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User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

ABSTRACT: Background:This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context. Methods:The Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas. Findings:The focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out. Conclusion:The paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange.

SUBMITTER: Jorgensen CR

PROVIDER: S-EPMC6088427 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

Jørgensen Clara R CR Eskildsen Nanna B NB Johnsen Anna T AT

Research involvement and engagement 20180813

<h4>Background</h4>This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has ...[more]

PMID: 30123531

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Project description:BackgroundThe period of regular contractions before 4 cm of cervical dilatation is often referred to as the latent phase or early labor. Women find it challenging to prepare for and cope with this phase of labor, and easily accessed web-based information from reliable sources may be useful in this preparation.ObjectiveThe aim of this study is to describe the development of a Norwegian website, Latens.no, for people seeking information on early labor and to explore users' experiences with the website to increase its user-friendliness.MethodsWe developed a website using an iterative process involving a multidisciplinary research team, health personnel, users, a graphic designer, and an expert in software development. We explored the website's user-friendliness using semistructured individual interviews and the think-aloud method. All interviews were audio recorded and transcribed. We then analyzed the participants' feedback on the website.ResultsParticipants included women who had recently given birth to their first baby (n=2), women who were pregnant with their first baby (n=4), and their partners (n=2). Results from participants' experiences completing tasks included positive feedback related to the content of Latens.no, positive feedback related to the website's design, and suggestions for improvement. Participants wanted to find information on early labor on the internet. Moreover, they found the information on the website relevant, trustworthy, and easy to read, and the design was attractive and easy to use. Overall, the participants performed the tasks easily, with few clicks and minimal effort.ConclusionsThe think-aloud method, while performing tasks, allowed for detailed feedback. The participants confirmed the user-friendliness of the website but at the same time provided information enabling improvement. We expect that changes made based on this user-centered design study will further increase the usability and acceptability of Latens.no.

Project description:BackgroundPostpartum depression (PPD) is one of the leading causes of maternal morbidity, affecting up to 18% of Canadian new mothers. Yet, PPD often remains untreated due to numerous barriers in access to care, including location and cost. Development of eHealth interventions in collaboration with patient partners offers an exciting opportunity to fill this care gap and provide effective and affordable care to new parents across British Columbia.ObjectiveOur aim was to determine the content and design preferences of women previously diagnosed with PPD to inform changes to the development of a web-enabled intervention for education and management of PPD.MethodsWebpage prototypes were created to mimic the web-enabled resource using findings from completed focus group research that assessed what women want in a web-enabled support resource for PPD. A convenience sample of women aged >18 years and previously diagnosed with PPD was recruited. Feedback was collected on the content and design of the prototypes via semistructured interviews and online surveys. Qualitative, inductive analytic, and quantitative methods were used.ResultsA total of 9 women (mean age 37.2 years, SD 4.8 years) completed the interview and a majority of the survey. The following 6 themes were identified: (1) inefficacy of text-heavy layouts, (2) highlighting key information, (3) clarity/understandability of the language, (4) finding support groups, (5) validation and immediate help for feelings of isolation, and (6) helpfulness and accessibility of the resource. Each theme identified elements of content or design that were either effective or may be improved upon. Most women (8/9, 89%) favored content relating to foundational knowledge of PPD, such as symptoms and management options. The layout, language, and content were found to be generally easy to understand, clear, trustworthy, and helpful.ConclusionsSix key areas were identified by women previously diagnosed with PPD, as requiring focus in a web-enabled psychoeducation program. Consistent with past research, this study also found that support and enthusiasm for web-enabled programs support PPD management as an adjunct to other evidence-based treatments.

Project description:BackgroundIncreased service user involvement is recommended to improve weak mental health systems in low-and middle-income countries (LMICs). However, involvement is rarely implemented and interventions to support involvement are sparse. In this study we evaluated the acceptability, feasibility and perceived outcomes of an empowerment and training program for service users and health professionals to facilitate service user involvement in mental health system strengthening in rural Ethiopia.MethodsREducing Stigma among HealthcAreProvidErs (RESHAPE) is a training curriculum for service users, their caregivers and aspirational health workers, which uses PhotoVoice methodology, to prepare them in participation of mental health systems strengthening in LMICs. We delivered the RESHAPE training augmented with empowerment content developed in Ethiopia. The interactive face-to-face training was delivered to service users and caregivers (over 10 days), and health professionals (1 day) separately. The study was an uncontrolled, convergent mixed-methods design. The quantitative data consisted of process data, satisfaction questionnaire, and a retrospective pre-test survey. Qualitative data included exit and follow-up in-depth interviews with the service users. Descriptive statistics were performed for quantitative data, and qualitative data were thematically analysed. The findings were integrated through triangulation for convergent themes following analysis.ResultsTwelve service users, 12 caregivers and 18 health professionals were enrolled, and completed the training. Participants valued the content and delivery process; the standard of the training program met their expectations and participation led to positive gains in understanding about mental illness, stigma, service-user involvement and human rights. The qualitative findings identified positive impacts, including increased self-confidence, sense of empowerment, social - and perceived therapeutic benefits.ConclusionsWe found that the RESHAPE training with added content for Ethiopia, delivered using the PhotoVoice methodology, is feasible, acceptable and of value to develop and implement training programmes which can empower service users to be involved in mental health system strengthening in this setting. Further study to assess the impact on health systems strengthening is warranted.

