Health Expectations最新文献

{"title":"Delivery of Supported Self-Management in Primary Care Asthma Reviews: Insights From the IMP2ART Programme","authors":"Emma Kinley, Hilary Pinnock, Liz Steed, Kirstie McClatchey","doi":"10.1111/hex.70100","DOIUrl":"10.1111/hex.70100","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Supported self-management (SSM) for asthma reduces the risk of asthma attacks and improves asthma control and quality of life. SSM optimally includes patient-centred communication and behaviour change support, however, the extent to which this occurs in routine primary care is unclear. This project was nested within the IMPlementing IMProved Asthma self-management as RouTine (IMP<sup>2</sup>ART) programme; a UK-wide trial evaluating an implementation strategy (including healthcare professional (HCP) training on behaviour change strategies and patient-centred care) to improve support for asthma self-management.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To provide an understanding of how healthcare professionals deliver SSM in UK clinical practice; through assessing time spent on SSM strategies, how and to what extent patient-centred care and behaviour change discussions are delivered, and to explore whether factors such as mode of review or implementation support influence delivery.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design, Setting and Participants</h3>\u0000 \u0000 <p>We conducted an observational study using video-recordings of 12 HCPs delivering routine face-to-face and telephone asthma reviews (<i>n</i> = 64) in a sample of general practices participating in the IMP<sup>2</sup>ART trial (implementation <i>n</i> = 4; control <i>n</i> = 6). Analytical methods included: ALFA Toolkit Multi-Channel Video Observation (to code and quantify tasks undertaken); the Patient-Centred Observation Form; and The Behaviour Change Counselling Index (to assess patient-centeredness and behaviour change counselling used by HCPs).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>HCPs mostly spent time during routine asthma reviews discussing: an individual's asthma condition and management (average of 27.8% of consultation time); collaboratively reviewing and completing a personalised asthma action plan (6.3%) and training for practical self-management activities (5.4%). Areas of patient-centred care delivery and behavioural discussions included: creating and maintaining relationships, discussing asthma action plans and medication reconciliation. Professionals in IMP<sup>2</sup>ART implementation group practices delivered more SSM strategies. Comparison of face-to-face and remote consultations found no significant differences in HCP delivery of SSM.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>HCPs in UK primary care spent half the time","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11555607/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142632519","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts","authors":"Nabil Natafgi, Katie Parris, Erin Walker, Tracey Gartner, Jeanette Coffin, Ariana Mitcham, Luis Sanchez Ferrer, Maushmi K. Patel, Haley Wymbs, Ann Blair Kennedy","doi":"10.1111/hex.70094","DOIUrl":"10.1111/hex.70094","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC). This study explores the use of photovoice to document the experiences and capacity-building journey of Long Covid PEs within PES USC.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study employed photovoice within the COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). PEs submitted photographs and narratives at two distinct time points. Among the 18 PEs who participated in the project, 47 photos were collected during the training, and 31 were collected at the project's conclusion. Thematic analysis was conducted to capture changes in patient perspectives and engagement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Initial themes identified were “Hope through Community,” “Collaborative Education and Research” and “Strength and Endurance.” By the project's end, themes had evolved to “Working as a Team to Share and Acquire Knowledge,” “Enhanced Confidence in the Future of Care” and “Perseverance and Progress.” These findings highlight the transformative impact of patient engagement and the utility of photovoice in documenting longitudinal shifts in patient perspectives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Photovoice effectively engaged Long Covid patients and captured their evolving roles and perceptions as PEs. The study underscores the value of patient-led participatory methods in enhancing the relevance and applicability of clinical research, advocating for their broader adoption to improve patient-centred care and research outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>A CoVIP Studio stakeholder advisory board (CoVIP SAB) guided the co-development and implementation of this project. The CoVIP SAB comprised nine members with complementa","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11554591/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142632525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Community-Driven Health Promotion: Evaluation of a Rural Microgrant Program","authors":"Michele Conlin, Dorothy McLaren, Evelien Spelten, Sean MacDermott","doi":"10.1111/hex.70098","DOIUrl":"10.1111/hex.70098","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Microgrants for health promotion have the potential to engage communities in designing and implementing place-based interventions to improve health and social outcomes. However, the evidence base around microgrants for health promotion is limited. This study presents the evaluation of a health service-funded microgrant program for health promotion in rural Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The evaluation framework was developed through a participatory approach and involved collaborative logic model building and co-prioritized evaluation questions with health service staff and grant recipients. Evaluation questions focused on participation, short-term outcomes, and the perceived value of program activities. Qualitative methods (reflexive thematic analysis) were used to answer the evaluation questions. Data sources included semi-structured interviews with grantees (<i>n</i> = 11) and the health service's health promotion team (<i>n</i> = 4), electronic field notes kept by the health promotion team (<i>n</i> = 50 documents), electronic progress reports completed by grantees (<i>n</i> = 6) and information and feedback forums (<i>n</i> = 2).