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Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review 病人和公众参与工作与儿童的生命限制条件的父母和失去父母：快速系统回顾。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-12-08 DOI: 10.1111/hex.70120
Pru Holder, Bethan Page, Julia Hackett, Sarah Mitchell, Lorna K. Fraser

Background

Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.

Aim

Review the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance.

Methods

Rapid review following the Cochrane Rapid Reviews Methods Group Guidance. MEDLINE and EMBASE were searched for primary studies of any design and literature/systematic reviews, and grey literature searching was conducted. Sources reporting on involving parents of children with life-limiting conditions or bereaved parents in healthcare, research, or charity work in any setting, were included. Data were charted using the UK standards for public involvement in research (PPI). Two PPI consultation workshops were conducted with parents (n = 13) and healthcare professionals/charity representatives (n = 7).

Results

Six sources were included. Four reported benefits of parental involvement and two reported burdens. In relation to best practice, two reported on the importance of inclusive opportunities, three on working together, four on support and learning, three on communications, one on impact, and one on governance. PPI consultation workshops highlighted new factors which were not present in the literature around communication and understanding the impact of involvement.

Conclusion

Organisations working with this group should consider offering inclusive approaches to improve diversity, levelling power imbalances, ensuring flexibility of approach, and appropriate communication and impact.

Patient or Public Contribution

The study was conducted in collaboration with 13 parents of children with life-limiting conditions and bereaved parents, and seven palliative care professionals. The group were involved at key stages of the review and contributed to the development of the findings and conduct of the review.

背景：公众参与研究或服务规划的指导和原则是存在的，但并不是专门针对生命受限儿童的父母或失去亲人的父母的需要。目的：回顾在研究、服务规划和宣传中涉及生命受限儿童的父母和失去亲人的父母的证据，并利用这些证据制定最佳实践指南。方法：按照Cochrane快速回顾方法组指南进行快速回顾。检索MEDLINE和EMBASE中所有设计和文献/系统评价的初步研究，并进行灰色文献检索。资料来源报告了在任何情况下，有生命受限儿童的父母或失去亲人的父母参与医疗保健、研究或慈善工作的情况。数据是根据英国公众参与研究标准（PPI）绘制的。与家长（n = 13）和卫生保健专业人员/慈善机构代表（n = 7）进行了两次PPI咨询研讨会。结果：纳入6个来源。四个报告了父母参与的好处，两个报告了负担。在最佳实践方面，两家报告了包容性机会的重要性，三家报告了合作的重要性，四家报告了支持和学习的重要性，三家报告了沟通的重要性，一家报告了影响的重要性，一家报告了治理的重要性。PPI咨询研讨会强调了文献中不存在的关于沟通和理解参与影响的新因素。结论：与这个群体合作的组织应该考虑提供包容性的方法来改善多样性，平衡权力不平衡，确保方法的灵活性，以及适当的沟通和影响。患者或公众贡献：这项研究是与13名患有生命限制疾病的儿童的父母和失去亲人的父母以及7名姑息治疗专业人员合作进行的。该小组参与了审查的关键阶段，并对调查结果的发展和审查的进行作出了贡献。
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引用次数: 0
How Do We Get the Public Into Public Health Research? Learnings and Key Recommendations From Initiating a Community Involvement Project Scheme 我们如何让公众参与公共卫生研究？推行社区参与计划的经验教训及主要建议
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-12-08 DOI: 10.1111/hex.70114
Carmel McGrath, Gemma Lasseter, Noreen Hopewell- Kelly, Emma Anderson, Ellen Brooks-Pollock, Hannah Christensen, Sarah Denford, Rosie Essery, Shoba Dawson, Evelyn Schiller, Taru Silvonen, Christina Stokes, Amy Thomas, Clare Thomas, Andy Gibson

Introduction

There are many recognised benefits of public involvement, including more relevant research. The COVID-19 pandemic highlighted the existing health inequalities and disparities in access to care and treatment for under-served groups, necessitating meaningful and sustainable approaches to engaging them in health research. However, there is limited guidance to suggest what groundwork and processes are necessary for initiating such projects. This paper outlines the practical approaches taken to initiate a community involvement project scheme and offers key recommendations from this work.

