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

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https://read.qxmd.com/read/30779324/coming-from-two-different-worlds-a-qualitative-exploratory-study-of-the-collaboration-between-patient-representatives-and-researchers
#1
Susanne Stuhlfauth, Ingrid Ruud Knutsen, Christina Foss
BACKGROUND: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. OBJECTIVE: By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. DESIGN: We apply a qualitative design using positioning theory as a theoretical framework...
February 18, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30773749/making-infection-prevention-and-control-everyone-s-business-hospital-staff-views-on-patient-involvement
#2
Elizabeth Sutton, Liz Brewster, Carolyn Tarrant
CONTEXT: Ensuring an infection-free environment is increasingly seen as requiring the contribution of staff, patients and visitors. There is limited evidence, however, about how staff feel about collaborating with patients and relatives to co-produce that environment. AIMS: This study aims to understand how hospital staff perceive the involvement of patients and relatives in infection prevention and control (IPC) and the main challenges for staff in working together with patients and relatives to reduce the threat of infection...
February 17, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30770609/the-burden-of-proof-the-process-of-involving-young-people-in-research
#3
Gail Dovey-Pearce, Sophie Walker, Sophie Fairgrieve, Monica Parker, Tim Rapley
Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully...
February 15, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30767349/developing-education-materials-for-caregivers-of-culturally-and-linguistically-diverse-patients-insights-from-a-qualitative-analysis-of-caregivers-needs-access-and-understanding-of-information
#4
Jamie L Schaffler, Sarah Tremblay, Andréa M Laizner, Sylvie Lambert
OBJECTIVES: To explore the information needs of caregivers of culturally and linguistically diverse (CALD) patients, and how they access and understand health information related to the management of their care person's chronic illness(es). BACKGROUND: Caregivers of CALD patients experience greater unmet needs compared to the general caregiver population. They experience many challenges in identifying resources and accessing formal supports to aid in self-management behaviours...
February 14, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30761699/patient-stakeholder-engagement-in-research-a-narrative-review-to-describe-foundational-principles-and-best-practice-activities
#5
REVIEW
James D Harrison, Andrew D Auerbach, Wendy Anderson, Maureen Fagan, Martha Carnie, Catherine Hanson, Jim Banta, Gina Symczak, Edmondo Robinson, Jeffrey Schnipper, Celene Wong, Rachel Weiss
BACKGROUND: Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. OBJECTIVE: The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts...
February 13, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30729625/media-content-analysis-of-the-introduction-of-a-soft-opt-out-system-of-organ-donation-in-wales-2015-17
#6
David J Dallimore, Leah McLaughlin, Carol Williams, Jane Noyes
In an attempt to improve organ donation rates, some countries are considering moving from "opt-in" systems where citizens must express their willingness to be an organ donor, to "opt-out" systems where consent is presumed unless individuals have expressed their wishes otherwise, by, for example, joining an "opt-out" register. In Wales-a part of the United Kingdom-the devolved government recently legislated for an "opt-out" system. For the change to be effective, a public awareness campaign was critical to the policy's success...
February 6, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30729621/clarifying-the-mechanisms-and-resources-that-enable-the-reciprocal-involvement-of-seldom-heard-groups-in-health-and-social-care-research-a-collaborative-rapid-realist-review-process
#7
REVIEW
Éidín Ní Shé, Sarah Morton, Veronica Lambert, Cliona Ní Cheallaigh, Vanessa Lacey, Eleanor Dunn, Cliona Loughnane, Joan O'Connor, Amanda McCann, Maura Adshead, Thilo Kroll
OBJECTIVE: Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. METHODS: A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007-2017); (b) documents provided by expert panel members of relevant journals and grey literature...
