Thesis (Hons)--BA Communication Studies. / Cover title. Prepared for the South Australian Health Commission grant no. 67/47/020. Includes bibliographical references.

The NHS is providing patients with access to summaries of their individual health records, so that they can understand and manage their conditions more effectively. At the same time, the government is encouraging patients to be more involved in the decisions made about their direction of care, as evidence shows that outcomes improve if decision-making is shared. As the Internet grows, people are using it as a major source of health information. However, anybody can post information to the Internet, and there is no guarantee that it is reliable, accurate, based on research, or relevant. Therefore, people searching online for health information, using generic search engines, are at risk of finding information that may have a detrimental effect on their health and wellbeing. The aim of this research is to produce a model of a multi-approach evidence-based, post-diagnosis support system for patients and carers in England. The literature review carried out by the author identified 300 papers which looked at both the importance of patient participation in decision-making, and the issues with finding and using health information for patients and carers, but not together in the same research. While much has been written about evidence based practice for health professionals, there is a gap in the research about evidence-based patient choice and information service provision and skills for the general public. This is an issue for health professionals because patients are being actively encouraged to participate in the choices made about their treatment, but while there is evidence demonstrating the effectiveness of patient participation, there is no evidence to say that they have adequate access to information and the skills to use it. Health services need to know if there is appropriate information support for the general public, otherwise there is a risk that patients will not have the right information to help them make the best choice. To assess the information-seeking behaviour of the general public, a mixed-study analysis was performed using quantitative and qualitative surveys, and 139 responses were collected and analysed. The population included people suffering from Alzheimer’s disease and their carers. The evidence and the survey results confirmed that people do want to make decisions with their doctor, and that they do search for information, but do not always find what they are looking for. They said that they would value librarian support and information skills training, but would also find an all-encompassing consumer health information web-site useful. A consumer health information literacy framework was developed based on the existing SCONUL Seven Pillars of Information Literacy framework and the five steps to evidence based practice concept. This framework provided the foundation for the design and development of COCO, an innovative model to facilitate access to high quality consumer health information using existing NHS online information products combined with the information skills of public and medical librarians. The innovations of COCO are that it focuses on the whole population, supports those who are and are not computer literate, creates an opportunity for collaboration within the library sector, and builds on existing NHS online resources rather than creating new ones. COCO provides people with a central access point to reliable and relevant online consumer health information to help them make informed decisions about their care pathway. The collaborative element of the model ensures that is accessible to everyone, without incurring significant costs to public services. The main output from this research synthesis, is an original needs-based model (COCO), designed to simplify the consumer health information-seeking process for the general public, enabling them to access the right information to fulfil their information needs and help them make evidence-based treatment decisions with their doctors. The design of COCO was reviewed, validated and improved using structured opinions of experts in consumer health information, evidence based practice, information literacy, and information technology. Real-life consumer scenarios were used to manually test COCO against free text searches in Google. The search results from COCO and Google were analysed and compared using six validation metrics. This demonstrated the efficiency of COCO in providing significantly better quality information relevant to patients and carers, compared to Google. A mock-up of the final design and search results of COCO were then prepared, along with recommendations for future research.

Background: Seasonal influenza is a respiratory illness caused by the influenza virus. During the 2017–2018 flu season, the Centers for Disease Control and Prevention noted approximately 959,000 hospitalizations and 79,400 deaths from influenza. We sought to evaluate the educational quality of informational videos pertaining to seasonal influenza on the popular social media forum, YouTube. Methods: Using the keywords “seasonal influenza,” all videos from 28 January to 5 February 2017 were included and analyzed for characteristics, source, and content. The source was further classified as healthcare provider, alternative-medicine provider, the patient and/or their parents, company, media, or professional society. Videos about other categories of influenza (e.g. swine or Spanish) or in foreign languages were excluded. A total of 10 blinded reviewers scored each video independently. Results: Overall, 300 videos were analyzed, with a median of 341.50 views, 1.00 likes, 0 dislikes, and 0 comments. Based on the average scores of videos by source, there was statistically significant difference in the average score among videos by video source (p < 0.01). Healthcare provider videos had the highest mean scores whereas alternative medicine provider videos had the lowest. Conclusions: Although the aforementioned video sources scored higher than others, these videos did not fulfill our criteria as far as educating patients thoroughly. Our data also suggest alternative medicine and patient source videos were misleading for patients. Clinical implications: Although videos by healthcare providers were a better source of information, videos on seasonal influenza were shown to be poor sources of valid healthcare information. This study reiterates the need for higher-quality educational videos on seasonal influenza by the medical community.

