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The mediating role of coping in the relationship between perceived health and psychological wellbeing in recurrent urinary tract infection: the rUTI Illness Process Model. 应对措施在复发性尿路感染患者的健康感知与心理健康之间的中介作用:尿路感染疾病过程模型。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-11-03 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2420806
Abigail F Newlands, Melissa L Kramer, Kayleigh Maxwell, Jessica L Price, Katherine A Finlay

Background: Recurrent urinary tract infection (rUTI) is associated with significant symptom and quality of life burden. Given the unique challenges in diagnostics and management, healthcare disillusionment and stigmatisation which distinguish rUTI from other urological conditions, specific identification of the key illness processes experienced by this patient population is required. This study aimed to identify the unique illness processes and perceptions that contribute to quality of life in rUTI, through perceived health status, psychological wellbeing, and coping. Methods: An international sample of adults living with rUTI (N = 389, 96.9% female) completed a cross-sectional survey comprising the following standardised questionnaires: the EuroQoL EQ-5D-5L, Patient Health Questionnaire 9 (PHQ-9), Generalised Anxiety Disorder 7 (GAD-7), Connor-Davidson Resilience Scale-10 (CD-RISC-10), Pain Catastrophising Scale (PCS). Sociodemographic characteristics were also assessed. Structural equation modelling was conducted to identify the underlying constructs which contributed to psychological wellbeing in rUTI, establishing the 'rUTI Illness Process Model'. Results: The positive relationship between 'perceived health status' and 'psychological wellbeing' was partially mediated by 'rUTI coping', after controlling for the impact of household income and age (p < .001). The model demonstrated a large effect size (R 2 = .81) and good local and global fit. Overall, rUTI coping skills, boosted by resilience and weakened by pain catastrophising, contribute to a significant proportion of the positive relationship between perceived health status and psychological wellbeing in rUTI. A uniquely vulnerable patient phenotype emerges from this new research, with patients who are younger and/or of lower socioeconomic status at greater risk of poorer rUTI health outcomes and psychological wellbeing, potentially requiring further support. Conclusions: The rUTI Illness Process Model establishes the crucial need to clinically characterise the individualised illness perceptions and metacognitive strategies held by people living with rUTI, revealing that patient-centred interventions targeting illness perceptions and coping strategies require prioritisation to enhance patient outcomes and the patient experience of living with rUTI.

背景:复发性尿路感染(rUTI)与严重的症状和生活质量负担有关。鉴于复发性尿路感染与其他泌尿系统疾病不同,在诊断和管理方面存在独特的挑战、医疗保健的失望和耻辱感,因此需要具体确定该患者群体所经历的关键疾病过程。本研究旨在通过感知健康状况、心理健康和应对措施,确定有助于提高尿路感染患者生活质量的独特疾病过程和感知。研究方法一个由患有急性尿路感染的成年人(N = 389,96.9% 为女性)组成的国际样本完成了一项横断面调查,其中包括以下标准化问卷:EuroQoL EQ-5D-5L、Patient Health Questionnaire 9 (PHQ-9)、Generalised Anxiety Disorder 7 (GAD-7)、Connor-Davidson Resilience Scale-10 (CD-RISC-10)、Pain Catastrophising Scale (PCS)。此外,还对社会人口学特征进行了评估。通过建立结构方程模型,确定了导致急性尿路感染患者心理健康的基本结构,建立了 "急性尿路感染疾病过程模型"。结果显示在控制了家庭收入和年龄的影响后(p R 2 = .81),"感知健康状况 "和 "心理健康 "之间的正向关系部分由 "rUTI 应对 "调节,且局部和整体拟合良好。总之,在急性尿路感染患者的健康状况感知与心理健康之间的正相关关系中,急性尿路感染应对技能占了相当大的比例,这种应对技能因恢复能力而增强,因疼痛灾难化而减弱。这项新研究发现了一种独特的脆弱患者表型,即年龄较轻和/或社会经济地位较低的患者更有可能出现较差的急性肠梗阻健康状况和心理健康,因此可能需要进一步的支持。结论急性尿路感染疾病过程模型确定了临床上描述急性尿路感染患者个性化疾病认知和元认知策略的关键需求,揭示了以患者为中心、针对疾病认知和应对策略的干预措施需要优先考虑,以提高患者的治疗效果和急性尿路感染患者的生活体验。
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引用次数: 0
Cognitive emotional regulation in physiotherapy students in Croatia. 克罗地亚物理治疗专业学生的认知情绪调节。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-10-25 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2419842
Manuela Filipec, Anica Kuzmić, Marina Ćurlin, Pavao Vlahek

Background: Cognitive emotional regulation refers to a conscious or unconscious process that affects an individual's emotions and the physical and mental health of the individual. The aim of this study was to detect strategies of cognitive emotional regulation used by physiotherapy students in stressful situations.

