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Listening to patients with cancer: using a literary-based research method to understand patient-focused care.

ABSTRACT: OBJECTIVE:In spite of considerable attention, patients diagnosed with cancer continue to report poor experiences of care. The root causes of this remain unclear. This exploratory study aimed to investigate new ways of understanding the experience of patients with cancer, using a literary-based research approach. DESIGN:Interviews were undertaken with four patients diagnosed with high-grade brain cancers at least 6?months from diagnosis and with people (n=5) identified by the patients as important in their care pathway. Interview transcripts were analysed by humanities academics as pieces of literature, where each patient's story was told from more than one person's perspective. The academics then came together in a facilitated workshop to agree major themes within the patient experiences. The themes were presented at a patient and carer event involving 70 participants to test the validity of the insights. RESULTS:Insights into the key issues for patients with cancer could be grouped into six themes: accountability; identity; life context; time; language; rigour and emotion. Patients often held a different perspective to the traditionally held medical views of what constitutes good care. For example, patients did not see any conflict between a doctor having scientific rigour and portraying emotion. CONCLUSIONS:One key feature of the approach was its comparative nature: patients often held different views from those traditionally held by physicians of what constitutes health and good outcomes. This revealed aspects that may be considered by healthcare professionals when designing improvements. Proposals for further testing are discussed, with a particular emphasis on the need for sensitivity to individual differences in experiences.

SUBMITTER: Begley A

PROVIDER: S-EPMC4202015 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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Listening to patients with cancer: using a literary-based research method to understand patient-focused care.

Begley Amanda A Pritchard-Jones Kathy K Biriotti Maurice M Kydd Anna A Burdsey Tim T Townsley Emma E

BMJ open 20141016 10

<h4>Objective</h4>In spite of considerable attention, patients diagnosed with cancer continue to report poor experiences of care. The root causes of this remain unclear. This exploratory study aimed to investigate new ways of understanding the experience of patients with cancer, using a literary-based research approach.<h4>Design</h4>Interviews were undertaken with four patients diagnosed with high-grade brain cancers at least 6 months from diagnosis and with people (n=5) identified by the patie ...[more]

PMID: 25324319

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Project description:IntroductionSocial media listening (SML) is an approach to assess patient experience in different indications. This is the first study to report the results of using SML to understand patients' experiences of living with dry eye disease (DED).MethodsPublicly available, English-language social media content between December 2016 and August 2017 was searched employing pre-defined criteria using Social Studio®, an online aggregator-tool for posts from social media channels. Using natural language processing (NLP), posts were indexed using patient lexicon and disease-related keywords to derive a set of patient posts. NLP was used to identify relevance, followed by further manual evaluation and analysis to generate patient insights.ResultsIn all, 2279 possible patient records were identified following NLP, which were filtered for relevance to disease area by analysts, resulting in a total of 1192 posts which formed the basis of this study. Of these, 77% (n = 915) were from the USA. Symptoms, causes, diagnosis and treatments were the most commonly discussed themes. Most common symptoms mentioned were eye dryness (138/901), pain (114/901) and blurry vision (110/901). Pharmaceutical drugs (prescription and over-the-counter; 55%; 764/1393), followed by medical devices (20%; 280/1393), were mentioned as major options for managing symptoms. Of the pharmaceutical drugs, eye drops (33%; 158/476) and artificial tears (10%; 49/476) were the most common over-the-counter options reported, and Restasis® (22%; 103/476) and Xiidra® (6%; 27/476) were the most common prescription drugs. Patients voiced a significant impact of DED on their daily activities (4%; 9/224), work (23%; 51/224) and driving (12%; 26/224). Lack of DED specialists, standard diagnostic procedures, effective treatment options and need to increase awareness of DED among patients were identified as the key unmet needs.ConclusionsInsights revealed using SML strengthen our understanding about patient experiences and their unmet needs in DED. This study illustrates that an SML approach contributed effectively in generating patient insights, which can be utilised to inform early drug development process, market access strategies and stakeholder discussions.FundingNovartis Pharma AG, Basel, Switzerland. Plain language summary available for this article.

