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Experiences of service and diagnosis among immigrant families of young children with suspected or diagnosed developmental disabilities. 有疑似或确诊发育障碍幼儿的移民家庭在服务和诊断方面的经验。
IF 3.1 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-09-17 DOI: 10.1080/13557858.2024.2402537
Emma Pearson,Maxwell Peprah Opoku
OBJECTIVESWhile early diagnosis is fundamental to the development of children with developmental disabilities (DD), limited attention has been paid to immigrant parents' experience of early encounters with systems when they begin seeking supports for their children with DD. This study aimed to contribute to better understanding of immigrant parents' experiences of early encounters with services for families and children with suspected or diagnosed DD.DESIGNA longitudinal, qualitative approach was adopted. Over 12 months, multiple interviews were conducted with four immigrant families with children aged between two and four years who were attending a mobile playgroup offering early learning supports for children with suspected or diagnosed DD in communities with low access to formal supports. During the first three months of the study, families were accompanied by the first author on weekly visits to the playgroup. Participant observations and informal discussions with staff delivering early intervention supports via the playgroup provided further insight into families' initial and on-going encounters with services and supports. During the remaining nine months, multiple interviews were conducted with participating families, to document their on-going experiences and encounters with medical practitioners and therapists.RESULTSThematic analysis of data generated four key themes: Initial encounters with medical professionals, Confusion and 'missed' diagnosis, Gaps in understanding, collaboration and communication, and Families' desire to learn and implement strategies.CONCLUSIONFamilies made concerted efforts to locate appropriate supports. They also faced barriers including a lack of openness and genuine consultation, particularly in their encounters with health professionals. These barriers resulted in a level of mistrust and detachment from formalised supports. Results highlight the critical importance for health professionals of 'tuning into' family concerns through relationship-based approaches, in order to establish shared understanding and mutual respect between professionals and families, particularly for immigrant families seeking support for their young children.
目的虽然早期诊断对发育障碍(DD)儿童的发展至关重要,但人们对移民父母在开始为发育障碍儿童寻求支持时与系统早期接触的经历关注有限。本研究旨在帮助人们更好地了解移民家长在为疑似或确诊为发育障碍的家庭和儿童提供服务时的早期经历。在 12 个月的时间里,我们对四个移民家庭进行了多次访谈,这些家庭的孩子年龄在两岁到四岁之间,他们参加了一个流动游戏小组,该小组在正规支持较少的社区为疑似或确诊残疾儿童提供早期学习支持。在研究的前三个月,第一作者每周都会陪同这些家庭到游戏小组进行探访。对参与者的观察以及与通过游戏小组提供早期干预支持的工作人员进行的非正式讨论,让我们进一步了解了家庭与服务和支持的最初和持续接触情况。在余下的九个月中,对参与家庭进行了多次访谈,记录他们与医疗从业人员和治疗师的持续经历和接触:最初与医疗专业人员的接触,混淆和 "漏诊",理解、合作和沟通方面的差距,以及家庭学习和实施策略的愿望。他们也面临着一些障碍,包括缺乏开放性和真正的咨询,特别是在与医疗专业人员的接触中。这些障碍导致了对正规支持的不信任和疏远。研究结果凸显了卫生专业人员通过基于关系的方法 "倾听 "家庭的关切,从而在专业人员和家庭之间建立共同理解和相互尊重的重要性,尤其是对于为年幼子女寻求支持的移民家庭而言。
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引用次数: 0
Looking out across the front yard: aboriginal peoples’ views of frailty in the community – A qualitative study 眺望前院:原住民对社区中体弱问题的看法--定性研究
IF 3.1 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-09-15 DOI: 10.1080/13557858.2024.2402527
Ebony T. Lewis, Leanne Howard, Uncle Robert Carroll, Adam Howie, Gail Kenning, Adrienne Withall, Kenneth Rockwood, Magnolia Cardona, Kylie Radford, Katherine Schreyenberg, Ruth Peters
Frailty is one of the most significant challenges to healthy ageing. Aboriginal Australians experience some of the highest levels of frailty worldwide, and despite this, no studies have explored fr...
虚弱是健康老龄化面临的最严峻挑战之一。澳大利亚原住民是世界上体弱程度最高的人群之一,尽管如此,却没有任何研究对他们的健康状况进行探讨。
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引用次数: 0
Sociocultural influences on body image concerns in men of color - a structural equation modeling study. 社会文化对有色人种男性身体形象问题的影响--结构方程模型研究。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-27 DOI: 10.1080/13557858.2024.2396825
Zikun Li, Regine M Talleyrand, Amber B Sansbury

