Interviewed Family Members Research Articles

Nursing assistants caring for dementia residents in nursing homes: The family's perspective on the high quality of care

Most research on nursing home care has focused on its problems and shortcomings, with few positive reports concerning resident care. The current study investigates a neglected aspect of nursing home research. family members' positive perceptions of the care nursing assistants provide to residents with dementia. Content analysis of cross-sectional data from 133 family member interviews from five nursing homes revealedfour positive themes. • Family members' appreciation for how difficult it is to care for persons with dementia and understanding constraints imposed by understaffing, heavy workloads, and low wages; • Care provided by nursing assistants that exceeds expectations; • Positive expressions between nursing assistants and residents and residents' family members; and • Identification of a kin-like relationship between residents and nursing assistants.

Validation of a quality of life questionnaire for critically ill patients

Development and validation of quality of life questionnaire for critical care patients. Prospective study. Intensive care unit (ICU) of a general hospital and ICUs of 83 Spanish hospitals. Patients admitted to the ICU > 18 years of age; close family members. A committee of experts designed a questionnaire with characteristics judged essential for intensive care use: easy, quick administration (5-10 min); capable of completion by patient or close family member, by direct or telephone interview. Fifteen items relevant to critical care patients were grouped in three subscales: basic physiological activities, normal daily activities, and emotional state. Reproducibility of interobserver, intraobserver, patient/family member and telephone/direct interviews was analysed and also internal consistency, responsiveness, and main components. Internal consistency (578 patients): Cronbach's alpha coefficient = 0.85. Reproducibility: intraobserver reproducibility (n = 150): Spearman correlation coefficient = 0.92. Interobserver (n = 85): correlation = 0.92. Patient/family member (n = 81): correlation = 0.92. Telephone/direct interview (n = 54): correlation = 0.96. factorial analysis confirmed that the three subscales were fundamental questionnaire components. There was good concordance between questionnaire/subscale and Glasgow Outcome Scale (GOS) results. Responsiveness: quality of life score changes between preadmission and 6 months' postdischarge correlated with GOS findings (weighted kappa index = 0.56). Questionnaire meets objectives recommended for critical care use, and fulfills essential requirements of validity and reproducibility when applied to critically ill patients.

Unfinished business: interviewing family members of critically ill patients

This 'story from the field' emerges from qualitative research conducted with relatives of patients admitted to intensive care. A disturbing feature of researching the needs of family members of critically ill patients is the intense emotion that is often generated during the course of interviewing. For some the opportunity to talk about the experience of having a loved one in an intensive care unit was therapeutic; for others it meant anguish and despair as they relived the event that resulted in a life-threatening illness. Despite being a reasonably experienced educator and critical care nurse, I was unprepared for the intensity of feelings shown by many of the participants. I found that exposure to this kind of suffering was emotionally draining, experiencing the various roles of confidante, nurse, counsellor and researcher. It became important to share my thoughts and feelings and unwind with an independent friend and colleague as a way of debriefing. Methodological and ethical issues that arose included: generating a situation that potentially required therapeutic intervention; the impact on the 'purity' of data of becoming emotionally enmeshed; and the level of investigator preparedness when researching sensitive topics. The issue of walking away from an intensely emotional and intimate interview often leaves one with a sense of 'unfinished business'.

An epidemiological study of influenza viruses among Chinese farm families with household ducks and pigs.

To examine the possibility of interspecies transmission and genetic reassortment of influenza viruses on farms in Southern China, we surveyed 20 farm families living outside the city of Nanchang who raised pigs and ducks in their homes. Weekly interviews of family members and virus isolation studies of throat swabs and faecal samples, collected from September 1992 to September 1993, established the seasonal pattern of respiratory tract infections in these families and identified 11 influenza viruses (6 in humans and 5 in ducks). Most of the human isolates were type A of H3N2 subtype. Serologic studies of farm pigs indicated infection by the same human viruses circulating in family members, but there was no evidence that either swine or avian viruses had been transmitted to pigs. Eight of 156 human serum samples inhibited the neuraminidase activity of two of the duck isolates, raising the possibility of interspecies transmission of these avian viruses. Genotype analysis of duck and human isolates provided no evidence for reassortment. Our finding support the concept that intermingling of humans, pigs and ducks on Chinese farms is favourable to the generation of new, potentially hazardous strains of influenza virus.

