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PubMed2003

Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians.

OBJECTIVES: To examine agreement between patients, caregivers, and clinicians regarding prognosis communication and to examine patients' and caregivers' desire for prognostic information. DESIGN: Cross-sectional survey. SETTING: Participants' homes. PARTICIPANTS: Two hundred fourteen persons aged 60 and older with a limited life expectancy secondary to cancer, congestive heart failure, or chronic obstructive pulmonary disease; caregivers; and clinicians. MEASUREMENTS: Patient-clinician and caregiver-clinician agreement about the occurrence of prognosis discussions and patient and caregiver desire for prognostic information. RESULTS: In 46% of patient/clinician and 34% of caregiver/clinician pairs, the clinician reported saying that the patient could die of the underlying disease, whereas the patient or caregiver reported no discussion. In 23% of patient/clinician and 30% of patient/caregiver pairs, the clinician reported discussing an approximate life expectancy, whereas the patient or caregiver reported no discussion. Of 205 patients who reported no life expectancy discussion, 40% did not want this discussion. Whereas 83% of those believing they had 1 year or less to live wanted to discuss prognosis, 79% of those believing they had 1 to 2 years, 53% of those believing they had 2 to 5 years, and 50% of those believing they had more than 5 years or who were unwilling to answer wanted this discussion (P=.007). CONCLUSION: Although clinicians report that they are discussing prognosis, patients and caregivers frequently do not corroborate these reports. Furthermore, many patients do not want prognostic information. Despite previous reports concluding that patients want full disclosure about their illness, many seriously ill older persons and caregivers may not be ready or able to receive prognostic information.

Aged↗
PubMed2003

Coping strategies, illness perception, anxiety and depression of patients with idiopathic constipation: a population-based study.

BACKGROUND: Functional constipation has important psychological elements. AIM: To investigate the prevalence of functional constipation in an Asian population, and the interplay among functional constipation, anxiety/depression, perception and coping strategies. METHODS: An interview of 3282 patients was made by telephone survey. Constipation was diagnosed by Rome II criteria. Coping ability and anxiety/depression were assessed by validated questionnaires. RESULTS: Fourteen percent of the interviewees had constipation. Anxiety and depression scores were higher in constipated than in healthy subjects (P < 0.0001 and < 0.0001), and in female than male patients (P = 0.02 and < 0.0001). Patients who were aware of their symptoms perceived greater impact on their lives (P < 0.001). Frequent use of coping strategies associated with lower anxiety scores (P < 0.0001). Female were more frequently aware of the symptoms (P = 0.004), less frequently used coping strategies (P = 0.008). Regression analysis showed that female and high anxiety level were the independent factors for predicting the perception of constipation, whereas anxiety was the only independent factor for predicting the use of coping strategies. CONCLUSION: Constipation associated with anxiety and depression is prevalent in the general Asian population. Female sex and anxiety are important aetiological factors in constipation, affecting perception and the use of coping strategies.

Adaptation, Psychological↗
PubMed2000

[Insufficient ventilation as the etiology of illness perception in an elementary school].

PURPOSE: Two years after renovation of the classrooms in a primary school (installation of insulated windows and closing of the ventilation shaft) pupils and teachers complained about offensive odours, irritation of the eyes and of the nose, complaints of the respiratory tract, headaches and disturbed mental concentration. The presented study determines the causes, suggests measures for help and checks their effectiveness by means of measurements. METHODS: Before starting our measurements, the air quality had already been assessed by an expert. There was no evidence of elevated concentrations of air contaminants. Because of the content of phthalate plasticizers and flame retardants in the linoleum sealants there was an offensive odour. To determine the cause, the air in the subjective mostly affected classroom was analysed for phthalate plasticizers, their metabolites and alkyl phosphates. We also made aerosol measurements with a cascade impactor, determined bacterial counts in the air, and measured the indoor climate and the internal air flow. RESULTS: The concentrations of phthalate plasticizers and their metabolites in the air were not elevated significantly. The screening for alkyl phosphates was negative. The amount of inhalable particles was 0.046 mg/m3. The bacterial count in the air was negligible. On the other hand the indoor climate during the heating period in winter was remarkably changed. The average room temperature was 26 degrees C (reaching a maximum of 36 degrees C with direct sunlight in the classroom), the average humidity was 21% (minimum 7%) and the change of air was approximately 0.5 per hour. Reopening the ventilation shaft and tilting of only one window resulted in a much greater rate of air change. After installation of temperature regulators and regular use of the venetian blinds in the classroom, the room temperature and the relative humidity during the morning lessons were, as a rule, normalised. Among both pupils and teachers the reports of offensive odours and health disorders were subsequently clearly reduced. CONCLUSIONS: To determine the cause of health disorders indoors, it is apparently to be of great importance to carry out measurements of the climate as well as to assess the level of air contaminants. By use of modern energy-saving construction possible effects on the indoor climate should be be taken into account during the planning stage of changes to avoid health disorders resulting from changed interior climate conditions.