Objective: There is a noticeable underrepresentation of Black, Indigenous, and People of Color (BIPOC) men in the existing empirical literature examining the sociocultural influences on body image concerns. To fill the gap, this study aimed to gain a better understanding of how sociocultural factors correlated with body dissatisfaction among BIPOC men living within the U.S.

Design: Structural equation modeling was used to address this gap by examining how multiple sociocultural factors - interpersonal appearance pressure, media appearance pressure, ethnic-racial identity attitudes (including ethnic-racial salience, stereotype endorsement, and nationalistic assimilation) and ethnic self-hatred towards one's ethnic group - were linked to dissatisfaction with muscularity, body fat and height in a sample of 181 BIPOC men participants.

Results: The proposed cross-sectional path model achieved satisfactory model fit and explained 31.9% in muscularity dissatisfaction, 36.2% in body fat dissatisfaction, and 26.4% in height dissatisfaction. Among direct relationships, interpersonal appearance pressure emerged most prominently associated with height dissatisfaction, whereas media appearance pressure and ethnic self-hatred were more related to muscularity and body fat dissatisfaction. Regarding the mediation effects, media appearance pressure was found to partially mediate the relationship between interpersonal appearance pressure and body dissatisfaction, as well as the relationship between ethnic self-hatred and body dissatisfaction. Furthermore, ethnic self-hatred was found to be predicted by ethnic-racial identity attitudes.

Conclusion: This research profoundly expands our understanding of the ethnic and racial complexities surrounding body dissatisfaction among BIPOC men and encourages health practitioners to acknowledge the unique sociocultural and systemic dynamics (ethnic-racial identities and associated stressors) when working with BIPOC men who present with body image concerns.

目的:在现有研究社会文化对身体形象影响的实证文献中,黑人、土著和有色人种(BIPOC)男性的代表性明显不足。为了填补这一空白,本研究旨在更好地了解社会文化因素如何与生活在美国的黑人、原住民和有色人种男性的身体不满意度相关联:设计:为弥补这一不足,我们使用了结构方程模型来研究多种社会文化因素--人际外貌压力、媒体外貌压力、民族-种族认同态度(包括民族-种族突出性、刻板印象认可和民族主义同化)以及对本民族的自我憎恨--如何与 181 名 BIPOC 男性参与者对肌肉、体脂和身高的不满意度相关联:结果:所提出的横截面路径模型达到了令人满意的模型拟合度,对肌肉不满意度的解释率为 31.9%,对体脂不满意度的解释率为 36.2%,对身高不满意度的解释率为 26.4%。在直接关系中,人际外貌压力与身高不满意的关系最为突出,而媒体外貌压力和种族自我厌恶与肌肉发达和体脂不满意的关系更为密切。在中介效应方面,研究发现媒体外貌压力部分中介了人际外貌压力与身体不满意之间的关系,以及种族自我憎恨与身体不满意之间的关系。此外,研究还发现民族自我憎恨会受到民族-种族认同态度的影响:这项研究极大地拓展了我们对围绕着黑人、印地安人和其他有色人种男性身体不满意的民族和种族复杂性的理解,并鼓励医疗从业人员在与出现身体形象问题的黑人、印地安人和其他有色人种男性合作时,承认独特的社会文化和系统动态(民族-种族身份和相关压力)。
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引用次数: 0
Analysis of the intensity of engagement with CuidaTEXT, a text message intervention for dementia caregiver support among Latinos/as. 分析参与 CuidaTEXT(一种针对拉美裔痴呆症照护者支持的短信干预)的强度。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-06 DOI: 10.1080/13557858.2024.2387111
Valerie Medina, Amber Watts, Monica Fracachán-Cabrera, Cameo Hazlewood, Mariana Ramirez-Mantilla, Eric D Vidoni, Jaime Perales-Puchalt