Methods: The study was conducted from January to March 2022 and enrolled 372 students. An announcement was posted electronically on the web page of each physiotherapy study in Croatia, inviting students to participate in the study. Each participant provided written informed consent. The Cognitive Emotion Regulation Questionnaire was used in the study for detecting cognitive emotional strategies that students use in stressful situations. Statistical analysis of data included descriptive statistics of data groups where values were expressed as mean and standard deviation. The Kolmogorov-Smirnov test was used to test the normality of the distribution. To test the differences between two independent groups, the Mann-Whitney U rank sum test was applied, while the non-parametric Kruskal-Wallis test was used to test the differences of several subgroups of variables. Categorical variables were tested with Fischer's exact test or chi-square test.

Results: The most frequently used emotional cognitive regulation strategies are acceptance and positive reappraisal. There is a statistically significant difference in the use of self-blame (p < .001), rumination (p < .001) and blaming others (p = 0.018) in relation to gender. Also, there is a statistically significant difference in the use of acceptance (p = 0.022), rumination (p < .001) and blaming others (p = 0.049) in relation to the year of study.

Conclusion: Education of physiotherapy students to the use of adaptive strategies could have a positive effect on the students' learning quality, their decision-making abilities and the quality of physiotherapy provided to patients. Encouraging physiotherapy students to engage in cognitively adaptive ways of thinking can serve as a solid method to help students in an academic and professional environment.

背景:认知情绪调节是指影响个人情绪和身心健康的有意识或无意识过程。本研究旨在检测物理治疗专业学生在压力情况下使用的认知情绪调节策略:研究于 2022 年 1 月至 3 月进行,共招募了 372 名学生。克罗地亚各物理治疗专业的网页上都以电子形式发布了公告,邀请学生参与研究。每位参与者都提供了书面知情同意书。研究中使用了认知情绪调节问卷,以检测学生在压力情况下使用的认知情绪策略。数据统计分析包括数据组的描述性统计,数值以平均值和标准差表示。采用 Kolmogorov-Smirnov 检验法检验分布的正态性。为了检验两个独立组之间的差异,采用了 Mann-Whitney U 秩和检验,而非参数 Kruskal-Wallis 检验则用于检验几个变量分组之间的差异。分类变量采用费舍尔精确检验或卡方检验:最常用的情绪认知调节策略是接受和积极的再评价。在使用自责策略方面,性别差异有统计学意义(p p = 0.018)。此外,接受(p = 0.022)和反刍(p p = 0.049)的使用与学习年限也有统计学差异:对物理治疗专业学生进行使用适应性策略的教育,可对学生的学习质量、决策能力和为患者提供物理治疗的质量产生积极影响。鼓励物理治疗专业学生采用认知适应性思维方式,是帮助学生在学术和专业环境中学习的可靠方法。
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引用次数: 0
Look, over there! A streaker! - Qualitative study examining streaking as a behaviour change technique for habit formation in recreational runners. 看那边一个裸跑者- 一项定性研究,将 "连跑带跳 "作为改变休闲跑步者习惯的一种行为技术。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-10-21 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2416505
Meghan Curran, Nicholas Larade, Gözde Özakinci, Gabriela Tymowski-Gionet, Stephan U Dombrowski

Background: Running as a form of physical activity is beneficial to overall health and wellbeing. The aim of the study is to examine 'run streaking' (i.e. running on consecutive days, for a minimum period of time or distance, typically at least one mile) as a technique for habit formation and behaviour change.

Methods: Qualitative semi-structured interviews with 21 recreational adult runners (11 female and 10 male). Run streak length ranged from a minimum of 100 days to over 4500 days. Transcripts were analysed using a hybrid deductive-inductive thematic analysis.

Results: Run streaking was reported to lead to several benefits, health improvements and a sense of accomplishment, although many run streakers reported running through injuries and lack of recovery. Accounts of run streaking showed features of automaticity indicative of habitual behaviour. Other behavioural processes identified included motivation, identity, self-regulation and social support. Behavioural streaking showed the potential to influence change in behaviours other than running.

