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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/29024214/regenerative-medicine-stroke-survivor-and-carer-views-and-motivations-towards-a-proposed-stem-cell-clinical-trial-using-placebo-neurosurgery
#1
Nicola A Cunningham, Purva Abhyankar, Julie Cowie, Jayne Galinsky, Karen Methven
BACKGROUND: Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability. OBJECTIVE: To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation...
October 12, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29024284/how-do-people-with-long-term-mental-health-problems-negotiate-relationships-with-network-members-at-times-of-crisis
#2
Sandra Walker, Anne Kennedy, Ivaylo Vassilev, Anne Rogers
BACKGROUND: Social network processes impact on the genesis and management of mental health problems. There is currently less understanding of the way people negotiate networked relationships in times of crisis compared to how they manage at other times. OBJECTIVE: This paper explores the patterns and nature of personal network involvement at times of crises and how these may differ from day-to-day networks of recovery and maintenance. METHOD: Semi-structured interviews with 25 participants with a diagnosis of long-term mental health (MH) problems drawn from recovery settings in the south of England...
October 10, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28984405/an-empirically-based-conceptual-framework-for-fostering-meaningful-patient-engagement-in-research
#3
Clayon B Hamilton, Alison M Hoens, Catherine L Backman, Annette M McKinnon, Shanon McQuitty, Kelly English, Linda C Li
BACKGROUND: Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. OBJECTIVE: To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. METHODS: We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board...
October 6, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28960699/the-midwife-woman-relationship-in-a-south-wales-community-experiences-of-midwives-and-migrant-pakistani-women-in-early-pregnancy
#4
Laura Goodwin, Billie Hunter, Aled Jones
BACKGROUND: In 2015, 27.5% of births in England and Wales were to mothers born outside of the UK. Compared to their White British peers, minority ethnic and migrant women are at a significantly higher risk of maternal and perinatal mortality, along with lower maternity care satisfaction. Existing literature highlights the importance of midwife-woman relationships in care satisfaction and pregnancy outcomes; however, little research has explored midwife-woman relationships for migrant and minority ethnic women in the UK...
September 29, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28960630/patient-family-advisors-perspectives-on-engagement-in-health-care-quality-improvement-initiatives-power-and-partnership
#5
Donna Goodridge, Tanner Isinger, Thomas Rotter
BACKGROUND: Engagement of the public in defining and shaping the organization and delivery of health care is increasingly viewed as integral to improving quality and promoting transparent decision making. Meaningful engagement of the public in health-care reform is predicated on shifting entrenched power imbalances between health-care systems and those it claims to serve. OBJECTIVES: To describe the expressions, forms and spaces of power from the perspectives of persons who participated as Patient/Family Advisors (PFAs) in Rapid Process Improvement Workshops (RPIWs) within Saskatchewan, Canada...
September 28, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28960624/talking-to-the-people-that-really-matter-about-their-participation-in-pandemic-clinical-research-a-qualitative-study-in-four-european-countries
#6
Nina H Gobat, Micaela Gal, Christopher C Butler, Steve A R Webb, Nicholas A Francis, Helen Stanton, Sibyl Anthierens, Hilde Bastiaens, Maciek Godycki-Ćwirko, Anna Kowalczyk, Mariona Pons-Vigués, Enriqueta Pujol-Ribera, Anna Berenguera, Angela Watkins, Prasanth Sukumar, Ronald G Moore, Kerenza Hood, Alistair Nichol
BACKGROUND: Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic. METHODS: Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK...
September 27, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28940972/-telling-and-assent-parents-attitudes-towards-children-s-participation-in-a-birth-cohort-study
#7
Izen Ri, Eiko Suda, Zentaro Yamagata, Hiroshi Nitta, Kaori Muto
INTRODUCTION: One of the ethical issues surrounding birth cohort studies is how to obtain informed assent from children as they grow up. What and how parents tell their children affects children's future choices about the study, yet few studies have focused on parents' influence on children. OBJECTIVE: This study examines parents' attitudes towards telling their children about their participation in a specific birth cohort study. METHODS: We conducted surveys and in-depth interviews with the parents of children who participated in the "Japan Environment and Children's Study" (JECS), which follows children from the foetal stage to age 13...
