“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan). Policies aimed at harmonizing ethics standards for international research do not encapsulate some of the most important aspects of information practices for the research participants involved. We suggest shifting the focus from standards of one-way information delivery to a more process-oriented form of research ethics, where the contextual exploration of local needs through a mutual engagement with participants gains more ground.

Download Full-text

Types of information that patients with lung cancer with targetable driver mutations and their caregivers learn from online forums: Results of a qualitative study.

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.161 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 161-161

Author(s):

Laura A Petrillo ◽

Ashley Zhou ◽

Haiwen Gui ◽

Robert Sommer ◽

Jessica Jiyeong Lin ◽

...

Keyword(s):

Lung Cancer ◽

Side Effects ◽

Qualitative Study ◽

Information Exchange ◽

Driver Mutations ◽

Online Forums ◽

Structured Interviews ◽

Framework Analysis ◽

Cancer Subtypes ◽

Types Of Information

161 Background: Patients and caregivers seek information about cancer from a variety of sources in addition to their medical team. In recent years, patients with specific lung cancer subtypes have created advocacy groups with active online forums for networking, support, and information exchange. We sought to describe the types of information that patients and caregivers learned from their peers online about lung cancer with targetable driver mutations. Methods: In this qualitative study, we enrolled patients with lung cancer with targetable driver alterations in EGFR, ALK, or ROS1 genes and their caregivers. We conducted individual, semi-structured interviews with participants from a single academic center, asking about their experiences learning about and living with lung cancer. Three reviewers used a framework analysis to code transcripts, and we synthesized the codes into themes. In this analysis, we focused on one theme that emerged from the data related to the information that participants learned from online forums. Results: Of 59 patients approached, 39 patients (mean age = 59, 56% female, median time from diagnosis 16 months) and 16 caregivers (69% male, all spouses or long-term partners) agreed to participate and completed interviews. Participants used online forums to compare their experiences with others to gain a preview of what might lie ahead. Specifically, they read about patients with long survival that were a source of hope, as well as patients’ experiences of progression and dying from cancer that made clinical estimates of prognosis more personal and vivid. Online forums provided a venue to learn about the latest research, available clinical trials, how to manage side effects, and where to find expert clinicians. Participants learned about the treatments received by patients at other centers. They were also exposed to emotionally intense stories of patients from around the world who lacked access to targeted therapy and sought advice from other forum members about how to find specialized care. Caregivers pointed out the distressing effect on patients of learning bad news about online peers as a downside of online forums, but overall found them beneficial and supported patients’ engagement with them. Conclusions: Online forums, particularly those that narrowly focus on specific diseases or treatments, provide patients and caregivers with anecdotal evidence that helps them with practical matters, such as how to manage side effects, as well as more existential issues, such as how long they can expect to live. These results suggest that clinicians should be open to and curious about the information that patients and caregivers learn from online forums in order to better understand the perspectives that patients and caregivers bring to discussions and decisions about their cancer.

Download Full-text

Exploring User Information Needs in Online Pet Adoption Profiles

Proceedings of the Human Factors and Ergonomics Society Annual Meeting ◽

10.1177/1071181320641311 ◽

2020 ◽

Vol 64 (1) ◽

pp. 1308-1312

Author(s):

Zoe M. Becerra ◽

Sweta Parmar ◽

Keenan May ◽

Rachel E. Stuck

Keyword(s):

Information Needs ◽

Online Shopping ◽

Physical Characteristics ◽

User Needs ◽

User Group ◽

Animal Shelters ◽

Types Of Information ◽

The Right ◽

And Behavior ◽

Level Of Importance

With the increase of online shopping, animal shelters can use websites to allow potential adopters to view adoptable animals and increase the number of adoptions. However, little research has evaluated the information needs of this user group. This study conducted a user needs analysis to determine the types of information potential adopters want when searching for a new pet, specifically a cat or dog. Twenty-six participants ranked different behavioral and physical characteristics based on the level of importance and identified their top five overall characteristics. In general, cat adopters ranked the cat’s personality and behavior to be very important and dog adopters found physical characteristics highly important. This study shows the importance of understanding potential adopters’ needs to provide relevant and valued information on online pet adoption profiles. The recommendations and insights can be used to develop pet profiles that meet adopters’ needs and help adopters find the right pet.