Conclusion: Accounts of run streaking demonstrate an interplay between automatic and deliberate processes in the maintenance of running behaviour. Behavioural streaking is a technique that could be used in other behaviour change contexts beyond running to support habit formation.

背景:跑步作为一种体育锻炼方式,对整体健康和福祉大有裨益。本研究的目的是探讨 "连跑"(即连续几天跑步,至少跑一段时间或一段距离,通常至少一英里)作为一种习惯养成和行为改变的技术:对 21 名休闲成年跑步者(11 名女性和 10 名男性)进行了半结构式定性访谈。跑步时间从最少 100 天到超过 4500 天不等。采用演绎-归纳混合主题分析法对访谈记录进行分析:据报告,跑步能带来多种益处、健康改善和成就感,但许多跑步者表示跑步时受伤,缺乏恢复能力。关于连跑的描述显示出习惯性行为的自动性特征。其他行为过程包括动机、认同、自我调节和社会支持。连跑行为显示出影响跑步以外行为变化的潜力:结论:对连跑的描述表明,在维持跑步行为的过程中,自动过程和有意过程之间存在相互作用。行为连跑法是一种技术,可用于跑步以外的其他行为改变情境,以支持习惯养成。
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引用次数: 0
Factors influencing health-related quality of life of children with overweight and obesity in Kuala Lumpur, Malaysia. 影响马来西亚吉隆坡超重和肥胖儿童健康相关生活质量的因素。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-10-16 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2413980
Shazana Rifham Abdullah, Hoe Victor Chee Wai, Zahari Ishak, Siti Sarah Hamzah, Ahmad Kamil Nur Zati Iwani, Ruziana Mona Wan Mohd Zin, Abqariyah Yahya

Introduction: Overweight and obesity among children may have psychological consequences, with potentially lasting effects on health-related quality of life (HRQOL). The aims of this study were to compare HRQOL across weight status among children and to determine the factors influencing HRQOL among children with overweight and obesity.

Methods: This cross-sectional study involved school children aged 9-16 years that were recruited from eight randomly selected primary and secondary schools in Kuala Lumpur. The validated Malay version of Pediatric Quality of Life Inventory (PedsQL) was used to measure HRQOL. Complex sample general linear model was used to determine the significant factors associated with HRQOL among children with overweight and obesity.

Results: From 928 students, 41.2% (n= 375) of them had either overweight or obesity. Children with obesity reported lower overall HRQOL, physical functioning, social functioning, and psychosocial health summary, compared to normal weight children. In the final model, children with obesity had significantly lower HRQOL and physical functioning compared to children who were overweight, while those who lived with a single parent reported poorer HRQOL compared to children who lived with both parents. Children with history of being bullied had lower HRQOL and psychosocial health. Whereas those with lower self-esteem reported significantly lower scores in all three domains.

Conclusion: Overweight and obesity have negative impacts on HRQOL of children. Among children with overweight and obesity, factors such as degree of obesity, family structure, history of being bullied, and self-esteem were found to be significantly associated with HRQOL. Therefore, assessing and managing HRQOL should be included as a part of the obesity prevention programme.

导言:儿童超重和肥胖可能会造成心理后果,并对健康相关生活质量(HRQOL)产生潜在的持久影响。本研究旨在比较不同体重状况儿童的 HRQOL,并确定影响超重和肥胖儿童 HRQOL 的因素:这项横断面研究涉及从吉隆坡随机挑选的八所中小学中招募的 9-16 岁学龄儿童。采用经过验证的马来语版儿科生活质量量表(PedsQL)来测量HRQOL。复杂样本一般线性模型用于确定与超重和肥胖儿童的 HRQOL 相关的重要因素:在 928 名学生中,41.2%(n = 375)的学生患有超重或肥胖症。与体重正常的儿童相比,肥胖儿童的总体 HRQOL、身体功能、社会功能和社会心理健康总结均较低。在最终模型中,与超重儿童相比,肥胖儿童的 HRQOL 和身体机能明显较低,而与单亲生活的儿童相比,与双亲生活的儿童的 HRQOL 较差。曾受欺凌的儿童的 HRQOL 和社会心理健康水平较低。结论:超重和肥胖会对儿童的健康产生负面影响:结论:超重和肥胖对儿童的 HRQOL 有负面影响。在超重和肥胖儿童中,肥胖程度、家庭结构、受欺负史和自尊等因素与 HRQOL 有显著相关性。因此,应将评估和管理 HRQOL 作为预防肥胖计划的一部分。
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引用次数: 0
Navigating post-ICU care: understanding family members' experiences - a qualitative study. 重症监护室术后护理导航:了解家庭成员的经历--一项定性研究。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-10-11 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2415394
Matteo Danielis, Alessandro Garau, Dina Molaro, Sara Gentilini, Marika Rosset, Serena Giorgino, Federica Vuerich, Renzo Zanotti, Lorenza Entilli