Methods

The National Institute for Health and Care Research (NIHR) Health Protection Research Unit established a community involvement scheme in 2021, funding four community involvement projects enabling researchers to engage with under-served communities. Reflections were captured through regular quarterly meeting group discussions, meeting notes and email correspondence.

Results

The paper presents the steps taken to initiate a scheme that provided funding for a diverse range of projects working with under-served communities. The projects demonstrated the value of allocating time to build relationships and trust, maintaining flexibility, and providing short-term benefits such as remuneration and training to the community.

Discussion

This paper has highlighted the need for research organisations to allocate funding and resources within their infrastructures for building trusting relationships with community leaders and communities.

Conclusion

This paper has outlined the steps undertaken to engage with under-served communities to bridge the gap between public health research and those communities. We present key recommendations to guide future initiatives aspiring to engage under-served communities in health research.

Patient or Public Contribution

Public contributors have been involved in all of the four community involvement projects mentioned in this paper. Two public contributors are also co-authors and have provided input to the writing and review of this manuscript.

导言：公众参与有许多公认的益处，包括更相关的研究。COVID-19 大流行凸显了目前存在的健康不平等现象，以及服务不足群体在获得护理和治疗方面的差距，因此有必要采取有意义且可持续的方法让他们参与健康研究。然而，关于启动此类项目所需的基础工作和流程的指导却很有限。本文概述了启动社区参与项目计划的实用方法，并从中提出了重要建议：国家健康与护理研究所（NIHR）健康保护研究组于 2021 年建立了社区参与计划，资助了四个社区参与项目，使研究人员能够参与到服务不足的社区中。通过定期的季度会议小组讨论、会议记录和电子邮件通信收集反思：本文介绍了为启动一项计划所采取的步骤，该计划为与服务不足社区合作的各种项目提供资助。这些项目证明了分配时间以建立关系和信任、保持灵活性以及为社区提供报酬和培训等短期福利的价值：本文强调，研究机构需要在其基础设施中分配资金和资源，以便与社区领袖和社区建立互信关系：本文概述了为缩小公共卫生研究与服务不足社区之间的差距而采取的措施。我们提出了重要建议，以指导未来希望让服务不足社区参与健康研究的举措：公众贡献者参与了本文提及的所有四个社区参与项目。两位公众贡献者也是本文的共同作者，并为本稿件的撰写和审阅提供了意见。
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引用次数: 0
Erratum to “Recruitment and Retention of Adolescents for an Ecological Momentary Assessment Measurement Burst Mental Health Study: The MHIM Engagement Strategy” “青少年生态瞬时评估测量突发心理健康研究的招募与保留：MHIM参与策略”的勘误
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-28 DOI: 10.1111/hex.70117

A. L. Murray, T. Xie, L. Power, and L. Condon, “Recruitment and Retention of Adolescents for an Ecological Momentary Assessment Measurement Burst Mental Health Study: The MHIM Engagement Strategy,” Health Expectations 27, no. 3 (2024): e14065.

In the author information, the credentials of Luke Power were incorrectly listed as ‘MSc’ and should be corrected to ‘MA’. Additionally, the credentials of Tong Xie were incorrectly listed as ‘MSc’ and should be corrected to ‘BA’.

We apologize for this error.

