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PubMed2005

Giving up and giving in: the costs and benefits of daily sacrifice in intimate relationships.

This research provided the first empirical investigation of how approach and avoidance motives for sacrifice in intimate relationships are associated with personal well-being and relationship quality. In Study 1, the nature of everyday sacrifices made by dating partners was examined, and a measure of approach and avoidance motives for sacrifice was developed. In Study 2, which was a 2-week daily experience study of college students in dating relationships, specific predictions from the theoretical model were tested and both longitudinal and dyadic components were included. Whereas approach motives for sacrifice were positively associated with personal well-being and relationship quality, avoidance motives for sacrifice were negatively associated with personal well-being and relationship quality. Sacrificing for avoidance motives was particularly detrimental to the maintenance of relationships over time. Perceptions of a partner's motives for sacrifice were also associated with well-being and relationship quality. Implications for the conceptualization of relationship maintenance processes along these 2 dimensions are discussed.

Adaptation, Psychological↗
PubMed2006

Intergroup helping as status relations: Effects of status stability, identification, and type of help on receptivity to high-status group's help.

Integrating research on social identity processes and helping relations, the authors proposed that low-status group members who are high identifiers will be unwilling to receive help from the high-status group when status relations are perceived as unstable and help is dependency-oriented. The first experiment, a minimal group experiment, found negative reactions to help from a high-status outgroup when status relations were unstable. The 2nd and 3rd experiments, which used real groups of Israeli Arabs and Israeli Jews, replicated this finding and showed that high identifiers were less receptive to help from the high-status outgroup than low identifiers. The 4th experiment, a help-seeking experiment with real groups of competing high schools, found that the least amount of help was sought from a high-status group by high identifiers when status relations were perceived as unstable and help was dependency-oriented. Theoretical and applied implications are discussed.

Adolescent↗
PubMed2003

Population genetic screening programmes: principles, techniques, practices, and policies.

This paper examines the professional and scientific views on the principles, techniques, practices, and policies that impact on the population genetic screening programmes in Europe. This paper focuses on the issues surrounding potential screening programmes, which require further discussion before their introduction. It aims to increase, among the health-care professions and health policy-makers, awareness of the potential screening programmes as an issue of increasing concern to public health. The methods comprised primarily the review of the existing professional guidelines, regulatory frameworks and other documents related to population genetic screening programmes in Europe. Then, the questions that need debate, in regard to different types of genetic screening before and after birth, were examined. Screening for conditions such as cystic fibrosis, Duchenne muscular dystrophy, familial hypercholesterolemia, fragile X syndrome, hemochromatosis, and cancer susceptibility was discussed. Special issues related to genetic screening were also examined, such as informed consent, family aspects, commercialization, the players on the scene and monitoring genetic screening programmes. Afterwards, these questions were debated by 51 experts from 15 European countries during an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Amsterdam, The Netherlands, 19-20, November, 1999. Arguments for and against starting screening programmes have been put forward. It has been questioned whether genetic screening differs from other types of screening and testing in terms of ethical issues. The general impression on the future of genetic screening is that one wants to 'proceed with caution', with more active impetus from the side of patients' organizations and more reluctance from the policy-makers. The latter try to obviate the potential problems about the abortion and eugenics issues that might be perceived as a greater problem than it is in reality. However, it seems important to maintain a balance between a 'professional duty of care' and 'personal autonomy'.

Ethics↗
PubMed2000

Goal negotiation with older people in three day care settings.

Drawing on a wider study of effectiveness in three models of day care, this paper explores the process and outcome of goal negotiation with older people in a day hospital, an outreach service and a day centre. Using qualitative data from interviews with day care attenders and focus groups with service providers, differing perspectives on goal setting and achievement are presented. It concludes with a brief discussion of this approach in the wider context of promoting older people's participation in decision-making in day care settings, where the espoused emphasis is on maintaining and maximising personal autonomy and independent living.

Journal Article↗
PubMed1999

Perceived family dynamics of persons with chronic pain.