Background: Comprehending and addressing the needs of caregivers during the post-intensive care unit (ICU) phase is vital for establishing sustainable support systems and improving the overall quality of life (QoL) for both patients and caregivers.

Objective: To explore the experiences of family members (FMs) caring for loved ones three-months after ICU discharge and their related QoL.

Methods and measures: A qualitative, descriptive research was conducted. Participants were recruited from two general ICUs in an Italian Academic Hospital. Data collection lasted two months and was performed with telephonic interviews led by ICU nurses. Thematic analysis was conducted using a hybrid approach, incorporating both deductive and inductive coding strategies. This process has been facilitated by Atlas.ti software.

Results: Twenty-four FMs participated, representing a diverse range of familial relationships with the patients. Thematic analysis revealed four overarching themes: 1) QoL underwent transformations; 2) Positive emotions laden with significance; 3) Supporting role taken on by a caregiver; and 4) Life's transience through the meaning-making of the illness event. These themes highlighted the multifaceted nature of the caregiving experience.

Conclusions: This study provides valuable insights into the challenges and dynamics faced by FMs following ICU discharge. Findings underscore the importance of addressing environmental challenges, cultivating positive emotions, and strengthening caregiver-patient relationships to enhance the caregiving experience and promote overall QoL. FMs can adapt their personal concepts and reach their full potential by learning to coexist with the demanding role of caregiver and achieve a new level of resilience and fulfillment.

背景:了解并满足重症监护室(ICU)后期护理人员的需求对于建立可持续的支持系统以及改善患者和护理人员的整体生活质量(QoL)至关重要:目的:探讨 ICU 出院三个月后家庭成员(FMs)照顾亲人的经历及其相关的 QoL:方法和措施:采用描述性定性研究方法。参与者来自意大利一家学术医院的两个普通重症监护室。数据收集工作持续了两个月,由重症监护室的护士主导进行电话访谈。采用混合方法进行了主题分析,包括演绎和归纳编码策略。Atlas.ti软件为这一过程提供了便利:结果:24 位家庭医生参加了此次访谈,他们代表了与患者之间不同的家庭关系。主题分析揭示了四个首要主题:1)QoL 发生转变;2)积极情绪充满意义;3)照顾者扮演的支持角色;以及 4)通过疾病事件的意义建构实现生命的短暂性。这些主题突出了护理经验的多面性:本研究为了解家政人员在重症监护室出院后所面临的挑战和动态变化提供了宝贵的见解。研究结果强调了应对环境挑战、培养积极情绪和加强护理者与患者之间关系的重要性,以增强护理体验和提高整体 QoL。家政服务人员可以调整个人观念,通过学习如何与要求苛刻的护理人员角色共存来充分发挥自己的潜能,并达到一个新的复原力和成就感水平。
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引用次数: 0
Supporting General Practitioners and people with hypertension to maximise medication use to control blood pressure: the contribution of Collective Intelligence to the development of the 'Maximising Adherence, Minimising Inertia' (MIAMI) intervention. 支持全科医生和高血压患者最大限度地使用药物控制血压:集体智慧对开发 "最大限度地坚持用药,最大限度地减少惰性"(MIAMI)干预措施的贡献。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-09-19 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2404038
Eimear C Morrissey, Owen M Harney, Michael J Hogan, Patrick J Murphy, Louise O'Grady, Molly Byrne, Monica Casey, Sinead Duane, Hannah Durand, Peter Hayes, Caroline McDevitt, Denis Mockler, Martin Murphy, Patrick Towers, Andrew W Murphy, Gerard J Molloy

Background: Hypertension remains one of the most important modifiable risk factors for stroke and heart disease. Anti-hypertensive medications are effective, but are often not used to maximum benefit. Sub-optimal dosing by prescribers and challenges with medication-taking for patients remain barriers to effective blood pressure control.