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Since the program's inception in 2019, the health service has received 22 grant applications of which 15 were approved and 14 disbursed. Evaluation results show that grantees were community members with multiple roles, often with previous experience in applying for grants. Expected outcomes have been partially met, especially with regard to the program's aim of community empowerment. The most notable impact was the enhancement of participants' perception of and relationship with the health promotion team, as well as the creation of opportunities for community members such as exposure to art and bridging of social groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Microgrants represent a feasible way to increase health opportunities and foster community participation in the planning and delivery of health promotion programs. The key program activities identified and suggested improvements can help guide program replication and adaptation by other small organizations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contribution</h3>\u0000 \u0000 <p>Community members who had previously received a health service grant were invited to participate in collaborative workshops and follow-up surveys to codesign the grant program evalu","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11551473/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142632538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Qualitative Exploration of the Role of Culturally Relevant Social Prescribing in Supporting Pakistani Carers Living in the UK","authors":"Sarah McMullen, Shoba Poduval, Megan Armstrong, Nathan Davies, Chris Dayson, Kalpa Kharicha, Pushpa Nair, Manoj Mistry, Madiha Sajid, Kate Walters, Abi Woodward","doi":"10.1111/hex.70099","DOIUrl":"10.1111/hex.70099","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Approximately 5.7 million people in the UK are providing informal care. Carers across all ethnic groups can experience negative impacts on their physical and mental health but some minority ethnic groups face greater challenges. Higher levels of social isolation exist among Pakistani carers compared to White British carers, yet the needs of Pakistani carers and how well support services meet these needs is less well understood. Social prescribing can help people get more control over their health care in a nonmedical way. South Asian and other ethnically diverse populations are under-served in social prescribing and there is little evidence available on why this is the case.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To explore the potential role of culturally relevant and adapted social prescribing in assisting Pakistani carers and identify the cultural and religious influences and barriers on carer health behaviours.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Semi-structured one-to-one interviews with Pakistani family carers (<i>n</i> = 27) and social prescribing stakeholders (<i>n</i> = 10) living in London and Sheffield, UK. Participants were recruited through voluntary and community sector organisations (VCSOs), social media, religious organisations, and word of mouth. Interview data was analysed in NVivo using reflexive thematic analysis methods.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Two themes were developed; (1) Individual and community level influences: Navigating and accessing carer support within Pakistani communities, including carer identity and cultural barriers to accessing support provision, and cultural adaptation to facilitate support for Pakistani carer health and well-being, (2) societal and structural level challenges: Accessing and providing social prescribing for Pakistani carers, including funding challenges for the provision of culturally relevant carer support, integration of primary care and social prescribing, and enhancing cultural awareness and competence in social prescribing for Pakistani carers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There are complexities surrounding carer identity, family dynamics, stigma, and a lack of knowledge of social prescribing within Pakistani communities. There is a need for more culturally competent support, culturally relevant education, awareness-raising, and collaboration among primary care and VCSO's to better support Paki","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11551476/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142632529","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Qualitative Exploration of the Socioecological Influences Shaping the Diagnostic Experience and Self-Management Practices Among People Newly Diagnosed With Multiple Sclerosis","authors":"Olivia Wills, Sarah Manche, Yasmine Probst","doi":"10.1111/hex.70091","DOIUrl":"10.1111/hex.70091","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People newly diagnosed with multiple sclerosis (MS) often pursue ‘health-related’ behaviour changes to feel in control of their diagnosis. However, little is known about the specific factors that may influence behaviour change during this crucial time. Therefore, we conducted an in-depth exploration of the socioecological influences impacting the diagnostic experience and self-management practices following an MS diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We followed a qualitative study design using a phenomenological approach to explore the lived experiences of people newly diagnosed with MS. Analysis was conducted via an iterative process, starting with deductive open coding to map onto the socioecological model, followed by inductive focused coding to extract key themes from participants' reported experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eight participants diagnosed with MS within the past 12 months were interviewed. Four themes were reported across the MS journey, reflecting the different levels of the socioecological model: (1) taking control of a new diagnosis to retain a sense of personal identity—individual level; (2) grief and acceptance guided by community—social connection, community and social environment; (3) practical management of MS in the wider society—policy and government regulation; and (4) global events that greatly upheave the MS journey—natural disasters and societal conflicts, such as a pandemic. These themes highlighted the complex interrelationship between socioecological factors and self-management abilities in people living with MS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The diagnostic experience of those with MS is highly complex. Although it varies for each person living with MS, there are shared experiences that often reflect a common cycle of grief. An MS diagnosis provides an opportunity for self-rediscovery, which can both influence and be influenced by socioecological factors. The social and technical nature of self-managing MS strongly shapes the diagnostic experience, underpinning many aspects of daily living, social interaction and physical and psychological well-being.