Adolescents' experiences of well-being when living with a long-term illness or disability

Present-day society has produced changes in family living patterns and conditions and this has resulted in new stressors and health problems. Most children and adolescents with chronic diseases and disabilities, who were previously cared for at hospitals and institutions for long periods, are now integrated in society and they are expected to live a normal life in the conditions that currently prevail. The number of young people with long-term illnesses/disability has increased worldwide during the last decades. There is lack of studies relating to the way young people regard their daily lives and factors that are important for their well-being. The aim of this study was to describe the meaning of feeling good in daily life in adolescents living with a long-term illness or disability. Eight boys and seven girls, aged between 12 and 19 years, with different conditions of long-term illness or disability, participated in the study. Tape-recorded interviews were conducted between the years 2003-2004 and the data were analysed using content analysis. The results revealed that the adolescents with long-term illness generally experienced well-being like everybody else. Three themes were found to be important in order to feel good: 'a feeling of acceptance of illness/disability as a natural part of life', 'a feeling of support' and 'a feeling of personal growth'. This study concludes that adolescents with long-term illness or disabilities experience well-being when they are allowed to prepare for living a normal life integrated in society.     

Nurses' role in caring for people with a comorbidity of mental illness and intellectual disability: a literature review

This article examines literature on the role of the nurse caring for people with a dual disability (DD) of intellectual disability and mental illness. A search of the literature between 2000 and 2010 resulted in a total of 21 articles that met the inclusion criteria. Seven key categories of the role of the nurse were identified: (i) advocacy/health promotion (including working with family); (ii) assessment/case management; (iii) behavioural interventions; (iv) communication; (v) leadership and the nurse's role within the multidisciplinary team; (vi) functions regarding medication administration; and (vii) safety/risk management. There is a paucity of research about the role of nurses working with people with DD, although a number of opinion-based articles exist. This article identifies a need for the role of the nurse working in DD to be more clearly articulated and for the development of evidence to guide best practice.     

Information about migraine disability influences physicians' perceptions of illness severity and treatment needs

OBJECTIVE: To assess physician-patient communication about headache-related disability and to evaluate the influence of information about disability on physicians' perceptions of illness severity and the treatment needs of migraineurs. BACKGROUND: Evidence suggests that migraine is suboptimally treated in clinical practice, partly due to poor communication between physicians and their patients. METHODS: One hundred five neurologists and primary care physicians with an interest in headache participated in two interactive surveys, one in North America (n=42) and one in Europe (n=63). Each survey focused on the evaluation of four videotaped migraine cases. The first case was evaluated twice, initially after a typical symptom history that centered on diagnosis and then following a fuller history of migraine disability. Additional questions assessed the extent of the collection of migraine disability information in clinical practice. RESULTS: Physicians reported that they recorded symptoms relating to diagnosis (eg, pain location/intensity, associated symptoms) rather than information on headache-related disability. Only about one third of patients volunteered disability information. When made available to them, physicians rated information on disability as one of the most important factors in assessing treatment needs. In particular, when physicians knew the patient's disability history: (1) the proportion of physicians who rated the patient's illness as "severe" increased by 128% in North America, 27% in Europe; (2) the proportion of physicians who recommended immediate treatment increased by 63% in North America, 37% in Europe; and (3) the proportion of patients recommended for a follow-up visit increased by 15% in North America, 18% in Europe. CONCLUSIONS: Physicians and patients often fail to discuss headache-related disability during consultation. This information has a powerful influence on physicians' perceptions of illness severity, treatment choice, and the need for follow-up. Tools to improve communication about headache-related disability, such as the Migraine Disability Assessment questionnaire, may favorably improve migraine management.     

Spirituality in the lives of people with disability and chronic illness: A creative paradigm of wholeness and reconstitution

To date, research within the domain of critical life events, coping, and adaptation has been mostly fragmented, outcome-oriented, and neglectful of individual differences. The aim of this research was to add a holistic understanding of the domain by using a creative hermeneutic and phenomenological perspective to understand how individuals with disability and chronic illness survive and cope successfully with their lives in spite of overwhelming odds. The lived experience of 35 informants and 14 autobiographers, who represented a wide range of people with disability and chronic illness, was used as the basis for understanding the phenomenological world of chronic conditions. Through in-depth interviews and autobiographical analysis the results were content analysed and organized into paradigm cases, exemplars and themes. Five factors that facilitated coping and adaptation were identified. The combined elements of spiritual transformation, hope, personal control, positive social supports, and meaningful engagement in life, enabled individuals to empower themselves and come to terms with their respective conditions. An overall paradigm and model of wholeness and reconstitution was also developed, which identified the processes by which people reconciled their outer forms of disability, decay or suffering and discovered an embodiment of their own inner resources and strengths. These experiences led many people to realize their own inherent sense of wholeness and unity, and to experience and integrate a deeper meaning, sense of self, and spirituality within their lives.     