Objectives: To examine the associations between participant intensity of engagement with a text message intervention, CuidaTEXT, and socio-demographic factors, acceptability measures, and clinical outcomes among Latino/a caregivers of individuals with dementia.

Methods: CuidaTEXT is a six-month, bilingual, and bidirectional intervention. We enrolled 24 Latino/a caregivers in a one-arm feasibility trial. Participants received approximately one automatic daily text message and could engage with the intervention by texting specific keywords (e.g. STRESS to receive messages about stress-coping), and by chat-texting with a live coach. We used metrics and psychometric scales to quantify variables.

Results: Participants sent a total of 1847 messages to CuidaTEXT. Higher intensity of engagement was associated with higher intervention satisfaction (r = 0.6, p = 0.007), as were several other acceptability outcomes. We found no associations between intensity of engagement with CuidaTEXT and sociodemographic or clinical outcomes (p > 0.05).

Conclusion: Encouraging more intense engagement with CuidaTEXT might lead to higher levels of satisfaction with the intervention. However, it is possible that those who are highly satisfied, engage more intensely with CuidaTEXT. Future research should determine the directionality of these associations to optimize text message interventions.

Clinical implications: Creating more opportunities to increase the intensity of text message engagement with caregiver support interventions may improve caregiver satisfaction with them.

目的研究拉丁裔/拉美裔痴呆症患者照顾者参与短信干预CuidaTEXT的强度与社会人口因素、可接受性测量和临床结果之间的关联:CuidaTEXT 是一项为期六个月的双语双向干预措施。我们在一项单臂可行性试验中招募了 24 名拉丁裔照顾者。参与者每天会收到约一条自动短信,他们可以通过发送特定关键词(例如:STRESS,以接收有关压力应对的短信)和与真人教练聊天的方式参与干预。我们使用指标和心理测量量表来量化变量:结果:参与者共向 CuidaTEXT 发送了 1847 条信息。参与强度越高,干预满意度越高(r = 0.6,p = 0.007),其他几个可接受性结果也是如此。我们发现,参与 CuidaTEXT 的强度与社会人口学或临床结果之间没有关联(p > 0.05):结论:鼓励更多的人参与 CuidaTEXT 可能会提高干预的满意度。不过,也有可能是那些满意度高的人参与 CuidaTEXT 的程度更高。未来的研究应确定这些关联的方向性,以优化短信干预:临床意义:创造更多机会,提高护理人员参与短信支持干预的强度,可能会提高护理人员对干预的满意度。
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引用次数: 0
Experiences of a group of indigenous women from the Colombian Amazon with cervical cancer prevention screening. Qualitative study in the context of participatory research to reduce inequalities. 哥伦比亚亚马逊地区一群土著妇女在宫颈癌预防筛查方面的经验。在参与式研究的背景下进行定性研究,以减少不平等现象。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-06 DOI: 10.1080/13557858.2024.2387112
María Inés Sarmiento-Medina, Claudia Marcela Velásquez-Jiménez, Natalia Ortiz-Hernández

Objectives: Despite cervical cancer (CC) being a preventable disease, its incidence remains high in marginalized communities due to inequalities that restrict access to health services. This article investigates the experiences, perceptions, and attitudes regarding the screening of indigenous women in a region of the Colombian Amazon during a cervical cancer prevention initiative facilitated by community participation.

