Sources of support and the physical and mental well-being of young women with breast cancer.

Women following the stress resulting from the diagnosis and treatment for breast cancer draw resources from their network of friends and relatives. These resources include both emotional support and instrumental resources such as getting a ride to a medical appointment. Emotional support buffers the effects of the stresses they face and improves their mental well-being while the existence, rather than the use, of instrumental supports is positively related to physical well-being. These hypotheses are tested on a population-based cohort of 336 women in the United States, diagnosed and treated for breast cancer when aged 50 or less. Most are married (65%), work (75%), have dependent children (63%), are white (70%), and had a mastectomy (51%). Results of the multi-variate analyses indicate that consistent with predictions, controlling for socio-demographic and treatment-related variables, the size of the social network was related to greater emotional and instrumental support, and greater emotional support was related to better mental well-being. Contrary to predictions, greater use of instrumental resources was related to poorer physical well-being. The results indicate the importance of social resources on well-being following life-threatening illness.     

Needs and expectations of Alzheimer's disease family caregivers

BackgroundFamily members of people suffering from Alzheimer's disease play a major role in providing daily life care for their relatives. Compared to non-caregivers, they present increased risks of mortality as well as psychological and physical co-morbidity. Altered relationships between caregivers and medical staff and dissatisfaction with the quality of help provided tend to increase the risk of depression and anxiety disorders among caregivers. The present study aimed at exploring the needs and expectations of family caregivers of patients with Alzheimer's disease who request medical assistance for their relatives.MethodsThe present analysis is an ancillary study of a large multicentric controlled randomized study designed to assess the efficacy of three non-pharmacological treatments in Alzheimer's disease, in which 645 mild-to-moderate Alzheimer patients were enrolled. Needs and expectations of the caregivers were assessed with a French scale of patient expectations for medical consultation, the échelle d’attentes en matière de consultations (EAC), completed by caregivers during the inclusion visit. This scale consists in a self-administered 28-item questionnaire concerning four main needs: learning skills to improve daily life management of their relatives; information regarding the disease; improving caregivers’ self-confidence; support to improve communication with their relatives.ResultsThe ten items for which more than 40% of caregivers reported high or very high expectations referred to two main needs: information regarding the disease (treatment, prognosis…) and learning skills in order to improve daily life management of their relative. The predominance of such needs was observed whatever the relationship between the caregiver and the cared relative but seemed to be more pronounced in female spouses and children of patients with Alzheimer's disease.ConclusionsNeeds and expectations of Alzheimer's disease family caregivers involve two major aspects: first, information regarding the disease (treatment, prognosis…) and second, learning skills for improving daily life management of their relative. These results suggest that among the various available family caregivers support programs, programs providing information, education, and practical advice to improve daily life assistance seem to be adequate.     

Perceived social support and family meeting attendance preferences among family medicine outpatients

Although there is much social science literature about social support, relatively little is known about the extent and sources of support that family medicine patients perceive to be available to them. A questionnaire requesting ratings of perceived informational, instrumental, emotional, and crisis support in a variety of relationships was administered to 101 family practice center outpatients. Results indicated strong perceptions of available support overall, with highest levels perceived from partners and parents. Notably, however, strong support was also perceived from extrafamilial sources, surpassing that of other categories of biological relatives. Levels of perceived support from particular people also varied according to type of support being rated. Finally, patients expressed strong preferences for inviting both immediate family members and supportive extrafamilial persons to hospital meetings with physicians to discuss serious medical problems. Results are consistent with a multifactorial model of social support and suggest that physicians should take a broad social systems perspective in assessing patient resources and negotiating attendance at family meetings.     

418例肺癌患者家族癌症发病史流行病学调查分析

目的 了解肺癌患者中的家族癌症史的流行情况.方法 依据《人群疾病家族史和病史调查表》采用面对面的方式对巴中地区418例肺癌患者家族癌症史进行调查.结果 418例肺癌患者中家族史癌症阳性和肺癌阳性率分别为36.12％(151/418)和28.47％(119/418),两者间阳性率差异无统计学意义(P>0.05).患者家属...     