The Clozapine Experience from a Family Perspective

To examine how the lives of family members of clozapine-treated patients with schizophrenia have been affected by this treatment. Through the use of a questionnaire and an interview of family members, this qualitative study focused on the families' perceptions of change in their family member and the impact on the family unit. Fourteen patients and their family members participated. The family interview was conducted an average of 1.78 years after clozapine initiation (range 0.58 years to 3.73 years). Global ratings of behavioural change were positively and significantly correlated between all raters: patients, family members, and clinicians. Family members were positive about clozapine's effect on their relatives and the impact on the family. A positive response to clozapine decreases the burden on the family. This is in part the result of a decreased need for rehospitalization.

ERP Indices and Neuropsychological Performance as Predictors of Functional Outcome in Dementia

We compared the relative value of neuropsychological and event-related potentials (ERPs) obtained during both passive and active auditory oddball paradigm measures for determining functional outcome in dementia 4 years following initial assessment. Functional outcome was assessed by structured interview of family members of 29 patients with dementia, and patients' functional status was rated in seven areas: mortality, incontinence, institutionalization, ADL dependence, verbal responsiveness, recognition of family members, and capacity for social interaction. A total functional outcome score (ADLTOTAL) was obtained by summing across these individual outcome measures. Many of the neuropsychological measures correlated strongly with overall functional outcome, whereas P3 amplitude and latency on the active ERP condition were the only ERP indices to predict functional outcome. When ERP and neuropsychological measures were considered simultaneously using stepwise multiple regression analyses, the neuropsychological measures were better predictors of most functional outcomes, although P3 latency was the best predictor of mortality. However, neuropsychological performance and ERPs appear to be sensitive to different functional outcomes. Therefore, evaluation of both ERPs and neuropsychological performance may ultimately have prognostic utility in the assessment of patients with dementia.

A Family Study of Manic-Depressive (Bipolar I) Disease

To determine whether bipolar I illness is autonomous or part of a multifactorial continuum with unipolar depression. In this study, we compare familial bipolar I illness and depression among three groups: probands with bipolar I disorder; probands with primary unipolar disorder; and controls. We also examine a continuum of severity between psychotic and nonpsychotic patients with bipolar I disorder. Considerable data suggest that bipolar I illness is distinct from unipolar illness as regards epidemiology, familial psychiatric illness, course, response to treatment, and biologic findings. Probands were separated into bipolar I and primary unipolar depressive groups. Personally interviewed family members of these patients were compared on variables of bipolar illness or schizoaffective mania and unipolar or schizoaffective depression. A personally examined control group was compared with the relatives of the two proband groups. Similar analyses were performed using data obtained by a systematic family history method. For the same familial variables, psychotic and nonpsychotic manic probands were compared. Familial mania is more frequent in families of patients with bipolar disease than in controls or in families of patients with primary unipolar disorder. The latter two groups did not differ in amount of mania. Unipolar depressive illness or schizoaffective depression was higher in families of probands with bipolar and unipolar disorder than in controls. Probands with bipolar disease separated into those who had psychotic symptoms (including schizoaffective mania) and no psychotic symptoms did not differ from each other in risk for familial mania or depression. Bipolar I illness is a separate illness from primary unipolar illness because of an increase in familial mania. Patients with primary unipolar disease and controls show the same amount of familial mania. Lack of an increase in familial illness according to the severity of bipolar disease is against an affective continuum.