Yes / Printed participant information about randomised controlled trials is often long, technical and difficult to navigate. Improving information materials is possible through optimisation and user-testing, and may impact on participant understanding and rates of recruitment. Methods: A study within a trial (SWAT) was undertaken within the CASPER trial. Potential CASPER participants were randomised to receive either the standard trial information or revised information that had been optimised through information design and user testing. Results: A total of 11,531 patients were randomised in the SWAT. Rates of recruitment to the CASPER trial were 2.0% in the optimised information group and 1.9% in the standard information group (odds ratio 1.027; 95% CI 0.79 to 1.33; p=0.202). Conclusions: Participant information that had been optimised through information design and user testing did not result in any change to rate of recruitment to the host trial. Registration: ISRCTN ID ISRCTN02202951; registered on 3 June 2009. / UK National Institute of Health Research Health Technology Assessment Programme (project number 08/19/04) / This article is included in the Studies Within A Trial (SWAT) collection (https://f1000research.com/collections/swat)

Syfte: Att undersöka hur patienter på ett universitetssjukhus uppfattar information gällande preoperativ dusch samt patientens genomförande av duschen på avdelningen. Introduktion: Vårdrelaterade infektioner är vanliga och kan leda till ökade kostnader, långvarig sjukhusvistelse och ökad lidande för patienter. Ett sätt att förhindra detta är att duscha med klorhexidin före operation. Det är sjuksköterskans ansvar att informera patienten om den preoperativa duschen, kontrollera att patienten uppfattat informationen och har möjlighet och resurser att följa den. Metod: En kvalitativ deskriptiv intervjustudie med semistrukturerade frågor. Materialet analyserades enligt Granheim och Lundmans beskrivning av innehållsanalys på manifest nivå. Urvalet utfördes genom bekvämlighetsurval. Deltagarna i studien var 12 patienter. Resultat: Deltagarna var övergripande nöjda med informationen om den preoperativa duschen. De kände att de hade fått tillräcklig information och att den var lättförståelig. Patienternas hade uppfattat informationen på olika sätt. Utförandet av duschen, uppfattning om särskilt viktiga delar på kroppen och vad patienterna upplevde som viktigt att tänka på efter duschen varierade. Slutsats: Information måste individanpassas och sjuksköterskan bör se till att patienten förstår informationen genom att be patienten återberätta informationen. / Aim: To investigate how patients in a university hospital in Sweden perceive the information about the preoperative shower and the patients execution of the shower in the hospital ward. Introduction: Healthcare-associated infections are common and can lead to increased costs, prolonged hospital stay and increased patient suffering. One way to prevent this is to shower with chlorhexidine before surgery. It’s the nurses’ responsibility to give the patient information about the preoperative shower and check that the patient knows about the shower procedure and is able to follow the instructions. Method: A qualitative descriptive interview study with semi-structured questions. The material was analyzed according to Granheim and Lundman's description of content analysis on a manifest level. The selection was carried out by convenience sample. Participants in the study were 12 patients. Results: Participants were overall satisfied with the information about the preoperative shower. They felt they had sufficient information and that it was easy to understand. Patients understood the information in different way. The performance of the shower, the knowledge of key areas of the body and what the patients experienced as important to consider after the shower varied. Conclusion: Information must be individually adapted and the nurse should ensure that the patient understands the information by asking to retell the information.

SAMMANFATTNING Bakgrund: Ett bråck, också kallat aortaaneurysm på stora kroppspulsådern beror på en försvagning i kärlväggen och följden blir en onormal vidgning av kärlets diameter. Detta är en sjukdom som främst drabbar män över 65 år. Opereras inte dessa patienter är dödligheten hög, cirka 80 procent. En fungerande, för patienten tydlig kommunikation när den preoperativa informationen delges, har en central betydelse för patientens förståelse och för resultatet av vården.   Syfte: Syftet med denna kvalitativa studie var att undersöka hur patienterna som genomgick elektiv endovaskulär operation upplevde information före och efter operationen.   Metod: En kvalitativ design användes. Fem patienter inkluderades i studien. Semistrukturerade intervjuer gjordes i ett tyst och avskilt rum på en kirurgavdelning.   Resultat: En värdefull preoperativ information är lagom och anpassad efter personens behov. Informationen bör bland annat innehålla uppskattad väntetid, operationstid samt eventuella risker med operationsmetoden. På internet kan man också själv söka fördjupad information. Känslorna inför operationen är av varierande orosgrad men oftast är det en lättnad att äntligen opereras. Informanterna vill helst sova under operationen. Bemötandet av personalen upplevs positivt.   Slutsats: Individanpassad information till patienter behövs då krav och förväntningar varierar. Modern teknik kan vara ett värdefullt komplement och hjälpmedel till den traditionella informationen. Informanterna var nöjda med den muntliga informationen och föredrog att få den genom ett personligt möte med personalen. Det behövs fler studier om hur informationen kan förbättras ytterligare.