Structural characteristics of social networks and their relationship with social support in the elderly: who provides support

The analyses presented here examine relationships between structural characteristics of social networks and two types of support (instrumental and emotional support) in a sample of community-dwelling individuals aged 65 and older. For each type of support, two dimensions are examined (1) the availability of such support and (2) the perceived adequacy of that support. Regression models, adjusting for age, sex, race and income show that structural characteristics such as total network size, number of face-to-face contacts and number of proximal ties are associated with greater availability of both instrumental and emotional support. The perceived adequacy of both types of support is most strongly related to the number of monthly face-to-face contacts. Comparisons of specific types of ties show that neither ones' spouse nor ones' children are primary sources of support. Rather the presence of a confidant is strongly associated with both dimensions of instrumental and emotional support; the presence of a spouse is not. And, while ties with children are most strongly related to aspects of instrumental support, ties with close friends and relatives are more strongly related to aspects of emotional support. Analyses of possible interactions show that for those without a spouse, confidants assume greater importance in providing emotional support. For those without children, ties with close friends and relatives assume a larger role relative to the perceived adequacy of both emotional and instrumental support.     

Validation of family history data in cancer family registries

BACKGROUND: Although family history information on cancer is used to infer risk of the disease in population-based, case-control, cohort, or family-based studies, little information is available on the accuracy of a proband's report. In this study, we sought to determine the validity of the reporting of family history of cancer by probands in population-based and clinic-based family registries of breast, ovarian, and colorectal cancers. METHODS: To assess the accuracy of probands' reported family history of cancer in their relatives, we compared the family history from the personal interview of each proband to a reference standard that included pathology reports, self-reports, or death certificates on the relatives. Our study included 1111 families that accounted for 3222 relatives who were verified. To account for within-family correlations in the responses, we used a generalized estimating equation approach. RESULTS: The probability of agreement between the proband-reported cancer status in a relative with the reference standard varied by cancer site and by degree of relationship to the proband. This probability for first-degree relatives was 95.4% (95% confidence interval [CI]=92.6-98.3) for female breast cancer; 83.3% (95% CI=72.8-93.8) for ovarian cancer; 89.7% (95% CI=85.4-94.0) for colorectal cancer; and 79.3% (95% CI=70.0-88.6) for prostate cancer. CONCLUSIONS: We found high reliability of probands' reporting on most cancer sites when they reported on first-degree relatives and moderate reliability for their reporting on second- and third-degree relatives. Overreporting of cancer was rare (2.4%). Race or ethnicity and gender of the proband did not influence the accuracy of reporting. However, degree of relationship to the proband, type of cancer, age at diagnosis of the proband, and source of ascertainment of probands were statistically significant predictors of accuracy of reporting.     

Psychosocial aspects of acquired immunodeficiency syndrome]

Psychosocial aspects which arise with regard to people directly or indirectly involved with AIDS: patients, relatives and professional staff, are studied. The results show that the population assisted in the Ribeir?o Preto region is predominantly young, male and drug-addicted. The patients with "positive" results show reactions similar to those described by Kluber-Ross (1977) for terminal patients. The behavior observed in relatives forms a continuum which varies from the negation of the illness to the overprotection of the patient. For the professionals, perplexity is the most common reaction when they face a population which is different from that with which they are used to dealing. Finally, the data acquired indicate that the psychologist can help the professionals to deal with the reactions of the patients by integrating them into their organic and emotional aspects.     

