Dataset Information

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

ABSTRACT: OBJECTIVE:To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis. DESIGN:This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory. SETTING:Interviewees were sought across Germany through self-help organisations, primary care clinics, rehabilitation facilities, physicians and other healthcare professionals to develop cancer modules for the website krankheitserfahrungen.de (illness experiences.de). PARTICIPANTS:Women with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer. RESULTS:The meaning and role of information in the illness experiences were clearly associated with gaining control in a seemingly uncontrollable situation in which others -people, the disease- take over. Four categories characterise the ways in which information helped interviewees to regain a sense of control following a diagnosis of cancer: 'becoming confident in one's treatment decision', 'taking responsibility for one's situation', 'understanding the consequences of the disease and treatment for one's life', and 'dealing with fear'. There was, however, always a fine line between information seeking and becoming overwhelmed by information. CONCLUSIONS:Information needs to be understood as a management tool for handling the disease and its (potential) consequences. Patients' unmet needs for information might not be easily solved by a simple increase in the amount of information because emotional support and respect for patient autonomy might also play a role. The evaluation of one's own information behaviour and the information received is closely linked to how the illness unfolds. This makes it challenging to document unmet information needs and satisfaction with information independent of an individual's illness trajectory over time.

SUBMITTER: Blodt S

PROVIDER: S-EPMC5857676 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

Blödt Susanne S Kaiser Maleen M Adam Yvonne Y Adami Sandra S Schultze Martin M Müller-Nordhorn Jacqueline J Holmberg Christine C

BMJ open 20180312 3

<h4>Objective</h4>To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis.<h4>Design</h4>This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory.< ...[more]

PMID: 29530909

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Project description:ObjectivesTo explore people's experiences of cognitive decline and receiving a diagnosis of dementia.Design61 semistructured interviews within 2 weeks of diagnosis. Audio recordings were transcribed, line-by-line coded using NVIVO V.11 and analysed using thematic analysis.Setting9 memory clinics (UK).ParticipantsPeople with mild/moderate dementia.ResultsMost participants were diagnosed with Alzheimer's disease (56% female, mean age 81 years). 104 codes were grouped into 22 categories, feeding into 9 subthemes and 4 overarching themes: (1) dissonance, threat to identity and visibility of dementia: dementia was associated with a progressive loss of competence, culminating in being an idiot, crazy and losing the plot. The stigma of dementia led people to hide their diagnosis from others, even close family members. However, decreasing competence in everyday tasks was becoming increasingly visible in family and wider social networks. (2) Vulnerability and being in limbo: people were frustrated by the impact of dementia on their lives and felt vulnerable. Moreover, people were disturbed by not knowing how much and when they would deteriorate further. (3) Loss of control and agency: loneliness, increasing dependence and becoming a burden foreshadowed increasing diminished personal agency. (4) Maintaining agency and self-worth: some people focused on what they could do and the benefits of diagnosis. This involved accepting the diagnosis, adapting to changes by using coping strategies and accepting support from others. This helped people to maintain personal agency and self-worth.ConclusionWhile personal acceptance of dementia is challenging, people are additionally troubled about disclosing their diagnosis to others. Limited time in diagnostic appointments and limited postdiagnostic support leave few opportunities to address the emotional impact of a dementia diagnosis. There may be opportunities for healthcare professionals to discuss with patients the benefits of staying positive, implementing coping strategies and accepting support to live well with dementia.

Project description:BackgroundIncorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients' experience with hypertensive disorders of pregnancy (HDP), most notably preeclampsia, is necessary to improve patient-provider communication and ultimately inform patient-centered care and research. We sought to examine the information needs and experiences of individuals with pregnancies complicated by hypertensive disorders.MethodsWe conducted a qualitative content analysis of narrative-responses to an open-ended question from the Preeclampsia Registry (TPR), an online registry hosted by the Preeclampsia Foundation. Individuals were invited to enroll in TPR via social media, web searches, and newsletters. We restricted our analysis to participants who self-reported a history of HDP and responded to the open-ended question, "Is there any information that you could have had at the time of this pregnancy that would have been helpful?". Available responses from July 2013 to March 2017 were included. Narrative responses were coded, reconciled, and thematically analyzed by multiple coders using an inductive approach. Our main outcome measures included participants' expressed needs and additional concerns with respect to their HDP pregnancy.ResultsOf 3202 enrolled participants, 1850 completed the survey and self-reported having at least one pregnancy complicated by HDP, of which 895 (48.4%) responded to the open-ended question. Participants delivered in the United States (83%) and 27 other countries. Compared to non-responders, responders reported more severe HDP phenotypes and adverse offspring outcomes. We identified three principal themes from responses: patient-identified needs, management and counseling, and potential action. Responses revealed that participants' baseline understanding of HDP, including symptoms, management, therapeutic strategies, and postpartum complications, was demonstrably lacking. Responders strongly desired improved counseling so that both they and their providers could collaboratively diagnose, appropriately manage, and robustly and continuously communicate to facilitate a partnership to address any HDP complications.ConclusionsParticipants' responses regarding their HDP experience provide indispensable insight into the patient's perspectives. Our study suggests that improved education regarding possible HDP complications and transparency about the consideration of HDP and its associated outcomes during an evaluation are needed, and efforts to implement these strategies should be sought.Trial registrationThe Preeclampsia Registry: NCT02020174.

Project description:ObjectivesResearch on the adaptation of population health interventions for implementation in new contexts is rapidly expanding. This has been accompanied by a recent increase in the number of frameworks and guidance to support adaptation processes. Nevertheless, there remains limited exploration of the real-world experiences of undertaking intervention adaptation, notably the challenges encountered by different groups of stakeholders, and how these are managed. Understanding experiences is imperative in ensuring that guidance to support adaptation has practical utility. This qualitative study examines researcher and stakeholder experiences of funding, conducting and reporting adaptation research.SettingAdaptation studies.ParticipantsParticipants/cases were purposefully sampled to represent a range of adapted interventions, types of evaluations, expertise and countries. Semistructured interviews were conducted with a sample of researchers (n=23), representatives from research funding panels (n=6), journal editors (n=5) and practitioners (n=3).MeasuresA case study research design was used. Data were analysed using the framework approach. Overarching themes were discussed within the study team, with further iterative refinement of subthemes.ResultsThe results generated four central themes. The first three relate to the experience of intervention adaptation (1) involving stakeholders throughout the adaptation process and how to integrate the evidence base with experience; (2) selecting the intervention and negotiating the mismatch between the original and the new context; and (3) the complexity and uncertainty when deciding the re-evaluation process. The final theme (4) reflects on participants' experiences of using adaptation frameworks in practice, considering recommendations for future guidance development and refinement.ConclusionThis study highlights the range of complexities and challenges experienced in funding, conducting and reporting research on intervention adaptation. Moving forward, guidance can be helpful in systematising processes, provided that it remains responsive to local contexts and encourage innovative practice.

Dataset Information

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

Publications

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

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