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PubMed2003

Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics.

OBJECTIVE: To assess and compare quality of life (QOL) for two groups of patients with amyotrophic lateral sclerosis (ALS): (1) those reporting a more positive quality of life and (2) those reporting a more negative quality of life. METHODS: One hundred patients with ALS participated in this cross-sectional, descriptive study conducted in an ALS clinic. Quality of life was graded in two ways: (1) a global question about present QOL, giving four choices (life could not be better, usually good, sometimes good, and not good) which the researchers divided into two groups: the more positive QOL and the more negative QOL and (2) patients' responses to a 25-item internally generated open-ended survey. The Appel ALS Rating Scale measured objective data for physical strength and functioning. RESULTS: One hundred patients (68 men and 32 women) with a mean age of 58.2 (range, 29-82) years participated in the study. The average disease duration was 1.9 (range, 0.08-15) years. Patients who reported the more positive QOL were younger, had a shorter disease duration, and experienced less disease severity (p < 0.05). Those endorsing the more positive QOL reported more adequate finances and less stress over disease characteristics (p < 0.05). CONCLUSIONS: Illness characteristics do influence QOL for patients with ALS, but they are not the only concerns. When measuring QOL in patients with ALS, the unique features of the psychosocial factors, personality traits, and spiritual factors, in addition to disease symptoms, need to be identified and discussed with patients and families throughout the illness.

Adaptation, Psychological↗
PubMedDate not supplied

Illness behavior among patients attending a sexually transmitted disease clinic.

A questionnaire on illness behavior was administered to a consecutive sample of 90 men and 47 women attending a public clinic for sexually transmitted diseases. Abnormal illness behavior (particularly general hypochondriasis, degree of psychologic perception of illness, and denial of stresses apart from the illness) increased with the number of previous infections. Those with no previous infections saw sexually transmitted disease as an illness significantly less often than those with previous infections. First attenders have a higher risk of noncompliance with treatment, and illness behavior may develop by association with repeated infections and the increasingly apparent connection between behavior and illness. These findings applied to homosexual as well as to heterosexual men, although responses to the questionnaire showed that homosexual men were significantly less hypochondriacal. It is concluded that there is greater evidence of psychologic maladjustment among this clinic population than among that attending general practices and that illness behavior is related to established risk factors such as more partners and previous infections.

Adult↗
PubMedDate not supplied

Patients' perceptions of health, chronic illness, and nursing diagnoses.

This descriptive, exploratory study sought to determine how persons with chronic health problems define their experiences of health and illness and to collect information from these subjects regarding their ability to identify their health problems on the list of NANDA-approved nursing diagnoses. A convenience sample of 19 subjects was interviewed using qualitative triangulation methods. Subjects defined experiences of health in terms of their abilities to perform functions independently. Illness was defined primarily in terms of physical symptoms. Thirteen subjects identified self-initiated activities oriented toward alleviation of physical symptoms as strategies for helping themselves get better or feel better when "sick." Subjects were able to use nursing diagnoses to identify their health problems, selecting 61 of the 106 NANDA-approved diagnoses. Data related to subject-selected diagnoses are compared with available NANDA diagnoses by taxonomy category and nurse-interviewer diagnoses. Moving, Perceiving, and Valuing were the taxonomy categories that were most frequently identified by this sample. A new nursing diagnosis of altered nutrition: regimentation (in timing, amounts, and types of food), as well as the need for additional diagnostic development in the areas of urinary frequency, disrupted relationships, and medications were identified by the subjects. Finally, the researchers propose the development of nursing diagnoses that foster health promotion and illness prevention based on the health orientation of this sample, despite their chronic health problems.

Adult↗
PubMed2005

Assessing parents' perception of children's risk for recreational water illnesses.

Understanding people's risk perceptions and motivations to adopt preventive behavior is important in preventing the spread of recreational water illnesses (RWI) and other emerging infectious diseases. We developed a comprehensive scale measuring parents' perceived risk of their children contracting RWI. Parents (N = 263) completed a self-administered questionnaire with scale items based on 4 constructs of the Protection Motivation Theory: perceived vulnerability, perceived severity, response efficacy, and self-efficacy. Exploratory factor analysis identified 7 underlying factors, indicating 7 subscales of perceived risk for RWI. Cronbach alpha ranged from 0.60 to 0.81. The Precaution Adoption Process Model supported scale construct validity. This study provides the first perceived risk scale for exploring psychosocial factors that may predict or mediate the adoption of behaviors that prevent the spread of infectious diseases contracted by children while swimming. Findings from this study also provide implications for encouraging preventive behavior against other emerging infectious diseases.

