered therapy (PCT). METHODS:In a multicenter, randomized controlled trial with 204 adults with a primary diagnosis of PGD, PG-CBT is compared to PCT, assuming the superiority of PG-CBT. Both treatments consist of 20 to 24 individual sessions, with an overall treatment length of about 6 months. The primary outcome, grief symptom severity, is assessed by blinded interviewers 12 months after randomization. Secondary outcomes are grief symptom severity at post treatment, in addition to self-reported overall mental health symptoms, depressive and somatoform symptoms at post treatment and 12 months post randomization. Possible moderators and mediators of treatment success are also explored. DISCUSSION:The trial is designed to avoid bias as much as possible (stratified randomization performed independently, blinded outcome assessment, intention-to-treat-analysis, balanced treatment dose, continuous supervision, control for allegiance effects) thereby enhancing internal validity. At the same time, some aspects of the trial will ensure clinical relevance (recruiting at outpatient clinics that are part of routine health care and keeping exclusion criteria to a minimum). Since the trial is powered adequately for the primary outcome, all secondary analyses including moderator analyses are exploratory by nature. The results will extend the knowledge on efficacious treatment of PGD and its predictors. TRIAL REGISTRATION:German Clinical Trials Register, ID: DRKS00012317 . Registered on 6 September 2017.
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Project description:BACKGROUND:Globally, there is renewed interest in and momentum for strengthening community health systems, as also emphasized by the recent Astana Declaration. Recent reviews have identified factors critical to successful community health worker (CHW) programs but pointed to significant evidence gaps. This review aims to propose a global research agenda to strengthen CHW programs. METHODS AND RESULTS:We conducted a search for extant systematic reviews on any intermediate factors affecting the effectiveness of CHW programs in February 2018. A total of 30 articles published after year 2000 were included. Data on research gaps were abstracted and summarized under headings based on predominant themes identified in the literature. Following this data gathering phase, two technical advisory groups comprised of experts in the field of community health-including policymakers, implementors, researchers, advocates and donors-were convened to discuss, validate, and prioritize the research gaps identified. Research gap areas that were identified in the literature and validated through expert consultation include selection and training of CHWs, community embeddedness, institutionalization of CHW programs (referrals, supervision, and supply chain), CHW needs including incentives and remuneration, governance and sustainability of CHW programs, performance and quality of care, and cost-effectiveness of CHW programs. Priority research questions included queries on effective policy, financing, governance, supervision and monitoring systems for CHWs and community health systems, implementation questions around the role of digital technologies, CHW preferences, and drivers of CHW motivation and retention over time. CONCLUSIONS:As international interest and investment in CHW programs and community health systems continue to grow, it becomes critical not only to analyze the evidence that exists, but also to clearly define research questions and collect additional evidence to ensure that CHW programs are effective, efficient, equity promoting, and evidence based. Generally, the literature places a strong emphasis on the need for higher quality, more robust research.
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Project description:The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other nonproviders routinely in the process of prioritizing, designing, and conducting research in hematopoietic cell transplantation (HCT). To address this need the National Marrow Donor Program/Be The Match engaged patients, caregivers, researchers, and other key stakeholders in a 2-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process we identified 6 major areas of interest: (1) patient, caregiver, and family education and support; (2) emotional, cognitive, and social health; (3) physical health and fatigue; (4) sexual health and relationships; (5) financial burden; and (6) models of survivorship care delivery. We then organized into multistakeholder working groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by working group, but all noted that a historical lack of consistency in measures use and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others were ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative and makes recommendations by working group on priority questions for PCOR in HCT.
| S-EPMC5993588 | biostudies-literature
Project description:Academic global health collaborations have the potential to improve joint understanding of health issues in low- and middle-income countries (LMICs). Our objective was to elucidate perceptions of benefits and challenges of academic global health collaborations as well as areas for improving collaborative research conducted in LMICs. This cross-sectional, mixed-methods study surveyed investigators' perceptions of benefits and challenges of pediatric academic global health collaborations. Authors of articles from four pediatric journals reporting pediatric research conducted in LMICs published between 2006 and 2015 were surveyed. Responses of LMIC investigators were compared with those of investigators in high-income countries (HICs). Responses to open-ended questions were analyzed using a combined thematic and content analysis approach. Of 1,420 potential respondents, 252 (17.7%) responded to the survey. Collaborative research with investigators from other countries was perceived as beneficial by 88.5% of respondents (n = 223), although this perception was more common among HIC respondents (n = 110, 94.0%) than LMIC respondents (n = 113, 83.7%) (p = 0.014). Sixty-seven percent (n = 170) of respondents perceived that HIC investigators had set the research agenda in work conducted in a LMIC. Respondents identified several critical factors to improve academic global health collaborations, including research capacity building, communication, and early involvement of LMIC investigators with shared decision-making during study conception and grant writing. Pediatric academic global health collaboration was widely perceived as positive. However, despite calls for capacity building and locally generated research ideas, many respondents felt that HIC investigators set the research agenda for work conducted in LMICs. This study provides suggestions for improving collaboration among pediatric academicians globally.
| S-EPMC7056414 | biostudies-literature
Project description:BackgroundFear of cancer recurrence (FCR) is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritize research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research.MethodsMembers of the International Psycho-oncology Society (IPOS) Fear of Cancer Recurrence Special Interest Group (FORwards) were invited to participate in an online Delphi study. Research domains identified in Round 1 were presented and discussed at a focus group (Round 2) to consolidate the domains and items prior to presentation in further survey rounds (Round 3) aimed at gaining consensus on research priorities of international significance.ResultsThirty four research items were identified in Round 1 and 33 of the items were consolidated into six overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2, and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further four research items were identified by panelists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panelists. Given the high levels of consensus and stability between rounds, no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panelists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions was the third highest priority identified.ConclusionThe findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment are based on a flexible approach based on symptom severity and can be delivered within routine clinical care were identified as research areas to prioritize. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need.
| S-EPMC7938308 | biostudies-literature