Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research.
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ABSTRACT:
SUBMITTER: Christensen V
PROVIDER: S-EPMC8427548 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundSince the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them.MethodsIn this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020.ResultsWe conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care.InterpretationThere are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users.Plain language summaryAlthough virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.
| S-EPMC8896530 | biostudies-literature
Project description:Adolescent cancer patients and their caregivers have demonstrated willingness to participate in invasive biological sampling, either for their own potential benefit or for research purposes. However, many malignancies occur primarily in prepubescent patients and there are no similar studies in this population. Our study objective was to assess the willingness of caregivers to consent to research studies involving invasive biological sampling in children ≤ 13 years of age. Participants completed a survey assessing their willingness to allow various procedures both with and without clinical benefit to their children. Most respondents were willing to allow additional blood draws regardless of potential benefit to their children (95.6% were willing when there would be benefits and 95.6% were willing when there would not). Although the overall willingness was lower with other hypothetical procedures, the majority of respondents were still willing to allow additional biopsies for research purposes. Caregivers of young children with cancer will allow their children to undergo additional invasive procedures for research purposes. This willingness decreased with more invasive procedures without potential direct benefit, but interest remained in more than half of participants. Caregivers for young patients with cancer should be approached for participation in future biological/correlative studies.
| S-EPMC9221797 | biostudies-literature
Project description:BackgroundChinese medicine (CM) modalities, including acupuncture and Chinese herbal medicine (CHM), are popular palliative interventions among patients with cancer, but further clinical research is required to assess their effectiveness and safety.ObjectiveTo prioritize top ten important CM clinical research questions from patients with cancer, cancer survivors and caregivers' perspectives via a face-to-face prioritization workshop in Hong Kong.MethodsA list of 25 CM clinical research questions for cancer palliative care, which were identified from existing systematic reviews (SRs) and overview of SRs, was presented to 17 participants (patients with cancer [n = 5], cancer survivors [n = 6] and caregivers [n = 6]). The participants were then invited to establish consensus on prioritizing top ten research questions.ResultsAmong the top ten priorities, five (50%) focused on acupuncture and related therapies, while five (50%) were on CHM. The three most important research priorities were (i) manual acupuncture plus opioids for relieving pain; (ii) CHM for improving quality of life among patients receiving chemotherapy; and (iii) concurrent use of CHM plus loperamide for reducing stomatitis.ConclusionThe top ten participant-endorsed CM clinical research priorities for cancer palliative care can guide local researchers on future direction. They can also inform local research funders on patient-centred allocation of limited funding. Under limited research funding, the most important co-prioritized research question from professional and patient perspectives may be addressed first.Patient or public contributionPatients with cancer, cancer survivors and caregivers participated in conduct of the study to prioritize CM clinical research questions.
| S-EPMC8369121 | biostudies-literature
Project description:ObjectivesShared decision making is essential to deprescribing unnecessary or harmful medications in older adults, yet patients' and caregivers' perspectives on medication value and how this affects their willingness to discontinue a medication are poorly understood. We sought to identify the most significant factors that impact the perceived value of a medication from the perspective of patients and caregivers.DesignQualitative study using focus groups conducted in September and October 2018.SettingParticipants from the Pepper Geriatric Research Registry (patients) and the Pitt+Me Registry (caregivers) maintained by the University of Pittsburgh.ParticipantsSix focus groups of community-dwelling adults aged 65 years or older, or their caregivers, prescribed five or more medications in the preceding 12 months.MeasurementsWe sought to identify (1) general views on medication value and what makes medication worth taking; (2) how specific features such as cost or side effects impact perceived value; and (3) reactions to clinical scenarios related to deprescribing.ResultsWe identified four themes. Perceived effectiveness was the primary factor that caused participants to consider a medication to be of high value. Participants considered a medication to be of low value if it adversely affected quality of life. Participants also cited cost when determining value, especially if it resulted in material sacrifices. Participants valued medications prescribed by providers with whom they had good relationships rather than valuing level of training. When presented with clinical scenarios, participants ably weighed these factors when determining the value of a medication and indicated whether they would adhere to a deprescribing recommendation.ConclusionWe identified that perceived effectiveness, adverse effects on quality of life, cost, and a strong relationship with the prescriber influenced patients' and caregivers' views on medication value. These findings will enable prescribers to engage older patients in shared decision making when deprescribing unnecessary medications and will allow health systems to incorporate patient-centered assessment of value into systems-based deprescribing interventions. J Am Geriatr Soc 68:746-753, 2020.