“青少年心理健康的生态短暂性评估和测量：MHIM参与策略”，《健康期望》第27期，第2期。3 (2024): e14065。在作者信息中，Luke Power的证书被错误地列为“MSc”，应该更正为“MA”。此外，Tong Xie的证书错误地列出了“MSc”，应该更正为“BA”。我们为这个错误道歉。
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引用次数: 0
Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project 通过促进研究中的包容性和赋权的职权范围建立有效的患者参与：来自医疗保健转型质量指标项目的示例
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-28 DOI: 10.1111/hex.70113
Sarah E. P. Munce, Tomisin John, Dorothy Luong, Sarah Mooney, Lisa Stromquist, Kyle Chambers, Marilyn Crabtree, Sanober Diaz, Gina Dimitropoulos, Megan Henze, Amanda Higgins, Elaine Li, Samadhi Mora Severino, Melanie Penner, Jacklynn Pidduck, Michelle Wan, Laura Williams, Darryl Yates, Alene Toulany

Introduction

Patient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes. A well-developed ToR promotes a structured, inclusive, and respectful process.

Methods

Using an integrated knowledge translation (iKT) approach, we established a panel of youth, caregivers, healthcare providers, and healthcare leaders/decision-makers. Through collaborative discussions, we incorporated key elements into the ToR, including values, roles, decision-making processes, and recognition of contributions.

Results

To promote effective engagement the ToR included sections to encourage open, transparent and vulnerable dialogue, evaluation, and accommodations for disabilities. The ToR draft was reviewed and refined by panel members for clarity. Regular reviews and updates will keep the ToR a living document and adaptable to the evolving engagement process.

Conclusion

The implementation of our ToR is designed to foster inclusivity, mutual respect, and accountability, avoiding tokenistic partnership, enriching the experience for patients and researchers alike, and ultimately enhancing research quality.

患者参与研究旨在促进有意义的伙伴关系，将患者体验融入研究过程。本文描述了为支持这些有意义的伙伴关系而制定的职权范围（ToR）。虽然参与可以改善数据收集和授权，但无效的参与可能导致负面结果。一个完善的ToR促进了一个有组织、包容和尊重的过程。方法采用综合知识翻译（iKT）方法，我们建立了一个由青年、护理人员、医疗保健提供者和医疗保健领导者/决策者组成的小组。通过协作讨论，我们将关键要素纳入ToR，包括价值观、角色、决策过程和对贡献的认可。结果：为了促进有效的参与，ToR包括了鼓励公开、透明和脆弱的对话、评估和为残疾人提供便利的部分。专家组成员对ToR草案进行了审查，并对其进行了完善。定期审查和更新将使ToR成为一份活的文件，并适应不断变化的参与过程。我们的ToR的实施旨在促进包容性、相互尊重和问责制，避免象征性的伙伴关系，丰富患者和研究人员的经验，并最终提高研究质量。
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引用次数: 0
Erratum to “Preferences for Peer Support Amongst Families Engaged in Paediatric Screening Programmes: The Perspectives of Parents Involved in Screening for Type 1 Diabetes in Children Aged 3–13” 参与儿科筛查计划的家庭对同伴支持的偏好：参与 3-13 岁儿童 1 型糖尿病筛查的家长的观点"。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-27 DOI: 10.1111/hex.70115

I. Litchfield, L. M. Quinn, F. Boardman, et al., “Preferences for Peer Support Amongst Families Engaged in Paediatric Screening Programmes: The Perspectives of Parents Involved in Screening for Type 1 Diabetes in Children Aged 3–13,” Health Expectations 27, no. 4 (August 2024): e70007, https://doi.org/10.1111/hex.70007.

Surname of the sixth author needs changing from Choundhary to Choudhary.

We apologize for this error.