Design: Qualitative study based on interviews conducted with women and indigenous leaders from Paujil reserve. They participated in research focused on cervical cancer prevention, which employed a methodology of collaboration between academia and communities aimed at enhancing women's health and reducing inequalities in access to healthcare services. The analysis utilized a deductive and inductive approach.

Results: Five main themes were addressed: 'Barriers within health services'; 'Individual and cultural constraints'; 'Motivations and facilitators'; 'Positive experiences within the research framework'; and 'Suggestions for encouraging women's participation.' Challenges related to appointment scheduling and result delivery were frequently cited as obstacles to access. Misinformation, feelings of shame, fear, and distrust towards health services played significant roles in the reluctance to undergo screening. Factors such as support from family and community networks, respectful treatment, ease of scheduling appointments, the presence of female healthcare professionals, and involvement of leaders fluent in indigenous languages were identified as positive facilitators of screening acceptance.

Conclusion: Understanding the factors that influence access to screening is crucial for reducing inequalities in service delivery for indigenous women. The involvement of trained leaders who can identify these factors and motivate women can have a positive impact on the acceptance and guidance of cervical cancer prevention programs.

目标:尽管宫颈癌(CC)是一种可预防的疾病,但在边缘化社区,由于不平等现象限制了医疗服务的获取,宫颈癌的发病率仍然很高。本文调查了哥伦比亚亚马逊地区的土著妇女在社区参与的宫颈癌预防计划中接受筛查的经历、看法和态度:设计:基于对 Paujil 保护区妇女和原住民领袖的访谈进行的定性研究。她们参与了以宫颈癌预防为重点的研究,该研究采用了学术界与社区合作的方法,旨在提高妇女的健康水平,减少在获得医疗保健服务方面的不平等。分析采用了演绎和归纳的方法:结果:讨论了五大主题:医疗服务中的障碍"、"个人和文化限制"、"动机和促进因素"、"研究框架内的积极经验 "和 "鼓励妇女参与的建议"。与预约时间和结果交付有关的挑战经常被认为是获得服务的障碍。错误信息、羞耻感、恐惧和对医疗服务的不信任是导致妇女不愿接受筛查的重要原因。家庭和社区网络的支持、受到尊重的待遇、预约时间的便捷性、女性医疗保健专业人员的存在以及精通土著语言的领导者的参与等因素被认为是接受筛查的积极促进因素:结论:了解影响接受筛查的因素对于减少为原住民妇女提供服务方面的不平等至关重要。训练有素的领导者能够识别这些因素并激励妇女,他们的参与会对宫颈癌预防计划的接受和指导产生积极影响。
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引用次数: 0
Mental health needs and barriers to service in the Chinese American community: insights gained from focus groups. 美国华裔社区的心理健康需求和服务障碍:焦点小组的见解。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-05 DOI: 10.1080/13557858.2024.2387113
Pao-Hwa Lin, Ping Zhang, Jian Chen, Harold G Koenig, Marissa Mortiboy, Ping-Tzu Lee, Jennifer Young Tu, Kearston L Ingraham, Yi-Ju Li, Serena Lin, Nadine Barrett

Objectives: Mental health remains an unmet need among Chinese Americans. This study aims to identify specific needs and strategies that may address the needs.

Design: A total of 55 Chinese Americans consented and participated in online focus groups conducted in either Chinese or English using nominal group technique. Participants discussed the following questions, achieved themes, and provided ranking of themes in importance for each: (1) In general, what do people in the Chinese American community think about mental health or emotional well-being? (2) What have you found to be helpful for accessing mental health or emotional well-being services or care in the Chinese American population? And (3) What actions would you suggest to improve mental health and emotional well-being in the Chinese American population?

Results: Across the focus groups, we observed high consistency of top ranked themes including lack of knowledge and awareness, negative impression, lack of Chinese-speaking providers, and that the most helpful factor toward access to care was education and increased awareness. Seminars and trainings was the top actionable suggestion.

