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Depression among people living with HIV at a district hospital in KwaZulu-Natal, South Africa. 南非夸祖鲁-纳塔尔省一家地区医院的艾滋病病毒感染者中的抑郁症患者。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-07-22 DOI: 10.4102/safp.v66i1.5821
Zothile L Vezi, Selvandran Rangiah, Kantharuben Naidoo

Background:  Depression is a debilitating condition worldwide and a major contributor to the overall global burden of disease. The prevalence of depression is estimated to be higher in people living with HIV and AIDS (PLWHA) compared to the general population, with disease related complications increasing when mental health problems remain untreated. The aim of the study was to determine the prevalence of depression among PLWHA who attend a district hospital ART clinic in KwaZulu-Natal (KZN), South Africa (SA).

Methods:  Using strict systematic sampling, a descriptive cross-sectional study was employed with 121 adult outpatients attending an antiretroviral clinic at a district hospital in KZN, SA. Their biographical and clinical characteristics were obtained through a questionnaire and medical records, while depression was evaluated using the PHQ-9 scale. The data were analysed using descriptive and inferential statistics.

Results:  A total of 121 participants were recruited for this study. The prevalence of depression was 19.8% and significantly associated with a poor support system (adjusted odds ratio [aOR] = 3.60, p = 0.010). Female patients were more likely to have depressive symptoms than males (aOR = 0.73; confidence interval: 0.28-1.90) although this was not statistically significant. Age, marital status and viral load were not contributors to depression.

Conclusion:  Routine screening for depression among PLWHA at primary health care (PHC) level may improve detection rates, earlier treatment and overall health outcomes.Contribution: The results emphasise the need for patient-centeredness and holistic care that involves addressing mental health for PLWHA, given that HIV is a lifelong condition.