Mental health inpatient experiences of adults with intellectual disability

This paper presents findings from a study exploring the mental health inpatient care of people with a dual disability of intellectual disability and mental health issues from the perspective of those people with the dual disability. A mixture of semi‐structured interviews and focus group interviews were carried out with nine participants who had been admitted to an inpatient unit for mental health care exploring their experience of care. Interviews were transcribed and analyzed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Analysis revealed themes around ‘Therapeutic and Meaningful Activity’, ‘Emotion Focussed Care’, and ‘Feeling Safe?’ Participants were able to identify the aspects of inpatient care that worked for them in terms of coping with time in hospital. This research suggests that there are several factors that should be considered in providing effective mental health inpatient care for people with dual disability. A number of strategies and recommendations for responding to their needs are identified and discussed.     

Psychosocial Problems Among Siblings of Children with Disabilities in Japan: Psychosocial Association Between Mothers and Siblings

We conducted a questionnaire survey to evaluate the psychosocial condition of siblings of children with disabilities in Japan. The participants were 50 siblings (aged 5–12, male = 42.0%) of children with disabilities and their parents as well as a control group consisting of 128 elementary school pupils (aged 6–12, male = 57.4%) and their parents. The proportion of mothers of children with disabilities suffering from a minor psychiatric illness and the proportion of corresponding siblings with psychosocial problems were significantly higher in the test group than in the control group, and a multiple logistic regression analysis indicated that mothers suffering from a minor psychiatric illness were significantly associated with siblings with psychosocial problems among families of children with disabilities. We discuss the psychosocial problems of siblings of children with disabilities.     

住院精神病人健康教育需求的调查与分析

为探讨住院精神病人各期对健康教育的需求,对今后开展健康教育提供依据和指导。对205例住院精神病人进行问卷调查。结果显示精神病人健康教育需求呈现多样化、阶段性特点,健康教育方式以“一对一”及小组式语言教育,教育内容主要是与疾病有关的知识和心理健康知识。使病人在住院期间获得预防保健知识,利于疾病的康复。     

成人不明原因丙氨酸转氨酶升高危险因素分析

目的:通过流行病学调查,明确上海市浦东新区成人不明原因丙氨酸转氨酶(ALT)升高的检出率及其危险因素。方法:采用随机多级分层整群抽样对上海浦东新区4个居委会16岁以上居民进行调查,内容涉及问卷咨询、体格检查、口服75g葡萄糖耐量试验、血脂检测、血ALT检测及肝脏实时超声检查,并对ALT升高者进一步检测HBsAg。结果:浦东新区上钢街道总共1942人入选此次调查(排除乙肝病毒感染、过量饮酒者),其中男性729人,女性1213人,年龄16～75岁。不明原因ALT升高的检出率为10.14%。ALT升高组糖脂代谢紊乱的患病率明显高于其对照组。多元Logistic回归分析显示,低龄、舒张压、腰围、餐后2h血糖、三酰甘油、脂肪肝、高血压病是发生ALT升高的独立危险因素。结论:糖脂代谢紊乱及其相关非酒精性脂肪性肝病是不明原因转氨酶升高的主要原因。     

Rehabilitation, chronic illness and disability: the missing elements in nurse education

Chronic illnesses represent one of the most significant health challenges in all developed countries and currently there is considerable debate about how to meet the rehabilitative needs of chronically ill and disabled people. The literature suggests that nursing has a potentially significant, but largely unrealized, role to play in addressing areas of current deficit. However, to fulfil this potential it is vital that the educational preparation of nurses at both qualifying and post-qualifying levels equips them with the necessary knowledge and skills. This paper describes a study which analysed curriculum documents from an extensive range of courses in the United Kingdom (UK) in order to determine the emphasis placed on rehabilitation, chronic illness and disability. The results reveal the overall lack of attention given to these important areas and the superficial manner in which key concepts are addressed. The need to identify more clearly the nursing contribution to rehabilitation is highlighted and indicative areas of knowledge and skill required to develop an expanded role are presented.     

Function in job seekers with mental illness and drug and alcohol problems who access community based disability employment services

Purpose: This study identified functioning, health, and social needs in jobseekers with mental disorders independently assessed as having capacity to work and referred to disability employment services. Differences in function between jobseekers with mental illness alone and with additional drug and alcohol problems were examined with view to identifying interventions for vocational rehabilitation.

Method: A convenience sample of 116 jobseekers completed BASIS-32, CANSAS, AUDIT, DAST-10 and 6 items from the EXIT interview and were divided into two groups: mental illness only, and additional drug and alcohol issues (AUDIT total score >8 and/or DAST total score >3). Analysis of variance was used to determine group differences. Results: Jobseekers reported low-moderate problems with function. Over 40% of the sample reported unresolved psychological distress, physical health needs, and social/daytime activity needs. Thirty-five jobseekers (30%) had additional drug and alcohol problems and reported significantly greater difficulty with impulsive/addictive behavior and poorer memory and executive function than the mental illness only group. No significant differences were identified in past work functioning.

