The aim of the study is to understand the experiences of people’s health of illness, and healthcare, to provide support to other people with similar problems and to mediate these experiences to their close relatives and friends, as well as to professionals in healthcare.
MethodsDIPEx is a methodology developed by the Health Experiences Research Group at Oxford University. It is a qualitative content analysis of in-depth interviews. Thematically ordered parts of these interviews in the form of short videos or audio clips are posted on websites so as to be available to the general public. The purpose of these websites is to help people who suffer from similar illnesses and their families and health professionals.
An example of the application of the methodology can be found here: http://www.healthtalk.org/
Our research team travels throughout the Czech Republic and conducts interviews with people with different experiences regarding health. For every health problem that we deal with, we are looking for 40-50 people who are willing to share their experiences with us. In our search for people, we cooperate with general practitioners, hospitals, and institutes and also use our website: www.hovoryozdravi.cz.
To analyse the data obtained, we use qualitative research methods, which are recommended as the most suitable for research into the experiences of patients as they are able to capture their viewpoint on experiencing the illness and making decisions about the course of treatment.
More information about the research process can be found below.
In the research, we adhere to the ethical principles approved by the ethics committee. We proceed as follows:
- a patient receives in advance a detailed information sheet and all his/her questions are answered,
- subsequently, an informed consent is submitted to the patient for signing,
- after the interviews are carried out, the patient is provided with a transcript of the interview to authorise it,
- the patient may revoke his/her consent to participate in the research or to publication of the interview at any time.
Team Leader: Peter Tavel
Lucie Klůzová Kráčmarová (research director)
Zuzana Půžová (responsible for the Active Ageing Module)
Lenka Slepičková (responsible for the Palliative Care Module)
Iva Poláčková Šolcová
MORE INFORMATION ON THE DIPEX RESEARCH
The research team
The interviews are carried out and analysed by experienced researchers who specialise in the subject. At the Institute of Social Health at Palacky University in Olomouc (OUSHI) we have experts in the fields of psychology, social work, healthcare, and sociology, and also specialists in the field of qualitative methodology. The researchers undergo an intensive selection procedure followed by training to ensure that the data collection and data analysis are performed only by capable, qualified, and experienced specialists.
The Team Leader and the Research Director are responsible for compliance with the prescribed procedure. The Team Leader approves any changes in this process and conducts an annual evaluation of each researcher. The entire work team meets regularly to monitor the course of the research.
In this first step, a review of the scholarly literature is processed and potential participants in the research are contacted. When the research sample is being selected, maximum variability should be ensured. Thus, we are looking for participants from different social backgrounds and with different experiences of the phenomenon in question. We also contact healthcare and social care organisations. The research sample is partly produced by the snowball method, i.e. the research participants are asked to help mediate other contacts among their acquaintances. The interview scenario is created on the basis of the list of scholarly literature and consultations with invited experts.
Before the interview
Before the interview, a participant is informed about the nature of the research and the methodology and the place of the interview is agreed. The participant is guaranteed the right to withdraw from the research at any time and the withdrawal of the interview from the website if required. The informed consent is signed.
Data collection – Interviews
The data collection is carried out using semi-structured interviews, under supervision or intervision. Typically, 40-50 interviews are carried out for each diagnosis. The goal is to continue in the research until theoretical saturation, i.e. until no new experiences appear in the interviews that are analysed.
Analysis and topic summaries
The interviews are coded and subjected to thematic analysis using qualitative data analysis software. A list of about 25 topics is compiled for each module and provides an analytical context for the clips released from the interviews. About 250 clips that reflect issues that are important for patients are selected for each module. The aim is to develop a sufficiently wide selection of experiences and viewpoints on a topic and prepare a list of video clips, audio recordings or texts. The information obtained is then compared with the literature.
The lists of topics are compared with the data obtained from the interviews carried out by other researchers. The proposed outputs are sent to members of the consultative committee for an opinion. The summary of the medical topics is then referred for assessment by qualified experts. As soon as the comments of the consultative committee and medical experts are incorporated, the summary of the topic can be completed. The final report is compiled by the researcher who is in charge of the module.