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The research team worked closely with an MS-specific consumer panel for the study design. This project was raised with this group, and preliminary results were shared at a national conference for","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540932/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142592367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Acceptability, Safety and Impact of a Play Co-Developed With Public Contributors as a Format for Disseminating Research on a Sensitive Subject","authors":"Cat Papastavrou Brooks, Noreen Hopewell-Kelly, Natalia V. Lewis","doi":"10.1111/hex.70074","DOIUrl":"10.1111/hex.70074","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Patient and public involvement (PPI) and dissemination of research findings are key parts of the pathway to research impact; however, traditional approaches often fail to engage non-academic audiences. Creative methods such as co-developed plays can be effective ways of making the research process and findings more engaging and accessible to the public. Not much is known about how to safely involve patients and the public in the development and delivery of plays disseminating research on sensitive subjects. Members of a PPI group on a study about mindfulness for women with a history of domestic abuse co-developed and performed a play about their experiences. This study aimed to evaluate the impact, acceptability and safety of a co-developed play in publicizing PPI and findings from research on domestic abuse.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a mixed-methods study with the play team and audience. We collected 20 quantitative and 56 qualitative survey responses from audience members, carried out 4.25 h of direct observations of play performances and interviewed seven audience members and eight play team members. Data were analyzed using the framework method and descriptive statistics, using a ‘following a thread’ approach to integrate qualitative and quantitative findings in themes answering our study aim.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We developed three integrated themes with ten sub-themes. The ‘Value’ theme summarized the plays' impact on audience understanding, potential mechanisms of impact and its effectiveness in depth over breadth of dissemination. The ‘Re-traumatization’ theme described potential harms of the play, the risks of re-traumatizing actors and distressing audiences. The ‘Reducing the risks’ theme summarized ways of reducing these risks of harm.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A play co-developed and performed by study PPI members raised awareness of domestic abuse. However, there were divergent opinions on its value in disseminating messages about PPI in research on sensitive subjects. The value of the play for research dissemination was linked to its ability to emotionally engage the public, and to its accessibility. Implementing strategies to reduce the risk of re-traumatizing audience members and the project team is recommended.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Everyone with direct experience","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540933/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142592357","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding How, Why and for Whom Link Work Interventions Promote Access in Community Healthcare Settings in the United Kingdom: A Realist Review","authors":"Rebecca Golby,&nbsp;Fiona Lobban,&nbsp;Louise Laverty,&nbsp;Kyriakos Velemis,&nbsp;Vishal R. Aggarwal,&nbsp;Katherine Berry,&nbsp;Abby Morris,&nbsp;Emma Elliott,&nbsp;Rebecca Harris,&nbsp;Al Ross,&nbsp;Carolyn A. Chew-Graham,&nbsp;Miranda Budd,&nbsp;Linda McGowan,&nbsp;David Shiers,&nbsp;Neil Caton,&nbsp;Chris Lodge,&nbsp;Paul French,&nbsp;Robert Griffiths,&nbsp;Jasper Palmier-Claus","doi":"10.1111/hex.70090","DOIUrl":"10.1111/hex.70090","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Inequity in access to healthcare in the United Kingdom can have a profound impact on people's ability to manage their health problems. Link work interventions attempt to overcome the socioeconomic and structural barriers that perpetuate health inequalities. Link workers are typically staff members without professional clinical qualifications who support patients to bridge the gap between services. However, little is currently known about how and why link work interventions might be effective. This realist review attempts to understand the contexts and resultant mechanisms by which link work interventions affect access to community healthcare services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The authors completed a systematic search of empirical literature in Embase, CINAHL, Medline, PsychInfo and SocIndex, as well as grey literature and CLUSTER searches. Context, mechanism and outcome (CMO) configurations were generated iteratively in consultation with an expert panel and grouped into theory areas.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirty-one eligible manuscripts were identified, resulting in nine CMO configurations within three theory areas. These pertained to adequate time in time-pressured systems; the importance of link workers being embedded across multiple systems; and emotional and practical support for link workers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Although link work interventions are increasingly utilised across community healthcare settings, the contexts in which they operate vary considerably, triggering a range of mechanisms. The findings suggest that careful matching of resources to patient need and complexity is important. It affords link workers the time to develop relationships with patients, embed themselves in local communities and referring teams, and develop knowledge of local challenges.