Self-reported family history of cancer: the utility of probing questions

BACKGROUND: Many studies of familial aggregation of cancer have relied on self-reported cancer family history data because verification through medical records was not feasible. Self-reported data might be nonspecific and prone to errors, although of high quality for certain cancers. We evaluated the utility of a brief follow-up survey to elicit further details regarding uncertain cancer conditions. METHODS: We reviewed all of the cancer family histories reported by 13,972 survivors participating in the Childhood Cancer Survivor Study. There were 533 affected relatives (obtained from 500 cases) identified as having uncertain cancer histories. Of these 500 cases, 386 (77%) were successfully recontacted. They completed a 5- to 7-minute telephone survey containing focused, probing questions regarding their 406 relatives with uncertain cancer conditions. Two investigators independently reviewed the survey responses. RESULTS: A disease site and malignancy status could be determined for 81% (331 of 406) of the relatives. Among the 312 relatives with a single uncertain cancer condition, the additional survey identified 58% as having a malignant condition with a known primary site, 7% as having a malignant condition with an undetermined primary site, 22% as having a benign condition, and 13% for whom no further clarification was possible. Among the 94 relatives with multiple reported cancers, 64% were found to represent a single diagnosis. CONCLUSIONS: Incorporation of additional probing questions into the initial family history interview would improve the ability to classify cancer reports by site and malignancy status. The utility of these additional questions could vary by the site and specificity of the initial cancer reports.     

Quality of care for the dying in a hospital

Aim. To analyse the accounts of the relatives of patients who died during one year in a hospital in Navarre, within a study of the quality of care for the dying. Method. A telephone interview was conducted with the person dearest to the patients who had died in the course of one year in the hospital. The TOOLKIT survey, previously validated, was used to this end. In all cases a maximum of three calls was made to establish contact with the person to be interviewed. The calls were made between three and six months following the death of the patient. The first part of the interview was aimed at providing information about the aim of the study and informed consent was requested. Four fields were analysed: physical and emotional comfort, shared decision making, respect and dignity, and care of the carers. The interview ended with an open question: Do you wish to add anything else? Results. The number of persons interviewed was 327. For the 712 deceased in the hospital who met the requirements, 320 persons could not be located and another 65 refused to be interviewed. Many complaints were gathered concerning the quantity and quality of information and the manner and time of its provision. There were also complaints concerning respect for the wishes of the patient, the management of pain, dyspnoea and personal treatment received. The lack of emotional support perceived by the relatives is also important. Conclusions. Besides the numerical variables contained in the survey, we believe that the narrative that a survey can contain provides key information for the analysis of care quality.     

Anticipatory grief among close relatives of patients in hospice and palliative wards

A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.     

Communication and awareness about death: a study of a random sample of dying people

The literature suggests that doctors' and nurses' openness about communicating with the terminally ill and their families has increased in the past two or three decades, partly influenced by the hospice movement. The present study reports the perceptions of relatives, hospital doctors, general practitioners and nurses who knew a random sample of 639 adults dying in England in 1987. The results from professionals suggest a general preference for openness about illness and death, tempered by the consideration that bad news needs to be broken slowly, in a context of support, while recognising that not everyone wishes to know all. In practice people dying from cancer were more likely to be reported as knowing what their illness was and that they would die than were people dying from other conditions. This difference held when controlling for the fact that death was more likely to be medically expected in cancer. Comparisons with 1969 show that the increases were due largely to cancer patients being told the truth more frequently by hospital doctors. This may be due to changed practices, or to the increase in the number of hospital episodes in the last year of life. Nevertheless, situations of 'closed awareness' where relatives were told and patients were not, and situations where patients were left to guess the likely outcome for themselves, were still quite common in 1987. Nurses and hospice practitioners were only marginally involved in breaking bad news, this remaining the province of hospital doctors and general practitioners. Relatives in general praised the manner in which they and patients were told, although a small proportion reported insensitive practice. In retrospect a high proportion of both relatives and professionals felt that the levels of awareness were best as they were, although this preference may have been influenced by a desire to see things in a good light. Most relatives reported adequate support and information being given by professionals to them during the patient's illness. On the whole, doctors provided information, and friends and family provided emotional support to relatives. Again, hospital doctors played an increasingly important role compared to 1969 in providing information, with general practitioners' role decreasing in this area. Gaps in information included not being told enough about what was wrong with the patient, not being told the reasons for decisions about treatment and, to a lesser extent, not being given information about how to care for the patient.     

Follow-up group for schizophrenic patients using Clozapine and their relatives: the participants' perception

This study described the views of Schizophrenic patients as well as those of their relatives concerning the group follow-up. The population consisted of 11 patients participating in the group and of 11 relatives who most often accompanied them to group meetings. Interviews, which were tape-recorded and fully transcribed, were used for data collection. The obtained results showed that the group consisted in a favorable space for talking and listening about the disease as well as to exchange experiences as it provided more security and self-esteem to the participants. In addition to improving the patients' relationships and providing therapeutic help to their relatives. Such results showed the need for a new way to view mentally ill patients in order to search for more adequate therapeutic attitudes which can act on life production.     

