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PubMed2001

Well sibling psychological adjustment to chronic physical disorder in a sibling: how important is maternal awareness of their illness attitudes and perceptions?

The psychological adjustment of healthy siblings was investigated in relation to their attitudes and perceptions about their brother's or sister's chronic physical disorder, to their mothers' awareness of these attitudes and perceptions, and to three other maternal factors (maternal distress, maternal social support, and amount of care demanded by the physical disorder). Sixty-two well siblings and mothers of children with a range of chronic physical disorders completed standardised questionnaires. The majority of siblings did not appear to have adjustment problems, although the sample had slightly increased rates of emotional symptoms compared to the general population. Mothers rated well siblings as having more negative attitudes and perceptions about the physical disorder than reported by siblings themselves. A multiple regression analysis indicated that better sibling adjustment was associated with higher maternal awareness of their attitudes and perceptions. These findings support Varni and Wallander's (1998) model that emphasises the role of relationship and attitude variables in child adjustment to chronic physical disorder. The implications of these findings for clinical practice are discussed.

Adaptation, Psychological↗
PubMed1994

[Problem of perception and denial of illness in women who had breast cancer].

It has been noted that some patients demonstrate denial when they have a severe illness such as cancer. We observed this type of denial with respect to perception of illness by patients. We interviewed twenty women who had been treated for breast cancer for more than one year. During these interviews, every patient narrated the story of her illness as she remembered it. One year or more after treatment, four women denied the diagnostic which was given to them when the treatments started. These four women were the only ones who never perceived the first signs of the illness. They never saw or felt any change around their breasts, and they are among the five women for whom breast cancer was detected from a systematic mammography. In contrast the other women, who did not manifest such denial, detected themselves an anomaly or were alerted by their physician. Based upon these observations, we discuss the notion of denial when patients have no perception of the illness or its first signs of onset. We pose a question concerning the interest and usefulness of such research concerning the representational process of illness by patients.

Adult↗
PubMed2000

Professional nurses' perception of nursing mentally ill people in a general hospital setting.

The aim of this study was to explore professional nurses' perception of nursing mentally ill patients in a tertiary hospital in Durban. An explorative, qualitative, descriptive and contextual design was followed as the basis for conducting the study. The above-mentioned research design was achieved through field work conducted in an urban-based general hospital. A sample of 12 professional nurses was selected from a population of 800 professional nurses employed in this setting using a purposive sampling technique. This sample size was determined by saturation of data as reflected in repeating themes. Both individual phenomenological semistructured interviews and field notes in the form of observations were used as methods of data collection. The field work was conducted without any preset theoretical framework of reference by using bracketing and intuiting. During interviews, participants were asked only one research question, namely: 'How do you perceive nursing mentally ill patients in your unit or ward?' Communication skills were employed to encourage participants to verbalize their perception of nursing mentally ill patients in a general hospital setting. A tape recorder was used to collect data and the data was transcribed verbatim. Data collected was analysed following the descriptive method of Giorgi (1986). Coding was carried out by the researcher and an independent expert who is a psychiatric nursing specialist and a qualitative research expert. After data analysis, the results were reflected within universal categories of the Nursing for the Whole Person Theory in order to give them structure. The four themes that emerged from the findings are: perception of self, perception of a patient, perception of feelings that hinder nursing the mentally ill, and perception of the environment. The measures for ensuring trustworthiness proposed by Guba (Lincoln Y.S. & Guba E.G. (1985) Naturalistic Inquiry. Sage, Beverly Hills) were used as the basis for ensuring reliable and valid findings. The perception of nursing mentally ill people within a general hospital setting was negative and affected the intellectual and the affective component of the nurses' psychological functioning within their internal environment. It was recommended that nurses' knowledge and skills should be increased and that they should be given emotional support in terms of counselling.

Adult↗
PubMedDate not supplied

Parent factors and adolescent sickle cell disease: associations with patterns of health service use.

OBJECTIVE: To examine relationships among parent characteristics (parent-adolescent relationship, parents' illness knowledge, and parents' perceptions of illness-related burden) and use of routine and urgent health services among adolescents with sickle cell disease (SCD). METHOD: Seventy adolescents, ages 12-18, and their parents completed questionnaires assessing illness knowledge, perceptions of illness burden, parent-adolescent relationships, and adolescents' psychological functioning. Information about pain, routine services (i.e., care at home, clinic visits) and urgent service use (i.e., emergency department visits, hospitalizations) was obtained from parents and medical records. RESULTS: After we controlled for disease severity and life events, parents' perception of more illness-related stress was the strongest predictor of both types of service use. Greater parental knowledge about SCD also related to higher frequency of routine service use. Disease severity was strongly associated with frequency of urgent service use. CONCLUSIONS: Both parent characteristics and disease severity were associated with patterns of service use. Enhancing aspects of parental functioning may help families make adaptive decisions regarding health care services for SCD pain management.