The effect of psychosocial information resources on the psychological impact of genetic testing for patients Background: The genetic testing process has been shown to have a profound psychosocial impact on patients and families, yet research suggests that there is a lack of practical and helpful psychosocial information written to support decision-making. Ideally, this should be available for use both before and after genetic testing and should be easily accessed through genetic clinics. The development of pre-written leaflets or on-line resources which draw on the experiences and advice of families who have been through similar experiences, and are readily available through genetic clinics, might be one way of helping families make necessary adjustments. Aim: The aim of this study was to develop information resources for a) people undergoing carrier testing, and b) parents of children with undiagnosed conditions, and to pilot the use of these resources with service users. Methods: A systematic literature review was conducted to identify key themes to inform the content of the resources. To build on these findings, in-depth interviews were conducted with 11 people who had undergone carrier testing and 14 parents of children without a diagnosis. Interview data were analysed using the grounded theory method. A grey literature search of existing patient information was also conducted. These three phases informed the content of information resources. The development process also included input from genetic specialists, patient group representatives and interviewees. Finally, a pilot study was conducted through three genetic centres to assess the feasibility of a study testing the use of the resources. Findings: The participants in this study were striving for empowerment: carriers sought reproductive empowerment; parents developed empowerment strategies in order to advocate for their child. Moreover, a theory named ‘reconstructing the meaning of being a parent’ was constructed to describe the experience of parenting a child for whom no clear care pathway existed. The importance of providing timely information was identified as being a key factor in supporting parents during their search for a diagnosis. A new model was built to summarise the overarching experience of participants in this study. Conclusions: Empowerment was identified as a dynamic and multi-faceted construct. Health professionals and support groups can help facilitate the empowerment process through the provision of timely psychosocial information. This is particularly important in an age when patients are expected to take greater control than ever before over decisions affecting their healthcare.

<p>Syftet med studien var att undersöka om sjuksköterskans information till patienter, vid inläggning av perifer venkateter, följde gällande riktlinjer från Handbok för hälso- och sjukvårdspersonal. Författarna samlade in data genom att delta vid 60 inläggningar av perifer venkateter vilka genomfördes av femton olika sjuksköterskor. Insamlingen ägde rum på en dagkirurgiavdelning. Man observerade ett antal områden, resultatet på dessa kunde bli ja eller nej, där ja var det resultat man eftersökte. Antal ja-svar summerades och analyserades med oberoende t-tester för att se eventuella skillnader i yngre/äldre och män/kvinnor, inga skillnader påfanns. Resultatet visade att sjuksköterskornas information till patienter vid insättande av perifer venkateter hade uppenbara brister och inte följde gällande riktlinjer. I över hälften av observationsmomenten gavs bristande information eller ingen information alls. Det som sjuksköterskorna flitigast informerade om var att patienten vid insticket kunde känna smärta, denna information gavs till så gott som alla patienter. Två foldrar, en gällande patientinformation och en gällande sjuksköterskeinformation, har utformats av författarna för att kunna urskilja vad som kan vara nödvändigt när det gäller patientinformation.</p> / <p>The aim of this study was to investigate if given information to patients regarding insertion of a peripheral intravenous line was following national guidelines. The writers collected data by observing 60 insertions of peripheral intravenous lines that was performed by fifteen different nurses. The observations took place on a surgical ward. A specific number of areas were observed and the result of each observation could be answered with a yes or no, where yes was the result that was preferred. The yes-answers were summarized and analyzed using independent t-tests to find possible differences regarding gender and age, no differences were found. The result showed that given information to patients regarding the insertion of a peripheral intravenous line had obvious limitations and did not follow the national guidelines. In almost half of the observation areas the information was limited or none existing. The most common information that was given by the nurses was how the insertion of the peripheral intravenous line would feel, this information were given to almost every patient. Two information folders, one to the patients and one to the nurses, have been made by the writers to discern what can be necessary to inform the patient of.</p>