September 22, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28940931/measuring-recall-of-medical-information-in-non-english-speaking-people-with-cancer-a-methodology
#8
Ruby Lipson-Smith, Amelia Hyatt, Alexandra Murray, Phyllis Butow, Thomas F Hack, Michael Jefford, Uldis Ozolins, Sandra Hale, Penelope Schofield
BACKGROUND: Many patients who require an interpreter have difficulty remembering information from their medical consultations. Memory aids such as consultation audio-recordings may be of benefit to these patients. However, there is no established means of measuring patients' memory of medical information. OBJECTIVES: This study aimed to develop a method for eliciting and coding recall of medical information in non-English-speaking patients. DESIGN: This method, called Patient-Interpreter-Clinician coding (PICcode), was developed in the context of a phase II trial conducted in two outpatient oncology clinics in Melbourne, Australia, and was refined iteratively through consultation with an expert panel and piloting...
September 22, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28940536/patient-value-perspectives-from-the-advocacy-community
#9
REVIEW
Bonnie J Addario, Ana Fadich, Jesme Fox, Linda Krebs, Deborah Maskens, Kathy Oliver, Erin Schwartz, Gilliosa Spurrier-Bernard, Timothy Turnham
All health-care systems are under financial pressure and many have therefore developed value frameworks to assist decision making regarding access to treatment. Unfortunately, many frameworks simply reflect the clinically focused values held by health-care professionals rather than outcomes that also matter to patients. It is difficult to define one single homogeneous set of patient values as these are shaped by social, religious and cultural factors, and health-care environment, as well as many factors such as age, gender, education, family and friends and personal finances...
September 20, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28929554/optimizing-patient-and-public-involvement-ppi-identifying-its-essential-and-desirable-principles-using-a-systematic-review-and-modified-delphi-methodology
#10
Rebecca L Baines, Sam Regan de Bere
BACKGROUND: There is international interest in the active involvement of patients and the public. However, consensus on how best to optimize its application is currently unavailable. OBJECTIVE: To identify and assess the underlying principles of patient and public involvement (PPI) in health and social care services, research, education and regulation across medicine, dentistry and nursing. DESIGN: A four-phase methodology: (i) an extensive systematic review of published and grey literature; (ii) inductive thematic analysis of review findings; (iii) development of best practice principles; and (iv) consensus testing of identified principles using a modified Delphi methodology...
September 19, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28898930/impact-and-experiences-of-delayed-discharge-a-mixed-studies-systematic-review
#11
REVIEW
Antonio Rojas-García, Simon Turner, Elena Pizzo, Emma Hudson, James Thomas, Rosalind Raine
BACKGROUND: The impact of delayed discharge on patients, health-care staff and hospital costs has been incompletely characterized. AIM: To systematically review experiences of delay from the perspectives of patients, health professionals and hospitals, and its impact on patients' outcomes and costs. METHODS: Four of the main biomedical databases were searched for the period 2000-2016 (February). Quantitative, qualitative and health economic studies conducted in OECD countries were included...
September 12, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28881105/decision-aid-use-during-post-biopsy-consultations-for-localized-prostate-cancer
#12
Margaret Holmes-Rovner, Akshay Srikanth, Stephen G Henry, Aisha Langford, David R Rovner, Angela Fagerlin
BACKGROUND: Decision Aids (DAs) effectively translate medical evidence for patients but are not routinely used in clinical practice. Little is known about how DAs are used during patient-clinician encounters. OBJECTIVE: To characterize the content and communicative function of high-quality DAs during diagnostic clinic visits for prostate cancer. PARTICIPANTS: 252 men newly diagnosed with localized prostate cancer who had received a DA, 45 treating physicians at 4 US Veterans Administration urology clinics...
September 7, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28881071/quantity-over-quality-findings-from-a-systematic-review-and-environmental-scan-of-patient-decision-aids-on-early-abortion-methods
#13
Kyla Z Donnelly, Glyn Elwyn, Rachel Thompson
BACKGROUND: The availability and effectiveness of decision aids (DAs) on early abortion methods remain unknown, despite their potential for supporting women's decision making. OBJECTIVE: To describe the availability, impact and quality of DAs on surgical and medical early abortion methods for women seeking induced abortion. SEARCH STRATEGY: For the systematic review, we searched MEDLINE, Cochrane Library, CINAHL, EMBASE and PsycINFO. For the environmental scan, we searched Google and App Stores and consulted key informants...
