scholarly journals Parents' difficulties and information needs in coping with acute illness in preschool children: a qualitative study

BMJ ◽  
1996 ◽  
Vol 313 (7063) ◽  
pp. 987-990 ◽  
Author(s):  
J. Kai
Keyword(s):  
Preschool Children ◽  
Qualitative Study ◽  
Information Needs ◽  
Acute Illness

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

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.

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

2018 ◽  
Vol 14 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Zainab Afshan Sheikh ◽  
Klaus Hoeyer
Keyword(s):  
Qualitative Study ◽  
Information Exchange ◽  
Information Needs ◽  
Research Collaboration ◽  
Genetic Research ◽  
Research Participation ◽  
Research Participants ◽  
Mutual Engagement ◽  
Information Practices ◽  
Types Of Information

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.

scholarly journals Parent Reports of Sensory Experiences of Preschool Children With and Without Autism: A Qualitative Study

2009 ◽  
Vol 63 (2) ◽  
pp. 172-181 ◽  
Author(s):  
V. A. Dickie ◽  
G. T. Baranek ◽  
B. Schultz ◽  
L. R. Watson ◽  
C. S. McComish
Keyword(s):  
Preschool Children ◽  
Qualitative Study ◽  
Parent Reports ◽  
Sensory Experiences

scholarly journals What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

scholarly journals Defining the information needs of lung cancer screening participants: a qualitative study

2019 ◽  
Vol 6 (1) ◽  
pp. e000448 ◽  
Author(s):  
Mamta Ruparel ◽  
Samantha Quaife ◽  
David Baldwin ◽  
Jo Waller ◽  
Samuel Janes
Keyword(s):  
Lung Cancer ◽  
Cancer Screening ◽  
Qualitative Study ◽  
Focus Groups ◽  
Information Needs ◽  
False Negative ◽  
Lung Cancer Screening ◽  
Informed Decision ◽  
Curative Treatment ◽  
Information Materials

IntroductionLung cancer screening (LCS) by low-dose CT has been shown to improve mortality, but individuals must consider the potential benefits and harms before making an informed decision about taking part. Shared decision-making is required for LCS in USA, though screening-eligible individuals’ specific views of these harms, and their preferences for accessing this information, are not well described.MethodsIn this qualitative study, we aimed to explore knowledge and perceptions around lung cancer and LCS with a focus on harms. We carried out seven focus groups with screening-eligible individuals, which were divided into current versus former smokers and lower versus higher educational backgrounds; and 16 interviews with health professionals including general practitioners, respiratory physicians, lung cancer nurse specialists and public health consultants. Interviews and focus groups were audio-recorded and transcribed. Data were coded inductively and analysed using the framework method.ResultsFatalistic views about lung cancer as an incurable disease dominated, particularly among current smokers, and participants were often unaware of curative treatment options. Despite this, beliefs that screening is sensible and worthwhile were expressed. Generally participants felt they had the ‘right’ to an informed decision, though some cautioned against information overload. The potential harms of LCS were poorly understood, particularly overdiagnosis and radiation exposure, but participants were unlikely to be deterred by them. Strong concerns about false-negative results were expressed, while false-positive results and indeterminate nodules were also reported as concerning.ConclusionsThese findings demonstrate the need for LCS information materials to highlight information on the benefits of early detection and options for curative treatment, while accurately presenting the possible harms. Information needs are likely to vary between individuals and we recommend simple information materials to be made available to all individuals considering participating in LCS, with signposting to more detailed information for those who require it.

scholarly journals Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e032166 ◽  
Author(s):  
Kehinde Okunade ◽  
Kennedy Bashan Nkhoma ◽  
Omolola Salako ◽  
David Akeju ◽  
Bassey Ebenso ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Cancer Care ◽  
Information Needs ◽  
Research Council ◽  
Digital Health ◽  
Health Interventions ◽  
Sub Saharan Africa ◽  
Institutional Review Boards ◽  
National Council ◽  
Framework Analysis

IntroductionPalliative care is a clinically and cost‐effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.Methods and analysisThis is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.Ethics and disseminationEthics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18–032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19–2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.Trial registration numberISRCTN15727711

scholarly journals ‘Haematological cancers, they’re a funny bunch’: A qualitative study of non-Hodgkin’s lymphoma patient experiences of unmet supportive care needs

2016 ◽  
Vol 23 (11) ◽  
pp. 1464-1475 ◽  
Author(s):  
Brooke Swash ◽  
Nick Hulbert-Williams ◽  
Ros Bramwell
Keyword(s):  
Qualitative Study ◽  
Supportive Care ◽  
Cancer Patients ◽  
Hodgkin’S Lymphoma ◽  
Information Needs ◽  
Supportive Care Needs ◽  
Hodgkin's Lymphoma ◽  
Care Needs ◽  
Non Hodgkin’S Lymphoma ◽  
Non Hodgkin's Lymphoma

Despite high levels of psychological distress, there is a scarcity of research on unmet supportive care needs in haematological cancer patients. This qualitative study used an in-depth interpretative phenomenological approach to investigate the needs reported by six non-Hodgkin’s lymphoma patients and explored how these needs consequently shaped the patient experience. Emergent themes included the following: concerns for family, information needs and the need for psychological support. Participants reported feeling different to other cancer patients. Lack of understanding of their diagnosis by friends and family and lack of access to relevant support services are notable unmet needs that differ from previous findings.

scholarly journals Parental food allergy information needs: a qualitative study

2007 ◽  
Vol 92 (9) ◽  
pp. 771-775 ◽  
Author(s):  
W. Hu ◽  
C. Grbich ◽  
A. Kemp
Keyword(s):  
Food Allergy ◽  
Qualitative Study ◽  
Information Needs
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