Objectives: We aimed to systematically develop a theory-based complex intervention to support General Practitioners (GPs) and people with hypertension to maximise medication use to control blood pressure.

Methods: We used the three-phase Behaviour Change Wheel (BCW) as the overarching intervention development framework. Collective Intelligence methodology was used to operationalise the stakeholder input to Phases 2 and 3 of the BCW. This took the form of a Collective Intelligence workshop with 19 stakeholders from diverse backgrounds including lived experience, general practice, nursing, pharmacy and health psychology. Techniques such as barrier identification, idea-writing and scenario-based design were used to generate possible intervention options. Intervention options were then selected and refined using the Acceptability, Practicability, Effectiveness, Affordability, Side-effects and Equity (APEASE) criteria and guidance from the MIAMI Public and Patient Involvement Panel.

Results: The finalised MIAMI intervention consists of both GP and patient supports. GP supports include a 30-minute online training, information booklet and consultation guide (drop-down menu) embedded within the patient electronic health system. Patient supports include a pre-consultation plan, website, and a structured GP consultation with results from an Ambulatory Blood Pressure Monitor and urine chemical adherence test. The intervention components have been mapped to the intervention functions of the BCW and Behaviour Change Technique Ontology.

Conclusion: Collective Intelligence offered a novel method to operationalise stakeholder input to Phases 2 and 3 of the BCW. The MIAMI intervention is now at pilot evaluation stage.

背景:高血压仍然是中风和心脏病最重要的可改变风险因素之一。抗高血压药物是有效的,但往往不能发挥最大疗效。处方者的用药剂量不够理想以及患者在服药方面遇到的挑战仍然是有效控制血压的障碍:我们旨在系统地开发一种基于理论的综合干预措施,以支持全科医生(GP)和高血压患者最大限度地使用药物控制血压:方法:我们使用三阶段行为改变轮(BCW)作为总体干预开发框架。集体智慧"(Collective Intelligence)方法用于将利益相关者对 BCW 第二和第三阶段的意见进行操作化。该方法采用了集体智慧研讨会的形式,来自生活经验、全科实践、护理、药学和健康心理学等不同背景的 19 名利益相关者参加了研讨会。研讨会采用了障碍识别、构思写作和情景设计等技术来生成可能的干预方案。然后,根据可接受性、实用性、有效性、可负担性、副作用和公平性(APEASE)标准以及 MIAMI 公众和患者参与小组的指导,对干预方案进行选择和完善:最终确定的 MIAMI 干预措施包括全科医生支持和患者支持。全科医生支持包括 30 分钟的在线培训、信息手册以及嵌入患者电子健康系统的咨询指南(下拉菜单)。患者支持包括会诊前计划、网站和全科医生结构化会诊,以及动态血压监测仪和尿液化学依从性测试的结果。干预组件已与 BCW 和行为改变技术本体的干预功能进行了映射:结论:"集体智慧 "提供了一种新颖的方法,将利益相关者对《巴塞尔公约》第 2 和第 3 阶段的意见可操作化。MIAMI干预目前正处于试点评估阶段。
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引用次数: 0
Coping strategies mediated the relationship between perceived stress and hair cortisol among socioeconomically marginalized parents. 在社会经济边缘化的父母中,应对策略是感知压力与头发皮质醇之间关系的中介。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-09-07 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2399211
Jiying Ling, Sisi Chen, Maya Marina

Objective: This study aimed to (1) examine coping strategies and their relationship with demographics, perceived stress, and hair cortisol; and (2) explore whether coping partially mediated the relationship between perceived stress and hair cortisol.

Methods: Baseline data from 191 socioeconomically marginalized parents enrolled in two community-based clinical trials were used. The IBM SPSS Statistics Version 27 and Mplus Version 8 were used for data analyses.

Results: Parents' engagement in various coping strategies differed by age, ethnicity, race, marital status, education level, and number of children living in the household. Parents' use of problem-focused (instrumental support, planning), emotion-focused (venting, self-blame), and avoidant coping (self-distraction, denial, behavioral disengagement) increased from having low to moderate stress. However, when perceived stress increased from moderate to high, their use of emotion-focused and avoidant coping increased significantly, but problem-focused coping did not. Emotion-focused coping lowered the influence of perceived stress on hair cortisol, while avoidant coping increased the relationship between perceived stress and hair cortisol.

Conclusions: Although needing future investigation with longitudinal studies, the results suggest the need of promoting adaptive emotion-focused coping (emotional support, venting, and humor) to help socioeconomically marginalized parents manage their appraised overwhelming and uncontrollable stressors of food, house, and income insecurity.