Adolescent↗
PubMed1999

[A foci of Schistosomiasis mekongi rediscovered in Northeast Cambodia: cultural perception of the illness; description and clinical observation of 20 severe cases].

In 1992 a foci of Schistosomiasis mekongi was rediscovered in the province of Kracheh in Northeast Cambodia. Severe clinical signs due to portal hypertension, which were frequently observed in this population, allowed the discovery of this 'forgotten' focus. Elements of the perception of the population and clinical observations of 20 severe cases due to S. mekongi infections are presented. Interviews with patients and villagers of the area of Kracheh showed severe psychosocial impact including fear from death, infirmity and invalidity. The symptoms of schistosomiasis were well known by the population and were reported to have increased in frequency in the last two decades. They have received traditional names and specific traditional treatment. The description of the clinical cases illustrates the severe pathology, which was observed in the hospital of Sambour, in the north of the province of Kracheh. It shows the pathogenic potential of S. mekongi in all age groups (from 7 to 58 years old): cachexia, hepatosplenomegaly, stunting and retardation of puberty, decompensation of portal hypertension with ascites and rupture of oesophagual varicies. The efficacy of the treatment in the severe stages varies. A follow-up after 30 months showed that 5 patients died, 5 initially improved but then relapsed, 3 remained unchanged and only 5 patients clearly improved. Two patients could not be followed-up. The clinical observations and interviews show severe pathology with impact at both individual and community level. The infection with S. mekongi is the main factor but additional concomitant factors are responsible for this fact. At a certain stage of the disease the prognosis for successful treatment is very low. These observations show the importance of the foci in the Province of Kracheh, Cambodia and underline the need for a long-term global intervention.

Adolescent↗
PubMedDate not supplied

Health care professionals' perceptions of seriously ill women.

Physicians, psychologists, and nurses read one of four vignettes describing a woman who had received one of four diagnoses--breast cancer, lung cancer, heart attack, or severe burn--and indicated on the Profile of Mood States (McNair, Lorr, & Droppleman, 1971) how they perceived the woman had been feeling during the past week. They then answered 10 questions about the woman's recovery and about their own anticipated behaviors while interacting with her. A number of differences emerged between professional groups in terms of their expectations for patients regardless of diagnosis. In addition, respondents held different emotional expectations for the patient, based solely on her diagnosis. These results support the need for training health care professionals to recognize psychological distress in, and appropriately refer, seriously ill women.

Adaptation, Psychological↗
PubMed1992

The most important needs of parents of critically ill children: parents' perceptions.

Research studies have identified the needs of relatives when they have had an adult family member in the intensive care unit. However little similar work has been done within the paediatric setting. Therefore the aim of this study was to examine what parents considered to be their most important needs, when they have a child ill in the intensive care environment (PICU). A questionnaire was designed, and was distributed to parents of 30 children admitted into a PICU. The questionnaire identified needs items which may be important to parents of sick children. The parents were required to indicate how important each need was to them during the time of the child's stay in the PICU. Results obtained indicate that parents have a strong need for information and relief of anxieties that they may have about their child's condition. A conclusion reached in this study is that if the critical care staff can go some way to assess and meet the needs of parents of critically ill children, then these parents may be more able to become effective partners in care, which may have therapeutic effects upon the child's health recovery.

Adult↗
PubMedDate not supplied

Graphic representation of illness: a novel method of measuring patients' perceptions of the impact of illness.

BACKGROUND: Health outcome is multi-faceted, and for both research and clinical practice, greater knowledge of its facets is required. The Pictorial Representation of Illness and Self Measure (PRISM) was developed as a simple, rapid measure of the current impact of illness and symptoms on the individual. METHODS: The PRISM task was completed by 26 outpatients with rheumatoid arthritis participating in a larger study of psychosocial correlates of arthritis, which included assessment of disease variables, functional impairment, pain, depression and patients' appraisals of their illness. In the PRISM task, the patient was asked to imagine that a small board represents his/her life and a fixed disk on the board represents his/her 'self'. The task was to place another (Illness) disk on the board to represent the current importance of illness in the patients' life. The main outcome measure was the distance between the Self and Illness disks. FINDINGS: Only 2 patients had difficulty understanding the task. PRISM distance did not correlate with any disease variables. It correlated inversely with pain, functional impairment and depression, and positively with coping resources. PRISM distance correlated with perceived control over illness and negatively with awareness of illness. INTERPRETATION: PRISM is an innovative measure, simple and well accepted by patients. It appears to measure what in German is termed leidensdruck, the burden of suffering due to illness. It offers a promising measure of an intangible but important health outcome, hitherto neglected, applicable to research interventions and clinical practice.