I.Litchfield, L. M. Quinn, F. Boardman, et al., "Preferences for Peer Support Among Families Engaged in Paediatric Screening Programmes. The Perspectives Parents Involved in Screening for Type 1 Diabetes in Children Aged 3-13," Health Expectations 27, no：参与 3-13 岁儿童 1 型糖尿病筛查的家长的观点"，《健康期望》27，no.4 (August 2024): e70007, https://doi.org/10.1111/hex.70007.Surname 的第六位作者需要从 Choundhary 改为 Choudhary。我们对此错误深表歉意。
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引用次数: 0
Healthcare Professionals' Views on the Use of Passive Sensing and Machine Learning Approaches in Secondary Mental Healthcare: A Qualitative Study 医疗保健专业人员对在二级精神医疗保健中使用被动传感和机器学习方法的看法：定性研究。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-25 DOI: 10.1111/hex.70116
Jessica Rogan, Joseph Firth, Sandra Bucci
<div> <section> <h3> Introduction</h3> <p>Globally, many people experience mental health difficulties, and the current workforce capacity is insufficient to meet this demand, with growth not keeping pace with need. Digital devices that passively collect data and utilise machine learning to generate insights could enhance current mental health practices and help service users manage their mental health. However, little is known about mental healthcare professionals' perspectives on these approaches. This study aims to explore mental health professionals' views on using digital devices to passively collect data and apply machine learning in mental healthcare, as well as the potential barriers and facilitators to their implementation in practice.</p> </section> <section> <h3> Methods</h3> <p>Qualitative semi-structured interviews were conducted with 15 multidisciplinary staff who work in secondary mental health settings. Interview topics included the use of digital devices for passive sensing, developing machine learning algorithms from this data, the clinician's role, and the barriers and facilitators to their use in practice. Interview data were analysed using reflexive thematic analysis.</p> </section> <section> <h3> Results</h3> <p>Participants noted that digital devices for healthcare can motivate and empower users, but caution is needed to prevent feelings of abandonment and widening inequalities. Passive sensing can enhance assessment objectivity, but it raises concerns about privacy, data storage, consent and data accuracy. Machine learning algorithms may increase awareness of support needs, yet lack context, risking misdiagnosis. Barriers for service users include access, accessibility and the impact of receiving insights from passively collected data. For staff, barriers involve infrastructure and increased workload. Staff support facilitated service users' adoption of digital systems, while for staff, training, ease of use and feeling supported were key enablers.</p> </section> <section> <h3> Conclusions</h3> <p>Several recommendations have arisen from this study, including ensuring devices are user-friendly and equitably applied in clinical practice. Being with a blended approach to prevent service users from feeling abandoned and provide staff with training and access to technology to enhance uptake.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>The study design, protocol and topic guide were informed by a lived exp
导言：在全球范围内，许多人都有心理健康方面的困难，而目前的劳动力能力不足以满足这一需求，其增长速度跟不上需求的增长。能够被动收集数据并利用机器学习生成洞察力的数字设备可以增强当前的心理健康实践，帮助服务用户管理自己的心理健康。然而，人们对心理保健专业人员对这些方法的看法知之甚少。本研究旨在探讨精神卫生专业人员对使用数字设备被动收集数据和在精神卫生保健中应用机器学习的看法，以及在实践中实施这些方法的潜在障碍和促进因素：对 15 名在二级精神卫生机构工作的多学科人员进行了半结构化定性访谈。访谈主题包括使用数字设备进行被动传感、从这些数据中开发机器学习算法、临床医生的角色以及在实践中使用的障碍和促进因素。访谈数据采用反思性主题分析法进行分析：结果：参与者指出，用于医疗保健的数字设备可以激发用户的积极性并增强其能力，但需要小心谨慎，以防产生被遗弃感和扩大不平等。被动传感可提高评估的客观性，但也会引发对隐私、数据存储、同意和数据准确性的担忧。机器学习算法可能会提高对支持需求的认识，但由于缺乏背景，有可能造成误诊。服务用户面临的障碍包括访问权限、可访问性以及从被动收集的数据中获得洞察力的影响。对工作人员而言，障碍包括基础设施和工作量的增加。工作人员的支持促进了服务用户对数字系统的采用，而对工作人员来说，培训、易用性和感受到支持是关键因素：本研究提出了多项建议，包括确保设备方便用户使用，并在临床实践中公平应用。采用混合方法，防止服务使用者感到被遗弃，并为员工提供培训和技术使用机会，以提高使用率：研究设计、方案和主题指南均参考了作者所在单位的一个生活经验社区小组的意见，该小组为研究项目提供建议。
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引用次数: 0
Agenda Setting in Outpatient Consultation of Older Adults With Long-COVID 为患有长期慢性视网膜病变的老年人提供门诊咨询的议程设置
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-24 DOI: 10.1111/hex.70101
Hao Zhao, Shuai Zhang, Wen Ma

