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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/29691974/aboriginal-experiences-of-cancer-and-care-coordination-lessons-from-the-cancer-data-and-aboriginal-disparities-candad-narratives
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
https://www.readbyqxmd.com/read/29605966/patient-experience-of-centralized-acute-stroke-care-pathways
#12
Catherine Perry, Iliatha Papachristou, Angus I G Ramsay, Ruth J Boaden, Christopher McKevitt, Simon J Turner, Charles D A Wolfe, Naomi J Fulop
BACKGROUND: In 2010, Greater Manchester (GM) and London centralized acute stroke care services into a reduced number of hyperacute stroke units, with local stroke units providing on-going care nearer patients' homes. OBJECTIVE: To explore the impact of centralized acute stroke care pathways on the experiences of patients. DESIGN: Qualitative interview study. Thematic analysis was undertaken, using deductive and inductive approaches. Final data analysis explored themes related to five chronological phases of the centralized stroke care pathway...
March 31, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29602238/improving-health-literacy-in-a-japanese-community-population-a-pilot-study-to-develop-an-educational-programme
#13
Hirono Ishikawa, Ikuko Yamaguchi, Don Nutbeam, Mio Kato, Tsuyoshi Okuhara, Masafumi Okada, Takahiro Kiuchi
OBJECTIVE: Although a growing number of interventional studies on health literacy have been conducted recently, the majority were designed in clinical settings, focusing mainly on functional health literacy. This study evaluated a programme designed to improve health literacy in a community population, with a scope of going beyond functional health literacy. METHODS: In collaboration with an Approved Specified Nonprofit organization (NPO), we evaluated a five-session programme designed to provide basic knowledge on health-care policy and systems, current issues in health care in Japan, patient roles and relationships with health-care providers and interpersonal skills...
March 30, 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
#14
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...
March 14, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29532582/cultural-animation-in-health-research-an-innovative-methodology-for-patient-and-public-involvement-and-engagement
#15
Mihaela Kelemen, Emma Surman, Lisa Dikomitis
BACKGROUND: A significant challenge in Patient and Public Involvement and Engagement (PPIE) in health research is to include a wide range of opinions and experiences, including from those who repeatedly find themselves at the margins of society. OBJECTIVE: To contribute to the debate around PPIE by introducing a bottom-up methodology: cultural animation (CA). Cultural Animation is an arts-based methodology of knowledge co-production and community engagement which employs a variety of creative and participatory exercises to help build trusting relationships between diverse participants (expert and non-experts) and democratize the process of research...
March 12, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29512248/consumer-input-into-health-care-time-for-a-new-active-and-comprehensive-model-of-consumer-involvement
#16
REVIEW
Alix E Hall, Jamie Bryant, Rob W Sanson-Fisher, Elizabeth A Fradgley, Anthony M Proietto, Ian Roos
BACKGROUND: To ensure the provision of patient-centred health care, it is essential that consumers are actively involved in the process of determining and implementing health-care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health-care improvements...
March 7, 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
#17
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...
March 5, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29478260/personal-strengths-reported-by-people-with-chronic-illness-a-qualitative-study
#18
Olöf Birna Kristjansdottir, Una Stenberg, Jelena Mirkovic, Tonje Krogseth, Tone Marte Ljoså, Kurt C Stange, Cornelia M Ruland
BACKGROUND: Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. OBJECTIVE: To explore what people with chronic illness describe as their strengths relevant to their health and well-being...
February 25, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29473696/developing-and-testing-a-brief-clinic-based-lung-cancer-screening-decision-aid-for-primary-care-settings
#19
Karen Kane McDonnell, Scott M Strayer, Erica Sercy, Callie Campbell, Daniela B Friedman, Kathleen B Cartmell, Jan M Eberth
BACKGROUND: Cancer screening-related decisions require patients to evaluate complex medical information in short time frames, often with primary care providers (PCPs) they do not know. PCPs play an essential role in facilitating comprehensive shared decision making (SDM). OBJECTIVE: To develop and test a decision aid (DA) and SDM strategy for PCPs and high-risk patients. DESIGN: The DA was tested with 20 dyads. Each dyad consisted of one PCP and one patient eligible for screening...
February 23, 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...
February 21, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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