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Health Expectations: An International Journal of Public Participation in Health Care and Health Policy

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https://www.readbyqxmd.com/read/30120809/a-cross-sectional-survey-of-mental-health-service-users-carers-and-professionals-priorities-for-patient-safety-in-the-united-kingdom
#1
Kathryn Berzins, John Baker, Mark Brown, Rebecca Lawton
BACKGROUND: Establishing patient safety priorities in psychiatry has received less international attention than in other areas of health care. This study aimed to identify safety issues as described by people in the United Kingdom identifying as mental health service users, carers and professionals. METHODS: A cross-sectional online survey was distributed via social media. Identified safety issues were mapped onto the Yorkshire Contributory Factors Framework (YCFF) which categorizes factors that contribute to patient safety incidents in general hospital settings...
August 17, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30112819/long-term-views-on-chronic-kidney-disease-research-priorities-among-stakeholders-engaged-in-a-priority-setting-partnership-a-qualitative-study
#2
Meghan J Elliott, Joanna E M Sale, Zahra Goodarzi, Linda Wilhelm, Andreas Laupacis, Brenda R Hemmelgarn, Sharon E Straus
BACKGROUND: Patients and stakeholders are increasingly engaging in health research to help address evidence-practice gaps and improve health-care delivery. We previously engaged patients, caregivers, health-care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research. OBJECTIVE: We aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place. DESIGN: In this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach...
August 15, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30109764/are-component-endpoints-equal-a-preference-study-into-the-practice-of-composite-endpoints-in-clinical-trials
#3
Melissa C W Vaanholt, Marlies M Kok, Clemens von Birgelen, Marieke G M Weernink, Janine A van Til
OBJECTIVES: To examine patients' perspectives regarding composite endpoints and the utility patients put on possible adverse outcomes of revascularization procedures. DESIGN: In the PRECORE study, a stated preference elicitation method Best-Worst Scaling (BWS) was used to determine patient preference for 8 component endpoints (CEs): need for redo percutaneous coronary intervention (PCI) within 1 year, minor stroke with symptoms <24 hours, minor myocardial infarction (MI) with symptoms <3 months, recurrent angina pectoris, need for redo coronary artery bypass grafting (CABG) within 1 year, major MI causing permanent disability, major stroke causing permanent disability and death within 24 hours...
August 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30085384/attitudes-towards-lung-cancer-screening-in-a-population-sample
#4
Stephanie E Smits, Grace M McCutchan, Jane A Hanson, Kate E Brain
BACKGROUND: Lung cancer is the leading cause of cancer death worldwide. Routine UK lung cancer screening is not yet available, thus understanding barriers to participation in lung screening could help maximize effectiveness if introduced. METHODS: Population-based survey of 1007 adults aged 16 and over in Wales using random quota sampling. Computer-assisted face-to-face interviews included demographic variables (age, gender, smoking, social group), four lung cancer belief statements and three lung screening attitudinal items...
August 7, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30073734/patient-involvement-in-qualitative-data-analysis-in-a-trial-of-a-patient-centred-intervention-reconciling-lay-knowledge-and-scientific-method
#5
Julia Frost, Andy Gibson, Faith Harris-Golesworthy, Jim Harris, Nicky Britten
BACKGROUND: We conducted a pilot study of an intervention to facilitate patients' agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). AIMS: To describe a novel approach to including patient partners in QDA; to illustrate the kinds of contribution that patient partners made to QDA in this context; and to propose a characterization of a process by which patient involvement can contribute to knowledge production...
August 2, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30062858/patient-and-public-engagement-in-research-and-health-system-decision-making-a-systematic-review-of-evaluation-tools
#6
Antoine Boivin, Audrey L'Espérance, François-Pierre Gauvin, Vincent Dumez, Ann C Macaulay, Pascale Lehoux, Julia Abelson
BACKGROUND: Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS: We searched literature published between January 1980 and February 2016...