Introduction

Agenda setting in doctor–patient interaction refers to the process when various agendas are presented and responded to. This study revealed how Long-COVID (LC) agenda items are managed by older adults and doctors during outpatient consultations.

Methods

Based on audio recordings, we adopted Conversation Analysis (CA) to unveil under what circumstances the patient or the doctor set the agenda and how they collaboratively work to develop an LC topic. Data was transcribed in accordance with the transcription conventions developed by Jefferson.

Results

Agendas were divided into three categories, namely primary, additional, and unmet agenda items. LC agendas were identified with specific characteristics based on qualitative analysis and older adults tended to seek more medical assistance, particularly concerning their chronic diseases. We observed that patients initiate agendas more often than doctors and it could happen at any stage of the visit, both parties can resist expanding the agenda, mostly in an indirect way, and agendas that contain more information with simpler turn-constructions are more likely to be well-addressed.

Conclusions

Better quality of consultation was found when doctors sensitively detect the emotional change and the potential issues of the patients when they prevaricate to avoid the relevance of the previous infection. The findings also suggested that understanding the dynamics of agenda setting in consultations could lead to improvements in medical visit outcomes.

Patient and Public Contribution

Patients and doctors in the study were colleagues in a university hospital. They were involved in various stages of this study to ensure it addresses real-world concerns and improves healthcare outcomes. Throughout data collection, patients contributed by allowing their consultations to be recorded and providing feedback on their experiences. Findings were discussed with a patient advisory group to ensure the interpretations aligned with patient perspectives. Doctors were also actively engaged in disseminating the results through later consultations, ensuring broad accessibility and practical application of the research outcomes.