Activities of Daily Living↗
PubMed2006

What matters most in end-of-life care: perceptions of seriously ill patients and their family members.

BACKGROUND: Initiatives to improve end-of-life care are hampered by our nascent understanding of what quality care means to patients and their families. The primary purpose of this study was to describe what seriously ill patients in hospital and their family members consider to be the key elements of quality end-of-life care. METHODS: After deriving a list of 28 elements related to quality end-of-life care from existing literature, focus groups with experts and interviews with patients, we administered a face-to-face questionnaire to older patients with advanced cancer and chronic end-stage medical disease and their family members in 5 hospitals across Canada to assess their perspectives on the importance. We compared differences in ratings across various subgroups of patients and family members. RESULTS: Of 569 eligible patients and 176 family members, 440 patients (77%) and 160 relations (91%) agreed to participate. The elements rated as "extremely important" most frequently by the patients were "To have trust and confidence in the doctors looking after you" (55.8% of respondents), "Not to be kept alive on life support when there is little hope for a meaningful recovery" (55.7%), "That information about your disease be communicated to you by your doctor in an honest manner" (44.1%) and "To complete things and prepare for life's end - life review, resolving conflicts, saying goodbye" (43.9%). Significant differences in ratings of importance between patient groups and between patients and their family members were found for many elements of care. INTERPRETATION: Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion. Variation in the perception of what matters the most indicates the need for customized or individualized approaches to providing end-of-life care.

Aged↗
PubMed2000

Parents' perceptions of chronic illness trajectories.

The notion of a small, generic set of chronic illness trajectories that can be independent of specific medical diagnoses, though controversial, has some theoretical, clinical, and qualitative research support. The purpose of this study was to quantitatively describe trajectories among parents of children with a chronic condition. It was hypothesized that factor analysis would confirm 3 trajectories similar to those in the qualitative literature and that parents' perceptions of their child's trajectory would differ significantly from medically based perceptions. A total of 140 parents provided data on their perceptions of the past, present, and future course of the condition of their repeatedly hospitalized child. Fourteen time-related items from the Coping Health Inventory for Parents Questionnaire on Resources and Stress and the Parenting Stress Index were analyzed. Pre- and post-hospitalization factor analyses extracted the same 8 items to construct 3 trajectories: Life Threatening; Declining; and Stable, Optimistic. The views of approximately one third of the parents differed from medically based classifications. Type of nursing care had no bearing on the perceptions of the parents.

Adaptation, Psychological↗
PubMed1999

Illness and treatment perceptions of Ethiopian immigrants and their doctors in Israel.

OBJECTIVES: Patient-provider misunderstandings arising from disparate medical and cultural concepts can impede health care among immigrant populations. This study assessed the extent of disagreement and identified the salient problems of communication between Israeli doctors and Ethiopian immigrant patients. METHODS: Semistructured interviews were conducted with 59 Ethiopian immigrants. Self-reports of health status and effectiveness of treatment were compared with evaluations by the primary care physician and supplemented by qualitative data from descriptions of illness, observations of medical visits, informant interviews, and participant observations conducted by the anthropologist. RESULTS: Health status and effectiveness of treatment were rated significantly higher by the doctor than by the patients. Low doctor-patient agreement occurred mainly for illnesses with stress-related or culture-specific associations. Qualitative data suggested that more long-term immigrants may alter their expectations of treatment but continue to experience symptoms that are culturally, but not biomedically, meaningful. CONCLUSIONS: Misunderstandings between immigrant patients and their doctors emerge from the biomedical system's limitations in addressing stress-related illnesses and from culture-based discrepancies in concepts of illness and healing. Including trained translators in medical teams can reduce medical misunderstandings and increase patient satisfaction among immigrant populations.

Acculturation↗
PubMed2006

Exploring terminally ill patients' and their families' perceptions of holistic care in Malaysia.

AIM: To document the perception of terminally ill patients and their family members on the care provided to them, and to look at the components of holistic care that are viewed as inadequate. METHODS: Thirty cancer patients from a 10-bed palliative ward and their family members who were the chief carers were interviewed. They were asked to give their perceptions on four major areas of care: physical, social, psychological and spiritual. The participants were asked to report which area(s) of the service were inadequate. RESULTS: Most patients and family members perceived that they received adequate physical care. However, the psychosocial and spiritual aspect of care were perceived as inadequate by the majority of patients and their families. None of the patients interviewed had ever been asked about spiritual distress. CONCLUSION: The holistic model of care in caring for terminally ill patients is not practised fully. Further development in the psychosocial and spiritual aspects of care is necessary. There is a need to conduct further research to address these domains.

Aged↗