Conclusion: The findings are consistent with previous findings and continue to show that Chinese Americans need more education and training and that providers who can speak the language and understand the culture would be very helpful to increase access to care. This study emphasizes addressing mental health disparities in the Chinese American community through awareness, tailored interventions, and barrier removal. Promoting equal access also underscores the need for ongoing assessment and responsive strategies.

目标:心理健康仍然是美国华人尚未满足的需求。本研究旨在确定具体需求和可满足这些需求的策略:设计:共有 55 名美籍华人同意并参加了在线焦点小组,该小组采用名义小组技术,以中文或英文进行。参与者讨论了以下问题,确定了主题,并对每个主题的重要性进行了排序:(1) 总体而言,美国华裔社区的人们对心理健康或情绪健康有什么看法?(2) 你发现什么对美国华人获得心理健康或情绪健康服务或护理有帮助?(3) 您建议采取哪些行动来改善美籍华人的心理健康和情绪健康?在各个焦点小组中,我们观察到排名靠前的主题高度一致,包括缺乏知识和意识、负面印象、缺乏会讲中文的服务提供者,而对获得护理最有帮助的因素是教育和提高意识。研讨会和培训是最可行的建议:结论:研究结果与之前的研究结果一致,继续表明美籍华人需要更多的教育和培训,会讲中文和了解美籍华人文化的医疗服务提供者对增加就医机会非常有帮助。本研究强调通过提高认识、有针对性的干预措施和消除障碍来解决美籍华人社区的心理健康差异问题。促进平等就医也强调了持续评估和应对策略的必要性。
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引用次数: 0
Chronic stress exposure, social support, and sleep quality among African Americans: findings from the National Survey of American Life-Reinterview. 非裔美国人的慢性压力暴露、社会支持和睡眠质量:美国生活全国调查--再访谈的结果。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-01 Epub Date: 2024-06-26 DOI: 10.1080/13557858.2024.2367976
Ann W Nguyen, Omonigho M Bubu, Kedong Ding, Karen D Lincoln

Objective: The purpose of this study was to determine whether social support from extended family and church members moderate the association between chronic stress exposure and sleep quality in a nationally representative sample of African American adults.

Design: Data from African American respondents aged 18 and older were drawn from the National Survey of American Life-Reinterview. The analytic sample for this study included 1,372 African American adults who attended religious services at least a few times a year, as the church-based relationship measures were only assessed for these individuals. Self-reported sleep quality was assessed by sleep satisfaction, trouble falling asleep, and restless sleep. Chronic stress exposure was measured by a nine-item index. OLS and logistic regression were used to estimate the relationship between chronic stress exposure, extended family and church relationships, and sleep quality.

Results: The data indicated that chronic stress exposure was associated with decreased sleep satisfaction, increased likelihood of trouble falling asleep and restless sleep. Receiving emotional support from family and more frequent contact with church members were associated with decreased restless sleep. Emotional family support moderated the associations between chronic stress exposure and trouble falling asleep and restless sleep. The positive associations between chronic stress exposure and these two sleep quality measures were attenuated among respondents who received high levels of emotional support from their family.

Conclusions: Together, these findings underscore the detriment of chronic stress exposure to African Americans' sleep quality and suggest that extended family members are effective stress coping resources and play an important role in this population's sleep quality.