Counselling patients with AIDS-associated Kaposi's sarcoma

Abstract Kaposi's Sarcoma is a disfiguring and feared symptom of HIV disease. Structured interviews of patients, family members and health care providers were conducted in three settings: USA (11), UK (8) and sub-Saharan Africa (20). These sought to identify: (a) contextual and cultural differences; (b) the main fears of patients and others; (c) practical ways of addressing these and coping with stigma, and (d) methods for ‘inoculating’ non-KS patients against psychological distress before there is any evidence of clinical signs or symptoms. It was found that context and culture mediated social responses to KS and disfigurement. Patients in Africa seemed to be less affected than Western patients by appearance and stigma. Issues relating to secrecy were common to both groups. Compliance with treatment was good as long as it was efficacious. When no further treatment of Kaposi's sarcoma was possible, there is greater emphasis on counselling. Patients (particularly in the West) appreciated treatment of lesions on the hands and face, and advice about cosmetic applications, even if lesions on other parts of the body could not be treated. Perceptions about being able to find a new partner were reduced among Western patients with KS. Patients with KS or an associated fear may benefit from counselling in which ideas relating to stigma, secrecy, treatment, cosmetic applications, the effects on family and fears of disfigurement are discussed.

Assessment of lineality in bipolar I linkage studies.

To assess lineality in families of bipolar I probands, the authors used direct interviews of family members to reclassify families initially categorized as unilineal by family history. The families of 1,800 treated bipolar I probands were screened by the family history method with multiple informants. If the proband had one or more affected sibs and one apparently unaffected parent, the parents (and then other available first- and second-degree relatives) were directly interviewed by psychiatrists. Of the 1,800 families screened, 56 were apparently suitable unilineal families with multiple affected members; 46 families were interviewed directly. After interviews with the parents, 12 families (26.1%) were found to be bilineal. Direct interviews of all available relatives in the 34 remaining families revealed that only 22 (47.8% of the 46 interviewed families) were unilineal or probably unilineal and 12 were probably bilineal. The probably bilineal families had a significantly higher proportion of siblings with unipolar disorder. In addition, the affected sibs from the probably bilineal families tended to have earlier onsets but had significantly fewer symptoms in the most severe depressive episode. Fewer than 50% of bipolar I families appearing unilineal according to family history were found to be unilineal by direct interviews. The phenotypic differences between the affected sibs from the probably bilineal families and those from the unilineal and probably unilineal families suggest differences in genetic mechanisms. These findings highlight the need to systematically assess lineality in all families considered for bipolar I linkage studies and support the preferential inclusion of unilineal families in linkage studies.

Maternal Mortality in Giza, Egypt: Magnitude, Causes, and Prevention

This article presents results from a population-based study of the magnitude and causes of maternal mortality in the Giza governorate of Egypt in 1985-86. Deaths to women in the reproductive ages were identified through the death registration system. Family members of the deceased were interviewed using the "verbal autopsy" approach. Immediate and underlying causes of death were then assessed by a medical panel. This methodology allows for the classification of multiple causes of death and is appropriate when registration of adult deaths is nearly complete, but reporting on cause of death on death certificates is poor. Of all reproductive-age deaths, 19 percent were maternal deaths. The maternal mortality ratio for Giza is estimated to be, at minimum, 126 maternal deaths per 100,000 live births. The maternal mortality rate is estimated to be, at minimum, 22 maternal deaths per 100,000 women aged 15-49, over 100 times the rate in Sweden. An average of 2.3 causes per maternal death were reported; the most common causes were postpartum hemorrhage (31 percent of cases) and hypertensive diseases of pregnancy, such as toxemia and eclampsia (28 percent of cases). Women experiencing hemorrhage, hypertensive diseases of pregnancy, or other serious complications must have easy access to hospital and maternity centers equipped for handling these conditions. Since most deliveries occur at home, many with the help of traditional birth attendants, TBAs will need training in early diagnosis, treatment, and/or effective referral of problem pregnancies.

