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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/29424066/untimely-illness-when-diagnosis-does-not-match-age-related-expectations
#1
Susan Kirkpatrick, Louise Locock, Albert Farre, Sara Ryan, Helen Salisbury, Janet E McDonagh
BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience...
February 9, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29418053/preparing-researchers-for-patient-and-public-involvement-in-scientific-research-development-of-a-hands-on-learning-approach-through-action-research
#2
Maarten de Wit, Anna Beurskens, Barbara Piškur, Esther Stoffers, Albine Moser
BACKGROUND: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. OBJECTIVE: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University...
February 8, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29418050/the-process-of-incorporating-insulin-pumps-into-the-everyday-lives-of-people-with-type-1-diabetes-a-critical-interpretive-synthesis
#3
REVIEW
Claire Reidy, Mike Bracher, Claire Foster, Ivaylo Vassilev, Anne Rogers
BACKGROUND: Insulin pump therapy (IPT) is a technological advancement that has been developed to help people manage Type 1 diabetes (T1D). However, ways of managing diabetes requiring the implementation of health technologies bring new complexities and a need to understand the factors which enable people with T1D to incorporate a novel device. This new comprehension could provide an exemplar for people with long-term conditions to incorporate new technologies more generally. OBJECTIVE: To determine what influences the incorporation, adaptation and use of IPT into the everyday lives of people living with diabetes...
February 8, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29392858/diagnosis-of-a-severe-congenital-anomaly-a-qualitative-analysis-of-parental-decision-making-and-the-implications-for-healthcare-encounters
#4
Robyn Lotto, Lucy K Smith, Natalie Armstrong
OBJECTIVE: To explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters. DESIGN: Qualitative semi-structured interviews with 38 parents-to-be were collated and triangulated with data generated from consultation recordings. ANALYSIS: Data were analysed using a constant comparative-based approach. SETTING: Recruitment was undertaken across four fetal medicine sites in two tertiary referral trusts...
February 2, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29380916/online-information-for-parents-caring-for-their-premature-baby-at-home-a-focus-group-study-and-systematic-web-search
#5
Fiona Alderdice, Phyl Gargan, Emma McCall, Linda Franck
BACKGROUND: Online resources are a source of information for parents of premature babies when their baby is discharged from hospital. OBJECTIVES: To explore what topics parents deemed important after returning home from hospital with their premature baby and to evaluate the quality of existing websites that provide information for parents post-discharge. METHODS: In stage 1, 23 parents living in Northern Ireland participated in three focus groups and shared their information and support needs following the discharge of their infant(s)...
January 30, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29349856/self-responsibility-rationing-and-treatment-decision-making-managing-moral-narratives-alongside-fiscal-reality-in-the-obesity-surgery-clinic
#6
Amanda Owen-Smith, Joanna Coast, Jenny L Donovan
BACKGROUND: Addressing the prevalence of severe obesity and its concomitant morbidities is widely acknowledged as one of the most pressing global health priorities. Nevertheless, a paucity of effective interventions and universal pressure on health-care budgets means that access to obesity treatments is often limited. Although health-care rationing can be conceived as a socially constructed process, little is known about how decisions emerge within the context of face-to-face doctor-patient interactions...
January 19, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29345395/patient-carer-and-public-involvement-in-major-system-change-in-acute-stroke-services-the-construction-of-value
#7
Christopher McKevitt, Angus I G Ramsay, Catherine Perry, Simon J Turner, Ruth Boaden, Charles D A Wolfe, Naomi J Fulop
BACKGROUND: Patient and public involvement is required where changes to care provided by the UK National Health Service are proposed. Yet involvement is characterized by ambiguity about its rationales, methods and impact. AIMS: To understand how patients and carers were involved in major system changes (MSCs) to the delivery of acute stroke care in 2 English cities, and what kinds of effects involvement was thought to produce. METHODS: Analysis of documents from both MSC projects, and retrospective in-depth interviews with 45 purposively selected individuals (providers, commissioners, third-sector employees) involved in the MSC...