研究目的本研究旨在确定来自大家庭和教会成员的社会支持是否会缓和具有全国代表性的非裔美国成年人样本中的慢性压力暴露与睡眠质量之间的关联:设计:18 岁及以上非裔美国受访者的数据来自《美国生活全国调查-再访谈》(National Survey of American Life-Reinterview)。本研究的分析样本包括 1,372 名每年至少参加几次宗教活动的非裔美国成年人,因为仅对这些人进行了基于教会关系的评估。自我报告的睡眠质量通过睡眠满意度、入睡困难和睡眠不安进行评估。慢性压力暴露通过九个项目的指数进行测量。使用OLS和逻辑回归估计慢性压力暴露、大家庭和教会关系与睡眠质量之间的关系:数据显示,长期压力与睡眠满意度下降、入睡困难和睡眠不安的可能性增加有关。获得家人的情感支持以及与教会成员更频繁的接触与睡眠不安的减少有关。家庭情感支持调节了慢性压力暴露与入睡困难和睡眠不安之间的关联。在得到家人情感支持较多的受访者中,慢性压力暴露与这两项睡眠质量测量之间的正相关关系有所减弱:总之,这些发现强调了慢性压力暴露对非裔美国人睡眠质量的不利影响,并表明大家庭成员是有效的压力应对资源,对该人群的睡眠质量起着重要作用。
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引用次数: 0
When I can be my whole authentic self, I feel safe and know that I belong: a photovoice study exploring what culturally safe pregnancy care is to Karen women of refugee background in Victoria, Australia. 当我能做完整真实的自己时,我感到安全,并知道我属于这里:一项摄影选择研究,探索对澳大利亚维多利亚州有难民背景的卡伦妇女而言,什么是文化安全的孕期保健。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-01 Epub Date: 2024-06-12 DOI: 10.1080/13557858.2024.2359388
Rowena Coe, Shadow Toke, Heather Wallace, Elisha Riggs, Stephanie J Brown, Josef Szwarc, Laura J Biggs

Objectives: Inequitable pregnancy care experiences and outcomes disproportionately affect refugee background women in Australia. Culturally safe care is essential for achieving health equity, however, cultural safety can only be determined by the person receiving care. To our knowledge, women of refugee background in Australia are yet to be asked what culturally safe pregnancy care is to them. Specifically, this study aimed to explore what culturally safe pregnancy care is to Karen women (from Burma) of refugee background.

Design: A photovoice study founded on community-based participatory research principles was undertaken with a Karen community of refugee background living in Victoria, Australia. A community advisory group was established, guiding study design and conduct. Five S'gaw Karen-speaking women with experience of pregnancy care in Australia were invited to take photos within their community. Participants shared their photos and stories with each other in four online discussion groups.

Results: Reflexive thematic analysis guided by a critical constructionist lens developed three themes: Building foundations for belonging; cultivating reciprocal curiosity; and storytelling as an expression of self and shared power. These themes sit within the overarching theme When I can be my whole authentic self, I feel safe and know that I belong.

Conclusion: When Karen women can embrace their cultural and spiritual identity without fear of discrimination, including racism, culturally safe pregnancy care is possible. This study contributes to the design and delivery of maternity services by providing insights that can enhance equitable and culturally safe pregnancy care for Karen women of refugee background.

目的:不公平的孕期保健经历和结果对澳大利亚有难民背景的妇女造成了极大的影响。文化安全护理对实现健康公平至关重要,然而,文化安全只能由接受护理的人来决定。据我们所知,澳大利亚的难民背景妇女尚未被问及对她们来说什么是文化安全的孕期保健。具体而言,本研究旨在探讨对具有难民背景的克伦族妇女(来自缅甸)而言,什么是文化安全的孕期保健:设计:在基于社区的参与式研究原则基础上,对居住在澳大利亚维多利亚州的克伦族难民社区进行了一项摄影选题研究。成立了一个社区咨询小组,负责指导研究的设计和实施。五名讲 S'gaw 克伦语、在澳大利亚有孕期保健经验的妇女应邀在社区内拍摄照片。参与者在四个在线讨论小组中分享了她们的照片和故事:以批判建构主义视角为指导的反思性主题分析提出了三个主题:建立归属感的基础;培养互惠的好奇心;以及将讲故事作为自我和共享权力的一种表达方式。这些主题都属于总主题 "当我能做完整真实的自我时,我感到安全并知道我属于这里":当卡伦妇女能够拥抱自己的文化和精神身份,而不用担心歧视(包括种族主义)时,文化安全的孕期保健就成为可能。本研究有助于设计和提供孕产妇服务,为有难民背景的克伦族妇女提供更公平和文化安全的孕期保健服务。
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引用次数: 0
Capturing the perspectives of African American informal dementia caregivers: a phenomenological study. 捕捉非裔美国人非正式痴呆症照护者的视角:一项现象学研究。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-01 Epub Date: 2024-06-27 DOI: 10.1080/13557858.2024.2367986
Araya Dimtsu Assfaw, Kerstin M Reinschmidt, Thomas A Teasdale, Lancer Stephens, Keith L Kleszynski, Kathleen Dwyer