背景: 抑郁症是全球范围内一种使人衰弱的疾病,也是造成全球疾病负担的一个主要因素。据估计,与普通人群相比,艾滋病病毒感染者和艾滋病患者(PLWHA)的抑郁症发病率更高,如果心理健康问题得不到治疗,与疾病相关的并发症也会增加。本研究旨在确定在南非夸祖鲁-纳塔尔省(KZN)一家地区医院抗逆转录病毒疗法门诊就诊的艾滋病病毒感染者和艾滋病患者中抑郁症的患病率: 采用严格的系统抽样方法,对南非夸祖鲁-纳塔尔省一家地区医院抗逆转录病毒疗法门诊的 121 名成年门诊患者进行了描述性横断面研究。研究人员通过调查问卷和医疗记录了解了这些患者的个人履历和临床特征,并使用 PHQ-9 量表对抑郁症进行了评估。数据采用描述性和推论性统计方法进行分析: 本研究共招募了 121 名参与者。抑郁症患病率为 19.8%,与支持系统不完善有显著关联(调整后的几率比 [aOR] = 3.60,P = 0.010)。女性患者比男性患者更容易出现抑郁症状(aOR = 0.73;置信区间:0.28-1.90),但在统计学上并不显著。年龄、婚姻状况和病毒载量不是导致抑郁的因素: 结论:在初级卫生保健(PHC)层面对 PLWHA 进行抑郁症常规筛查可提高检出率、早期治疗和整体健康效果:贡献:鉴于艾滋病是一种终身疾病,研究结果强调了以患者为中心和整体护理的必要性,其中包括解决 PLWHA 的心理健康问题。
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引用次数: 0
The extent of interruptions to primary care medical officers’ consultations in the Western Cape 西开普省初级保健医务人员会诊中断的程度
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-07-17 DOI: 10.4102/safp.v66i1.5957
T. Motsohi, Bob Mash, Michael K. Pather, Louis S. Jenkins, Paul Kapp, Johan Schoevers, Mumtaz Abbas, Leigh Wagner, Salome Froneman, Stefanie Perold, Gavin D. Hendricks
Background: Administrative tasks are an increasing burden for primary care doctors globally and linked to burnout. Many tasks occur during consultations. They cause interruptions with possible effects on patients’ and doctors’ experiences and care. The burden and typology of interruptions of doctors in primary care consultations have not been studied in South Africa. Given the link between administrative loads and burnout, describing the extent of these interruptions would help. This study’s aim was to assess the extent of interruptions on primary care doctors in the Western Cape.Methods: This was a descriptive cross-sectional survey. Doctors from rural and urban primary care clinics in the Western Cape answered an online self-administered survey on the types of interruptions experienced during consultations. Interruptions were categorised and their prevalence calculated. Clinical and non-clinical interruption categories were compared.Results: There were 201 consultations from 30 doctors. Most interruptions were from retrieving and recording the current patient’s information (93.0%), paperwork for other patients (50.7%), and telephone calls about the current patient (41.8%). Other prevalent interruptions were for emergencies (39.8%) and acquiring consumables (37.3%). The median (interquartile range [IQR]) of four (2–4) interruption types per consultation was higher than global settings.Conclusion: Doctors experienced many interruptions during consultations. Their wide range included interruptions unrelated to the current patient.Contribution: This study adds insights from the global south on clinicians’ administrative burden. It elaborates on the types of activities that interrupt consultations in an upper-middle income primary care setting. Exploration of interventions to decrease this burden is suggested.
背景:全球初级保健医生的行政工作负担日益加重,并与职业倦怠有关。许多任务发生在会诊期间。这些任务会造成工作中断,并可能影响患者和医生的就诊体验和护理。南非尚未研究过医生在初级医疗咨询中被打断的负担和类型。鉴于行政负担与职业倦怠之间的联系,描述这些中断的程度将有所帮助。本研究旨在评估西开普省初级保健医生的中断程度:这是一项描述性横断面调查。来自西开普省农村和城市初级保健诊所的医生就咨询过程中遇到的中断类型进行了在线自填式调查。我们对中断进行了分类,并计算了其发生率。对临床和非临床中断类别进行了比较:结果:30 名医生共提供了 201 次咨询。大多数中断是由于检索和记录当前病人的信息(93.0%)、为其他病人办理手续(50.7%)以及与当前病人有关的电话(41.8%)。其他最常见的中断是紧急情况(39.8%)和购买消耗品(37.3%)。每次会诊中断类型的中位数(四分位数间距 [IQR])为四种(2-4),高于全球水平:结论:医生在会诊过程中经历了多次中断。结论:医生在会诊过程中会遇到很多中断,其中包括与当前病人无关的中断:贡献:这项研究增加了全球南部地区对临床医生行政负担的了解。它详细阐述了在中上等收入的初级医疗机构中中断会诊的活动类型。建议探讨减少这种负担的干预措施。
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引用次数: 0
Knowledge and awareness of cervical cancer and human papillomavirus vaccination among female university students 女大学生对宫颈癌和人类乳头瘤病毒疫苗接种的了解和认识
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-07-16 DOI: 10.4102/safp.v66i1.5885
Charles C. Ndubuisi, O. Maphasha, Sunday O. Okeke
Background: Prevention strategies for reducing cervical cancer incidence rely on informed populations, particularly those most at risk. This study assesses the knowledge and awareness of female university students towards cervical cancer, human papillomavirus (HPV) and its vaccination.Methods: A validated self-administered questionnaire was used in a descriptive cross-sectional study among female university students. The data were analysed with Statistical Package for Social Sciences version 26, and p  0.05 was considered significant.Results: The total participants were 190 with a mean age of 22.6 ± 4.35 years. The majority (90%) were aware of cervical cancer, and 78.9% agreed it is a terminal illness, but fewer participants knew it was associated with infection (63.7%), and that it had effective risk-reducing methods (70.5%). Only 32.6% were aware of the Pap smear test, less than half (43.2%) were aware of the cervical cancer vaccine and only 43.7% knew it was available locally. Although fewer (39.5%) considered themselves susceptible to cervical cancer, many (62.1%) would like a Pap smear test. Overall, 88.9% of the participants possessed adequate knowledge of cervical cancer, 67.9% of the HPV vaccine and only 33.7% of HPV. Ethnicity (p = 0.03), year of study (p = 0.001) and institution (p = 0.002) were all significantly associated with knowledge levels, vaccine awareness and Pap smear test awareness.Conclusion: Participants showed low HPV knowledge and varying awareness levels regarding cervical cancer, HPV and HPV vaccine.Contribution: This study provides insights into female university students’ knowledge and awareness gaps, highlighting the need for targeted interventions.
背景:降低宫颈癌发病率的预防策略有赖于知情人群,尤其是高危人群。本研究评估了女大学生对宫颈癌、人类乳头瘤病毒(HPV)及其疫苗接种的了解和认识:方法:在女大学生中开展了一项描述性横断面研究,采用了经过验证的自填式问卷。数据采用社会科学统计软件包 26 版进行分析,P<0.05 为差异显著:参与调查者共 190 人,平均年龄(22.6±4.35)岁。大多数人(90%)知道宫颈癌,78.9%的人同意宫颈癌是一种绝症,但知道宫颈癌与感染有关(63.7%)和宫颈癌有有效降低风险方法(70.5%)的人较少。只有 32.6%的人知道子宫颈抹片检查,不到一半(43.2%)的人知道宫颈癌疫苗,只有 43.7% 的人知道当地有这种疫苗。虽然认为自己易患宫颈癌的人数较少(39.5%),但许多人(62.1%)希望接受巴氏涂片检查。总体而言,88.9% 的参与者对宫颈癌有足够的了解,67.9% 的参与者对 HPV 疫苗有足够的了解,只有 33.7% 的参与者对 HPV 有足够的了解。种族(p = 0.03)、学习年份(p = 0.001)和院校(p = 0.002)都与知识水平、疫苗认知度和巴氏涂片检查认知度显著相关:结论:参与者对 HPV 的了解程度较低,对宫颈癌、HPV 和 HPV 疫苗的认识水平参差不齐:贡献:本研究有助于深入了解女大学生的知识和意识差距,突出了采取有针对性干预措施的必要性。
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引用次数: 0
Corrigendum: The impact, perceptions and needs of parents of children with epidermolysis bullosa. 更正:表皮松解症儿童家长的影响、看法和需求。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-07-16 DOI: 10.4102/safp.v66i1.5993
Antoinette V Chateau, David Blackbeard, Colleen Aldous, Ncoza Dlova, Cassidy-Mae Shaw