X-Linked Recessive Nephrolithiasis with Renal Failure

Nephrolithiasis may occur as a consequence of a number of hereditary disorders. We describe a large kindred from northern New York with hereditary nephrolithiasis accompanied by urinary concentrating defects, nephrocalcinosis, renal insufficiency, and renal wasting of potassium, phosphate, calcium, and uric acid. The pattern of inheritance was established by examining the patients and their records and interviewing family members. Selected members of the family were evaluated in detail, with measurements of erythrocyte cation fluxes and carbonic anhydrase (carbonate dehydratase) activity. The kindred consisted of 162 family members from six generations. All nine affected persons were male and appeared to have inherited the disease from their mothers. No affected man transmitted the gene to a son, but the daughters of affected men were carriers. The patients presented in childhood with calcium nephrolithiasis and proteinuria, with progression to nephrocalcinosis, urinary concentrating defects, and renal insufficiency. Renal biopsies revealed tubular atrophy, interstitial fibrosis, and glomerulosclerosis; the characteristic features of other forms of hereditary nephritis were absent. Abnormalities in the renal excretion of calcium, phosphate, potassium, and uric acid were found only in the adult members of the kindred, although renal biopsies were abnormal even in younger members. In one patient who has had a renal transplant for seven years, the disease has not recurred. This kindred manifested an X-linked recessive nephrolithiasis with renal failure, a new form of hereditary renal disease. Most of the identifiable physiologic abnormalities occurred after the development of nephrolithiasis and renal insufficiency and may not be of pathogenetic importance.

Adolescents' and parents' reasoning about actual family conflict.

This study employed a distinct domain perspective on social-cognitive development to assess reasoning about issues of family conflict. Subjects were 102 fifth through twelfth graders from 2-parent families and their parents. Individually interviewed family members described actual family conflicts and, for each, justified their position on the dispute and reasoned about them from the other's perspective. Parents generated fewer conflicts than did children. Preadolescent to late adolescent families generally agreed that conflicts occurred over the mundane, everyday details of family life, but they did not agree on their interpretation. Adolescents understood but rejected their parents' conventional interpretations of conflicts, reasoning instead in terms of personal choice. Boys' understanding of their parents' conventional perspectives increased significantly with age, whereas girls' understanding was significantly lower in early adolescence, as compared to pre- or late adolescence. The results are discussed in terms of adolescent individuation and parent-child conflict during adolescence.

Why Cases Sometimes Go Wrong

Why Cases Sometimes Go Wrong Consultation? Case review? Counseling? Case discussion? The lack of a single term to characterize ethics committee reviews of difficult questions that arise in the care of patients suggests that there is no single understanding of this distinctive committee function. Those who request a meeting of a committee may arrive with one understanding of this function only to meet a group with a wholly different approach. As a consequence, they are likely to talk past each other and to part dissatisfied. This is why case discussions sometimes go wrong. There are at least three different understandings of the case review function of ethics committees. One is that it involves a consultation. This conception comes from the medical model of consultation in which a primary physician who faces a difficult or unusual patient care question seeks the advice of another physician with special expertise in that area. Ethics committees that follow this model believe they are being asked to use their expertise in ethics to advise about perplexing ethical issues that arise in the care of a patient. They may ask such questions as whether they must personally see the patient, read the chart, and interview family members. They wonder whether the committee must write its recommendation in the chart and what they are to do if the physician does not follow the committee's recommendation. Committees functioning on this model are not likely to talk about whether the committee should make a recommendation but to whom it should make the recommendation. As the medical model of consultation depends on perceptions of medical norms, so the ethics committee consultation model depends on perceptions of moral norms. For example, when considering a case that involves a comatose patient with AIDS and pneumonia who is on a respirator and whose mother and lover disagree about appropriate care, an ethics committee working with the consultation model might focus on what is in the patient's best interests and what most people would want in this situation. Other committees may follow a case review model; this is indebted to the legal system. The emphasis in this model is on the procedural precision of the committee and its ability to weigh evidence, rather than its substantive expertise. The committee is expected to make a decision on this model; the critical question is how it (as judge and jury) comes to that decision. When the case review model is dominant, the committee asks such questions as who can bring a case to the committee, who attends the review, who provides information, who votes, and who acts as the patient's advocate. Ethics committees with this understanding of their function regularly speak of the decision they reach about a case, even as they say that they are not the decisionmakers. When substantive issues are addressed on this model, committees are more likely to focus on identifying the proper decisionmaker than the appropriate decision. Thus, in the previously described case of the man with AIDS, the committee might be particularly attentive to whether the mother or the lover is the best surrogate decisionmaker for the patient. A third approach that some ethics committees use to discuss patient care questions is educational. …