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

痴呆症可能会让家庭及其照护者不堪重负。在非裔美国人社区,非正规护理是提供痴呆症护理的一种普遍模式,但在非裔美国人社区,护理工作对非正规护理者或家庭护理者的影响是沉重的。本研究旨在描述非裔美国人痴呆症患者(PLWD)的非正式照护者的生活经历,以了解他们对痴呆症和痴呆症照护的看法、照护者的支持需求以及服务需求。本研究以解释性现象学定性调查为指导,以了解照护者的经历和需求。社区中十位非裔美国人老年痴呆症患者的家庭照护者参与了本研究。研究人员通过深入访谈和日记研究的方法收集数据,记录和解释照顾者的经历。数据分析以内容分析程序为基础。深度访谈中出现了四大主题:照顾者的负担、家庭主义、缺乏信息和社区资源,以及对文化上适当的社区资源的渴望和需求。经过三角测量的日记记录数据以类似的主题对深度访谈进行了补充。本研究强调了非裔美国人非正式照顾者如何在痴呆症护理中面临各种护理需求和挑战,包括缺乏文化上适当的社区资源和信息。研究表明,非裔美国人的家庭主义文化信仰是他们护理经验和应对策略的重要方面。这些研究结果为各利益相关方提供了一个有用的基础,以制定具有文化针对性的干预措施和计划,为非裔美国人非正规照护者及其痴呆症家庭成员提供支持。
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引用次数: 0
Embodiment of structural vulnerability: illness experiences among Somali refugee women in urban displacement. 结构脆弱性的体现:城市流离失所的索马里难民妇女的疾病经历。
IF 2.6 3区 医学 Q1 ETHNIC STUDIES Pub Date : 2024-08-01 DOI: 10.1080/13557858.2024.2385112
Hyojin Im, Muna Saleh, Rupa M Khetarpal

Objectives: Forced migration and its subsequent sequelae have caused refugees to face significant adversities throughout the displacement process, making them susceptible to significant health issues. Refugees displaced in Africa are a group especially vulnerable to poor health outcomes, experiencing a documented decline in overall physical and mental health status and rise in mortality from non-communicable diseases (NCDs). Despite the heightened health risks experienced by Somali refugees, particularly women, research into their complex illness experiences and co-/multimorbid health conditions is scarce, leaving a gap in our understanding of the multifaceted health challenges of this population.

Design: Using structural vulnerability theory, this study explores how the broader host context shapes illness experiences for Somali refugee women in Kenya. Specifically, we describe the factors associated with illness experiences of urban Somali refugee women and how this compares with women with other similarly situated identities, such as Somali Kenyan women, other/non-Somali refugees, and Kenyan women. In-depth interviews were conducted with 43 women in Eastleigh, Kenya.

Results: Using hybrid thematic analysis, the emergent themes were grouped into three distinct domains: (1) multimorbid, complex illness experiences, (2) embodiment of structural vulnerability, and (3) distinct/shared vulnerability among refugee/non-refugee women. Results suggest that illness experiences of displaced refugee women are inextricably linked to traumatic experiences before displacement, as well as the experiences of transmigration stressors and the hostile socio-legal dynamics encountered post-displacement.