No abstract available.

无摘要。
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引用次数: 0
Legal requirements for reporting clinical cases to the South African police or social services. 向南非警方或社会服务机构报告临床病例的法律要求。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-06-29 DOI: 10.4102/safp.v66i1.5919
Dirk T Hagemeister, William Oosthuizen, Bridgette Mokae

Medical confidentiality is the cornerstone for a trustful relationship between patients and the health professionals attending to them. However, when history or clinical findings suggest certain offenses, statutory laws (Children's Act, Older Persons Act, Mental Health Care Act, Sexual Offenses Act) establish a legal obligation for health professionals to report suspected instances of abuse to the police or alternatively, in some cases, to a designated social worker. Given the high rate of domestic violence and abuse in South Africa, health professionals are most likely to encounter such situations. Many clinicians are oblivious of the obligations, exposing themselves to possible liability and their patients to potential additional harm. This article aims to demonstrate the reporting requirements under the respective acts through case scenarios. Finally, the advantages and disadvantages of the existing legal setting are discussed briefly.

医疗保密是病人与医护人员之间建立信任关系的基石。然而,当病史或临床检查结果表明存在某些犯罪行为时,成文法(《儿童法》、《老年人法》、《精神保健法》、《性犯罪法》)规定,医疗专业人员有法律义务向警方报告可疑的虐待事件,或者在某些情况下,向指定的社会工作者报告。鉴于南非家庭暴力和虐待的高发率,医疗专业人员最有可能遇到此类情况。许多临床医生对这些义务熟视无睹,从而使自己可能承担责任,并使患者受到潜在的额外伤害。本文旨在通过案例情景展示相关法案规定的报告要求。最后,简要讨论了现有法律环境的利弊。
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引用次数: 0
Regional anaesthesia for district hospitals and clinics. 地区医院和诊所的区域麻醉。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-06-28 DOI: 10.4102/safp.v66i1.5872
Michele Torlutter

Pain is a common reason that patients seek care in the emergency department (ED). Regional anaesthesia in the form of nerve blocks provides an excellent alternative to traditional forms of analgesia, and may be superior in managing musculoskeletal pain compared to opioids. Adequate pain management improves patient satisfaction, facilitates examination and minor procedures, and allows for earlier and safe discharge. In low resource settings this modality is underutilised due to lack of trained providers and/or support from specialised services, shortages of equipment, and lack of context-sensitive guidelines. Advances in ultrasound guided regional anaesthesia has the potential to improve access to safe and reliable anaesthesia. It is often not accessible or an active part of training even for emergency physicians. There are, however, a number of nerve blocks that are easy to learn, don't require specialised equipment, and can be readily applied in EDs for minor procedures and longer acting forms of analgesia. Nerve blocks more applicable in the operating theatre or best done under ultrasound guidance are mentioned but not discussed in this article. This continuous professional development (CPD) article aims to provide guidance with respect to several key areas related to more commonly used types of regional anaesthesia in district level services. We discuss the importance of good clinical practice including thorough preparation of equipment and the patient to avoid common complications, clinical indications for regional blocks in the ED, local anaesthetic agents, different techniques for some common regional blocks, potential complications, and the need for a trained interprofessional team.