Project description:The WHO recommends maternity waiting homes (MWH) as one intervention to improve maternal and newborn health. However, persistent structural, cultural and financial barriers in their design and implementation have resulted in mixed success in both their uptake and utilization. Guidance is needed on how to design a MWH intervention that is acceptable and sustainable. Using formative research and guided by a sustainability framework for health programs, we systematically collected data from key stakeholders and potential users in order to design a MWH intervention in Zambia that could overcome multi-dimensional barriers to accessing facility delivery, be acceptable to the community and be financially and operationally sustainable.We used a concurrent triangulation study design and mixed methods. We used free listing to gather input from a total of 167 randomly sampled women who were pregnant or had a child under the age of two (n = 59), men with a child under the age of two (n = 53), and community elders (n = 55) living in the catchment areas of four rural health facilities in Zambia. We conducted 17 focus group discussions (n = 135) among a purposive sample of pregnant women (n = 33), mothers-in-law (n = 32), traditional birth attendants or community maternal health promoters (n = 38), and men with a child under two (n = 32). We administered 38 semi-structured interviews with key informants who were identified by free list respondents as having a stake in the condition and use of MWHs. Lastly, we projected fixed and variable recurrent costs for operating a MWH. Respondents most frequently mentioned distance, roads, transport, and the quality of MWHs and health facilities as the major problems facing pregnant women in their communities. They also cited inadequate advanced planning for delivery and the lack of access to delivery supplies and baby clothes as other problems. Respondents identified the main problems of MWHs specifically as over-crowding, poor infrastructure, lack of amenities, safety concerns, and cultural issues. To support operational sustainability, community members were willing to participate on oversight committees and contribute labor. The annual fixed recurrent cost per 10-bed MWH was estimated as USD543, though providing food and charcoal added another $3,000USD. Respondents identified water pumps, an agriculture shop, a shop for baby clothes and general goods, and grinding mills as needs in their communities that could potentially be linked with an MWH for financial sustainability.Findings informed the development of an intervention model for renovating existing MWH or constructing new MWH that meets community standards of safety, comfort and services offered and is aligned with government policies related to facility construction, ownership, and access to health services. The basic strategies of the new MWH model include improving community acceptability, strengthening governance and accountability, and building upon existing efforts to foster financial and operational sustainability. The proposed model addresses the problems cited by our respondents and challenges to MWHs identified by in previous studies and elicits opportunities for social enterprises that could serve the dual purpose of meeting a community need and generating revenue for the MWH.

Project description:IntroductionDespite the potential of social media to influence public health and generate insights, the process of monitoring and analyzing the dissemination of health care messages on social media has been described as difficult and in need of improvement.ObjectivesThe objective of this study was to describe and demonstrate a reproducible methodology for cataloging and analyzing health care-related social media comments and provide insight into how clinicians and members of the general public respond to health care messaging on social media.MethodsWe collected social media comments related to the American Dental Association's 2016 "Evidence-Based Clinical Practice Guideline for the Use of Pit-and-Fissure Sealants" between April 10, 2017, and October 31, 2017, from Facebook, Twitter, LinkedIn, Reddit, and online message boards for the New York Times, FiveThirtyEight, and Dentaltown. Using data provided in the comments, we conducted engagement analysis as well as content, network, and sentiment analysis across 8 categories.ResultsWe collected 671 comments. Among our findings, Facebook (472 of 671) was the most popular platform among commentators; almost half of all comments (335 of 671) aligned with the recommendations of the 2016 American Dental Association sealants guideline; clinicians were more likely than the general public to like a comment that suggested an improvement to the guideline; and >75% of comments (521 of 671) were supported by anecdotal evidence.ConclusionAs the prevalence of anecdotes on social media suggests, the likelihood of falsehoods spreading on social media is high. Insights gleaned from the methodology described in this research could help combat the spread of such misinformation by providing disseminators of health care messaging with insight into their target audiences. Armed with this knowledge, disseminators can craft health care messages that more effectively engage clinicians and the general public.Knowledge transfer statementThe methodology used in this research provides a reproducible strategy for tracking social media engagement with health care messages. Engagement results can assist future delivery of health care messages to key stakeholders and ensure better implementation and adoption of these communications.

Dataset Information

Listening to patients with cancer: using a literary-based research method to understand patient-focused care.

Publications

Listening to patients with cancer: using a literary-based research method to understand patient-focused care.

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