研究目的本研究旨在:(1)研究应对策略及其与人口统计学、感知压力和毛发皮质醇之间的关系;(2)探讨应对策略是否部分介导了感知压力和毛发皮质醇之间的关系:方法:使用了参加两项社区临床试验的 191 名社会经济边缘化父母的基线数据。数据分析采用 IBM SPSS 统计 27 版和 Mplus 8 版:不同年龄、民族、种族、婚姻状况、教育水平和家中子女数量的父母在采用各种应对策略方面存在差异。从低度压力到中度压力,家长使用的以问题为中心的应对策略(工具支持、计划)、以情绪为中心的应对策略(发泄、自责)和回避型应对策略(自我疏远、否认、行为脱离)都有所增加。然而,当感知到的压力从中度增加到高度时,他们使用的以情绪为中心的应对方法和回避型应对方法显著增加,但以问题为中心的应对方法却没有增加。以情绪为中心的应对方式降低了感知到的压力对头发皮质醇的影响,而回避型应对方式则增加了感知到的压力与头发皮质醇之间的关系:尽管还需要进行纵向研究,但研究结果表明,有必要促进以情绪为中心的适应性应对(情感支持、发泄和幽默),以帮助社会经济边缘化的父母管理他们所感知到的食物、房屋和收入不安全等难以承受和无法控制的压力。
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引用次数: 0
The Seattle Amyotrophic Lateral Sclerosis (ALS) Patient Project Database: observational, longitudinal, dyadic characterization of people with ALS and their partners. 西雅图肌萎缩侧索硬化症(ALS)患者项目数据库:对 ALS 患者及其伴侣的观察性、纵向、双亲特征描述。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-09-04 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2396137
Suzanne C Segerstrom, Edward J Kasarskis

Introduction: The median survival time in ALS is approximately 3 years, but survival times range from less than a year to more than 10 years and much variance in disease course remains to be explained. As is true for physical outcomes, there is considerable variance in QOL, which is influenced by psychological health, coping, and social support, among other psychosocial factors. The Seattle ALS Patient Project Database (SALSPPD) provides a unique opportunity for researchers to address established and novel hypotheses about disease progression and QOL in ALS.

Methods: The SALSPPD is a longitudinal dataset of people with ALS (n = 143) and their partners (spouses, significant others, or caregivers; n = 123) from clinics and community-based ALS support groups. Participants were interviewed in their homes every 3 months for up to 18 months between March 1987 and August 1989. Follow-up phone calls were completed in 1990, 1994, and 2008, primarily to ascertain disease outcomes.

Results: The provided data dictionary includes details of the over 500 variables measured in the study, which have been subsetted into domain datasets. Domains address physical, psychological, social, and behavioral status on the person with ALS and their partners. Missing data were coded according to their mechanism. Data are available in two formats: The person-level (wide) databases and the time-level (long) databases.

Discussion: The SALSPPD will provide a rich resource to scientists interested in the natural history of ALS, psychosocial effects on ALS outcomes and vice versa, and psychosocial and disease outcomes of treatments.