Adult↗
PubMed2003

Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet.

BACKGROUND: Psychiatric symptoms, common in untreated coeliac disease patients, may improve after gluten withdrawal. AIMS: To estimate the incidence of psychiatric disorders in coeliac disease patients on gluten withdrawal and to evaluate: (1) the psychological weight of a chronic disease that involves a restrictive diet and a limited life style; (2) the acceptance of the disease; (3) the effects of both disease and diet on behaviour and quality of life. PATIENTS AND METHODS: Three groups of 100 patients (coeliac disease patients, diabetic patients and healthy controls, respectively) were assessed by means of a professional semi-structured diagnostic interview based on DSM-IV criteria. This interview, together with specific psychiatric questionnaires, ruled out axis I or II psychopathological disturbances. RESULTS: The modified Self-rating Depression Scale and State and Trait Anxiety Inventory Y2 scores were significantly higher in both coeliac and diabetic patients than in healthy controls. The duration of gluten restriction was related to significantly higher modified Self-rating Depression Scale scores in patients with a more recent diagnosis. Quality of life was poorer in both coeliac and diabetic patients than in healthy controls and significantly correlated with anxiety. The Illness Behaviour Questionnaire showed a high psychological and somatic perception of illness in both coeliac and diabetic patients. Its subscale scores correlated significantly with anxiety and depression symptoms. CONCLUSIONS: In coeliac disease, affective disorders should be ascribed to difficulties in adjusting to the chronic nature of the disease rather than directly to the disease itself, thus giving an indication for preventive liaison psychiatric interventions.

Adult↗
PubMed2000

Symptoms of posttraumatic stress in young adult survivors of childhood cancer.

PURPOSE: This study assessed the prevalence of posttraumatic stress symptoms in young adult survivors of childhood cancer and the association of posttraumatic stress with anxiety, adjustment, perceptions of illness and treatment, and medical data extracted from oncology records. PATIENTS AND METHODS: Seventy-eight young adults (ages 18 to 40 years) who had been treated for childhood cancer completed questionnaires and psychiatric interviews assessing posttraumatic stress, anxiety, perceptions of their illness and treatment, and symptoms of psychologic distress. Data on treatment intensity and severity of medical late effects were collected via chart review. RESULTS: Of the patient sample, 20.5% met American Psychiatric Association Diagnostic and Statistical Manual criteria for posttraumatic stress disorder (PTSD) at some point since the end of their treatment. Clinically significant levels of intrusive (9%) and avoidant (16.7%) symptoms were reported. Participants also reported elevated state and trait anxiety. Participants with PTSD reported higher perceived current life threat, more intense treatment histories, and higher (and clinically significant) levels of psychologic distress than those who did not have PTSD. CONCLUSION: One-fifth of this sample of young adult survivors of childhood cancer met criteria for a diagnosis of PTSD, with clinically significant symptoms of intrusion and avoidance reported. As in other samples, PTSD in young adult survivors was associated with anxiety and other psychologic distress. Survivors' perceptions of treatment and its effects were more highly associated with posttraumatic stress than were more objective medical data. The data suggest that cancer-related posttraumatic stress may emerge in young adulthood and may affect the achievement of developmental milestones and orientation toward health care.

Adolescent↗
PubMed2005

Risk perception bias, self-reporting of illness, and the validity of reported results in an epidemiologic study of recreational water associated illnesses.

Epidemiologic studies of water associated illness often have to rely on self-reported symptoms of the outcome illness(es) under study. Individual participant's perception of risk, in theory, can affect the validity of self-reported symptoms. The magnitude and effect of possible "risk perception bias" was evaluated as part of a series of randomized trials designed to assess infectious disease transmission via exposure to marine recreational waters with modest sewage contamination. All study subjects were blinded to both their individual indices of exposure and the outcome illnesses under study. Of the five outcome illnesses studied, the effect of "risk perception bias" only effected one: skin ailments. Although analysis of crude rates of skin ailments showed the exposed group (bathers) to be 3.5 times more likely to report skin ailments relative to the non-exposed (non-bathers), when the data was stratified by any perceived health risk of bathing in such waters, this association was shown to be spurious in nature. Bathers having pre-conceived notions of any health risk due to the exposure were 10.63 times more likely to report skin ailments relative to the unexposed (non-bathers) (95% CI 2.36-47.8, P = 0.0002), while bathers without any pre-conceived notion of risk were no more likely to report skin ailments relative to non-bathers (OR = 0.60, 95% CI 0.11-3.24, P = 0.71). Further stratification by exposure grouping showed bathers with pre-conceived notions of excess risk to be 4.78 times more likely to report skin ailments relative to bathers without any notion of excess risk (95% CI 1.04-21.86, P = 0.03), while among non-bathers those with pre-conceived notions of risk were 3.70 times less likely to report skin ailments relative to non-bathers without any pre-conceived notion of risk (95% CI 0.70-19.60, P = 0.10). This study shows that "risk perception bias" can be strong enough to lead to spurious associations in the presence of self-reported symptoms, and should be controlled for in future epidemiologic studies of recreational water associated illnesses and other water associated environmental exposures where the use of self-reported symptoms cannot be avoided.