Air Pollution, Indoor↗
PubMed1994

[Co-enaesthetic schizophrenia. Case studies of illness perception and compliance].

Against the background of clinical and anthropological considerations, the case studies of eleven patients with coenaesthetic schizophrenia (F 20.8 in ICD-10) are evaluated with regard to how the patients experience the disorders of corporal perception. Additional criteria for the evaluation are whether the disorders receive a special significance in dealing with the psychosis, and whether they influence compliance with medicinal intake. In two cases, the coenaesthesies were experienced as making the patients happy, they were used by the patients to strengthen themselves, and so the motivation for medicinal therapy was accordingly small. Of the remaining nine patients who suffered from the body perception disorder, five were not willing to accept neuroleptic therapy. The author ascribes this above all to two behaviours: the patients either deny their symptoms, or they attempt to use them to compensate for ego-weakness. However, an effect of self-stabilisation through the coenaesthesies, as measured by social capabilities, is not objectively recognisable.

Adult↗
PubMed1990

[Emotional experience and subjective illness perception in chronic aphasia--a comparison of patients with their family members].

The results of a pilot study are demonstrated. 10 chronically aphasic patients and their relatives were interviewed by a semi-structured questionnaire. Main themes are the subjective perception and the emotional experience of psychosocial changes, psychological disturbances, communicative and neuropsychological impairments, as well as the perception of restraints caused by symptoms of disease. Methodological difficulties which arise from linguistic and communicative restrictions of aphasic patients are discussed. Data show clear emotional restraints of aphasics and their relatives in occupational, social, psychological and communicative areas. The results indicate independence of subjectively perceived alteration and its emotional experience. The differences of the emotional experience of aphasics and their relatives are discussed. While aphasics are more burdened by restrictions of independence, their relatives gave more importance to emotional changes and familiar problems.

Activities of Daily Living↗
PubMedDate not supplied

Patients' perception of their depressive illness.

Perception of illness has been described as an important predictor in the medical health psychology literature, but has been given little attention in the domain of mental disorders. The patient's Perception of Depression Questionnaire (PDIQ) is a newly developed measure whose factor structure and psychometric properties were evaluated on a sample of 174 outpatients meeting criteria for major depressive disorder. The clinical utility of the questionnaire was assessed on a sub-sample of 121 participants in a study of acupuncture treatment for depression. The questionnaire has four subscales, each with high internal consistency and high test-retest reliability. These four subscales are: Self-Efficacy, which reflects perceived controllability of the illness, Externalizing, which reflects attributing the illness to external causes, Hopeless/Flawed, which reflect a belief that depression is a personal trait and therefore there is little hope for cure, and Holistic, which reflects a belief in alternative therapies. Although the PDIQ did not predict outcome, its subscales were related to adherence to treatment, treatment preference, expectations, and therapeutic alliance. The subscales have adequate convergent/discriminant validity and are clinically relevant to aspects of treatment provision.

Adult↗
PubMedDate not supplied

Persistent and severely mentally ill clients' perceptions of their mental illness.