疼痛是患者到急诊科(ED)就医的常见原因。神经阻滞形式的区域麻醉是传统镇痛方式的绝佳替代品,与阿片类药物相比,它在控制肌肉骨骼疼痛方面可能更胜一筹。充分的疼痛管理可提高患者的满意度,方便检查和小型手术,并能让患者尽早安全出院。在资源匮乏的环境中,由于缺乏训练有素的医疗服务提供者和/或专业服务支持、设备短缺以及缺乏因地制宜的指导原则,这种方式未得到充分利用。超声引导下区域麻醉的进步有可能改善安全可靠麻醉的可及性。即使是急诊医生,也往往无法获得这种技术或将其作为培训的一部分。不过,有一些神经阻滞方法简单易学,不需要专业设备,可随时在急诊室用于小手术和长效镇痛。本文提到了更适用于手术室或在超声引导下进行的神经阻滞,但未对其进行讨论。这篇持续专业发展(CPD)文章旨在就地区级服务中更常用的区域麻醉类型的几个关键领域提供指导。我们讨论了良好临床实践的重要性,包括为设备和患者做好充分准备以避免常见并发症、急诊室区域阻滞的临床适应症、局麻药、一些常见区域阻滞的不同技术、潜在并发症以及训练有素的跨专业团队的必要性。
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引用次数: 0
Hepatitis B immunisation and immune status of nurses in a regional hospital in central South Africa. 南非中部一家地区医院护士的乙肝免疫接种和免疫状况。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-06-26 DOI: 10.4102/safp.v66i1.5871
Emily M Makola, Willem H Kruger, Perpetual Chikobvu

Background:  The hepatitis B virus (HBV) is one of the most important biological occupational hazards for healthcare workers. A high percentage of HBV infections are attributable to percutaneous occupational exposure. This study aimed to describe the HBV immunisation and current immune status of all the nurses employed in a regional hospital in central South Africa.

Methods:  A descriptive record review included all the nurses (N = 388) employed in a regional hospital in central South Africa from 01 January 2018 to 31 January 2020. A total of 289 health records were included in the study. Data were analysed using descriptive statistics. Logistic regression analysis was used to establish factors associated with full immunisation.

Results:  Most nurses were females (87.9%), working in medical (27.0%) wards. Only 20.4% of nurses received one dose of vaccine, while 51.2% received the three prescribed doses. However, 91.2% of nurses did not receive the vaccine at the correct intervals. Most of the tested nurses (71.0%) were immune. Immunisation status was significantly associated with religion (p  0.001) and schedule (p = 0.003). Nurses who were non-Christians were 35.9% less likely to be fully vaccinated compared to Christians.

Conclusion:  Half of the nursing staff received three doses as prescribed. All nurses should receive the vaccine against HBV and their immune status monitored to minimise the risk of an infection. It is therefore recommended that proof of immunity should be a requirement.Contribution: This study found a high percentage of nurses with HBV antibodies, which will ensure workplace safety.

