Hearing the voices of children with chronic illness

This qualitative study has aimed to explore children's, parents' and health professionals' experience of childhood chronic illness. Seven families and their professional carers participated in semistrucured interviews. The children's interviews were augmented with a 'drawing' technique. A grounded theory approach facilitated data collection and analysis. This paper debates the perceived passivity of the voice of children in health care and research and illustrates data collection methods that seek to give children and other disadvantaged groups a voice. The children who participated in this study are described as competent interpreters of their world.     

学龄期哮喘儿童自我概念水平及其影响因素调查

目的 了解学龄期哮喘儿童自我概念水平及其影响因素.方法 采用问卷调查法,对上海地区100名学龄期哮喘儿童的自我概念水平及其影响因素进行探讨.结果 学龄期哮喘儿童的自我概念水平低于全国常模.性别、年龄、病程、发作频率、住院次数对学龄期哮喘息儿的总体自我概念及其系列组成部分如社会行为、智力和学校情况、合群、躯体外貌及属性、焦虑等有不同的影响.结论 应采取积极措施提高学龄期哮喘患儿的自我概念水平,而且在护理干预措施的制订和实施过程中,应将这些影响因素考虑进去,使干预措施更有针对性、更有效.     

Narrative quality measures in school-age children referred for language assessment

Purpose: Measures of narrative quality hold promise for clinical language assessment. However, more information is needed on the validity of such measures within clinical populations. This study examined aspects of validity for two clinically-available narrative quality measures, the Narrative Scoring Scheme and a holistic scoring method, within a diverse group of children referred for speech-language assessment.

Method: Assessment records from 72 school-age children were retrospectively analysed. Narrative quality scores from oral narrative language samples were examined for expected qualities including growth with age, similarity across groups defined by gender and linguistic background and relations with other measures of language ability including norm-referenced test scores and microstructural language sample measures.

Result: External validity was supported by unbiased scores across gender and linguistic background. Concurrent, criterion-related validity was supported by strong correlations between narrative quality and some microstructural measures, as well as by the similarity in performance between the two tools. However, the expected relation with age was not present and there were few correlations between narrative quality scores and norm-referenced language tests, showing limitations in construct and criterion-referenced validity.

Conclusion: Results provide an independent validation of these two tools and may guide clinicians looking to assess narrative quality.     

实施学龄期住院患儿无陪伴的做法与成效

传染源属于传染病流行的一个主要环节。为减少传染源,控制病房的交叉感染,减少住院患儿陪伴引发护患矛盾,实施学龄期住院患儿无陪伴制度,建立良好的护患关系,加强护患成效沟通,营造温馨的住院环境,家长对护理工作满意率达97.5%,确保了病房空气监测合格。     

住院儿童、青少年恶性肿瘤患者疾病不确定感现状及其影响因素分析

目的 探讨未成年的儿童、青少年恶性肿瘤患者疾病不确定感现况,并分析其影响因素.方法 采用中文版儿童、青少年疾病不确定感量表(the uncertainty scale for kids,USK)和基线资料调查问卷对112例7～18岁的恶性肿瘤患者进行横断面调查.结果 112例未成年的儿童、青少年恶性肿瘤患者疾病不确定感的总分平均为(45.16±6.67)分;未成年儿童、青少年恶性肿瘤患者的疾病不确定感受其年龄、性格、病程、治疗方式、目前疾病状况、是否因病休学、住院次数、家庭月收入以及父母对疾病相关知识了解程度的影响;目前疾病状况、家庭月收入、是否因病休学以及父母对疾病相关知识了解程度是患者疾病不确定感的主要影响因素.结论 未成年的儿童、青少年恶性肿瘤患者普遍存在疾病不确定感,日常医疗与护理中应加强该方面的工作,尤其在日常护理工作中,护士应重视疾病不确定感对儿童、青少年恶性肿瘤患者的影响,尽早采取积极、有效的干预措施,以降低患者疾病不确定感,减轻其心理压力,进一步提高生存质量.     