This qualitative, exploratory study examines severely mentally ill clients' perceptions of their illness and the effects of this illness on their lives. The major purpose of this study was to explore the lived experiences of severely mentally ill clients. Subjects included 15 clients in an out patient mental health clinic in a veterans' hospital in the upper midwestern United States. A phenomenologic methodology was used, with subjects being interviewed until common themes emerged. The data were analyzed utilizing a seven-step method. Four major themes emerged in the data analysis. Identification of these themes provided a meaningful way to synthesize the data and identify those concepts that best capture and name the personal perceptions of severely and persistently mentally ill people. The four themes identified were stigmatization and the resulting alienation, loss, a pervasive feeling of distress, and acceptance on two dimensions (a personal acceptance of having a mental illness and a need for acceptance by others). Although the individuality of each client was evident in the data obtained, each theme represents a collective perspective that emerged from the analysis of the data.

Adult↗
PubMedDate not supplied

Developing a church-based diabetes prevention program with African Americans: focus group findings.

PURPOSE: The purpose of this study was to use a community-based participatory research (CBPR) approach to identify resources and barriers to implementing a church-based diabetes prevention program (DPP) in a rural African American church community in Georgia. METHODS: In collaboration with community leaders, researchers conducted 4 focus groups with 22 key informants to discuss their understanding of diabetes and identify key resources and barriers to implementing a DPP in the church. Three researchers analyzed and coded transcripts following a content-driven immersion-crystallization approach. RESULTS: The participants' comments on diabetes and prevention covered 5 research domains: illness perceptions, illness concerns, illness prevention, religion and coping, and program recommendations. Program success was deemed contingent on cultural sensitivities, a focus on high-risk persons, use of church resources, and addressing barriers. Barriers identified included individuals' lack of knowledge of risk and prevention programs, lack of interest, and attendance concerns. Solutions and resources for overcoming barriers were testimonials from persons with illness, using local media to advertise the program, involving the food committee of the church, ministering to the healthy and at risk, and acquiring a support buddy. CONCLUSIONS: A CBPR approach engaged church members as partners in developing a church-based DPP. Focus groups generated enthusiasm among church members and provided valuable insights regarding barriers and resources for program implementation. This methodology may prove useful in other church-based chronic disease prevention efforts with at-risk populations.

Adaptation, Psychological↗
PubMed1994

Acute illnesses in children. A description and analysis of parents' perception of illness threat.

OBJECTIVES: To identify families in which the parents reported the child's illness as particularly stressful (high perception of illness threat), and to find out which health problems the parents perceive as particularly threatening. DESIGN: The parents registered the diagnosis and perception of illness threat in relation to the child's latest illness within a four-week retrospective period. Selected psychosocial conditions of the families were recorded in the same questionnaire. SETTING: 18,949 families with at least one child under the age of 8 years, resident in the County of Ringkøbing in western Denmark at 1 March 1988. SUBJECTS: An age-stratified random sample of 1982 families was entered in the study. 85% of the families returned the questionnaire. RESULTS: There was a considerable variation in the parents' perception of illness threat. On the basis of a score it was possible to group parents with a high, medium, and low perception of illness threat. Every fourth family reported a high perception of illness threat. A multivariate analysis, with a high perception of illness threat as dependent and selected psychosocial conditions and the diagnosis as independent variables, led to the following main results: 1) parents with a high perception of the general health threat ("worried" parents) most frequently reported a high perception of illness threat, 2) the diagnoses were decisive; in particular, inflammation in the middle ear, bronchitis, pneumonia, and accidents led to the parents' reporting a high perception of illness threat, 3) parents without experience of children and children's illnesses more frequently perceived an actual illness as a high illness threat than parents with this experience, 4) parents more frequently perceive an illness in girls as a high illness threat. CONCLUSIONS: "Worried" parents, without experience of children and children's illnesses, perceive the child's latest illness as a high illness threat. These families need special care.

Acute Disease↗
PubMed2005

Perceptions of illness in individuals with anorexia nervosa: a comparison with lay men and women.

OBJECTIVE: The current study examined and compared perceptions of illness in individuals with anorexia nervosa (AN) and lay men and women. METHOD: Participants with AN (n = 95) completed the Revised Illness Perception Questionnaire (IPQ-R). Lay participants (n = 80) completed a modified IPQ-R to elicit perceptions of AN. RESULTS: Participants with AN viewed their illness as chronic and highly distressing, with strong negative consequences. They had fairly negative perceptions of illness controllability and curability, which contrasted with the more optimistic beliefs held by lay participants. Both groups implicated emotional and psychological causes. DISCUSSION: The profile of illness perceptions expressed by the AN sample is associated with poor mental health and functioning and may inform the treatment approach. Lay perceptions of AN differed in the conceptualization of AN as a "slimming disease" amenable to change. This discrepancy may contribute to the stigmatization of AN.