Bias↗
PubMed1997

Gendered perceptions of dependency in discussions of mental illness.

Current research on mental health typically equates dependent behavior with negative health outcomes and thereby ignores how other people perceive dependency and mental illness in gendered ways. Using data from the Indianapolis Network Mental Health Study, I conducted a quantitative analysis of gender differences in the prevalence of network members' discussions of dependency, followed by a qualitative analysis of how network members describe dependency. The sex of the network member, together with the sex of the patient, significantly predict discussions of dependency, net of other factors. Moreover, network members in same-sex dyads are more likely to discuss dependence than are their counterparts in opposite-sex dyads. The qualitative results provide a more contextualized understanding of the connections among gender, dependency, and mental illness. Male network members' reports indicate strong censure of male patients for dependent behavior, while female network members' reports indicate that female patients see dependency in a more nuanced and complex way. In addition, network members in opposite-sex dyads are more accepting of dependent behavior than network members in same-sex dyads. These findings underscore the importance of examining how others perceive mental illness and how these perceptions may be gendered.

Dependency, Psychological↗
PubMedDate not supplied

Experiences and perceptions of music therapy in critical illness.

AIM: To gain insight into patients' and nurses' perception of the benefits of music therapy during critical illness. METHOD: The patients received music therapy on two prescribed occasions for 30 minutes each day. Unstructured interviews were conducted with five patients and four nurses and analysed according to Burnard's framework (1991). RESULTS: Patients can and do recall listening to music, even when they have been sedated and ventilated. They related to the music that they were listening to and some experienced imagery concerning the music. The nurses found it useful as an aid to wean patients off the ventilator, helping to keep them calm and focused. CONCLUSION: The study concluded that music is useful not only for relaxing patients but also in some cases 'relocating' them from the critical care area to the place where they would normally be listening to the music.

Critical Illness↗
PubMed1991

Cultural study of diarrhoeal illnesses in central Thailand and its practical implications.

A cultural study of diarrhoeal illness was conducted using the Explanatory Model Interview for Cultural Assessment (EMIC) to compare two socioeconomically distinct subdistricts of central Thailand and to determine the practical implications of illness-related perceptions, beliefs and practices. Subjects specified 12 terms for diarrhoeal illnesses that were grouped into four locally meaningful groups, namely, tong-sia, a non-specific term for diarrhoea, bid, associated with colicky abdominal pain, ahiwa, referring to severe illness, often cholera; and taae-tua, diarrhoea associated with milestones of growth and development. To compare pre-existing beliefs and practices with the experience of caretakers when actually confronted with an episode of illness, we inquired about each of the terms and about index cases in subsequent interviews over the course of a six-month surveillance period. Patterns of distress, perceived causes, and preferences for help seeking and treatment elicited by the EMIC identified cultural features of the four groups of diarrhoeal illness. Perceived causes of diarrhoea associated with sanitation, hygiene and infection, which most respondents considered preventable, were prominent explanations for three of the four categories, and the fourth was viewed as a normal feature of growth and development, rather than medical illness. We discuss these and other findings with reference to use of ORS and other issues related to the prevention and control of diarrhoeal illness, concluding with recommendations for public health policy and research.

Child, Preschool↗
PubMedDate not supplied

Health professionals caring for chronically ill adolescents: adolescents' perspectives.