January 18, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29341347/employing-the-arts-for-knowledge-production-and-translation-visualizing-new-possibilities-for-women-speaking-up-about-safety-concerns-in-maternity
#8
Nicola Mackintosh, Jane Sandall, Claire Collison, Wendy Carter, James Harris
OBJECTIVES: This project used animated film to translate research findings into accessible health information aimed at enabling women to speak up and secure professional help for serious safety concerns during pregnancy and after birth. We tested as proof of concept our use of the arts both as product (knowledge production) and process (enabling involvement). BACKGROUND: Emergencies during pregnancy and birth, while unusual, can develop rapidly and unexpectedly, with catastrophic consequences...
January 17, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29319923/attitudes-towards-mental-health-mental-health-research-and-digital-interventions-by-young-adults-with-type-1-diabetes-a-qualitative-analysis
#9
Janine Clarke, Judy Proudfoot, Veronica Vatiliotis, Charles Verge, Deborah J Holmes-Walker, Lesley Campbell, Kay Wilhelm, Catherine Moravac, Pillaveetil S Indu, Madeleine Bridgett
BACKGROUND: Young people with type 1 diabetes are at increased risk of mental disorders. Whereas treatment need is high, difficulty recruiting young people with type 1 diabetes into psychosocial studies complicates development, testing and dissemination of these interventions. OBJECTIVE: Interviews with young adults with type 1 diabetes were conducted to examine attitudes towards mental health and mental health research, including barriers and motivators to participation in mental health studies and preferred sources of mental health support...
January 10, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29281161/a-patient-decision-aid-for-risk-reducing-surgery-in-premenopausal-brca1-2-mutation-carriers-development-process-and-pilot-testing
#10
Marline G Harmsen, Miranda P Steenbeek, Nicoline Hoogerbrugge, Helena C van Doorn, Katja N Gaarenstroom, M Caroline Vos, Leon F A G Massuger, Joanne A de Hullu, Rosella P M G Hermens
BACKGROUND: BRCA1/2 mutation carriers' choice between risk-reducing salpingo-oophorectomy (RRSO) and salpingectomy with delayed oophorectomy is very complex. Aim was to develop a patient decision aid that combines evidence with patient preferences to facilitate decision making. DESIGN: Systematic development of a patient decision aid in an iterative process of prototype development, alpha testing by patients and clinicians and revisions using International Patient Decision Aid Standards (IPDAS) quality criteria...
December 27, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29266797/empowering-people-to-help-speak-up-about-safety-in-primary-care-using-codesign-to-involve-patients-and-professionals-in-developing-new-interventions-for-patients-with-multimorbidity
#11
Sarah Knowles, Rebecca Hays, Hugo Senra, Peter Bower, Louise Locock, Jo Protheroe, Caroline Sanders, Gavin Daker-White
BACKGROUND: Multimorbidity, defined as the presence of two or more long-term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care. DESIGN: We drew on two established methods-accelerated experience-based codesign and the future workshop approach...
December 20, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29266661/health-literacy-skills-for-informed-decision-making-in-colorectal-cancer-screening-perceptions-of-screening-invitees-and-experts
#12
Anke J Woudstra, Daniëlle R M Timmermans, Ellen Uiters, Evelien Dekker, Ellen M A Smets, Mirjam P Fransen
BACKGROUND: The process of informed decision making (IDM) requires an adequate level of health literacy. To ensure that all individuals have equal opportunity to make an informed decision in colorectal cancer (CRC) screening, it is essential to gain more insight into which health literacy skills are needed for IDM. Our aims were (i) to explore how individuals make a decision about CRC screening and (ii) to explore which skills are needed for IDM in CRC screening and (iii) to integrate these findings within a conceptual framework...