背景: 乙型肝炎病毒(HBV)是对医护人员最重要的生物职业危害之一。很高比例的 HBV 感染可归因于经皮职业暴露。本研究旨在描述南非中部一家地区医院所有护士的 HBV 免疫情况和目前的免疫状况: 描述性记录审查包括南非中部一家地区医院从 2018 年 1 月 1 日至 2020 年 1 月 31 日期间聘用的所有护士(N = 388)。研究共纳入 289 份健康记录。数据采用描述性统计进行分析。逻辑回归分析用于确定与全面免疫相关的因素: 大多数护士为女性(87.9%),在内科病房工作(27.0%)。只有 20.4% 的护士接种了一剂疫苗,而 51.2% 的护士接种了规定的三剂疫苗。然而,91.2% 的护士没有按照正确的间隔时间接种疫苗。大多数接受测试的护士(71.0%)都具有免疫力。免疫状况与宗教信仰(p 0.001)和接种时间(p = 0.003)有明显关系。与基督徒相比,非基督徒护士完全接种疫苗的可能性要低 35.9%: 结论:半数护理人员按规定接种了三剂疫苗。所有护士都应接种乙型肝炎病毒疫苗,并对其免疫状况进行监测,以将感染风险降至最低。因此,建议将免疫证明作为一项要求:贡献:本研究发现,护士中 HBV 抗体的比例很高,这将确保工作场所的安全。
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引用次数: 0
Knowledge, attitudes and practices on diabetic foot care among nurses in Kimberley, South Africa. 南非金伯利护士对糖尿病足护理的认识、态度和实践。
IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL Pub Date : 2024-06-25 DOI: 10.4102/safp.v66i1.5935
Labala G Mafusi, Chika K Egenasi, Wilhelm J Steinberg, Mathew O Benedict, Talat Habib, Melvin Harmse, Cornel Van Rooyen

Background:  Diabetic foot is a dangerous complication of diabetes and can lead to high morbidity and mortality. As essential team members of the healthcare system, nurses play an important role in diabetic foot management and are indispensable in patients' education to prevent diabetic foot. The study assessed nurses' knowledge, attitudes and practices regarding diabetic foot care in Sol Plaatje primary health care centres in the Northern Cape: Sol Plaatje's 14 district municipality clinics, Kimberley, Northern Cape.

Methods:  This was a descriptive cross-sectional analytical study. A questionnaire assessed nurses' knowledge, practices and attitudes towards diabetic foot care in the above setting.

Results:  A total of 128 professionals, enrolled and auxiliary nurses who are providing primary care to patients within the 14 clinics in the Sol-Plaatje sub-district were recruited for the study. Hundred and five participants completed the self-administered questionnaires. The majority (95%) were females and 58.1% knew that South African Diabetic Foot Guidelines existed, while 57.7% had read them. About 57% did not know about the 60-s diabetic foot screening tool, and 67% did not know the 10 g monofilament test. Approximately 29.8% had never attended a class on diabetic foot care and 85.6% required training on diabetic foot care.

Conclusion:  This study revealed that the majority of nurses working in the Sol-Plaatje sub-district primary health care centres are knowledgeable of the diabetic foot guidelines for primary care. However, there is a need for ongoing education on diabetic foot care.Contribution: The study results will help improve nurses' awareness of the importance of diabetic foot care.