Study on the effects of telephone counseling for family caregivers of demented patients

PURPOSE: The purposes of this study were to clarify the impact of telephone counseling on the actual state of family caregivers of demented patients, and to investigate strategies of public health care for such caregivers. METHODS: We classified 206 counseling cases, including 103 cases in 1999 and 103 cases through mid-2000, using several checklists, and analyzed date with the chi 2 test. RESULTS: 1) The most common symptom of demented patients was "forgetfulness." (106 cases) 2) 87 caregivers (42.2%) lived separately from demented patients, and in 60 cases the caregivers were daughters. 3) 104 caregivers suffered from stress because of caregiving difficulties, 89 (43.2%) having "emotional difficulties in caregiving," 33 (16.0%) "social difficulties with caregiving," 28 (13.6%) "physical difficulties with caregiving," and 8 (3.9%) "financial difficulties." While 102 caregivers (49.5%) reported no caregiving difficulties. 42 (40.4%) belonged to more than two of the listed categories. 4) The greatest concern of caregivers was "how to care for senile patients' mental symptoms." followed by "whether suffering from dementia" in 36 cases, "how to use welfare services" in 35, "whether the doctor should be consulted" in 30, and "expression of emotion" in 30 cases. The caregivers for whom "expression of emotion was an issue" had emotional, social and physical caregiving difficulties, prompting the contact for telephone counseling. 5) Public health nurses who had been working for more than 10 years tended to deal with the caregivers' "emotional caregiving difficulties" (P = 0.05). There were no differences regarding other items. CONCLUSIONS: 1) The results suggest that living apart, especially for daughters, has an effect on caregiving with senile patients if the number of family caregivers is reduced. In the future, we should consider ways to support families living apart from senile patients. 2) The results also reveal that caregivers of senile patients have emotional, social and physical caregiving difficulties. Therefore, a necessity for support of caregivers' emotional and physical health maintenance, and provision of community education is indicated. 3) Caregivers can talk more freely on the telephone than face-to-face, and get help when senile patients' symptoms are in the early stages. Therefore, it is possible to mitigate caregiving difficulties by intervening in their problems before these become serious and entrenched. 4) Telephone counseling gives caregivers the opportunity to express their emotions. Therefore, it can be expected to mitigate caregiving difficulties through appropriate targets of their expressed concerns.     

Social support and psychological well-being in breast cancer patients

many aspects of the role of social support in psychological adaptation to illness have been investigated using different definitions of the construct. The present study focused on the role of instrumental social support and one aspect of emotional social support, namely supportive communication. In addition, the differential role of support provided in these areas by the spouse and significant others (SO) was examined. Subjects were 76 post-mastectomy breast cancer patients treated at a University Hospital in Istanbul. Patients were administered Spielberger's State-Trait Anxiety Inventory and the Beck Depression Inventory, and were interviewed using a structured interview developed by the authors. Results showed that supportive communication with the spouse, positive reaction of the spouse to mastectomy, marital satisfaction and open discussion of emotions concerning cancer were positively associated with psychological well-being. Instrumental support from the spouse or SO was not related to depression or anxiety.     

Women with invasive uterine cervical neoplasm: family support as a help

An investigation of qualitative approach based on psycho-oncology principles, that had as objective to analyze the perception of women with a diagnosis of invasive cancer in the cervix; to describe family support that helped them to face the disease; to identify the bio-psycho-sociological modifications arising from the cancer and to describe their experiences on facing such a diagnosis. The subjects of the research were twelve women who had the diagnosis of invasive cancer in the cervix, with age varying from 28 to 61 years old who were undertaking treatment. Through semi-structured interviews it was possible to identify the family as the basic support on facing the cancer, which lead to positive or negative results on the ways of handling the illness and the treatment.     