February 6, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30714290/an-australian-community-jury-to-consider-case-finding-for-dementia-differences-between-informed-community-preferences-and-general-practice-guidelines
#8
Rae Thomas, Rebecca Sims, Elaine Beller, Anna Mae Scott, Jenny Doust, David Le Couteur, Dimity Pond, Clement Loy, Cynthia Forlini, Paul Glasziou
BACKGROUND: Case-finding for dementia is practised by general practitioners (GPs) in Australia but without an awareness of community preferences. We explored the values and preferences of informed community members around case-finding for dementia in Australian general practice. DESIGN, SETTING AND PARTICIPANTS: A before and after, mixed-methods study in Gold Coast, Australia, with ten community members aged 50-70. INTERVENTION: A 2-day citizen/community jury...
February 3, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30672086/a-comparison-of-patients-and-dietitians-perceptions-of-patient-centred-care-a-cross-sectional-survey
#9
Ishtar Sladdin, Lauren Ball, Brigid M Gillespie, Wendy Chaboyer
AIM: The aim of this study was to compare patients' and dietitians' perceptions of patient-centred care (PCC) in dietetic practice. METHODS: Participants were as follows: (a) adult patients who had attended ≥1 individual dietetic consultation with an Accredited Practicing Dietitian (APD) working in primary care; and (b) APDs with experience working in primary care. A cross-sectional survey was undertaken using a patient- and dietitian-reported inventory to measure PCC in dietetic practice...
January 22, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30636366/surgical-breast-cancer-patient-pathway-experiences-of-patients-and-relatives-and-their-unmet-needs
#10
Ingrid Annette Zøylner, Kirsten Lomborg, Peer Michael Christiansen, Pia Kirkegaard
BACKGROUND AND AIM: Breast cancer is the most common cancer disease in women worldwide. In Denmark, the law prescribes cancer patient pathways (CPPs) in general and thus also for breast cancer. Although results from patient satisfaction surveys show overall satisfaction with the pathway, a call for improvement has been voiced for some areas. The aim of this study was to explore patients' and relatives' experiences with the surgical breast CPP and to identify any unmet needs. METHOD: This study was based on focus groups with patients who had surgery for breast cancer, and their relatives...
January 12, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30632258/rehabilitation-environments-service-users-perspective
#11
Maggie Killington, Dean Fyfe, Allan Patching, Paul Habib, Annabel McNamara, Rachael Kay, Venugopal Kochiyil, Maria Crotty
BACKGROUND: Design of rehabilitation environments is usually "expert" driven with little consideration given to the perceptions of service users, especially patients and informal carers. There is a need to engage with consumers of services to gain their insights into what design aspects are required to facilitate optimum physical activity, social interaction and psychological responses when they are attempting to overcome their limitations and regain function. RESEARCH DESIGN: Qualitative exploratory study...
January 10, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30632248/hope-disappointment-and-perseverance-reflections-of-people-with-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-and-multiple-sclerosis-participating-in-biomedical-research-a-qualitative-focus-group-study
#12
Eliana M Lacerda, Clare McDermott, Caroline C Kingdon, Jack Butterworth, Jacqueline M Cliff, Luis Nacul
BACKGROUND: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception...
January 10, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30632242/navigating-and-making-sense-of-urgent-and-emergency-care-processes-and-provision
#13
Catherine Pope, Gemma McKenna, Joanne Turnbull, Jane Prichard, Anne Rogers
BACKGROUND: Whilst many health systems offer a range of urgent and emergency care services to deal with the need for unscheduled care, these can be problematic to navigate. OBJECTIVE: To explore how lay people make sense of urgent care provision and processes. DESIGN: Qualitative study, incorporating citizen panels and longitudinal semi-structured qualitative interviews. SETTING AND PARTICIPANTS: Two citizens' panels, comprising purposively selected public populations-a group of regular users and a group of potentially marginalized users of urgent and emergency care...
January 10, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30618105/a-systematic-review-of-qualitative-studies-of-adults-experiences-of-being-assessed-for-psychological-therapies
#14
REVIEW
Angela Sweeney, Sarah Clement, Kate Gribble, Elizabeth Jackson, Sarah Carr, Jocelyn Catty, Steve Gillard
OBJECTIVE: To synthesize the qualitative literature on adults' experiences of psychological therapy assessments. The review was led by people with experience of undergoing assessments, with high levels of client involvement throughout. SEARCH STRATEGY: A comprehensive search of electronic databases was undertaken, with additional search strategies employed to locate further literature. INCLUSION CRITERIA: Studies were included that qualitatively explored the experiences of people aged 16+ who had been assessed for psychological therapy services...