Syftet med studien var att undersöka om sjuksköterskans information till patienter, vid inläggning av perifer venkateter, följde gällande riktlinjer från Handbok för hälso- och sjukvårdspersonal. Författarna samlade in data genom att delta vid 60 inläggningar av perifer venkateter vilka genomfördes av femton olika sjuksköterskor. Insamlingen ägde rum på en dagkirurgiavdelning. Man observerade ett antal områden, resultatet på dessa kunde bli ja eller nej, där ja var det resultat man eftersökte. Antal ja-svar summerades och analyserades med oberoende t-tester för att se eventuella skillnader i yngre/äldre och män/kvinnor, inga skillnader påfanns. Resultatet visade att sjuksköterskornas information till patienter vid insättande av perifer venkateter hade uppenbara brister och inte följde gällande riktlinjer. I över hälften av observationsmomenten gavs bristande information eller ingen information alls. Det som sjuksköterskorna flitigast informerade om var att patienten vid insticket kunde känna smärta, denna information gavs till så gott som alla patienter. Två foldrar, en gällande patientinformation och en gällande sjuksköterskeinformation, har utformats av författarna för att kunna urskilja vad som kan vara nödvändigt när det gäller patientinformation. / The aim of this study was to investigate if given information to patients regarding insertion of a peripheral intravenous line was following national guidelines. The writers collected data by observing 60 insertions of peripheral intravenous lines that was performed by fifteen different nurses. The observations took place on a surgical ward. A specific number of areas were observed and the result of each observation could be answered with a yes or no, where yes was the result that was preferred. The yes-answers were summarized and analyzed using independent t-tests to find possible differences regarding gender and age, no differences were found. The result showed that given information to patients regarding the insertion of a peripheral intravenous line had obvious limitations and did not follow the national guidelines. In almost half of the observation areas the information was limited or none existing. The most common information that was given by the nurses was how the insertion of the peripheral intravenous line would feel, this information were given to almost every patient. Two information folders, one to the patients and one to the nurses, have been made by the writers to discern what can be necessary to inform the patient of.

Bakgrund/syfte: Smärtlindring via PCA-pump är en effektiv och säker metod vid postoperativ vård. Den syftar till att ge patienten större möjlighet att påverka sin smärtlindring. Tidigare studier påvisar att många patienter upplever sin kunskap om PCA- pumpen som otillräcklig. Denna studie syftar till att undersöka vilken grad av självskattad kunskap patienter upplever sig ha om PCA-pumpen vid smärtlindring med hjälp av PCA vid postoperativ vård. Dessutom undersöks om utförlig information, både muntlig och skriftlig, leder till ökad kunskap beträffande PCA-pumpen samt om patientinformation om PCA- pumpen minskar patientens självskattade smärta vid smärtlindring med hjälp av PCA-pump postoperativt. Metod: En deskriptiv konsekutiv enkätinsamling genomfördes på fem kirurgavdelningar vid ett sjukhus i mellersta delen av Sverige. 26 patienter deltog i studien. Resultat: Denna studie påvisade ett positivt samband mellan patientinformation och smärtlindring (r = 0,74, p = 0,0005). Det framkom även ett positivt samband mellan att få utförlig information om PCA-pumpen, muntlig och skriftlig, och ökad kunskap om PCA- pumpen hos patienten (r = 0,61, p = 0,0009). Självskattad kunskap om PCA pumpen och dess funktioner var i genomsnitt 6,3/10. Studien påvisade även att kombinerad smärtlindring med PCA-pump och EDA postoperativt leder i genomsnitt till ett VAS-värde som var 1,57 lägre efter administrering, i jämförelse med de som endast hade smärtlindring via PCA-pump, resultatet var dock inte signifikant (p = 0,1). Slutsats: Patientinformation kan spela en stor roll kring smärtlindringen hos patienter med PCA-pump. Utveckling av kvalitetsdokument för hur patientinformationen skall utföras kliniskt kan leda till en ökad smärtlindring hos patienter som vårdas postoperativt med PCA- pump. Mera forskning och större undersökningsgrupper behövs för att styrka generaliserbarheten och validiteten. / Background: Pain relief through PCA pump is an effective and safe method for the treatment of postoperative pain. It aims to provide the patient with greater ability to influence their pain. Previous studies shows that many patients experience their knowledge of the PCA pump as inadequate. This study aims to examine the degree of self-assessed knowledge patients feel that they have on the PCA pump during pain treatment through PCA in postoperative care. The study also aims to examine if detailed information, both verbal and written, will lead to increased knowledge regarding the PCA pump and whether extended information about PCA pumps reduces the patients self-rated pain during pain relief through PCA pump postoperatively. Method: A descriptive consecutive survey data collection was conducted on five surgical wards in the middle part of Sweden. 26 patients participated in this survey. Results: This study showed a positive correlation between patients and pain relief (r = 0,74, p = 0,0005). It was also a positive correlation between getting detailed information, both verbal and written, and increased knowledge for the patient (r = 0,61, p = 0,0009). Self-perceived knowledge of the PCA pump and its functions were an average of 6.3/10. The study also showed that combined pain treatment using the PCA-pump and EDA postoperatively leads to an avarage VAS-value that was 1,57 lower after administration, in comparison with those who only had pain treatment through the PCA-pump, the result was not significant (p = 0,1). Conclusion: Patient information can play a big role on pain relief in patients with PCA pump. Development of quality document for how patient information is to be performed clinically may lead to increased pain relief in patients treated postoperatively with PCA pump. More research and larger study groups are needed to demonstrate the generalizability and validity.