July 30, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30030880/engaging-seldom-heard-groups-in-research-and-intervention-development-offender-mental-health
#7
Charlie Taylor, Laura Gill, Andy Gibson, Richard Byng, Cath Quinn
BACKGROUND: People subject to the criminal justice system often have substantially different life-experiences from the general population. Patient and public involvement (PPI) of "seldom heard" groups provides valuable experiential knowledge, enhancing research. OBJECTIVE: To share our jointly developed techniques to ensure the meaningful engagement and contribution of people with lived experience of the criminal justice system (PWLECJS) in research, trial science, intervention theory development and dissemination...
July 20, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/30004166/enacting-person-centredness-in-integrated-care-a-qualitative-study-of-practice-and-perspectives-within-multidisciplinary-groups-in-the-care-of-older-people
#8
Lisa K Riste, Peter A Coventry, Siobhan T Reilly, Peter Bower, Caroline Sanders
BACKGROUND: Person-centredness is important in delivering care for long-term conditions. New models of care aim to co-ordinate care through integration of health and social care which require new ways of working, often remotely from the patient. OBJECTIVE: To describe how person-centred care is enacted within multidisciplinary groups (MDGs) created as part of a new service, integrating health and social care for older people. METHODS: We followed the implementation of eight neighbourhood MDGs, observing and interviewing staff from three MDGs at different phases of programme implementation using semi-structured topic guides...
July 13, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29983004/patients-perceived-needs-for-allied-health-and-complementary-and-alternative-medicines-for-low-back-pain-a-systematic-scoping-review
#9
REVIEW
Louisa Chou, Tom A Ranger, Waruna Peiris, Flavia M Cicuttini, Donna M Urquhart, Andrew M Briggs, Anita E Wluka
OBJECTIVES: Allied health and complementary and alternative medicines (CAM) are therapeutic therapies commonly accessed by consumers to manage low back pain (LBP). We aimed to identify the literature regarding patients' perceived needs for physiotherapy, chiropractic therapy and CAM for the management of LBP. METHODS: A systematic scoping review of MEDLINE, EMBASE, CINAHL and PsycINFO (1990-2016) was conducted to identify studies examining patients' perceived needs for allied health and CAM for LBP...
July 7, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29962031/barriers-and-facilitators-to-implementing-a-process-to-enable-parent-escalation-of-care-for-the-deteriorating-child-in-hospital
#10
Fenella J Gill, Gavin D Leslie, Andrea P Marshall
OBJECTIVE: To identify barriers and facilitators to implementing a parent escalation of care process: Calling for Help (C4H). DESIGN: Audits, semi-structured interviews and focus groups guided by the Theoretical Domains Framework. SETTING: Australian paediatric hospital where a parent escalation of care process was introduced in the previous 6 months. PARTICIPANTS: Four children, 13 parents, 91 nurses and doctors including Medical Emergency Team (MET) members...
July 2, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29961962/pre-adolescent-children-s-experiences-of-receiving-diabetes-related-support-from-friends-and-peers-a-qualitative-study
#11
David Rankin, Jeni Harden, Katharine D Barnard, John Stephen, Simita Kumar, Julia Lawton
BACKGROUND: While pre-adolescent children with type 1 diabetes receive most support from their parents/caregivers, others also contribute to their care. This study explored pre-adolescent children's experiences of receiving diabetes-related support from friends and peers. The objective was to identify how children could be better supported by their friends and peers to undertake diabetes self-management. METHODS: In-depth interviews with 24 children (aged 9-12 years) with type 1 diabetes...
July 2, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29920881/towards-capturing-meaningful-outcomes-for-people-with-dementia-in-psychosocial-intervention-research-a-pan-european-consultation
#12
Laila Øksnebjerg, Ana Diaz-Ponce, Dianne Gove, Esme Moniz-Cook, Gail Mountain, Rabih Chattat, Bob Woods
BACKGROUND: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions...
June 19, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29920877/public-and-patient-involvement-in-quantitative-health-research-a-statistical-perspective
#13
Ailish Hannigan
BACKGROUND: The majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined...