Download Full-text

The information needs and behaviour of the Egyptian elderly living in care homes: An exploratory study

IFLA Journal ◽

10.1177/0340035221991563 ◽

2021 ◽

pp. 034003522199156

Author(s):

Essam Mansour

Keyword(s):

Elderly People ◽

Information Seeking ◽

Information Needs ◽

Information Sources ◽

Care Homes ◽

Average Income ◽

Information Awareness ◽

Medical Health ◽

Types Of Information ◽

Elderly Living

The purpose of this study is to investigate the information-seeking behaviour of the Egyptian elderly, including their information needs. A sample of 63 elderly people living in care homes was taken. It was divided into five focus groups. Of the 63 elderly people, 40 were men (63.5%) and 23 women (36.5%). Almost half (47.6%) ranged in aged from 61 to 70. About a quarter (23%) of them held a high school diploma. The highest percentage (28.6%) was labelled as average-income people. The highest percentage (60.3%) was also found to be widows or widowers. The types of information used most by the Egyptian elderly related to physical, medical/health, social, rational and recreational needs. Their information sources varied between formal and informal sources. Nearly two-thirds (63.5%) of them showed that limited knowledge, lack of interest, poor information awareness, aging, loneliness and health problems were the most significant obstacles they faced when seeking information.

Download Full-text

Commentary 1: Research with Persons Under Involuntary Commitment—Ethical Issues Surrounding Competence and Voluntariness

Journal of Empirical Research on Human Research Ethics ◽

10.1177/1556264619847322a ◽

2019 ◽

Vol 14 (5) ◽

pp. 475-478

Author(s):

Matthé Scholten ◽

Jochen Vollmann

Keyword(s):

Informed Consent ◽

Ethical Issues ◽

Research Participation ◽

Research Participant ◽

Involuntary Commitment ◽

Proxy Consent ◽

Undue Influence ◽

Research Participants ◽

Manic Symptoms ◽

Prospective Research

In this case commentary, we analyze ethical concerns that were raised in response to an interview with a woman with bipolar disorder who was under involuntary commitment. We focus on competence and voluntariness as two prerequisites for valid informed consent. We recommend that judgments of competence be based on whether prospective research participants sufficiently possess certain decision-making abilities. Based on this functional approach, we argue that manic symptoms need not undermine competence and that, even if we were to assume that the research participant became incompetent during the interview, this would not invalidate her consent retroactively. It would, however, compromise her ability to revoke her consent. We furthermore show that obtaining additional proxy consent for research participation may compromise the autonomy of service users who are competent to consent. Then we turn to the issue of voluntariness. Arguing that neither the great strength nor the external etiology of a desire compromises voluntariness, we propose that the voluntariness of a decision instead depends on whether the decision-maker endorses it on reflection. The researchers disclosed that prospective research participants’ decision about study participation would have no influence on the duration of the commitment or the quality of care. We contend that because of this neither coercion nor undue influence was exerted in the informed consent process. Nevertheless, there is an increased likelihood of perceived coercion and undue influence under conditions of involuntary commitment, and we close by suggesting some safeguards to prevent this.

Download Full-text

The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study

Journal of Community Genetics ◽

10.1007/s12687-014-0183-3 ◽

2014 ◽

Vol 5 (3) ◽

pp. 249-256 ◽

Cited By ~ 4

Author(s):

Lynley J. Donoghue ◽

Margaret A. Sahhar ◽

Ravi Savarirayan ◽

Supriya Raj ◽

Nicky M. Kilpatrick ◽

...

Keyword(s):

Qualitative Study ◽

Cleft Palate ◽

Cleft Lip ◽

Genetic Research ◽

The Impact

Download Full-text

94 Short-term use of therapeutic opioids for children and future opioid use disorders: A systematic review and qualitative study of decision-maker information needs

Paediatrics & Child Health ◽

10.1093/pch/pxab061.076 ◽

2021 ◽

Vol 26 (Supplement_1) ◽

pp. e68-e68

Author(s):

Malema Ahrari ◽

Samina Ali ◽

Michele Dyson ◽

Lisa Hartling

Keyword(s):