导言：医患互动中的议程设置是指各种议程被提出并得到回应的过程。本研究揭示了在门诊就诊过程中，老年人和医生是如何处理长COVID（LC）议程项目的。 方法 根据录音，我们采用会话分析法（Conversation Analysis，CA）来揭示患者或医生在什么情况下设置议程，以及他们如何合作开发一个 LC 议题。数据按照杰斐逊制定的转录惯例进行转录。 结果 议程分为三类，即主要议程项目、附加议程项目和未满足议程项目。根据定性分析确定的健康教育议程具有特定的特征，老年人倾向于寻求更多的医疗帮助，尤其是有关慢性疾病的帮助。我们注意到，患者比医生更经常提出议程，而且可能发生在就诊的任何阶段，双方都可以抵制议程的扩展，主要是以间接的方式，而且包含更多信息、转折结构更简单的议程更有可能得到很好的处理。 结论 如果医生能敏锐地察觉到病人的情绪变化和潜在问题，当他们推诿以回避之前感染的相关性时，会发现会诊质量更高。研究结果还表明，了解会诊中议程设置的动态变化可改善就诊结果。 患者和公众的贡献 参与研究的患者和医生是一家大学医院的同事。他们参与了本研究的各个阶段，以确保研究能够解决现实世界中的问题并改善医疗效果。在整个数据收集过程中，患者都参与其中，允许对他们的就诊过程进行记录，并就他们的就诊体验提供反馈意见。研究结果与患者咨询小组进行了讨论，以确保解释符合患者的观点。医生们也积极参与，通过后期会诊传播研究成果，确保研究成果的广泛普及和实际应用。
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引用次数: 0
Understanding the Meaning of Loneliness and Social Engagement for the Workings of a Social Network Intervention Connecting People to Resources and Valued Activities 了解孤独和社会参与对社会网络干预工作的意义，将人们与资源和有价值的活动联系起来。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-22 DOI: 10.1111/hex.70111
Rebecca Band, Anne Rogers
<div> <section> <h3> Background</h3> <p>Addressing loneliness, which is associated with poor mental and physical health, implicates the need for connectivity to a broad set of situated relationships and activities in the contexts of people's everyday lives. Social engagement has been identified as a relevant psychosocial mechanism mediating health and wellness and is central to addressing loneliness. The aim here is to explore the way in which people identified as lonely conceptualise their experiences of loneliness and social engagement for the purposes of incorporating these into the design and workings of an intervention that allows people to map their social networks and connect them to community-based valued activities.</p> </section> <section> <h3> Methods</h3> <p>Semi-structured qualitative interviews were undertaken with 20 participants, aged 21–82 years old (mean age 59.7) nested within a pragmatic, community-based randomised controlled trial in the north and south of England. Participants had wide-ranging social network sizes (from 1 to 10 individuals) and reported variable impact of loneliness on their lives.</p> </section> <section> <h3> Results</h3> <p>Loneliness consisted as an absence of intimacy in the face of being surrounded by others, a sense of entrapment and boredom, lacking access to meaningful activities and difficulties in relating to others. The analysis highlighted the role that important relationships have in mediating loneliness. Individual readiness, skills and confidence in forming new connections and engaging with new activities are important barriers that exist in overcoming loneliness. For many, wider socio-political factors, such as transport provision, availability of resources and costs associated with social engagement are also important barriers which are difficult to overcome.</p> </section> <section> <h3> Implications</h3> <p>Exploring the link between feelings, experiences and meaning of loneliness and the way in which a network intervention can be incorporated offers a focus for mediating the richness and opportunities that arise from locality-based connections and collective activities in the broader social environment. However, any intervention seeking to address loneliness requires a further focus on both individual and relational factors which might contribute to addressing loneliness and increasing a sense of wellness.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>The study team
背景：孤独感与身心健康状况不佳有关，解决孤独感问题需要与人们日常生活中广泛的情景关系和活动建立联系。社会参与已被确定为一种相关的社会心理机制，它是健康和幸福的中介，也是解决孤独问题的核心。本文旨在探讨被认定为孤独的人是如何将他们的孤独体验和社会参与概念化的，以便将这些概念纳入干预措施的设计和运作中，让人们能够绘制他们的社交网络，并将他们与社区有价值的活动联系起来：对 20 名参与者进行了半结构化定性访谈，他们的年龄在 21-82 岁之间（平均年龄为 59.7 岁），这些参与者都是在英格兰北部和南部进行的一项以社区为基础的实用随机对照试验的参与者。参与者的社交网络规模各不相同（从 1 人到 10 人不等），他们报告的孤独感对其生活的影响也不尽相同：结果：孤独是指在被他人包围时缺乏亲密感、被禁锢感和无聊感、无法参加有意义的活动以及难以与他人交往。分析强调了重要的人际关系在调节孤独感方面的作用。在建立新的联系和参与新的活动方面，个人的意愿、技能和信心是克服孤独的重要障碍。对许多人来说，更广泛的社会政治因素，如交通提供、资源可用性以及与社会参与相关的费用，也是难以克服的重要障碍：探索孤独感、孤独体验和孤独意义之间的联系，以及将网络干预纳入其中的方式，为在更广泛的社会环境中调解基于地方的联系和集体活动所产生的丰富性和机会提供了一个重点。然而，任何旨在解决孤独问题的干预措施都需要进一步关注个人因素和关系因素，这些因素可能有助于解决孤独问题并增强健康感：研究小组与社区伙伴组织在本研究的各个方面密切合作，包括提交资助提案、制定研究方案和程序、招募人员、部署干预措施和评估实施情况。公众参与组织的代表就参与者材料和访谈时间表以及整个项目管理提供了建议，并为管理和指导委员会会议做出了贡献。