Conclusions: Screening all job seekers for psychological, physical, and social needs to identify suitable treatment and rehabilitation strategies and providing interventions that improve emotional regulation and executive function for job seekers with additional drug and alcohol problems may improve employability of job seekers accessing disability employment services.

Implications for Rehabilitation

• Many job seekers with co-existing mental illness and drug and alcohol problems who have been assessed as having the capacity to work report unresolved psychological distress, physical health needs, and social activity requirements.

• Early screening for psychological, health and social needs using a general needs measure, such as the CANSAS, will help to identify potential barriers to employment, including drug and alcohol problems.

• Vocational rehabilitation interventions that improve executive function and emotional regulation may improve employability of job seekers with additional drug and alcohol issues.

     

Health and illness: a dialectical concept analysis

ABSTRACT The purpose of this study is to describe and understand people's conceptions of health and illness. The analysis of the concepts is based on unstructured interviews with men and women aged 30 and 50. The approach of the study is hermeneutical, and the framework for the concept analysis is formed by Hegel's dialectical logic. The interviewees' definitions of health and illness were comprehensive, describing the physical, psychological and social aspects of human existence. The definitions of health ranged from holistic to one-dimensional. Illness was understood as something more than a disease or its physical symptoms. The analysis also indicated that the interviewees did not equate non-health with illness or non-illness with health. Including the categories of non-health and non-illness added a new dimension to the analysis of health and illness, enriching the semantic content of the concepts studied.     

Differential effects of age and illness duration on pain-depression and disability-depression relationships in rheumatoid arthritis

We examined the differential effects of age and illness duration on pain—depression and disability—depression relationships in a sample of patients diagnosed with rheumatoid arthritis (RA). Consistent with existing literature, main effect results indicated that shorter illness duration and greater perceived pain and functional disability all related to increased levels of depression. More importantly, multiple regression analyses revealed that illness duration moderated the observed disability—depression relationship. Specifically, perceived functional disability exerted a greater negative impact on levels of depression in patients with relatively shorter illness durations compared to patients with longer illness durations. Neither age nor illness duration moderated the association between pain and depression. In general, our findings suggest that age and illness duration differentially influence pain—depression and disability—depression relationships in RA. We conclude the paper with a discussion of treatment implications of our findings for persons with RA.     

Optimal management of mental health patients in Australian emergency departments: Barriers and solutions

Objectives: The study aimed to describe: (i) the perceived barriers faced by emergency clinicians in the assessment and management of patients presenting with a mental health complaint to Australian hospital EDs; and (ii) perceived strategies to optimize care of the mentally unwell in the ED. Methods: Semistructured interviews with open and closed question formats were used to explore the barriers perceived by ED doctors and nurses in assessing and managing patients with mental health presentations. Interviews were transcribed verbatim and thematically coded by two researchers using the Framework Approach. Results: Thirty‐six interviews were conducted with 20 members of the Australasian College for Emergency Medicine and 16 members of the College of Emergency Nursing Australasia representing the various Australian jurisdictions. Thematic analyses revealed that a range of resource, environmental, staff and patient factors contribute to difficulties in managing mental health patients. Solutions suggested by interviewees included improved resources, ED redesign and improved links to resources outside the ED. An overwhelming majority of participants perceived the need for more educational opportunities in mental health. Conclusion: Although the provision of timely and quality care is expected for all patients attending EDs, there exist multiple barriers to provision of adequate care for ED patients presenting with mental illness. Many of these are systems‐based and thus require systems‐based solutions. ED clinician's perceive that improved educational opportunities in mental health, however, might alleviate some barriers they face. Consideration should be given to a comprehensive, quantitative mental health‐related learning needs analysis of ED clinicians.     

Improving care through health economics analyses: cost of illness and headache

The impact of headache disorders is a problem of enormous proportions, both for individual and society. The medical literature tried to assess its effects on individuals, by examining prevalence, distribution, attack frequency and duration, and headache-related disability, as well as effects on society, looking at the socio-economic burden of headache disorders [Rasmussen (Cephalalgia 19:20-23, 1999)]; [Lanteri-Minet et al. (Pain 102:143-149, 2003)]. The issue of costs represents an important problem too, concerning both direct and indirect costs. Direct costs concern mainly expenses for drugs. Migraine has a considerable impact on functional capacity, resulting in disrupted work and social activities: many migraineurs do not seek medical attention because they have not been accurately diagnosed by a physician or do not use prescribed medication [Solomon and Price (Pharmacoeconomics 11:1-10, 1997)]. Indirect costs associated with reduced productivity represent a substantial proportion of the total cost of migraine as well. Migraine has a major impact on the working sector of the population, and therefore, determining the indirect costs outweighs the direct costs. This study will explain the notion of cost of illness, examining how it could be applied in such a framework. Then, an overview of the studies aimed at measuring direct and indirect costs of migraine and headache disorders will be carried out, later shifting on to the relationship between costs and quality of life for people affected by headache disorders. Finally, a brief review on advantages of new pharmaceuticals and preventive treatments for migraine for patients and society will outline improvements in the context of cost-effectiveness and cost-utility analysis.