Cancer risk assessment: quality and impact of the family history interview

BACKGROUND: Identification of individuals at high risk for colon and breast cancer requires an adequate family history assessment and can influence cancer screening and genetic testing decisions. Little data exist that evaluate the completeness of the family history interview in primary care. METHODS: Retrospective chart review of 995 new patient visits to 28 primary care physicians evaluating the completeness of the family cancer history for colon or breast cancer. Family history information was evaluated for inclusion of age at diagnosis, degree of kinship, and specification of disease of interest. RESULTS: Family history information on cancer diagnoses was collected on 679 (68%) of the patients. Specific information regarding the individual affected and the cancer diagnosis was present in 414 (61%) of the records. Affected first-degree relatives were more likely to have their age of cancer diagnosis recorded than second-degree relatives (39%, 95% confidence interval [CI]=34%-44% vs 16%, 95% CI=12%-20%). Age at diagnosis of cancer in first-degree relatives was documented in 51% of colon cancers, 38% of breast cancers, and 27% of ovarian cancers. Only 17% of individuals who meet criteria for early-onset breast cancer genetic testing were referred for genetic services. CONCLUSIONS: Adequate cancer risk assessment using family history information requires age at cancer diagnosis and specification of a cancer diagnosis. Age at diagnosis was frequently missing from family history assessments, which could have a potential impact on identification of high-risk individuals. When family history information does identify high-risk individuals, only the minority are referred for genetic services.     

A family history of breast cancer: women's experiences from a theoretical perspective

Individuals at increased risk of developing breast cancer due to their family history of the disease face a number of uncertainties. Personal cancer risk estimates are imprecise and current methods for early detection or prevention are not 100% effective. It is therefore not surprising that adverse psychosocial outcomes have been described within this population. Research attempting to predict the incidence of distress and dysfunction in individuals at increased risk of cancer has been largely a-theoretical and has overlooked a number of potentially important predictive variables. In particular, the influence of personal experience of cancer through involvement with affected relatives has been neglected. There are strong theoretical grounds for hypothesising that dimensions of personal experience may influence response to cancer risk. This paper discusses the potential impact of personal experience on risk perception, illness representations and decision-making. Systematic research in this area may improve predictions of outcome of cancer genetic counselling and inform the clinical process.     

Gender accommodation in online cancer support groups

The postings made to Internet forums by relatives and friends of people with breast and prostate cancer are described. Women post very frequently on the prostate cancer forum and assume a communication style that is similar to women elsewhere, prioritizing emotional forms of communication over the informational forms preferred by men and showing only mild signs of accommodation to a male style. Men on the breast cancer forum are in a minority and are often responding to the current or anticipated loss of a partner. Their communication behaviour is radically different from that required by dominant conceptions of masculinity. They prioritize emotional communication and the emotional welfare of family members. They experience this new form of communication as unsettling to their conceptions of traditional masculinity. Internet cancer support groups thus favour a form and content of communication generally associated with women's culture.     

Disclosure of a cancer diagnosis in Thai patients treated with radiotherapy

Although radiotherapy usually implies a cancer diagnosis, no available study has been reported as to what proportion of Thai patients treated with radiotherapy know their diagnosis and how they want related information revealed. We questioned 106 patients in order to determine the proportion who knew their cancer diagnosis, and interviewed patients who knew the diagnosis and relatives of patients both who knew and did not know it with semi-structured questionnaires concerning how they wanted to be told. Sixty-seven patients (63.2%) knew their cancer diagnosis. Multivariate analysis showed that the patients with the following characteristics were inclined to know their diagnosis: younger than 70 years old, head and neck or gynecological cancer, no previous treatment before radiotherapy, no accompanying relatives during the treatment, and patients with relatives who wanted to disclose the information. 97.0% of patients who knew the diagnosis indicated that they had really wanted to know, 89.5% and 73.3%, respectively of relatives who accompanied patients who knew and did not know it expressed the same wish. No demographic factors could predict who wanted to be told the diagnosis. The majority of patients and relatives who wanted the diagnosis disclosed wanted to know all related information before treatment. They wanted to hear this directly from the doctor in the presence of their relatives.