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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/29920881/towards-capturing-meaningful-outcomes-for-people-with-dementia-in-psychosocial-intervention-research-a-pan-european-consultation
#1
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
#2
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
#3
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
#4
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
#5
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/29770551/implementing-community-participation-via-interdisciplinary-teams-in-primary-care-an-irish-case-study-in-practice
#6
Edel Tierney, Rachel McEvoy, Ailish Hannigan, Anne E MacFarlane
BACKGROUND: Community participation in primary care is enshrined in international and Irish health policy. However, there is a lack of evidence about how stakeholders work collectively to implement community participation within interdisciplinary teams; community perspectives are rarely captured, and a theoretical underpinning for implementation of community participation in primary care is absent. OBJECTIVE: To conduct a theoretically informed, multiperspectival empirical analysis of the implementation of community participation via primary care teams (PCTs) in Ireland...
May 16, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29726069/does-the-delivery-of-diagnostic-news-affect-the-likelihood-of-whether-or-not-patients-ask-questions-about-the-results-a-conversation-analytical-study
#7
Ged M Murtagh, Anne L Thomas, Lynn Furber
BACKGROUND: Asymmetries in knowledge and competence in the medical encounter often mean that doctor-patient communication can be compromised. This study explores this issue and examines whether the likelihood of patient question asking is increased following the delivery of diagnostic test results. It also examines whether that likelihood is related to the way in which the test results are delivered. OBJECTIVE: To examine when and how patients initiate questions following diagnostic news announcements...
May 3, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29707865/co-designing-for-quality-creating-a-user-driven-tool-to-improve-quality-in-youth-mental-health-services
#8
Christina L Hackett, Gillian Mulvale, Ashleigh Miatello
BACKGROUND: Although high quality mental health care for children and youth is a goal of many health systems, little is known about the dimensions of quality mental health care from users' perspectives. We engaged young people, caregivers and service providers to share experiences, which shed light on quality dimensions for youth mental health care. METHODS: Using experience-based co-design, we collected qualitative data from young people aged 16-24 with a mental disorder (n = 19), identified caregivers (n = 12) and service providers (n = 14) about their experiences with respect to youth mental health services...
April 29, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29696740/using-the-public-involvement-impact-assessment-framework-to-assess-the-impact-of-public-involvement-in-a-mental-health-research-context-a-reflective-case-study
#9
Michelle Collins, Rita Long, Anthony Page, Jennie Popay, Fiona Lobban
BACKGROUND: We assess the utility of the Public Involvement Impact Assessment Framework (PiiAF) as a resource to support research teams in assessing the impact of Public Involvement across diverse research and public involvement (PI) contexts. PiiAF was developed in response to a well-documented growth in Public Involvement in health research in the United Kingdom that demands a more sophisticated evidence base to demonstrate its impact. DESIGN: We used a reflective case study approach drawing on contemporaneous meeting notes, PiiAF website resources and retrospective reflections to describe how PiiAF helped us to develop an impact assessment plan of the PI in a university-based mental health research centre...
April 25, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29691974/aboriginal-experiences-of-cancer-and-care-coordination-lessons-from-the-cancer-data-and-aboriginal-disparities-candad-narratives
#10
Rachel Reilly, Jasmine Micklem, Paul Yerrell, David Banham, Kim Morey, Janet Stajic, Marion Eckert, Monica Lawrence, Harold B Stewart, Alex Brown
BACKGROUND: Aboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes...
April 24, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29671920/who-said-dialogue-conversations-are-easy-the-communication-between-communication-vulnerable-people-and-health-care-professionals-a-qualitative-study
#11
Steffy E A Stans, Ruth J P Dalemans, Uta R Roentgen, Hester W H Smeets, Anna J H M Beurskens
OBJECTIVE: To gain insight into how communication vulnerable people and health-care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. METHODS: Communication vulnerable clients and health-care professionals in a long-term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation...
April 19, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29656511/neuropathic-pain-a-patient-centred-approach-to-measuring-outcomes
#12
Steve Hwang, Floortje van Nooten, Ted Wells, Aisling Ryan, Bruce Crawford, Christopher Evans, Marci English
BACKGROUND: Neuropathic pain (NP) is a complex, chronic pain state initiated by a primary lesion or dysfunction of the nervous system and presents as a variety of symptoms across multiple disease states. OBJECTIVE: To develop a patient-centred conceptual model of symptoms and impacts in subjects with diabetic peripheral neuropathy (DPN) or post-herpetic neuralgia (PHN) that can inform the measurement strategy in clinical trials. METHOD: Thirty subjects with DPN or PHN participated in in-person interviews which were performed until saturation was achieved...