Project description:BACKGROUND:Hypertensive disorders of pregnancy (HDP) are a primary cause of adverse maternal and neonatal outcomes worldwide. For women at risk of hypertensive complications, guidelines recommend frequent surveillance of blood pressure and signs of preeclampsia. Clinic visits range from every 2 weeks to several times a week. Given the wide ubiquity of smartphones and computers in most countries and a growing attention for self-management, digital technologies, including mobile health (mHealth), constitute a promising component of monitoring (self-measured) blood pressure during pregnancy. Currently, little is known about the experiences of women using such platforms and how mHealth can be aligned with their needs and preferences. OBJECTIVE:The objectives were twofold: (1) to explore the experiences of Dutch women who had an increased risk of HDP with a blended care approach (mHealth combined with face-to-face care) for remote self-monitoring of blood pressure and preeclampsia symptoms and (2) to formulate recommendations for the use and integration of mHealth in clinical care. METHODS:Alongside a prospective blended care study (SAFE@home study) that monitors pregnant women at increased risk of HPD with mHealth technology, a mixed methods study was conducted, including questionnaires (n=52) and interviews (n=11). Results were analyzed thematically. RESULTS:Of the 4 themes, 2 themes were related to the technologies themselves (expectations, usability), and 2 themes were related to the interaction and use of mHealth (autonomy and responsibilities of patients, responsibilities of health care professionals). First, the digital platform met the expectations of patients, which contributed to user satisfaction. Second, the platform was considered user-friendly, and patients favored different moments and frequencies for measuring their blood pressure. Third, patient autonomy was mentioned in terms of increased insight about their own condition and being able to influence clinical decision making. Fourth, clinical expertise of health care professionals was considered essential to interpret the data, which translates to subsequent responsibilities for clinical management. Data from the questionnaires and interviews corresponded. CONCLUSIONS:Blended care using an mHealth tool to monitor blood pressure in pregnancy was positively evaluated by its users. Insights from participants led to 7 recommendations for designing and implementing similar interventions and to enhance future, morally sound use of digital technologies in clinical care.

Project description:ObjectivesInfographics have the potential to enhance knowledge translation and implementation of clinical practice guidelines at the point of care. They can provide a synoptic view of recommendations, their rationale and supporting evidence. They should be understandable and easy to use. Little evaluation of these infographics regarding user experience has taken place. We explored general practitioners' experiences with five selected BMJ Rapid Recommendation infographics suited for primary care.MethodsAn iterative, qualitative user testing design was applied on two consecutive groups of 10 general practitioners for five selected infographics. The physicians used the infographics before clinical encounters and we performed hybrid think-aloud interviews afterwards. 20 interviews were analysed using the Qualitative Analysis Guide of Leuven.ResultsMany clinicians reported that the infographics were simple and rewarding to use, time-efficient and easy to understand. They were perceived as innovative and their knowledge basis as trustworthy and supportive for decision-making. The interactive, expandable format was preferred over a static version as general practitioners focused mainly on the core message. Rapid access through the electronic health record was highly desirable. The main issues were about the use of complex scales and terminology. Understanding terminology related to evidence appraisal as well as the interpretation of statistics and unfamiliar scales remained difficult, despite the infographics.ConclusionsGeneral practitioners perceive infographics as useful tools for guideline translation and implementation in primary care. They offer information in an enjoyable and user friendly format and are used mainly for rapid, tailored and just in time information retrieval. We recommend future infographic producers to provide information as concise as possible, carefully define the core message and explore ways to enhance the understandability of statistics and difficult concepts related to evidence appraisal.Trial registration numberMP011977.

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User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

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User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

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