January 8, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30614161/end-of-life-priorities-of-older-adults-with-terminal-illness-and-caregivers-a-qualitative-consultation
#15
Ebony T Lewis, Reema Harrison, Laura Hanly, Alex Psirides, Alexandra Zammit, Kathryn McFarland, Angela Dawson, Ken Hillman, Margo Barr, Magnolia Cardona
BACKGROUND: As older adults approach the end-of-life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. OBJECTIVE: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. METHOD: A descriptive qualitative study involving three focus group discussions (n = 18) and six in-depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia...
January 6, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30604580/codesigning-health-and-other-public-services-with-vulnerable-and-disadvantaged-populations-insights-from-an-international-collaboration
#16
REVIEW
Gillian Mulvale, Sandra Moll, Ashleigh Miatello, Glenn Robert, Michael Larkin, Victoria J Palmer, Alicia Powell, Chelsea Gable, Melissa Girling
BACKGROUND: Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign. OBJECTIVE: To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements. DESIGN: A modified case study approach...
January 2, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30604467/a-realist-evaluation-of-a-regional-dementia-health-literacy-project
#17
Sandra Grace, Louise Horstmanshof
BACKGROUND: A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. OBJECTIVE: To evaluate the Dementia Health Literacy Project using a realist evaluation framework. SETTING AND PARTICIPANTS: The setting was the region of the north coast of New South Wales...
January 2, 2019: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30597697/the-association-between-patients-expectations-and-experiences-of-task-affect-and-therapy-oriented-communication-and-their-anxiety-in-medically-unexplained-symptoms-consultations
#18
Juul Houwen, Bas J E Moorthaemer, Peter L B J Lucassen, Reinier P Akkermans, Willem J J Assendelft, Tim C Olde Hartman, Sandra van Dulmen
BACKGROUND: It is unknown whether patients with medically unexplained symptoms (MUS) differ from patients with medically explained symptoms (MES) regarding their expectations and experiences on task-oriented communication (ie, communication in which the primary focus is on exchanging medical content), affect-oriented communication (ie, communication in which the primary focus is on the emotional aspects of the interaction) and therapy-oriented communication (ie, communication in which the primary focus is on therapeutic aspects) of the consultation and the extent to which GPs meet their expectations...
December 30, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30588720/consumers-perspectives-on-their-involvement-in-recognizing-and-responding-to-patient-deterioration-developing-a-model-for-consumer-reporting
#19
Lindy King, Guy Peacock, Mikaila Crotty, Robyn Clark
BACKGROUND: Adverse events occur in health care. Detection and reporting of deterioration therefore have a critical role to play. Patient and family member (consumer) involvement in patient safety has gained powerful support amongst global policymakers. Few studies, with none taking a rigorous qualitative approach, have drawn upon consumers' experiences to establish their preferences in consumer reporting of patient deterioration programmes. OBJECTIVE: To explore consumers' experiences of previous reporting of patient deterioration; their preferred educational strategies on this role and recommended pathways in a consumer reporting of patient deterioration model...
December 26, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/30585389/patient-experiences-of-telephone-outreach-to-enhance-uptake-of-nhs-health-checks-in-more-deprived-communities-and-minority-ethnic-groups-a-qualitative-interview-study
#20
Emer Brangan, Tracey J Stone, Amanda Chappell, Vivienne Harrison, Jeremy Horwood
BACKGROUND: The NHS Health Checks preventative programme aims to reduce cardiovascular morbidity across England. To improve equity in uptake, telephone outreach was developed in Bristol, involving community workers telephoning patients amongst communities potentially at higher risk of cardiovascular disease and/or less likely to take up a written invitation, to engage them with NHS Health Checks. Where possible, caller cultural background/main language is matched with that of the patient called...
December 25, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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