April 15, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29655265/-ultimately-mom-has-the-call-viewing-clinical-trial-decision-making-among-patients-with-ovarian-cancer-through-the-lens-of-relational-autonomy
#13
Gladys B Asiedu, Jennifer L Ridgeway, Katherine Carroll, Aminah Jatoi, Carmen Radecki Breitkopf
OBJECTIVE: This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients' clinical trial (CT) participation. The study also offers unique insights into how FMs view patients' decision making. METHODS: In-depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA)...
April 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29654652/solidarity-and-cost-management-swiss-citizens-reasons-for-priorities-regarding-health-insurance-coverage
#14
Mélinée Schindler, Marion Danis, Susan D Goold, Samia A Hurst
CONTEXT: Approaches to priority-setting for scarce resources have shifted to public deliberation as trade-offs become more difficult. We report results of a qualitative analysis of public deliberation in Switzerland, a country with high health-care costs, an individual health insurance mandate and a strong tradition of direct democracy with frequent votes related to health care. METHODS: We adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex health-care allocation decisions into easily understandable choices, for use in Switzerland...
April 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29654649/mindful-organizing-in-patients-contributions-to-primary-care-medication-safety
#15
Denham L Phipps, Sally Giles, Penny J Lewis, Kate S Marsden, Ndeshi Salema, Mark Jeffries, Anthony J Avery, Darren M Ashcroft
BACKGROUND: There is a need to ensure that the risks associated with medication usage in primary health care are controlled. To maintain an understanding of the risks, health-care organizations may engage in a process known as "mindful organizing." While this is typically conceived of as involving organizational members, it may in the health-care context also include patients. Our study aimed to examine ways in which patients might contribute to mindful organizing with respect to primary care medication safety...
April 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29654644/reciprocal-relationships-and-the-importance-of-feedback-in-patient-and-public-involvement-a-mixed-methods-study
#16
Elspeth Mathie, Helena Wythe, Diane Munday, Paul Millac, Graham Rhodes, Nick Roberts, Nigel Smeeton, Fiona Poland, Julia Jones
BACKGROUND: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. AIMS: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback...
April 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29624858/being-targeted-as-a-severely-overweight-pregnant-woman-a-qualitative-interview-study
#17
Drude S Lauridsen, Peter Sandøe, Lotte Holm
BACKGROUND: Pregnant women with a body mass index (BMI) ≥ 30 kg/m2 have been targeted in health-care systems in many western countries as a high-risk group. However, we have limited knowledge of the long-term significance of this prenatal care policy. OBJECTIVE: To investigate accounts women give of their experiences of being targeted as severely overweight during pregnancy when they look back at the intervention 4-5 years later. DESIGN: Interpretive analysis based on 21 semi-structured interviews conducted 4-5 years after the pregnancy with Danish mothers categorized as having a pre-pregnancy BMI ≥ 30...
April 6, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29624815/responding-effectively-to-adult-mental-health-patient-feedback-in-an-online-environment-a-coproduced-framework
#18
Rebecca Baines, John Donovan, Sam Regan de Bere, Julian Archer, Ray Jones
BACKGROUND: Responding to online patient feedback is considered integral to patient safety and quality improvement. However, guidance on how to respond effectively is limited, with limited attention paid to patient perceptions and reactions. OBJECTIVES: To identify factors considered potentially helpful in enhancing response quality; coproduce a best-practice response framework; and quality-appraise existing responses. DESIGN: A four-stage mixed methodology: (i) systematic search of stories published on Care Opinion about adult mental health services in the South West of England; (ii) collaborative thematic analysis of responses to identify factors potentially helpful in enhancing response quality; (iii) validation of identified factors by a patient-carer group (n = 12) leading to the coproduction of a best-practice response framework; and (iv) quality appraisal of existing responses...
April 6, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29624803/towards-co-designing-active-ageing-strategies-a-qualitative-study-to-develop-a-meaningful-physical-activity-typology-for-later-life
#19
Cornelia Guell, Jenna Panter, Simon Griffin, David Ogilvie
BACKGROUND: Physical activity levels decline in later life despite the known benefits for physical, cognitive and mental health. Older people find it difficult to meet activity targets; therefore, more realistic and meaningful strategies are needed. We aimed to develop a typology of older people's motivations and lifelong habits of being active as a starting point to co-designing active ageing strategies in a workshop. METHODS: We conducted semi-structured interviews with 27 participants aged 65-80 in Norfolk, UK, and participant observation with 17 of them...
April 6, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29624799/a-checklist-for-managed-access-programmes-for-reimbursement-co-designed-by-canadian-patients-and-caregivers
#20
Andrea Young, Devidas Menon, Jackie Street, Walla Al-Hertani, Tania Stafinski
INTRODUCTION: Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation...
April 6, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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