PURPOSE: To describe chronically ill adolescents' perceptions of how health professionals can best care for chronically ill adolescents. DESIGN: A qualitative study with tenets from grounded theory, including theoretical sampling and the constant comparison of data. SETTING: Participants' homes of private hospital offices. PARTICIPANTS: Twenty-three adolescents, 13 to 16 years of age, who were diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis. MAIN OUTCOME MEASURES: Open-ended, in-depth interview method. RESULTS: Eight themes emerged: (1) treat me like a person; (2) try to understand; (3) don't treat me differently; (4) give me some encouragement; (5) don't force me; (6) give me options; (7) have a sense of humor; and (8) know what you are doing. CONCLUSIONS: Health professionals need to adopt an overall approach described as careful maneuvering when caring for adolescents with chronic illness. This approach involves the health professional having sound knowledge and the ability to guide adolescents confidently and sensitively in the management of their illness.

Adolescent↗
PubMed2006

Food safety perceptions and behaviors of Kentucky consumers.

In several areas, Kentuckians practice more risky health behaviors than most of the rest of the nation. The Health Belief Model states that individuals with lower perceived risks practice less healthy behaviors. This study sought to determine if this was true for food safety by assessing food safety perceptions and behaviors of Kentucky consumers. Data were collected through a telephone questionnaire based on a survey by the U.S. Food and Drug Administration; 728 respondents participated. Food safety perceptions were analyzed by examining participants' responses to confidence in the safety of the food supply, perception of likelihood of people becoming sick because of foodborne illness, and perception of where food safety problems are most likely to occur. Significant differences were found in food safety perceptions for age, gender, household income, education, and employment in the food industry. Analysis of food safety behaviors revealed differences in food handling behaviors for gender, education level, household income, race, and households with a member aged 65 years or older. Significant relationships were found between respondents' food safety perceptions and behaviors. In general, Kentucky consumers who perceived higher risks exhibited safer food handling behaviors. Strategies to increase the understanding of real and perceived food safety risks in the home combined with strategies that target specific demographic groups may be the most effective approach to improve food handling practices. A better understanding of consumers' food safety risk perceptions and behaviors could lead to more effective food safety education materials and messages.

Adolescent↗
PubMed1982

Children's perceptions of cancer in comparison to other chronic illnesses.

Research which deals with beliefs and feelings about cancer suggests that cancer is somewhat unique among chronic illnesses with respect to the intensity of negative feelings and stigma attached to this disease. The research results to date fit well in the context of the health belief model and indicate that cancer is extremely high in perceived severity, moderate in perceived susceptibility, and extremely low in perceived benefits of preventive and treatment programs. This paper reports the results of a study which used the semantic differential technique to determine a sample of seventh-grade students' perceptions of cancer in comparison to heart disease, diabetes, and mental illness. The results indicated that children generally view cancer as higher in severity (except for heart disease), higher in susceptibility, and lower in benefits of treatment than the other illnesses. Perceptions did not differ by sex, socio-economic background, or knowledge of cancer. However, in addition to perceiving cancer as being very high in severity and feeling pessimistic about the chances of recovering, black children believe they are personally more susceptible than do white children. In general, this combination of perceptions provides a unique stigma to cancer as a fearsome chronic disease with little hope of cure. The low perceived benefits of treatment presents a barrier to action which has important implications for health education programs.

Adolescent↗
PubMed1999

Illness behavior, emotional stress and psychosocial factors among asymptomatic HIV-infected patients.

BACKGROUND: Over the last years the way in which patients with chronic physical illness respond to their illness (illness behavior) has been explored by several studies. This study sought to examine characteristics of illness behavior and to investigate the association between illness behavior and psychosocial and clinical variables among asymptomatic HIV-infected subjects. METHODS: Seventy-three asymptomatic HIV+ outpatients completed self-report questionnaires to evaluate illness behavior (Illness Behavior Questionnaire), psychological stress symptoms (Brief Symptom Inventory), personality variables (External Locus of Control and Courtauld Emotional Control Scales) and social support (Social Provision Scale). RESULTS: Psychological morbidity ('caseness' = 34%) was associated with a pattern of illness behavior characterized by conviction of disease progression, irritability, dysphoria, psychological perception of illness and low denial. Individual capacity to express emotions, adequate levels of social support and low levels of depression, as well as clinical variables (high number of CD4+ cells, recent notification of HIV infection and nonintravenous drug use category) influenced a more adaptive illness behavior. Psychological stress and low CD4+ cell count were the main predictors of the affective dimension of illness behavior. CONCLUSIONS: Psychosocial variables resulted to influence the tendency to interpret illness in a nonadaptive way in asymptomatic HIV-infected subjects. Such variables merit to be routinely examined within the doctor-patient relationship in AIDS clinics.

Adaptation, Psychological↗