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引用次数: 0
Cultural Humility in Action: Learning From Refugee and Migrant Women and Healthcare Providers to Improve Maternal Health Services in Australia 行动中的文化谦逊：向难民和移民妇女及医疗服务提供者学习，改善澳大利亚的孕产妇保健服务。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-21 DOI: 10.1111/hex.70106
Delia Rambaldini-Gooding, Katarzyna Olcoń, Luke Molloy, Leissa Pitts, Sofia Lema, Eman Baghdadi, Jane Williams, Chris Degeling
<div> <section> <h3> Introduction</h3> <p>Access to culturally appropriate healthcare is vital to ensure refugee and migrant women receive optimal care, particularly during the perinatal period. Refugee and migrant women report lower satisfaction with pregnancy care due to language barriers and a perceived lack of understanding of their needs. The aim of this study is to explore how to improve the experiences of migrant and refugee women with maternal health services through the lens of cultural humility.</p> </section> <section> <h3> Methods</h3> <p>Working collaboratively with maternal health service providers and managers and local refugee and migrant women, this research project used a World Café methodology to provide these stakeholders with an opportunity to discuss maternal healthcare in the region. World Café participants (<i>n</i> = 34) included women from multicultural backgrounds (<i>n</i> = 20), maternal healthcare providers such as midwives, social workers and management (<i>n</i> = 5) multicultural healthcare providers (<i>n</i> = 7) and a community-based birth educator (<i>n</i> = 1). Data were analysed thematically.</p> </section> <section> <h3> Results</h3> <p>A key finding of the World Café was the need for staff training that is co-designed and co-delivered with members of multicultural communities and healthcare providers to enhance the practice of cultural humility. Training should focus on women's stories that capture the cultural nuances around pregnancy and birthing, their support needs including trauma-informed care, and the importance of effective cross-cultural communication.</p> </section> <section> <h3> Conclusion</h3> <p>This research gave refugee and migrant women a voice in future decision-making, specifically in maternal health staff training. The refugee and migrant women shared their perspectives on how to enhance cultural humility practices in maternity services for them. The research has led to opportunities such as community-based antenatal classes and improvements in maternity services development strategies.</p> </section> <section> <h3> Public Contribution</h3> <p>The project actively engaged with maternal healthcare providers, multicultural and refugee healthcare providers and women from multicultural communities in the design of the project and as participants. Their expertise and experience have been invaluable and have informed pilot programmes that emerged from this study.</p> </section>
导言：获得文化适宜的医疗保健服务对于确保难民和移民妇女获得最佳护理至关重要，尤其是在围产期。难民和移民妇女对孕期保健服务的满意度较低，原因是语言障碍和对她们的需求缺乏了解。本研究旨在从文化谦逊的角度探讨如何改善移民和难民妇女对孕产妇保健服务的体验：本研究项目与孕产妇保健服务提供者和管理者以及当地难民和移民妇女合作，采用 "世界咖啡馆"（World Café）的方法，为这些利益相关者提供讨论该地区孕产妇保健问题的机会。世界咖啡馆的参与者（n = 34）包括来自多元文化背景的妇女（n = 20）、助产士、社会工作者和管理人员等孕产妇保健服务提供者（n = 5）、多元文化保健服务提供者（n = 7）和社区分娩教育者（n = 1）。对数据进行了专题分析：世界咖啡馆的一个重要发现是，需要与多元文化社区成员和医疗服务提供者共同设计和提供员工培训，以加强文化谦逊的实践。培训应侧重于妇女的故事，捕捉怀孕和分娩过程中的文化细微差别、她们的支持需求（包括创伤知情护理）以及有效的跨文化沟通的重要性：这项研究让难民和移民妇女在未来的决策中，特别是在孕产妇保健人员的培训中拥有发言权。难民和移民妇女就如何在孕产妇服务中加强文化谦逊的做法分享了她们的观点。这项研究带来了一些机会，如社区产前班和孕产妇服务发展战略的改进：公众贡献：在项目设计过程中，该项目积极邀请孕产妇保健服务提供者、多元文化和难民保健服务提供者以及来自多元文化社区的妇女参与其中。他们的专业知识和经验非常宝贵，为本研究产生的试点方案提供了依据。
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引用次数: 0
Identifying Key Moments in Type 2 Diabetes Management: A Qualitative Study of the Experiences of People With Type 2 Diabetes and Diabetes Health Coaches 识别 2 型糖尿病管理中的关键时刻：关于 2 型糖尿病患者和糖尿病健康指导员经历的定性研究》。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Health Expectations
Pub Date : 2024-11-21 DOI: 10.1111/hex.70108
Jack B. Joyce, Carolyn Newbert, Nicola Guess, Kate Fryer, Caroline A. Mitchell, Liliia Bespala, Elizabeth Morris, Paul Aveyard, Susan A. Jebb, Charlotte Albury