背景: 糖尿病足是糖尿病的一种危险并发症,可导致高发病率和高死亡率。作为医疗保健系统中不可或缺的团队成员,护士在糖尿病足管理中发挥着重要作用,在患者预防糖尿病足的教育中也不可或缺。本研究评估了北开普省 Sol Plaatje 初级医疗保健中心(北开普省金伯利市 Sol Plaatje 的 14 个区市诊所)护士对糖尿病足护理的知识、态度和做法: 这是一项描述性横断面分析研究。问卷调查评估了上述环境中护士对糖尿病足护理的知识、实践和态度: 本研究共招募了 128 名专业护士、注册护士和辅助护士,他们在索尔-普拉特杰分区的 14 家诊所为患者提供基础护理服务。有 105 名参与者填写了自填问卷。大多数(95%)为女性,58.1%的人知道有《南非糖尿病足指南》,57.7%的人读过该指南。约 57% 的人不知道 60 秒糖尿病足筛查工具,67% 的人不知道 10 克单丝测试。约 29.8% 的人从未参加过糖尿病足护理课程,85.6% 的人需要接受糖尿病足护理培训: 这项研究表明,在索尔-普拉亚特杰(Sol-Plaatje)分区初级卫生保健中心工作的大多数护士都了解糖尿病足初级护理指南。但是,还需要持续开展糖尿病足护理教育:贡献:研究结果将有助于提高护士对糖尿病足护理重要性的认识。
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引用次数: 0
Hybrid electronic record: An error reduction strategy for diverse medical prescription formats 混合电子记录:针对不同医疗处方格式的减少错误策略
IF 1 Q3 Medicine Pub Date : 2024-06-07 DOI: 10.4102/safp.v66i1.5845
Carl-Heinz Kruse, Michelle T. D. Smith, Damian L. Clarke
Background: This project is part of a broader effort to develop a new electronic registry for ophthalmology in the KwaZulu-Natal (KZN) province in South Africa. The registry should include a clinical decision support system that reduces the potential for human error and should be applicable for our diversity of hospitals, whether electronic health record (EHR) or paper-based.Methods: Post-operative prescriptions of consecutive cataract surgery discharges were included for 2019 and 2020. Comparisons were facilitated by the four chosen state hospitals in KZN each having a different system for prescribing medications: Electronic, tick sheet, ink stamp and handwritten health records. Error types were compared to hospital systems to identify easily-correctable errors. Potential error remedies were sought by a four-step process.Results: There were 1307 individual errors in 1661 prescriptions, categorised into 20 error types. Increasing levels of technology did not decrease error rates but did decrease the variety of error types. High technology scripts had the most errors but when easily correctable errors were removed, EHRs had the lowest error rates and handwritten the highest.Conclusion: Increasing technology, by itself, does not seem to reduce prescription error. Technology does, however, seem to decrease the variability of potential error types, which make many of the errors simpler to correct.Contribution: Regular audits are an effective tool to greatly reduce prescription errors, and the higher the technology level, the more effective these audit interventions become. This advantage can be transferred to paper-based notes by utilising a hybrid electronic registry to print the formal medical record.
背景:该项目是南非夸祖鲁-纳塔尔省(KZN)眼科新电子登记系统开发工作的一部分。该登记册应包括一个临床决策支持系统,以减少人为错误的可能性,并应适用于我们的各种医院,无论是电子健康记录(EHR)还是纸质记录:方法:纳入 2019 年和 2020 年连续白内障手术出院者的术后处方。所选的四家克州国立医院各有不同的药物处方系统,这为比较提供了便利:电子、勾选单、墨水印章和手写健康记录。将错误类型与医院系统进行比较,以确定容易纠正的错误。通过四个步骤寻找潜在的错误补救措施:结果:1661 份处方中共有 1307 个错误,分为 20 种错误类型。技术水平的提高并没有降低错误率,但却减少了错误类型的多样性。高技术处方的错误率最高,但如果剔除容易纠正的错误,电子病历的错误率最低,手写的错误率最高:结论:提高技术本身似乎并不能减少处方错误。然而,技术似乎确实降低了潜在错误类型的可变性,从而使许多错误更容易纠正:贡献:定期审核是大大减少处方错误的有效工具,技术水平越高,这些审核干预措施就越有效。利用混合电子登记系统打印正式医疗记录,可以将这一优势转移到纸质记录上。
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引用次数: 0
The impact, perceptions and needs of parents of children with epidermolysis bullosa 表皮松解症儿童家长的影响、看法和需求
IF 1 Q3 Medicine Pub Date : 2024-06-06 DOI: 10.4102/safp.v66i1.5897
A. Chateau, David Blackbeard, C. Aldous, N. Dlova, Cassidy-Mae Shaw
Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa.Method: This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba’s framework of trustworthiness was used to ensure rigour.Results: Seven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs.Conclusion: Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents’ needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.
背景:大疱性表皮松解症(EB)是一种罕见的、无法治愈的遗传性皮肤病,表现为水疱和皮肤脆弱。并发症可以是局部性的,也可以是全身性的,可以局限于皮肤,也可以对全身产生影响,导致死亡。照顾患有这种痛苦疾病的儿童会对父母和家庭的生活质量产生深远影响。在非洲资源有限的环境中,目前还没有关于父母照顾 EB 患儿生活经历的公开研究:这项定性研究采用了解释性现象分析法,旨在了解照顾脑损伤患儿的父母的生活经历。在 2022 年 5 月至 2023 年 10 月期间,对 13 名参与者进行了半结构化访谈。研究采用了古巴的可信性框架,以确保研究的严谨性:结果:确定了七个经验主题及相关子主题。这些主题分别是:(1)努力理解 EB;(2)心理体验;(3)生活责任;(4)感受支持的障碍;(5)不断变化的关系动态;(6)医护人员的经验;(7)父母的需求:结论:照顾 EB 儿童的家长面临着情感、身体、社会心理和经济方面的挑战。解决父母的需求和担忧将大大减轻他们的负担。在以家庭为中心的综合 EB 护理中,必须采用生物心理社会方法,同时考虑到文化背景:这是在非洲开展的第一项研究,重点关注父母照顾 EB 患儿的生活经历。
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South African Family Practice
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