Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients.
BACKGROUND: In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers. METHODS: The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent). RESULTS: Of the 988 terminally ill patients, 59.4 percent were over the age of 65 years, and 51.5 percent were women. The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. CONCLUSIONS: In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers. (+info)
The ultimate curse: the doctor as patient.
Doctors may be thrust into the difficult situation of treating friends and colleagues. A doctor's response to this situation is strongly influenced by his or her emotions and by medical tradition. Such patients may be treated as 'special cases' but the 'special' treatment can backfire and lead to an adverse outcome. Why does this happen and can doctors avoid it happening? These issues are discussed in this commentary on Dr. Crisci's paper, 'The ultimate curse.' (+info)
Family adversity, positive peer relationships, and children's externalizing behavior: a longitudinal perspective on risk and resilience.
Peer acceptance and friendships were examined as moderators in the link between family adversity and child externalizing behavioral problems. Data on family adversity (i.e., ecological disadvantage, violent marital conflict, and harsh discipline) and child temperament and social information processing were collected during home visits from 585 families with 5-year-old children. Children's peer acceptance, friendship, and friends' aggressiveness were assessed with sociometric methods in kindergarten and grade 1. Teachers provided ratings of children's externalizing behavior problems in grade 2. Peer acceptance served as a moderator for all three measures of family adversity, and friendship served as a moderator for harsh discipline. Examination of regression slopes indicated that family adversity was not significantly associated with child externalizing behavior at high levels of positive peer relationships. These moderating effects generally were not qualified by child gender, ethnicity, or friends' aggressiveness, nor were they accounted for by child temperament or social information-processing patterns. The need for process-oriented studies of risk and protective factors is stressed. (+info)
Predictors of PTSD in mothers of children undergoing bone marrow transplantation: the role of cognitive and social processes.
OBJECTIVE: To investigate the role of cognitive and social processing in posttraumatic stress symptoms and disorder (PTSD) among mothers of children undergoing bone marrow and hematopoietic stem-cell transplantation (BMT/SCT). METHOD: Questionnaires assessing emotional distress, BMT-related fears, and negative responses of family and friends were completed by 90 mothers at the time of the BMT infusion and 3 and 6 months post-BMT. PTSD symptoms were measured 6 months post-BMT by both paper-and-pencil and structured interview methods. RESULTS: Emotional distress, BMT-related fears, and negative responses of family and friends assessed at the time of BMT hospitalization were predictive of later PTSD symptoms. None of these variables prospectively predicted a PTSD diagnosis as measured by the structured interview. CONCLUSIONS: Higher levels of general psychological distress, cognitive interpretations of the threat of the BMT for the child's future functioning, and negative responses of family and friends may place mothers at risk for post-BMT posttraumatic stress symptomatology. (+info)
Cannabis and smoking research: interviewing young people in self-selected friendship pairs.
This paper will discuss the use of paired interviewing as the main method of generating data in a study exploring the social context of young people's smoking and cannabis use. The research, conducted as part of an on-going PhD, involved 59 participants of both genders, aged 13-15 from different socioeconomic backgrounds, and with a wide range of cigarette and cannabis use experience. Participants were offered the choice of an individual interview or a paired interview with a friend of their choice, most opting for the paired format. The paper will discuss many of the methodological and ethical features of this method. In particular, it will discuss the potential for paired interviewing to access accounts generated within close friendship bonds, making this method distinctive from larger focus groups. It will also explore how paired interviewing facilitates access to interactions between participants, shedding light on many aspects of young people's social relationships and allowing occasional glimpses into more private territory. It will argue that the paired interview method can make a novel and distinctive contribution to health education/promotion research, policy and practice, and to any research that aims more fully to understand aspects of young people's social worlds. (+info)
The use of narrative data to inform the psychotherapeutic group process with suicide survivors.
While bereavement is considered by many to be among one of the most stressful life events, it becomes even more distressing when it is related to the suicide of a loved one. A synopsis of psychosocial outcomes of suicide survivor bereavement is presented along with an overview of group interventions designed to help these survivors cope with their grief. The structure of an ongoing eight-week bereavement support group is described to lay a foundation for the application of narrative theory within the group process. Using narrative theory and structural analysis, the discourse of group members is presented and various themes are discussed in an effort to contribute to the task of developing effective psychotherapeutic group interventions for survivors of suicide. (+info)
Spouses and unrelated friends of probands as controls for stroke genetics studies.
To plan a multisite, ischemic stroke genetic study, stroke patients were surveyed about the availability and characteristics of a convenience sample of spouse/friend controls. 65% of all stroke-affected probands reported a living spouse. A more detailed survey was conducted at the University of Virginia, Charlottesville, Va., USA: 51% of stroke patients reported a living, stroke-free spouse who would be willing to serve as a control, and 49% reported having a stroke-free friend who would be willing to serve as a control. Overall, 75% of stroke patients reported at least 1 individual willing to participate as a control. Cases without an identified control were more likely to be non-white (48%) than were cases with a control (13%; p = 0.00004). Cases were older than controls (67.3 vs. 59.2 years; p = 0.000002), and a greater proportion of cases than controls were male (57 vs. 33%; p = 0.0002). Without proper attention to matching, the use of a spouse/friend convenience sample would result in imbalances in basic demographic characteristics. (+info)
The advice-giving role of female friends and relatives during pregnancy.
Disparities in prenatal smoking rates indicate the need for new smoking cessation intervention strategies tailored to low-income pregnant women. Information about natural patterns of advice-giving during pregnancy would facilitate this goal. This study examines the advice-giving role of close female friends and relatives ('confidantes') during pregnancy, and assesses the utility of including them in an intervention. A questionnaire was administered verbally to 225 low-income pregnant women to assess: (1) the prevalence and characteristics of confidantes, (2) the persuasiveness of confidante advice in general and with respect to smoking, specifically, and (3) the permissiveness of confidante smoking advice. Comparisons were made with doctors and partners. Most women (91.4%) identified a confidante, the majority of whom were their own mothers. Doctors were rated most persuasive in their general prenatal advice, followed by confidantes and partners (all differences, P < 0.05). A similar pattern was observed among prenatal smokers in relation to advice given about prenatal smoking. As compared to doctors, confidante advice was significantly more permissive of smoking during pregnancy. While women value their doctors' advice during pregnancy, close female friends and relatives also have an important and unique role. Educational efforts may be effective when directed at these advice-givers. (+info)