Adult↗
PubMed2006

Cognitive behavioural therapy in addition to antispasmodic therapy for irritable bowel syndrome in primary care: randomised controlled trial.

OBJECTIVES: To determine whether cognitive behavioural therapy (CBT) in addition to antispasmodic treatment offers a cost-effective benefit to primary care patients with irritable bowel syndrome (IBS) and to identify predictors of outcome. DESIGN: This was a randomised controlled trial in primary care of the addition of CBT to standard general practice management of IBS, using the antispasmodic agent mebeverine hydrochloride. The study set out to compare the addition of a standardised package of IBS-specific CBT to treatment with mebeverine hydrochloride. SETTING: Ten general practices, serving a population of around 45,000 patients, located principally in south London, with some patients resident in north London. PARTICIPANTS: Patients identified as having IBS by their GPs, aged between 17 and 54 (mean 34) years and predominantly white; 82% were female and half had had IBS for more than 5 years. INTERVENTIONS: Practice nurses delivered CBT in a randomised trial of the addition of CBT to mebeverine in patients who had IBS of moderate or greater severity after 2 weeks of GP care and 4 weeks of mebeverine. The Symptom Severity Scale (SSS) was used to identify patients with moderate or severe IBS. Patients who continued to report moderate or severe IBS after 4 weeks of mebeverine at a dose of 270 mg three times a day were randomised to receive six sessions of CBT in addition to mebeverine (72 patients) or mebeverine alone (77 patients). These patients were followed at 3, 6 and 12 months after treatment. As part of the baseline evaluation, blood tests for antiendomysial and antigliadin antibodies were carried out on 141 patients to determine the prevalence of coeliac disease in this population. MAIN OUTCOME MEASURES: The principal outcome measure was the SSS. Others included the Hospital Anxiety and Depression Scale, psychopathology, the Work and Social Adjustment Scale (WASA, disability), a modified version of the Illness Perception Questionnaire (illness perceptions), the Beliefs about Medicine Questionnaire (attitudes to medication), the Reported Adherence to Medication Scale (adherence to prescribed medication), the Client Service Receipt Inventory (economic analysis), the Cognitive Scale for Functional Bowel Disorders (illness cognitions) and the Behaviour Scale for IBS (IBS coping behaviour). RESULTS: The addition of CBT produced a significant benefit compared with the mebeverine-only group at 3 months after treatment on all outcome measures, except for the adherence to medication scales. The difference between the groups was 107.8 points on the SSS, 24.5 points on question 4 of the SSS and 6.3 points on the WASA, representing therapeutic gains of approximately 20%, 28% and 40%, respectively. However, there was also evidence that these improvements began to wane, so that at 6 and 12 months follow-up significant therapeutic benefit of the addition of CBT could only be detected on question 4 of the SSS and on the WASA. The behaviour scale for IBS detected significant, positive changes in coping behaviours at up to 6 months after treatment. Three factors predicting a poor outcome were identified: male gender, believing that IBS had serious consequences and belief in an external aetiology, all of which were associated with greater than average disability at follow-up. The addition of CBT to mebeverine did not reduce overall treatment or social costs. The nested study on testing for coeliac disease provides cautious support for the inclusion of antiendomysial and antigliadin antibody testing in the investigation of patients thought to have IBS. CONCLUSIONS: Specially trained practice nurses can provide effective CBT to primary care patients with a clinical diagnosis of IBS, which although effective does not reduce service or social costs. Using a variety of measures the beneficial therapeutic effects of the addition of CBT to antispasmodic therapy persist for up to 6 months. Future research might include studies of the long-term follow-up of IBS patients treated with CBT, cost-benefit analyses comparing CBT with other therapeutic approaches to IBS, and evaluating means of training both non-specialist health professionals and GPs to deliver CBT.