The Family Photo Assessment Process (FPAP): A Method for Validating Cross-Cultural Comparisons of Family Social Identities

The purpose in the pilot study reported here was to develop a process to test, quantitatively, the relationship between information about families’ social identities arrived at through three different sources: 1) coders’ ratings of family photographs, 2) family self-ratings of social identity, and 3) family scores on a true and false instrument that measures social identity. The process that was developed has been labeled the Family Photo Assessment Process or FPAP. From the results of preliminary testing, it appears that coders can be trained to reliably assess several dimensions of the family’s social identity from viewing family photos and interviewing family members. It also appears that there are cultural differences in the dimensions discernable from family photos. Subsequently research will reveal if these cultural differences are evident in comparisons between American and Japanese photos. The long range questions are: Will the family photo album emerge as another “slice of data” on which to access family social identity? Will the family photo album emerge as a source of information on which to make cross-cultural comparisons of family life?

Use of a family member interview to teach the biopsychosocial model: Medical students interview a family member about a previous major illness or injury

Educators have become sensitive to the problem of combining scientific expertise and humanistic skills in medical practice. In a new approach to teaching the biopsychosocial model, first-year medical students are required to interview a family member who underwent a major illness or injury during the student's lifetime, and then to prepare a life-stress report for that person. The interview and the report are completed in accordance with objectives outlined in a protocol. The assignment has made the students more aware of the full range of influences affecting illness and recovery, of desirable attributes of a physician from the patient's viewpoint, and of their own motivations for becoming a physician.

Oral contraceptives and mortality from circulatory system diseases: An epidemiologic study in Taiwan

An epidemiological study on the association between oral contraceptive (OC) use and circulatory system disease (CSD) mortality undertaken in Taiwan by proxy interview of closest family members of 306 deceased cases, 305 deceased controls, and 611 healthy neighborhood controls indicated that the relative risk between the cases and health controls was 0.98 (0.62-1.54) and that between cases and health controls was 0.82 (0.56-1.21). Use of OC by Taiwanese women has not produced any overwhelming adverse effects on CSD mortality.

Gypsies and Acute Medical Intervention

Recently, a 7-month-old, terminally ill Gypsy infant was admitted to a pediatric intensive care unit. Treating this child and her extended family was a challenging experience during which numerous culture-related problems were encountered. The Gypsy approach to acute medical care consisted of the presence of a large extended family unit, the lack of decision making by the patient's parents, and several different Gypsy traditions. There were diverse, and often derogatory, reactions and prejudices from the hospital staff. After interviewing family members, this family's needs were easier to understand, and interaction with them in culturally relevant terms was possible. When dealing with Gypsy families, identification of the responsible elder male members of the family, establishment of firm lines of communication with essential family members and the parents, and education of the medical staff concerning Gypsies are recommended.

Oral contraceptives and mortality from circulatory system diseases: An epidemiologic study in Taiwan

An epidemiological study on the association between oral contraceptive (OC) use and circulatory system disease (CSD) mortality undertaken in Taiwan by proxy interview of closest family members of 306 deceased cases, 305 deceased controls, and 611 healty neighborhood controls indicated that the relative risk between the cases and health controls was 0.98 (0.62–1.54) and that between cases and health controls was 0.82 (0.56–1.21). Use of OC by Taiwanese women has not produced any overwhelming adverse effects on CSD mortality.

Experiment With Abnormal Families

CLINICIANS who treat whole families report that the identified patient's Psychopathology is a product of the kind of family in which he lives. A major goal in family research has been to find evidence for or against the idea that families of psychiatric patients are different from average families which do not contain such patients. Methods of investigating this question have included interviewing family members, observing families in the home, bringing families to the laboratory for raters to observe conversations, and taking measurements of family behavior in experimental contexts. The latter approach was used in the study reported here. Samples of families with a diagnosed patient or a family problem were contrasted with control groups of average families in a restricted communication network while discussing two different kinds of conversational stimuli. Few differences were found between the two groups. The problem of determining