December 20, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29222832/written-action-plans-for-children-with-long-term-conditions-a-systematic-review-and-synthesis-of-qualitative-data
#13
REVIEW
Andrea Waldecker, Alice Malpass, Anna King, Matthew J Ridd
BACKGROUND: Long-term conditions (LTCs) in children require a high level of self-management. Written action plans (WAPs) have been advocated to guide decision-making and support self-management but there is uncertainty about how WAPs "work" and what aspects are important for successful implementation. OBJECTIVE: To review and synthesize existing qualitative evidence about the design and use of WAPs across childhood LTCs. METHOD: We undertook a systematic search of the literature (Medline, EMBASE, CiNAHL, PsycInfo, Web of science) from inception to May 2015; critically appraised included studies; and synthesized the findings, drawing on normalisation process theory...
December 9, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29206313/the-impact-of-using-peer-interviewers-in-a-study-of-patient-empowerment-amongst-people-in-cancer-follow-up
#14
Clara R Jørgensen, Nanna B Eskildsen, Thora G Thomsen, Inger D Nielsen, Anna T Johnsen
BACKGROUND: A range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research. OBJECTIVE: To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment. DESIGN: 18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer...
December 5, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29193557/a-three-goal-model-for-patients-with-multimorbidity-a-qualitative-approach
#15
Neeltje P Vermunt, Mirjam Harmsen, Glyn Elwyn, Gert P Westert, Jako S Burgers, Marcel G Olde Rikkert, Marjan J Faber
BACKGROUND: To meet the challenge of multimorbidity in decision making, a switch from a disease-oriented to a goal-oriented approach could be beneficial for patients and clinicians. More insight about the concept and the implementation of this approach in clinical practice is needed. OBJECTIVE: This study aimed to develop conceptual descriptions of goal-oriented care by examining the perspectives of general practitioners (GPs) and clinical geriatricians (CGs), and how the concept relates to collaborative communication and shared decision making with elderly patients with multimorbidity...
November 28, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29165920/diabetes-related-complications-which-research-topics-matter-to-diverse-patients-and-caregivers
#16
Maman Joyce Dogba, Mylène Tantchou Dipankui, Selma Chipenda Dansokho, France Légaré, Holly O Witteman
BACKGROUND: Diabetes is a chronic disease with increasing prevalence worldwide. Although research has improved its treatment and management, little is known about which research topics matter to people living with diabetes, particularly among under-represented groups. OBJECTIVES: To explore the importance of research topics among a diverse range of people living with any type of diabetes or caring for someone living with any type of diabetes. METHODS: We used a convergent mixed-method design with quantitative and qualitative aspects...
November 22, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29165852/capturing-and-missing-the-patient-s-story-through-outcome-measures-a-thematic-comparison-of-patient-generated-items-in-psychlops-with-core-om-and-phq-9
#17
Célia Md Sales, Inês Td Neves, Paula G Alves, Mark Ashworth
BACKGROUND: There is increasing interest in individualized patient-reported outcome measures (I-PROMS), where patients themselves indicate the specific problems they want to address in therapy and these problems are used as items within the outcome measurement tool. OBJECTIVE: This paper examined the extent to which 279 items reported in an I-PROM (PSYCHLOPS) added qualitative information which was not captured by two well-established outcome measures (CORE-OM and PHQ-9)...
November 22, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29164743/patient-initiated-recruitment-for-clinical-research-evaluation-of-an-outpatient-letter-research-statement
#18
Matthias Wienroth, Louise Caffrey, Charles Wolfe, Christopher McKevitt
BACKGROUND: UK Hospital Trusts are charged with increasing patients' research awareness and willingness to take part in research. This includes implementing strategies to encourage patient-initiated enquiries about participation. OBJECTIVES: To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient-initiated recruitment. SETTING: A medical outpatient clinic of a research-active hospital trust, serving an inner-city multi-ethnic population across two boroughs...
November 22, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29297604/challenges-to-measuring-and-achieving-shared-decision-making-in-practice
#19
EDITORIAL
Sarah T Hawley
No abstract text is available yet for this article.
February 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29145699/focus-on-shared-decision-making
#20
Carolyn A Chew-Graham
No abstract text is available yet for this article.
December 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
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