Within the final stage of each module, the data in the form of text, audio recordings, and video clips is published on our website, www.hovoryozdravi.cz, which allows the dissemination of information among those who encounter the issues in question.
The interviews are held throughout the Czech Republic, mostly in the places where the participants live, or somewhere else, if required by the participants. Typically, the interviews are carried out in private or with the participation of a close relative or friend. All the interviews are recorded and the sound recordings are then analysed. If the respondent agrees, the interviews are also filmed with a camera. At the beginning of the interview, people are encouraged to tell their story, explaining what they experienced from the moment when their first realised that they had a problem. The researcher does not interrupt the respondent during the interview, and only subsequently asks clarifying questions on issues that have been raised in the course of the interview or appeared in previous interviews or in the literature.
In qualitative research, the collection of the data and the analysis of the interviews often overlap. After several interviews, the two members of the research team (the researcher responsible for the module and his supervisor) discuss the topics that arise and which open up new possibilities and perspectives. This can be used to modify the subsequent discussions so that they focus on deeper examination of the problems that are essential for the participants.
The recordings of the interviews are transcribed in their entirety and the transcript is provided to the participants for a review. They may decide to what extent they want the interview to be released on the website. If they want to publish only certain parts, the other parts are removed from the final version by the researcher. After the revision of the transcript (if required), the participants are requested to sign a form giving their permission to use the recording, by which they allow Palacky University and possibly third parties (e.g. cooperating research institutions) to use the interview for research purposes, teaching, broadcasting, and posting on websites.
We first determine the list of categories of topics for the analysis. They are taken from the literature and from the first few interviews. During the analysis, the list of categories expands and their coding is clarified. The interviews are transcribed using computer software (Tesch, 1990).
In the next step, we group all the parts of the interviews which relate to a similar subject (such as “diagnosis” or “communication with a doctor”). When the coding is complete, we can see what was mentioned in relation to a specific topic in the statements of the research participants. These parts of the interviews are then analysed and used as a basis for compilation of the general information (summaries) on a particular topic. Then they are posted along with the video clips on the website (within an individual section for each diagnosis on the website).
The data analysis is carried out by the researcher responsible for the module and his/hersupervisor, who cooperate closely and provide an independent and critical perspective for each other. They jointly make certain that the important points and the viewpoint of each participant were included in the summaries of the individual topics. At this stage, it is possible to discuss the meaning and interpretation of certain statements during the interview. The analysis process is described in detail by Ziebland and McPherson (2006; see References).
Texts for project website
Two qualitative researchers from our team will study the transcripts of the interviews and consider which topics should be placed on the website. The list of topics is also discussed within the research team. When summarising the topics, the researchers do not only take into account several selected opinions or the most common view on the subject, but cover the whole range of perspectives and statements that were articulated during the interviews. The conclusions are put into the context of the latest clinical evidence and current practice.
A summary of the information that is established is elaborated for each topic. This summary is suggested by the chief researcher and checked and revised, where appropriate, by his/her supervisor. Then the summary must be checked by at least one another colleague to ensure that the text is clear before it undergoes proofreading.
Selection of video clips
The researcher selects video clips, audio recordings, and extracts from the interviews so that these examples illustrate the wide spectrum of views and experiences that occur in the interviews. The website presents only a few recordings from each interview, but the complete interviews are used for professional analysis and as a basis for conference papers or articles for professional journals or literature.
One of our goals is to have at least one article based on each project carried out using the DIPEx methodology that will be published in international or Czech impact or peer-reviewed journals. Publishing is one of the important ways to inform a wide range of experts about the results of our work. At the same time, publishing articles allows us to maintain the quality, value, and credibility of the projects that are implemented.
Tesch, R. (1990). Qualitative research. Analysis types and software tools. Basingstoke: Falmer Press.
Ziebland, S., McPherson, A. (2006). Making Sense of Qualitative Data Analysis with illustrations from the DIPEx project. Medical Education, 405-414.