Objective

For people with type 2 diabetes who are overweight, weight loss increases the likelihood of achieving diabetes remission. The aim here was to draw on the experiences of people living with type 2 diabetes and coaches who deliver type 2 diabetes prevention and remission programmes. This was done to develop a service that increases the proportion of people who achieve remission by identifying an effective weight management service.

Research Design and Methods

A qualitative researcher and co-researcher with type 2 diabetes conducted 37 narrative interviews with adults with type 2 diabetes (October 2022–June 2023) and 16 semi-structured interviews with health coaches delivering type 2 diabetes programmes in England. Data were analysed using Reflexive Thematic Analysis. Participants were diverse in ethnicity, socioeconomic status, age, gender and years since diabetes diagnosis.

Results

Four themes were generated relating to moments in a person's diabetes care: (1) coming to terms with diagnosis, (2) lightbulb moments, (3) sustaining change as normal and (4) becoming expert/building confidence. These four themes were united under a high-level interpretivist theme: ‘Same journey, different experience’, capturing the mismatch between a linear rigid care pathway described by coaches and the diversity of experience of people living with type 2 diabetes.

Conclusions

Coaches and people with type 2 diabetes are aligned on their reports of key moments in adapting to diabetes. Participants’ desire for flexibility in their care contrasted with coach reports of rigid service provision. These insights may enable more people with type 2 diabetes to engage and adhere to weight management services aimed at diabetes remission.

目的：对于超重的 2 型糖尿病患者来说，减轻体重可增加糖尿病缓解的可能性。本文旨在借鉴 2 型糖尿病患者和提供 2 型糖尿病预防和缓解计划的教练的经验。这样做的目的是通过确定有效的体重管理服务来开发一种服务，以提高实现缓解的人数比例：一名定性研究人员和一名患有 2 型糖尿病的合作研究人员对英格兰的 2 型糖尿病成人患者进行了 37 次叙述式访谈（2022 年 10 月至 2023 年 6 月），并对提供 2 型糖尿病项目的健康教练进行了 16 次半结构式访谈。数据采用反思性主题分析法进行分析。参与者的种族、社会经济地位、年龄、性别和糖尿病诊断年限各不相同：结果：得出了与糖尿病患者护理过程中的时刻有关的四个主题：(1) 接受诊断，(2) 亮灯时刻，(3) 保持正常变化，(4) 成为专家/建立信心。这四个主题被归纳为一个高层次的解释学主题："相同的旅程，不同的经历"，反映了教练所描述的线性僵化护理路径与 2 型糖尿病患者经历的多样性之间的不匹配：结论：教练和 2 型糖尿病患者对适应糖尿病的关键时刻的报告是一致的。参与者对灵活护理的渴望与教练对僵化服务的报告形成了鲜明对比。这些见解可能会让更多的 2 型糖尿病患者参与并坚持体重管理服务，从而达到缓解糖尿病的目的。
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