Conclusions: Our findings also have implications for the need to consider intersectional identities when examining for differential exposure to structural risks and the susceptibility to poor health experiences as well as supports the need for urgent change and improvement in systems of social protection and basic care for refugees experiencing prolonged displacement.

目标:被迫迁徙及其随之而来的后遗症使难民在整个流离失所过程中面临严重的逆境,使他们容易受到严重健康问题的影响。在非洲流离失所的难民是一个特别容易受到不良健康后果影响的群体,他们的整体身心健康状况下降,非传染性疾病(NCDs)死亡率上升。尽管索马里难民(尤其是妇女)面临着更高的健康风险,但有关他们的复杂疾病经历和共病/多病健康状况的研究却很少,这使我们对这一人群面临的多方面健康挑战的认识存在空白:本研究利用结构脆弱性理论,探讨肯尼亚境内的索马里难民妇女如何在更广泛的东道国环境中获得疾病体验。具体而言,我们描述了与城市索马里难民妇女的疾病经历相关的因素,以及与其他类似身份的妇女(如索马里裔肯尼亚妇女、其他/非索马里裔难民和肯尼亚妇女)的比较。研究人员在肯尼亚伊斯特利对 43 名妇女进行了深入访谈:采用混合主题分析法,将新出现的主题分为三个不同的领域:(1)多病症、复杂的疾病经历;(2)结构脆弱性的体现;(3)难民/非难民妇女之间独特/共同的脆弱性。研究结果表明,流离失所难民妇女的疾病经历与流离失所前的创伤经历、迁移压力经历以及流离失所后遇到的敌对社会法律动态密不可分:我们的研究结果还表明,在研究结构性风险的不同暴露程度和不良健康经历的易感性时,需要考虑交叉身份,并支持对经历长期流离失所的难民的社会保护和基本护理系统进行紧急变革和改进的必要性。
{"title":"Embodiment of structural vulnerability: illness experiences among Somali refugee women in urban displacement.","authors":"Hyojin Im, Muna Saleh, Rupa M Khetarpal","doi":"10.1080/13557858.2024.2385112","DOIUrl":"https://doi.org/10.1080/13557858.2024.2385112","url":null,"abstract":"<p><strong>Objectives: </strong>Forced migration and its subsequent sequelae have caused refugees to face significant adversities throughout the displacement process, making them susceptible to significant health issues. Refugees displaced in Africa are a group especially vulnerable to poor health outcomes, experiencing a documented decline in overall physical and mental health status and rise in mortality from non-communicable diseases (NCDs). Despite the heightened health risks experienced by Somali refugees, particularly women, research into their complex illness experiences and co-/multimorbid health conditions is scarce, leaving a gap in our understanding of the multifaceted health challenges of this population.</p><p><strong>Design: </strong>Using structural vulnerability theory, this study explores how the broader host context shapes illness experiences for Somali refugee women in Kenya. Specifically, we describe the factors associated with illness experiences of urban Somali refugee women and how this compares with women with other similarly situated identities, such as Somali Kenyan women, other/non-Somali refugees, and Kenyan women. In-depth interviews were conducted with 43 women in Eastleigh, Kenya.</p><p><strong>Results: </strong>Using hybrid thematic analysis, the emergent themes were grouped into three distinct domains: (1) multimorbid, complex illness experiences, (2) embodiment of structural vulnerability, and (3) distinct/shared vulnerability among refugee/non-refugee women. Results suggest that illness experiences of displaced refugee women are inextricably linked to traumatic experiences before displacement, as well as the experiences of transmigration stressors and the hostile socio-legal dynamics encountered post-displacement.</p><p><strong>Conclusions: </strong>Our findings also have implications for the need to consider intersectional identities when examining for differential exposure to structural risks and the susceptibility to poor health experiences as well as supports the need for urgent change and improvement in systems of social protection and basic care for refugees experiencing prolonged displacement.</p>","PeriodicalId":51038,"journal":{"name":"Ethnicity & Health","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861584","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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Ethnicity & Health
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