Adolescent↗
PubMedDate not supplied

Chronically ill patients' perceptions of nursing care.

Chronically ill patients' perceptions of nursing care are particularly significant because such patients are more likely than others to have repeated and extended contact with nurses. Knowledge of which nursing interactions are perceived positively by the chronically ill can help nurses provide care that is satisfying to the patient. This phenomenological study found the definitive factor in positively perceived care to be the development and maintenance of confidence. The informants believed they would be well cared for and that the nurses were reliable and trustworthy. The respect and interest shown by the nurses reassured the informants that they were capable of coping with the future to the best of their abilities. Most informants felt unprepared to judge the nurses' competence but described a caring, compassionate approach combined with gentle handling, self-assurance, and recognition of the patient's own knowledge as contributing to confidence. Management of pain, facilitation of independence, and keeping the patient informed also were valued.

Attitude to Health↗
PubMedDate not supplied

Illness representations in patients with chronic kidney disease on maintenance hemodialysis.

A sample of patients with chronic kidney disease on maintenance hemodialysis participated in a study to explore the relationship between illness perception and quality of life. Illness perception was examined based on the Common-Sense Model of Illness as described by Leventhal. Forty-two participants completed the Revised Illness Perception Questionnaire (IPQ-R), the Index of Well-being (IWB) and a brief demographic form. All of the subscales of the IPQ-R and the IWB demonstrated adequate reliability (alpha levels > or = .70) except for the treatment control subscale (alpha = .46). More perceived consequences of kidney disease and higher scores on the emotional representation scale were negatively correlated with scores on the IWB. Future research is needed to assess the influence of factors such as coping strategies on illness representations and on well-being. Nephrology nurses are in an optimal position to identify the illness perceptions of patients on chronic hemodialysis and can introduce specific coping mechanisms to enhance overall well-being. As well nephrology nurses can function as part of the overall health care team to identify the resources available to minimize the perceived consequences of chronic kidney disease.

Adaptation, Psychological↗
PubMed1983

Monograph 13. The interrelationships between the asthmatic child's dependency behavior, his perception of his illness, and his mother's perception of his illness.

The purpose of this exploratory study was to investigate the interrelationships between the asthmatic child's dependency behavior, his perception of his illness, and his mother's perception of his illness. The dependency behavior of the asthmatic children was also compared with that of healthy children. The subjects of the study were 57 asthmatic children aged 8 to 12 years and their mothers, and 54 healthy children of the same age and their mothers. The asthmatic children were recruited from (1) patients attending the allergy clinic at a children's hospital in a large metropolitan area of Western Pennsylvania (n = 44) and (2) the private practice of a physician located in the same geographic area (n = 13). The healthy children were recruited from two sources. The majority of them (n = 47) were recruited from the children who visited the medical clinic at the hospital from which the asthmatic children were recruited. These children came to the clinic for physical examination, eye examination, or minor health problems. A few healthy children (n = 7) were recruited from families who were acquainted with the investigator or her friends. Children in both groups were free of physical handicapping conditions, had no history of psychiatric treatment, and were enrolled in at least grade three of an elementary school. The children in the healthy group were free of all chronic illnesses and the asthmatic children did not have any other chronic illness besides asthma. Self-report questionnaires were used to collect data concerning the variables under study. The Self-Administered Dependency Questionnaire (SADQ) and the Children's Autonomy Questionnaire (AUT-MC-3) were used to assess the child's dependency behavior. The children's perceptions of asthma were assessed by the Children's Perception Questionnaire (CPQ). The Mother's Perception Questionnaire (MPQ) was used to measure mothers' perceptions of their children's asthma. Demographic data were obtained from a questionnaire designed for each group of subjects. The data were solicited through two approaches: direct contact with each mother-child pair and by mail. The scores from the SADQ, AUT-MC-3, CPQ and the MPQ were analyzed. The SADQ scores and the AUT-MC-3 scores which measured dependency behavior were used separately in the analysis. The Pearson product-moment correlation coefficient (r) was used to estimate the relationships between the variables under study. The Independent Student t-test was used to determine the differences in dependency behavior of the asthmatic children and healthy children.(ABSTRACT TRUNCATED AT 400 WORDS)

Adult↗