简介:肌萎缩性脊髓侧索硬化症的中位存活时间约为 3 年,但存活时间从不到 1 年到超过 10 年不等,病程中的许多差异仍有待解释。与身体状况一样,患者的生活质量也存在相当大的差异,这主要受到心理健康、应对能力和社会支持等社会心理因素的影响。西雅图 ALS 患者项目数据库(SALSPPD)为研究人员提供了一个独特的机会,以解决有关 ALS 疾病进展和 QOL 的既有假设和新假设:SALSPPD 是一个纵向数据集,包含来自诊所和社区 ALS 支持小组的 ALS 患者(n = 143)及其伴侣(配偶、重要他人或照顾者;n = 123)。1987 年 3 月至 1989 年 8 月期间,每隔 3 个月在参与者家中对其进行长达 18 个月的访谈。1990年、1994年和2008年进行了电话随访,主要是为了确定疾病的治疗效果:所提供的数据字典包括研究中测量的 500 多个变量的详细信息,这些变量已被细分为多个领域数据集。域涉及 ALS 患者及其伴侣的身体、心理、社会和行为状况。缺失数据根据其机制进行编码。数据有两种格式:讨论:SALSPPD将为对ALS自然史、社会心理对ALS结果的影响(反之亦然)以及治疗的社会心理和疾病结果感兴趣的科学家提供丰富的资源。
{"title":"The Seattle Amyotrophic Lateral Sclerosis (ALS) Patient Project Database: observational, longitudinal, dyadic characterization of people with ALS and their partners.","authors":"Suzanne C Segerstrom, Edward J Kasarskis","doi":"10.1080/21642850.2024.2396137","DOIUrl":"10.1080/21642850.2024.2396137","url":null,"abstract":"<p><strong>Introduction: </strong>The median survival time in ALS is approximately 3 years, but survival times range from less than a year to more than 10 years and much variance in disease course remains to be explained. As is true for physical outcomes, there is considerable variance in QOL, which is influenced by psychological health, coping, and social support, among other psychosocial factors. The Seattle ALS Patient Project Database (SALSPPD) provides a unique opportunity for researchers to address established and novel hypotheses about disease progression and QOL in ALS.</p><p><strong>Methods: </strong>The SALSPPD is a longitudinal dataset of people with ALS (<i>n</i> = 143) and their partners (spouses, significant others, or caregivers; <i>n</i> = 123) from clinics and community-based ALS support groups. Participants were interviewed in their homes every 3 months for up to 18 months between March 1987 and August 1989. Follow-up phone calls were completed in 1990, 1994, and 2008, primarily to ascertain disease outcomes.</p><p><strong>Results: </strong>The provided data dictionary includes details of the over 500 variables measured in the study, which have been subsetted into domain datasets. Domains address physical, psychological, social, and behavioral status on the person with ALS and their partners. Missing data were coded according to their mechanism. Data are available in two formats: The <i>person-level</i> (wide) databases and the <i>time-level</i> (long) databases.</p><p><strong>Discussion: </strong>The SALSPPD will provide a rich resource to scientists interested in the natural history of ALS, psychosocial effects on ALS outcomes and vice versa, and psychosocial and disease outcomes of treatments.</p>","PeriodicalId":12891,"journal":{"name":"Health Psychology and Behavioral Medicine","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11376292/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142139880","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Facilitators and barriers of technology adoption and social connectedness among rural older adults: a qualitative study. 农村老年人采用技术和社会联系的促进因素和障碍:一项定性研究。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-09-02 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2398167
Carina K Y Chan, Kayla Burton, Rebecca L Flower

Background: Social disconnection is a public health concern among rural Australian older adults. While research suggests technology can enhance social wellbeing and protect against social disconnection, many older adults are not digitally literate, and little is known as to why and how technology adoption could be promoted in rural contexts. This study aimed to (1) explore the barriers and facilitators of technology adoption among rural older adults and (2) determine the potential utility of technology to promote social connectedness in the aged population. The Theoretical Domains Framework and the Behaviour Change Wheel (BCW) were employed to gain a comprehensive understanding of the digital and social behaviours of rural Australian older adults.

Methods: Semi-structured interviews were conducted with a convenience sample of 33 rural older adults aged between 65 and 87 years. Interviews were conducted over the phone, audio-recorded, and transcribed. Interview transcripts were coded and analysed using thematic analysis and the BCW.

Results: Numerous barriers and facilitators of technology adoption were identified, with the most prominent being knowledge, perceived value, perceived self-efficacy, and social support. Findings suggest that older adults' technology adoption is not simply a technical matter, but influenced by various individual, social, and environmental contexts. Consideration of these factors during development, marketing, training and implementation may facilitate technology adoption among older adults. With regard to social connectedness, several rural barriers emerged, including low population density, geographic isolation, limited community opportunities and poor public transport infrastructure.

Conclusion: Technology was consistently identified as a facilitator of the social experience, indicating that technology is a promising tool to enhance social connectedness among older adults, particularly those living in rural areas. Future research should focus on enhancing the capability, opportunity and motivation of older adults in technology adoption, with reference to the rural contexts.