| S-EPMC7252489 | biostudies-literature
Project description:Accurate seizure forecasting is emerging as a near-term possibility due to recent advancements in machine learning and EEG technology improvements. Large-scale data curation and new data element collection through consumer wearables and digital health tools such as longitudinal seizure diary data has uncovered new possibilities for personalized algorithm development that may be used to predict the likelihood of future seizures. The Epilepsy Foundation recognized the unmet need for development in seizure forecasting following a 2016 survey where an overwhelming majority of respondents across all seizure types and frequencies reported that unpredictability of seizures had the strongest impact on their life while living with or caring for someone living with epilepsy. In early 2021, the Epilepsy Foundation conducted an updated survey among those living with epilepsies and/or their caregivers to better understand the use-cases that best suit the needs of our community as seizure forecast research advances. These results will provide researchers with insight into user-acceptance of using a forecasting tool and incorporation into their daily life. Ultimately, this input from people living with epilepsy and caregivers will provide timely feedback on what the community needs are and ensure researchers and companies first and foremost consider these needs in seizure forecasting tools/product development.
| S-EPMC8488220 | biostudies-literature
Project description:BackgroundAlthough the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities.MethodsIn the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes.ResultsThe majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship-oriented research and more studies regarding quality of life and mental health.ConclusionsThe results of the current study identified unmet needs in clinical care and patient-oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well-being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.
| S-EPMC6819209 | biostudies-literature
Project description:The importance of managing research data has been emphasized by the government, funding agencies, and scholarly communities. Increased access to research data increases the impact and efficiency of scientific activities and funding. Thus, many research institutions have established or plan to establish research data curation services as part of their Institutional Repositories (IRs). However, in order to design effective research data curation services in IRs, and to build active research data providers and user communities around those IRs, it is essential to study current data curation practices and provide rich descriptions of the sociotechnical factors and relationships shaping those practices. Based on 13 interviews with 15 IR staff members from 13 large research universities in the United States, this paper provides a rich, qualitative description of research data curation and use practices in IRs. In particular, the paper identifies data curation and use activities in IRs, as well as their structures, roles played, skills needed, contradictions and problems present, solutions sought, and workarounds applied. The paper can inform the development of best practice guides, infrastructure and service templates, as well as education in research data curation in Library and Information Science (LIS) schools.
| S-EPMC5354423 | biostudies-literature
Project description:This research study provides patient and caregiver perspectives as to whether or not to undergo adaptive deep brain stimulation (aDBS) research. A total of 51 interviews were conducted in a multi-site study including patients undergoing aDBS and their respective caregivers along with persons declining aDBS. Reasons highlighted for undergoing aDBS included hopes for symptom alleviation, declining quality of life, desirability of being in research, and altruism. The primary reasons for not undergoing aDBS issues were practical rather than specific to aDBS technology, although some persons highlighted a desire to not be the first to trial the new technology. These themes are discussed in the context of "push" factors wherein any form of surgical intervention is preferable to none and "pull" factors wherein opportunities to contribute to science combine with hopes and/or expectations for the alleviation of symptoms. We highlight the significance of study design in decision making. aDBS is an innovative technology and not a completely new technology. Many participants expressed value in being part of research as an important consideration. We suggest that there are important implications when comparing patient perspectives vs. theoretical perspectives on the choice for or against aDBS. Additionally, it will be important how we communicate with patients especially in reference to the complexity of study design. Ultimately, this study reveals that there are benefits and potential risks when choosing a research study that involves implantation of a medical device.