Systematic Review ◽

Qualitative Study ◽

Information Needs ◽

Policy Decision ◽

Decision Makers ◽

Snowball Sampling ◽

Opioid Use ◽

Short Term ◽

Short Term Exposure ◽

Evidence Summary

Abstract Primary Subject area Emergency Medicine - Paediatric Background Healthcare visits, hospitalizations, and deaths due to opioid-related harms continue to rise for children, despite an overall decline in opioid prescriptions. Decision-makers (including patients and families, clinicians, and policy-makers) require high quality syntheses to inform decisions regarding opioid use. Previous research has found that how systematic review (SR) results are presented may influence uptake by decision-makers. Evidence summaries are appealing to decision-makers as they provide key messages in a succinct manner. Objectives 1) To conduct an SR examining the association between short-term therapeutic exposure to opioids in children and development of opioid use disorder, and 2) To gain perspectives from policy decision-makers on the usability and presentation of results through the form of an evidence summary. Design/Methods We conducted an SR following methods recommended by Cochrane. A medical librarian conducted a comprehensive search and two authors were involved in study selection, data extraction and quality assessment. Studies were eligible if they reported primary research in English or French, and study participants had therapeutic exposure to opioids before age 18 years. Results were described narratively. Decision makers were recruited through purposive and snowball sampling methods, and they participated in interviews to discuss an evidence summary based on the SR. Interviews were transcribed and data were analyzed using content analysis. Ethics approval was obtained for the qualitative study. Results Nineteen American studies involving 47,191,990 participants were included. One study demonstrated that short-term therapeutic exposure may be associated with opioid abuse. Four others showed an association without specifying duration of exposure. Fourteen studies provided information on prevalence or incidence of opioid misuse following therapeutic exposure, median 27.8% [interquartile range 21.4% – 30.7%]; notably, 12 of them did not specify duration of therapeutic exposure. Identified risk factors were contradictory and remain unclear. Decision makers had mixed preferences for the presentation of evidence, depending on their degree of involvement in research versus practice. A majority preferred having methods and key characteristics of studies included in the first page of the evidence summary. They noted that the summary should not be text-heavy and details should be appended. Conclusion A number of studies suggest there is an association between lifetime therapeutic opioid use (unknown duration) and future nonmedical opioid use; however, there is limited evidence to determine whether short-term exposure is specifically associated with these outcomes. Policy and decision-makers prefer a succinct evidence summary for this SR, with study-specific details provided as an appendix. PROSPERO Registration: 122681.

Download Full-text

Is it ethical to deny genetic research participants individualised results?

Journal of Medical Ethics ◽

10.1136/jme.2007.024034 ◽

2009 ◽

Vol 35 (4) ◽

pp. 209-213 ◽

Cited By ~ 32

Author(s):

P Affleck

Keyword(s):

Genetic Research ◽

Research Participants

Download Full-text

Information needs of people with low back pain for an online resource: a qualitative study of consumer views

Disability and Rehabilitation ◽

10.3109/09638288.2013.829532 ◽

2013 ◽

Vol 36 (13) ◽

pp. 1085-1091 ◽

Cited By ~ 16

Author(s):

Mandy Nielsen ◽

Gwendolen Jull ◽

Paul W. Hodges

Keyword(s):

Low Back Pain ◽

Back Pain ◽

Qualitative Study ◽

Information Needs ◽

Low Back ◽

Online Resource

Download Full-text

Disconnection in Information Exchange During Pediatric Trauma Transfers: A Qualitative Study

Journal of Patient Experience ◽

10.1177/23743735211056513 ◽

2021 ◽

Vol 8 ◽

pp. 237437352110565

Author(s):

Hadley S Sauers-Ford ◽

James B Aboagye ◽

Stuart Henderson ◽

James P Marcin ◽

Jennifer L Rosenthal

Keyword(s):

Qualitative Study ◽

Information Exchange ◽

Pediatric Patients ◽

Traumatic Injury ◽

Pediatric Trauma ◽

Structured Interviews ◽

Theoretical Concepts ◽

Qualitative Thematic Analysis ◽

Clinician Communication ◽

Flow Of Information

Pediatric patients experiencing an emergency department (ED) visit for a traumatic injury often transfer from the referring ED to a pediatric trauma center. This qualitative study sought to evaluate the experience of information exchange during pediatric trauma visits to referring EDs from the perspectives of parents and referring and accepting clinicians through semi-structured interviews. Twenty-five interviews were conducted (10 parents and 15 clinicians) and analyzed through qualitative thematic analysis. A 4-person team collaboratively identified codes, wrote memos, developed major themes, and discussed theoretical concepts. Three interdependent themes emerged: (1) Parents’ and clinicians’ distinct experiences result in a disconnect of information exchange needs; (2) systems factors inhibit effective information exchange and amplify the disconnect; and (3) situational context disrupts the flow of information contributing to the disconnect. Individual-, situational-, and systems-level factors contribute to disconnects in the information exchanged between parents and clinicians. Understanding how these factors’ influence information disconnect may offer avenues for improving patient–clinician communication in trauma transfers.

Download Full-text