Conceptualizing and measuring illness self-concept: a comparison with self-esteem and optimism in predicting fibromyalgia adjustment

Illness self-concept (ISC), or the extent to which individuals are consumed by their illness, was theoretically described and evaluated with the Illness Self-Concept Scale (ISCS), a new 23-item scale, to predict adjustment in fibromyalgia. To establish convergent and discriminant validity, illness self-concept was compared to self-esteem and optimism in predicting health status, illness intrusiveness, depression, and life satisfaction. The ISCS demonstrated good reliability (alpha = .94; test-retest r = .80) and was a strong predictor of outcomes, even after controlling for optimism or self-esteem. The ISCS predicted unique variance in health-related outcomes; optimism and self-esteem did not, providing construct validation. Illness self-concept may play a significant role in coping with fibromyalgia and may prove useful in the evaluation of other chronic illnesses.     

Cluttering symptoms in school-age children by communicative context: A preliminary investigation

Abstract

Purpose: The objective of this study was to compare the symptoms of cluttering among school-age children who do and do not clutter in the contexts of monologue, conversation and expository discourse.

Method: A matched pairs design was used to compare cluttering symptoms according to the Lowest Common Denominator (LCD) definition of cluttering, a definition representing the core speech and fluency characteristics of cluttering agreed upon among experts. Cluttering symptoms (over-coarticulated words, normal disfluencies, abnormal pauses) in eight school-aged males with cluttering were compared to eight controls matched by sex and grade level in school. Symptoms were compared in the speech contexts of conversation, monologue and expository discourse.

Result: Regardless of the speaking context, significantly more over-coarticulated words were found in children with cluttering (CWC) as compared to controls. Significantly more normal disfluencies were produced by CWC during monologue only.

Conclusion: Study findings confirm increased over-coarticulation and normal disfluencies in specific speaking contexts in CWC when compared to controls. These findings provide the premise for clinical implications for cluttering assessment and diagnosis. Findings also provide the basis for further investigation of the validity of the LCD’s symptom of abnormal pausing for accurate diagnosis of people who clutter.     

关于综合医院护士职业自我概念影响因素的研究

目的 寻找并确认护士职业自我概念的影响因素.方法 采用护士职业自我概念的自评量表对某综合三甲医院240例护士进行调查.结果 护士的道德伦理自我在护士的职业自我概念中所占比值最大,生理自我所占比值最小.各因子得分为生理自我(24.66±4.51)分、道德伦理自我(54.38±3.99)分、心理自我(42.55±5.30)分、职业态度(42.69±6.66)分,职业自我概念的总分值(271.25±20.68)分.不同科室护士之间差异有统计学意义(P<0.05);不同婚姻状况、不同年资护士、不同职称护士的生理自我分值差异有统计学意义(P<0.05).结论 科室是护士职业自我概念的主要影响因素,其次是婚姻状况和年资,学历不影响护士职业自我概念.改善现有的科室环境,形成护士人才队伍的合理梯队,进行有效的家庭心理卫生干预,有利于提高护士的职业自我概念.     

Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia

BACKGROUND: People with chronic illnesses often suffer from identity-loss. Empirical research concerning patients with chronic fatigue syndrome (CFS) or fibromyalgia has not, however, adequately addressed the consequences of these illnesses for identity. AIM: The aim of this article is to describe how women with CFS and fibromyalgia create new concepts of identity after the onset of illness, and how they come to terms with their newly arisen identities. I aim to illuminate the biographical work done by these individuals, which includes a re-evaluation of their former identity and life. This process is illustrated by the following themes: An earlier identity partly lost and Coming to terms with a new identity. METHOD: The study is based on interviews with 25 women in Sweden, 12 with the diagnosis of CFS and 13 diagnosed with fibromyalgia. A grounded theory orientated approach was used when collecting and analysing the data. FINDINGS: The main findings are that: (1) the illnesses can involve a radical disruption in the women's biography that has profound consequences for their identity, particularly in relation to work and social life, (2) biographical disruptions are partial rather than total, calling for different degrees of identity transformation, (3) many of the women also experience illness gains in relation to the new identity. CONCLUSIONS: Thus, the biographical disruption and illness experience comprised both losses and illness gains that had consequences for identity.     

