Health prevention seeks to avoid the onset of disease or symptoms by eliminating or at least minimizing environmental factors that increase the risk of illness. This article describes Ability OnLine, an innovative program designed to reduce the isolation young people can experience in a healthcare facility or when confined to their home. The electronic bulletin board is a friendly platform for disabled and chronically ill children to easily communicate with their peers and adult and teen mentors.
Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the moral experience of 12 Canadian families--parents, ventilator-dependent child, and well siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families.
Ehlers-Danlos syndrome (EDS) is a relatively rare, inherited connective tissue disorder and skin hyperextensibility, joint hypermobility, chronic joint and limb pain, blood vessel and tissue fragility are frequent symptoms. The aims of this study were to describe the degree to which individuals with EDS accept and cope with perceived limitations related to the syndrome, and to determine the relationships between acceptance of disability (AD), sense of coherence (SOC), functional health status and background data. Four questionnaires were mailed: the AD scale Modified (ADM), the SOC Scale, the Sickness Impact Profile (SIP) and a background form. The respondents with EDS were recruited through the EDS National Association in Sweden and the response rate was 74% (69 females and eight males). The Ethical Committee at Huddinge University Hospital (ref. no. 152/95) approved the study. This study has shown that the level of AD and SOC in individuals with EDS is similar to other patient groups, e.g. individuals with ostomy and with diabetes. Further, the SOC was in concordance with that of the general population. Those working full-time accepted their disability to a greater degree than those on sick leave or disability pension. A multiple regression analysis showed that a greater AD was associated with a higher level of SOC and a better functional health status. The SOC and SIP together accounted for 50% of the variance in the ADM. For health promotion in nursing practice it is important to have insight into the problem areas which may influence the overall life situation for an individual with EDS. A key issue for nurses is to identify individuals with low acceptance of their disease and/or low SOC in order to support these persons' adaptation process. Future research on EDS may be directed towards projects focusing on the development and implementation of models to strengthen the level of AD and SOC in this group.
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.
Cardiovascular responses to psychological events may mediate the influence of stress on cardiovascular disease. In this study the authors asked whether cardiovascular responses to psychological challenge changed with age and whether such changes were intrinsic to aging or could be attributed to the influence of disease and medications. Cardiovascular reactivity to mental challenge was examined in 902 men ranging in age from 46 to 64 years who participated in the Kuopio Ischemic Heart Disease Risk Factor Study. A battery of 4 tasks was used to induce cardiovascular responses. Current disease status, age, and medication use were entered into hierarchical regression analyses to assess their relation with measures of cardiovascular reactivity. Age and hypertension contributed independent, approximately equal, but small amounts of variance in the cardiac and vascular reactivity indexes. Medications also influenced reactivity independently of age and disease. Performance on the tasks was more consistently altered by age than by disease or medication. Cardiac and vascular reactivity increased with increasing age and the presence of hypertension. The authors conclude that both age and disease state must be considered when examining cardiovascular reactivity as a risk factor for disease.
This study determined whether women in a primary care practice who described one or both of their parents as alcohol dependent (group A) or harsh, rigid, or difficult (group B) were more likely to have chronic illness than women who denied having parents with these characteristics (group C).
A consecutive sample of 120 women scheduled for comprehensive physical examinations were interviewed to determine parental characteristics, demographic data (age, education, employment, and marital status), and clinical information (chronic illness and lifetime surgeries). In addition, all women were asked standardized questions about sexual and physical abuse.
The overall difference among the groups for women with a history of chronic illness was significant (P less than .001). More women in groups A (55%) and B (48%) were identified with chronic illness than in group C (18%). Women in groups A and B also reported more sexual and physical abuse (32% and 44%, respectively) than women in group C (8% [P less than .001]). Women identifying abuse were diagnosed with more chronic illness (67%, compared with 25% [P less than .001]) and more lifetime surgeries (3.3 compared with 1.75 [P less than .05]) than women denying abuse.
Parental alcoholism and parental rigidity were associated with increased prevalence of chronic illness and physical or sexual abuse among women patients.
This paper examines the associations between chronic disease, age, and physical and mental health-related quality of life (HRQOL), using data collected in 10 studies representing five chronic conditions. HRQOL was measured using the SF-36 or the shorter subset, SF-12. Physical Component Summary (PCS) and Mental Component Summary (MCS) scores were graphed by condition in age increments of 10 years, and compared to age- and sex-adjusted normative data. Linear regression models for the PCS and MCS were controlled for available confounders. The sample size of 2418 participants included 129 with renal failure, 366 with osteoarthritis (OA), 487 with heart failure, 1160 with chronic wound (leg ulcer) and 276 with multiple sclerosis (MS). For the PCS, there were large differences between the normative data and the mean scores of those with chronic diseases, but small differences for the MCS. Female gender and comorbid conditions were associated with poorer HRQOL; increased age was associated with poorer PCS and better MCS. This study provided additional evidence that, while physical function could be severely and negatively affected by both chronic disease and advanced age, mental health remained relatively high and stable.
Although it has become an accepted standard to acknowledge the patient as a full partner in health care decisions, replacing traditional authoritative relationships with those based on an emancipatory model, the experiences of persons living with chronic illness confirm that this paradigm shift is not yet apparent in many health care relationships. In this paper, the authors present a qualitative secondary analysis of combined data sets from their research into chronic illness experience with two quite different chronic diseases - Type I Diabetes (a socially legitimized chronic disease) and Environmental Sensitivities (a disease which is currently treated with considerable scepticism). Comparing the experiences of individuals with diseases that are quite differently socially constructed, it becomes possible to detect common underlying health professional values and attitudes that powerfully influence the experience of living with and negotiating health care for a chronic illness. In the discussion of findings from this study, the authors examine the implications of the spiral of behaviors that fuels mutual alienation in chronic illness care relationships if professionals are unable to value patient expertise.
Psoriasis is one of the most common chronic skin diseases. The author presented results from a qualitative study focusing on patients with severe psoriasis in an acute phase and their experience of living with the disease. Twenty-two hospitalized patients with psoriasis were interviewed in depth. The interviews were consecutively analyzed according to grounded theory methodology. Bodily suffering emerged as a core variable in the data. Bodily suffering includes the following categories: the visible body, staying on an even keel, coping with an all-consuming disease, and social vulnerability. The results of this study indicate that the criterion for the management of soriasis should be the patients' own perception of the consequences of the disease.