背景与社会脱节是澳大利亚农村地区老年人的一个公共健康问题。虽然研究表明,技术可以提高社会福利并防止社会脱节,但许多老年人并不懂数字技术,而且对于为什么以及如何在农村环境中促进技术应用也知之甚少。本研究旨在:(1)探讨农村老年人采用技术的障碍和促进因素;(2)确定技术在促进老年人群社会联系方面的潜在效用。研究采用了理论领域框架和行为改变轮(BCW)来全面了解澳大利亚农村老年人的数字和社交行为:对 33 名年龄在 65 至 87 岁之间的农村老年人进行了半结构化访谈。访谈通过电话进行,并进行了录音和转录。采用主题分析法和 BCW 对访谈记录进行编码和分析:结果:发现了许多技术应用的障碍和促进因素,其中最突出的是知识、感知价值、感知自我效能和社会支持。研究结果表明,老年人采用技术不仅仅是一个技术问题,还受到个人、社会和环境等多方面因素的影响。在开发、营销、培训和实施过程中考虑这些因素可能会促进老年人对技术的采用。在社会联系方面,出现了一些农村障碍,包括人口密度低、地理位置偏僻、社区机会有限和公共交通基础设施落后:结论:技术一直被认为是社会体验的促进因素,这表明技术是增强老年人(尤其是生活在农村地区的老年人)社会联系的一种有前途的工具。今后的研究应侧重于提高老年人采用技术的能力、机会和动力,并考虑到农村的具体情况。
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引用次数: 0
The interrelationship between women's help-seeking experiences for vaginismus and their sense of self: a qualitative study and abductive analysis. 妇女的阴道炎求助经历与自我意识之间的相互关系:定性研究与归纳分析。
IF 2.4 Q2 PSYCHOLOGY, CLINICAL Pub Date : 2024-08-29 eCollection Date: 2024-01-01 DOI: 10.1080/21642850.2024.2396134
Rashmi Pithavadian, Tinashe Dune, Jane Chalmers, Vijayasarathi Ramanathan

Objective: There is a lack of research on women's holistic experiences of vaginismus, also called sexual pain-penetration disorder, from their perspective. To address this gap, an abductive qualitative study aimed to examine women's help-seeking experiences for vaginismus, and its impact on their sense of self.

Methods: This study was informed by a feminist approach to the theory of self focused on participants' negotiation of dis/empowerment when help-seeking for vaginismus. Twenty-one participants aged 19-37 years (mean 27.6 years) and diagnosed with vaginismus in Australia participated in semi-structured interviews, which were thematically analysed.

Results: Three themes were developed: Interconnected constructions of womanhood and help-seeking, Elicit agency to move forward, Resilience to surmount challenges with subthemes. Participant's overall help-seeking experiences, within and outside the healthcare system, shaped their sense of self in ways that drove their approach/es to future help-seeking behaviours.

Conclusions: Positive help-seeking experiences for vaginismus strengthened participants' sense of self to persevere with treatment even when it was difficult. Conversely, negative help-seeking experiences led to participants' weakened sense of self which was often caused by a gap between their ideal and perceived self. This led to negative feelings and responses of demotivation or halting subsequent help-seeking. Recommendations are provided to improve health professional practice to support women help-seeking for vaginismus, and to help close the gap between their ideal and perceived selves. Such insight can help to empower women's sense of self and motivate them to persevere with help-seeking to experience improvement for their vaginismus and quality of life.

研究目的目前还缺乏从女性角度出发,研究女性对阴道炎(又称性疼痛-插入障碍)的整体体验。为了填补这一空白,我们开展了一项归纳定性研究,旨在考察女性在阴道炎方面的求助经历及其对自我意识的影响:本研究以女性主义自我理论为基础,重点关注参与者在阴道炎求助过程中对 "失落"/"赋权 "的协商。21 名年龄在 19-37 岁(平均 27.6 岁)、在澳大利亚被诊断患有阴道炎的参与者参加了半结构化访谈,并对访谈结果进行了主题分析:结果:形成了三个主题:三个主题分别是:女性身份与寻求帮助之间的相互关联、激发向前迈进的动力、克服挑战的韧性,以及次主题。参与者在医疗保健系统内外的总体求助经历塑造了她们的自我意识,这些自我意识推动了她们今后的求助行为:结论:积极的阴道炎求助经历增强了参与者的自我意识,使他们在治疗过程中即使遇到困难也能坚持下去。相反,消极的求助经历则会削弱参与者的自我意识,这往往是由于理想自我与认知自我之间的差距造成的。这导致了消极情绪和反应,使他们失去动力或停止了后续的求助。本研究提出了一些建议,以改善医疗专业人员的工作,支持妇女寻求阴道炎方面的帮助,并帮助她们缩小理想自我与认知自我之间的差距。这种洞察力有助于增强妇女的自我意识,激励她们坚持寻求帮助,从而改善阴道炎状况,提高生活质量。
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引用次数: 0
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Health Psychology and Behavioral Medicine
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