Physical activity and physical self-concept: comparison between children with and without asthma

AIM: This paper reports a study comparing levels of physical activity and physical self-concepts between children with and without asthma. BACKGROUND: Childhood asthma has become one of the world's most prevalent chronic illnesses. Its symptoms are thought to prevent children from participating in some forms of physical activity. However, asthma treatment guidelines are increasingly suggesting that children with asthma can participate in the same physical activities as healthy children for the same reasons-- to promote normal growth, physical development and psychological health. METHOD: Between October 2001 and May 2002, 120 children between the ages of 9 and 11 with mild and moderate asthma were recruited from three paediatric asthma clinics in Taiwan, and 309 non-asthmatic children in the same age group were selected from four elementary schools in Taiwan's three largest cities. Participants were asked to record physical activity levels for 3 days out of the past 7 days and to fill out a 29-item Physical Self-Concept Inventory. Physical activities were classified as moderate-to-vigorous physical activity or vigorous physical activity. Physical self-concept was measured in terms of perceived flexibility, endurance, appearance, agility, obesity and strength. RESULTS: Asthma was the primary factor determining vigorous physical activity levels, but gender was the primary factor determining physical self-concept, especially in terms of endurance, obesity and strength. No statistically significant relationships were noted between asthma and gender in terms of effects on physical activity and physical self-concept. CONCLUSIONS: Asthma interferes with children's ability to participate in vigorous physical activity but not in moderate-to-vigorous physical activity. Gender determines primary differences in physical self-concept. Appropriate exercise recommendations are necessary to encourage children with asthma to engage in vigorous physical activity for normal growth.     

健康行为训练对提高学龄期癫痫患儿自尊水平的研究

目的 探讨健康行为训练对学龄期癫痫患儿自尊水平及心理状态的影响。方法将112例学龄期癫痫患儿随机分为实验组和对照组。对照组给予常规健康教育,实验组实施健康行为训练,采用自尊量表和缺陷感量表进行训练前后自身对照和两组间对照,在患儿出院6个月时进行效果评价。结果实验组患儿自尊量表和缺陷感量表评分明显增高,与对照组比较差异具有统计学意义（P〈0．01）。实验组患儿对疾病和药物治疗的态度、情绪、社会适应能力、健康状况、生活满意度均优于对照组（P〈0．01）。结论健康行为训练可帮助患儿消除自卑心理,提高自尊水平。     

临床护士专业自我概念及其影响因素分析

目的 探讨三甲医院临床护士专业自我概念的情况及其影响因素.方法 应用专业自我概念量表对某三甲医院572名临床护士进行调查.结果 本科以上学历、年龄≥30岁、护龄≥10年、护师以上职称、护士长以上职务、已婚临床护士的专业自我概念明显高于大专以下学历、年龄〈30岁、护龄〈10年、低职称和无职务的未婚临床护士.结论 应重视并提高年龄〈30岁、护龄〈10年、低职称、无职务和未婚临床护士的专业自我概念.     

Self-management in older patients with chronic illness

Chronic illness causes the majority of disease burden and health costs in developed countries; however, this could be substantially reduced by optimal patient self-management. This study examined the levels of self-management in patients (n = 300) with chronic illness (chronic heart failure, chronic respiratory disease, Parkinson's disease and chronic schizophrenia) of moderate severity who had experienced an illness exacerbation in the last month. Patient's perceptions of self-efficacy in relation to their self-management and their sense of coherence were also assessed at baseline and 1 month later. No changes occurred in self-perceptions or self-management from baseline to follow-up. Patients at risk of poor self-management included people with low self-efficacy, poor sense of coherence, older age and a primary diagnosis of chronic schizophrenia. As self-efficacy is the only predictor known to be amenable to intervention, self-efficacy enhancing support should be promoted.     