June 19, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29858544/how-do-adolescents-with-cerebral-palsy-participate-learning-from-their-personal-experiences
#14
Sophie Catharina Wintels, Dirk-Wouter Smits, Floryt van Wesel, Johannes Verheijden, Marjolijn Ketelaar
BACKGROUND: Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. OBJECTIVE: The aim of this study was to examine the participation experiences of adolescents (aged 12-17 years) with CP. METHODS: A qualitative participatory research method was used. Twenty-three semi-structured open interviews were conducted with 13 male and 10 female adolescents (mean age 15 years) with CP...
June 1, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29858529/what-do-stakeholders-expect-from-patient-engagement-are-these-expectations-being-met
#15
Mathieu Boudes, Paul Robinson, Neil Bertelsen, Nicholas Brooke, Anton Hoos, Marc Boutin, Jan Geissler, Ify Sargeant
BACKGROUND: Meaningful patient engagement (PE) in medicines development and during the life cycle of a product requires all stakeholders have a clear understanding of respective expectations. OBJECTIVE: A qualitative survey was undertaken to understand stakeholder expectations. DESIGN: The survey explored 4 themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 categories: policymakers/regulators; health-care professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; and academic researchers...
June 1, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29858526/engaging-youth-in-research-planning-design-and-execution-practical-recommendations-for-researchers
#16
REVIEW
Lisa D Hawke, Jacqueline Relihan, Joshua Miller, Emma McCann, Jessica Rong, Karleigh Darnay, Samantha Docherty, Gloria Chaim, Joanna L Henderson
CONTEXT: Engaging youth as partners in academic research projects offers many benefits for the youth and the research team. However, it is not always clear to researchers how to engage youth effectively to optimize the experience and maximize the impact. OBJECTIVE: This article provides practical recommendations to help researchers engage youth in meaningful ways in academic research, from initial planning to project completion. These general recommendations can be applied to all types of research methodologies, from community action-based research to highly technical designs...
June 1, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29878605/seeking-the-patient-perspective
#17
EDITORIAL
Carolyn A Chew-Graham
No abstract text is available yet for this article.
June 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29537117/the-importance-of-service-users-perspectives-a-systematic-review-of-qualitative-evidence-reveals-overlooked-critical-features-of-weight-management-programmes
#18
REVIEW
Katy Sutcliffe, G J Melendez-Torres, Helen E D Burchett, Michelle Richardson, Rebecca Rees, James Thomas
BACKGROUND: Extensive research effort shows that weight management programmes (WMPs) targeting both diet and exercise are broadly effective. However, the critical features of WMPs remain unclear. OBJECTIVE: To develop a deeper understanding of WMPs critical features, we undertook a systematic review of qualitative evidence. We sought to understand from a service-user perspective how programmes are experienced, and may be effective, on the ground. SEARCH STRATEGY: We identified qualitative studies from existing reviews and updated the searches of one review...
June 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29508524/weight-management-programmes-re-analysis-of-a-systematic-review-to-identify-pathways-to-effectiveness
#19
REVIEW
G J Melendez-Torres, Katy Sutcliffe, Helen E D Burchett, Rebecca Rees, Michelle Richardson, James Thomas
BACKGROUND: Previous systematic reviews of weight management programmes (WMPs) have not been able to account for heterogeneity of effectiveness within programmes using top-down behavioural change taxonomies. This could be due to overlapping causal pathways to effectiveness (or lack of effectiveness) in these complex interventions. Qualitative comparative analysis (QCA) can help identify these overlapping pathways. METHODS: Using trials of adult WMPs with dietary and physical activity components identified from a previous systematic review, we selected the 10 most and 10 least effective interventions by amount of weight loss at 12 months compared to minimal treatment...
June 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29464870/older-patients-experience-of-primary-hypothyroidism-a-qualitative-study
#20
Lorna E Ingoe, Janis Hickey, Simon Pearce, Tim Rapley, Salman Razvi, Scott Wilkes, Susan Hrisos
BACKGROUND: Primary hypothyroidism is a common endocrine disorder, more so in an increasing UK ageing population. There is no qualitative research examining the older patient perspective of symptoms, treatment and self-management of hypothyroidism. OBJECTIVE: In this study we explored the experience of hypothyroidism in older people and examined how this may influence their understanding and acceptance of diagnosis, treatment with Levothyroxine and the monitoring process...
June 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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