September 7, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28841753/material-practices-for-meaningful-engagement-an-analysis-of-participatory-learning-and-action-research-techniques-for-data-generation-and-analysis-in-a-health-research-partnership
#14
Mary O'Reilly-de Brún, Tomas de Brún, Catherine A O'Donnell, Maria Papadakaki, Aristoula Saridaki, Christos Lionis, Nicola Burns, Chris Dowrick, Katja Gravenhorst, Wolfgang Spiegel, Chris Van Weel, Evelyn Van Weel-Baumgarten, Maria Van den Muijsenbergh, Anne MacFarlane
BACKGROUND: The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action (PLA) research approaches show promise, but there has been no detailed analysis of stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis. OBJECTIVES: To explore stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis...
August 25, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28841272/a-coproduced-patient-and-public-event-an-approach-to-developing-and-prioritizing-ambulance-performance-measures
#15
Andy Irving, Janette Turner, Maggie Marsh, Andrea Broadway-Parkinson, Dan Fall, Joanne Coster, A Niroshan Siriwardena
BACKGROUND: Patient and public involvement (PPI) is recognized as an important component of high-quality health services research. PPI is integral to the Pre-hospital Outcomes for Evidence Based Evaluation (PhOEBE) programme. The PPI event described in detail in this article focusses on the process of involving patients and public representatives in identifying, prioritizing and refining a set of outcome measures that can be used to support ambulance service performance measurement. OBJECTIVE: To obtain public feedback on little known, complex aspects of ambulance service performance measurement...
August 25, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28841264/patient-centred-care-is-a-way-of-doing-things-how-healthcare-employees-conceptualize-patient-centred-care
#16
Gemmae M Fix, Carol VanDeusen Lukas, Rendelle E Bolton, Jennifer N Hill, Nora Mueller, Sherri L LaVela, Barbara G Bokhour
BACKGROUND: Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. OBJECTIVE: To examine how hospital employees conceptualize patient-centred care. RESEARCH DESIGN: We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013...
August 25, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28841260/carers-involvement-in-decision-making-about-antipsychotic-medication-a-qualitative-study
#17
Norman J Stomski, Paul Morrison
BACKGROUND: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. OBJECTIVES: The aim of this study was to explore carers' participation in antipsychotic medication decision making...
August 25, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28841252/prioritizing-novel-and-existing-ambulance-performance-measures-through-expert-and-lay-consensus-a-three-stage-multimethod-consensus-study
#18
Joanne E Coster, Andy D Irving, Janette K Turner, Viet-Hai Phung, Aloysius N Siriwardena
BACKGROUND: Current ambulance quality and performance measures, such as response times, do not reflect the wider scope of care that services now provide. Using a three-stage consensus process, we aimed to identify new ways of measuring ambulance service quality and performance that represent service provider and public perspectives. DESIGN: A multistakeholder consensus event, modified Delphi study, and patient and public consensus workshop. SETTING AND PARTICIPANTS: Representatives from ambulance services, patient and public involvement (PPI) groups, emergency care clinical academics, commissioners and policymakers...
August 25, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28812330/black-and-minority-ethnic-group-involvement-in-health-and-social-care-research-a-systematic-review
#19
REVIEW
Shoba Dawson, Stephen M Campbell, Sally J Giles, Rebecca L Morris, Sudeh Cheraghi-Sohi
BACKGROUND: Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research. OBJECTIVES: To characterize and critique the empirical literature on BME-PPI involvement in health and social care research. SEARCH STRATEGY: Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH and free-text terms to identify international empirical literature published between 1990 and 2016...
August 15, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28806484/tensions-in-perspectives-on-suicide-prevention-between-men-who-have-attempted-suicide-and-their-support-networks-secondary-analysis-of-qualitative-data
#20
Andrea S Fogarty, Michael Spurrier, Michael J Player, Kay Wilhelm, Erin L Whittle, Fiona Shand, Helen Christensen, Judith Proudfoot
BACKGROUND: Men generally have higher rates of suicide, despite fewer overt indicators of risk. Differences in presentation and response suggest a need to better understand why suicide prevention is less effective for men. OBJECTIVE: To explore the views of at-risk men, friends and family about the tensions inherent in suicide prevention and to consider how prevention may be improved. DESIGN: Secondary analysis of qualitative interview and focus group data, using thematic analysis techniques, alongside bracketing, construction and contextualisation...
August 14, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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