聘用护士的专业自我概念现状及影响因素分析

目的：了解聘用护士的专业自我概念水平并分析其影响因素,尝试以新视角为提高聘用护士专业自我概念干预措施提供依据。方法：采用一般资料调查表、专业自我概念量表（PSCNI）、自我压弹量表（ER89）、家庭适应性和家庭亲密度量表（FACEⅡ-CV）对福建省福州市某三级甲等综合性医院239名聘用护士进行调查。结果：聘用护士的专业自我概念总分为（84.30±9.45）分,条目均分为（2.81±0.31）分。多元逐步回归分析显示,家庭亲密度、心理弹性、家庭发展阶段、每周夜班数为聘用护士专业自我概念的主要影响因素,共解释了40%的变异量。结论：医院管理者应该注重聘用护士的夜班数、家庭情况和心理弹性问题,通过给予积极的心理支持,倡导家庭和谐关系,以期提高聘用护士的整体专业自我概念,提高工作满意度,降低离职率。     

中国现代心理问题及心理疾病的社会影响因素分析

心理问题及心理疾病已经成为21世纪人类健康的最大杀手,经济高速发展所带来的选择的困惑、非公平竞争及环境污染等因素,是中国人进入“情绪负重时代”的社会环境因素,也是和谐社会构建亟待解决的问题。     

慢性伤口患者营养状况及其影响因素的调查分析

目的：了解慢性伤口患者的营养状况及其影响因素。方法：采用人体测量、实验室检查以及主观全面评定法（SGA）对102例慢性伤口患者进行营养状况评估。结果：慢性伤口患者中营养不良发生率为10.8%～40.2%,年龄、合并症指数、膳食摄入是否充分是营养不良发生的影响因素。结论：部分慢性伤口患者存在营养不良,应针对营养状况的影响因素给予护理干预。     

Promoting health for families of children with chronic conditions

AIM: This paper reports a study whose aim was to describe how nurses in a paediatric unit promote the health of families of children with chronic conditions during the children's hospitalization. BACKGROUND: It is stressful for a family when a child has a chronic condition and hospitalized. Nurses have the opportunity to promote family health while a child is hospitalized, and previous studies contain a wealth of recommendations on how this should be done. However, there is little research evidence about family care and how nurses promote the health of a family with a chronically ill child. METHODS: Forty nurses who worked in two paediatric units providing care for children with chronic conditions and their families participated in the study. Data were collected in two Finnish hospitals in 2002 using group interviews, and nursing actions were observed in both units for a period of 84 hours. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Data were collected until theoretical saturation was reached. FINDINGS: Family care was based on three distinctive strategies. Nurses used a systematic, selective or situation-specific strategy while promoting family health during a child's hospitalization. CONCLUSIONS: The findings indicate that nurses used different strategies while promoting family health during a child's hospitalization. The systematic way of working with families identified in the study seems a useful strategy. All three strategies of family nursing described here should be tested in other paediatric wards and in other geographical locations.     

2型糖尿病患者疾病不确定感及其影响因素的研究

目的调查2型糖尿病患者疾病不确定感状况并分析其影响因素,以期为患者的心理干预提供依据。方法采用一般资料调查表、疾病不确定感量表、糖尿病痛苦量表和社会支持评定量表对250例2型糖尿病患者进行问卷调查。结果 2型糖尿病患者疾病不确定感总分为(96.54±11.67)分;职业、家庭人均月收入、糖尿病痛苦和社会支持是患者疾病不确定感的主要影响因素。结论患者疾病不确定感处于中等水平,医护人员应加强对患者心理干预,降低疾病不确定感,以提高其生活质量及身心健康。