| S-EPMC8529029 | biostudies-literature
Project description:BackgroundThe ONCO-i2b2 platform is a bioinformatics tool designed to integrate clinical and research data and support translational research in oncology. It is implemented by the University of Pavia and the IRCCS Fondazione Maugeri hospital (FSM), and grounded on the software developed by the Informatics for Integrating Biology and the Bedside (i2b2) research center. I2b2 has delivered an open source suite based on a data warehouse, which is efficiently interrogated to find sets of interesting patients through a query tool interface.MethodsOnco-i2b2 integrates data coming from multiple sources and allows the users to jointly query them. I2b2 data are then stored in a data warehouse, where facts are hierarchically structured as ontologies. Onco-i2b2 gathers data from the FSM pathology unit (PU) database and from the hospital biobank and merges them with the clinical information from the hospital information system. Our main effort was to provide a robust integrated research environment, giving a particular emphasis to the integration process and facing different challenges, consecutively listed: biospecimen samples privacy and anonymization; synchronization of the biobank database with the i2b2 data warehouse through a series of Extract, Transform, Load (ETL) operations; development and integration of a Natural Language Processing (NLP) module, to retrieve coded information, such as SNOMED terms and malignant tumors (TNM) classifications, and clinical tests results from unstructured medical records. Furthermore, we have developed an internal SNOMED ontology rested on the NCBO BioPortal web services.ResultsOnco-i2b2 manages data of more than 6,500 patients with breast cancer diagnosis collected between 2001 and 2011 (over 390 of them have at least one biological sample in the cancer biobank), more than 47,000 visits and 96,000 observations over 960 medical concepts.ConclusionsOnco-i2b2 is a concrete example of how integrated Information and Communication Technology architecture can be implemented to support translational research. The next steps of our project will involve the extension of its capabilities by implementing new plug-in devoted to bioinformatics data analysis as well as a temporal query module.
| S-EPMC3303735 | biostudies-literature
Project description:Storytelling has long been considered an effective means of communication, allowing the teller to process their emotions in light of particular life challenges. Effects on the listener also have been demonstrated to be beneficial, especially if the listener is faced with a similar life challenge. Less is known regarding the potential effects of storytelling on listening dyads and opportunities for joint processing following exposure to relevant stories. We sought to study these phenomena in the context of hematopoietic cell transplantation (HCT), a demanding medical procedure requiring intensive informal caregiving and thus great patient-caregiver entwinement. The purpose of this qualitative descriptive study was to explore participants' perceptions of a 4-week web-based digital storytelling (DST) intervention using both quantitative ratings of acceptability and qualitative coding of interviews conducted after intervention completion. A total of 202 participants (101 HCT patient-caregiver dyads) were recruited from the Mayo Clinic Arizona and randomized into either a DST arm or an Information Control (IC) arm. Participants in the DST arm rated the acceptability of the intervention and were asked to participate in a 30-minute phone interview to discuss their experience with the DST intervention. All interviews were recorded and transcribed verbatim and imported into NVivo 12 for coding and analysis, using a combination of deductive and inductive approaches to organize the data, create categories, and develop themes and subthemes. A total of 38 participants (19 HCT patient-caregiver dyads) completed the post-intervention interviews. Patients were 63% male and 82% White, 68% received allogeneic HCT, and their mean age was 55 years. The median time from HCT was 25 days (range, 6 to 56 days). Caregivers were mostly patients' spouses (73%) and female (69%), with a mean age of 56 years. In general, the 4-week web-based DST intervention was well accepted and liked by both patients and caregivers regarding the duration, dyadic participation, and convenience of participating in the intervention at home. Patients and caregivers who completed the DST intervention indicated that they were satisfied with the intervention (mean score, 4.5 of 5), were likely to recommend it to others (mean score, 4.4), would watch more stories (mean score, 4.1), and that the experience was worth their time (mean score, 4.6). Major themes that emerged from the qualitative analysis included (1) building communal connection through engaging with the stories; (2) positive emotional growth after HCT; (3) value of gaining the other's perspective; and (4) impact of open communication on the patient-caregiver relationship. A web-based DST intervention provides an attractive format through which to deliver a nonpharmacologic psychosocial intervention to HCT patient-caregiver dyads. Watching the emotional content in digital stories may help patients and caregivers cope with psychoemotional challenges together and provide an opportunity for emotional disclosure. Further work on determining optimal paths to disclosure is warranted.
| S-EPMC10526713 | biostudies-literature