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The team included people with lived experience of mental health conditions and a carer who were involved at all stages of the review.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540931/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142592395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of the First Patient-Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM","authors":"Sian K. Smith,&nbsp;Georgina Burns O'Connell,&nbsp;Rebecca Knibb,&nbsp;Rosemary Greenwood,&nbsp;Saira Hussain,&nbsp;Rachel Shaw,&nbsp;Jean Straus,&nbsp;Jonathan Banks,&nbsp;Amanda Hall,&nbsp;Nisha Dhanda,&nbsp;Sian Noble,&nbsp;Helen Pryce","doi":"10.1111/hex.70088","DOIUrl":"10.1111/hex.70088","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Context&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Patient-reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient-reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The aim of this study was to develop and evaluate content for the new ‘My Hearing PREM’, which captures lived experiences of hearing loss from patients’ perspectives.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;My Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Sixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non-clinical settings (e.g., lip-reading classes, national charity links and social media).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Most PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Currently, no hearing loss-specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the fea","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540936/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142592368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Knowledge Families Hold: Co-Production and Co-Research With Mental Health Family Carers in Understanding Experiences During the COVID-19 Pandemic","authors":"Caroline Walters,&nbsp;Eileen McDonald,&nbsp;Carli Sheers,&nbsp;Kerry Hawkins,&nbsp;Hayley Solich,&nbsp;JulieAnne Anderson,&nbsp;Nevena Simic,&nbsp;Danielle Moore,&nbsp;Tony Stevenson,&nbsp;Sharon Lawn,&nbsp;Melinda Goodyear,&nbsp;Marcelo Maghidman,&nbsp;Melissa Petrakis","doi":"10.1111/hex.70093","DOIUrl":"10.1111/hex.70093","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Through an in-depth exploration of mental health family carers' experiences during the COVID-19 pandemic in Australia, this co-produced study identified recommendations for advocacy, practice and policy implications to uphold family carer wellbeing. Government-enforced restrictions, changed service availability and difficulties accessing hospitals, led to additional anxiety, depression and elevated distress, especially for people experiencing mental health challenges before the pandemic. The National Mental Health Consumer and Carer Forum alongside two academic researchers aimed to discern the impact of care provision, levels of distress, unmet needs, challenges and benefits of providing support, across geographic locations and diverse communities.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This article reports on the survey component of a co-designed mixed-methods exploratory study of family carer experiences. A project steering group worked with two academic researchers, members of SWITCH Research Group, Monash University, to develop the 71-question online survey across 9-domains.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Family carers were relied upon to provide support and care when mental health services changed or closed. Carers support more than one person and typically people with daily and high-level needs. Caring levels increased from 26-h to an average of 40-h a week of support provision, with changed roles and increased complexity. Heightened demands became stress-inducing to the point of mental ill health and suicidality for some family carers.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Government policy and pandemic responses failed to address the financial, practical or emotional resources needed to fulfil the role of care provision and support to unwell and extremely distressed people with new or ongoing mental and psychological ill-health.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;From its inception, this project was co-produced and co-designed with mental health family carers and service users based on their expertise in understanding their experiences and ways to best explore these to the benefit and wellbeing of families in distress. The academic research partners both have active experience of supporting people with mental health challenges. Through each of the identified phases, lived experience expertise (family carers and service users) co-design","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540934/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142592348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Thank You to Our Peer Reviewers in 2023","authors":"","doi":"10.1111/hex.70075","DOIUrl":"10.1111/hex.70075","url":null,"abstract":"<p>Carolyn Chew-Graham (Editor-in-Chief), Parisa Aslani, Sarah Derrett, Michelle Flood, Clarissa Giebel, Lisa D. Hawke, Andrea Hilton, Kerry Kuluski, and Georgina Warner (Associate Editors)</p><p>We would like to thank all the reviewers from around the world who have provided expert advice to ensure publication of the best quality articles in <i>Health Expectations</i>. Their feedback is crucial to improve the quality of manuscripts and to clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The names of those who reviewed the manuscripts are listed below.</p><p>Our warmest gratitude goes to all of them, and especially to our top 10 reviewers.</p><p>Marianne Saragosa</p><p>Klejda Harasani</p><p>Mark Harris</p><p>Ashfaq Chauhan</p><p>Robin Gauld</p><p>Brooke Allemang</p><p>Muhammad Muneeb Hassan</p><p>Natasha Sheikhan</p><p>Susan Rifkin</p><p>Nagihan Sim Aygul\u0000 </p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11538470/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584855","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}