This qualitative study was conducted to gain an understanding of the experiences of persons with chronic pain and their relationships with family members and the family as a whole. The framework of systemic organization was used to define the areas of investigation guiding the formulation of broad questions relative to family functioning. Thirty persons with chronic pain (age 31-82 years, 73% women, 83% married, 83% European-American, 17% African-American) participated in the study. A semi-structured interview was conducted to elicit narrative descriptions of the participants' perspective of the pain experience and family functioning. The data were analysed using a constant comparison method of analysis described by Strauss. The dominant themes that emerged included: (i) emotional distress, (ii) distancing from family members, (iii) inability to share difficult feelings, (iv) intense mutual involvement with family members and identification with others' problems, (v) family isolation from community, and (vi) attempt at healing. A mid-range theory developed out of the data and explicated with the framework of systemic organization, was one of balancing and counterbalancing connectedness (spirituality) with personal autonomy or separateness (control) in order to find congruence for the family and individuals within. The pain sometimes acted as a mechanism regulating the distance and closeness among family members. Based on this information, nurses can facilitate better understanding among family members, encourage autonomy, assist individuals to express feelings and needs more directly, and facilitate members to respond to each other.

Adult↗
PubMed2001

The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease.

AIM: The aim of this study was to describe patients' experiences of suffering from end-stage renal disease (ESRD). RATIONALE: The rationale was to investigate how persons find meaning or make sense of their situation and how they experience suffering. The theoretical basis for the study was to view suffering at three levels. The first level was related to sickness and treatment. The second level was related to the care provided and the third level was related to each person's unique life experience and existence. METHOD: Data were collected by interviews focusing on questions concerning daily life, needs, and expectations for the future. A qualitative interpretative content analysis was used. Fifteen patients between the ages of 50-86 participated in the study. FINDINGS: Two main themes were identified describing these patients suffering. The first theme, 'the haemodialysis machine as a lifeline' consisted of three subthemes: 'loss of freedom', 'dependence on the caregiver', and 'disrupted marital, family and social life'. The second theme 'alleviation of suffering' consisted of two subthemes: 'gaining a sense of existential optimism' and 'achieving a sense of personal autonomy'. CONCLUSION: This study indicated that, in the lives of patients on haemodialysis, the main areas of suffering were related to loss of freedom expressed as dependence on the haemodialysis machine as a lifeline and, the caregivers. This time-consuming and tiring dependence affected marital, family and social life. Alleviation of suffering could be achieved by accepting dependence on the haemodialysis machine and maintaining autonomy by being seen as an individual by the caregivers.

Activities of Daily Living↗
PubMed2002

Evaluation of communicative and functional abilities in Wolf-Hirshhorn syndrome.

BACKGROUND: Wolf-Hirschhorn syndrome (WHS) is a genetic condition characterized by many clinical disorders, learning difficulties, dysphagia, neuromotor deficits and communicative deficits. Up until now, no studies in the literature have described the development of communicative and functional abilities in subjects with WHS. METHOD: In the present study of 11 patients with WHS, a descriptive analysis was made of several abilities and three groups of patients were identified on the basis of the severity of their functional deficit. RESULTS: A non-homogeneous picture of impairment emerged in various areas of development. Overall, the neuromotor abilities of these patients were more adequate than their abilities related to autonomy in personal life, alimentary function, and cognitive and communicative-linguistic aspects. CONCLUSION: Based on the identification of specific patterns of communicative and functional impairment in subjects with WHS, rehabilitative intervention strategies can be planned to increase their communicative opportunities, and possibilities for active and autonomous participation in various life contexts (e.g. home, school and the social environment).

Abnormalities, Multiple↗
PubMed2001

Doctor discontent. A comparison of physician satisfaction in different delivery system settings, 1986 and 1997.

OBJECTIVE: To examine the differences in physician satisfaction associated with open- versus closed-model practice settings and to evaluate changes in physician satisfaction between 1986 and 1997. Open-model practices refer to those in which physicians accept patients from multiple health plans and insurers (i.e., do not have an exclusive arrangement with any single health plan). Closed-model practices refer to those wherein physicians have an exclusive relationship with a single health plan (i.e., staff- or group-model HMO). DESIGN: Two cross-sectional surveys of physicians; one conducted in 1986 (Medical Outcomes Study) and one conducted in 1997 (Study of Primary Care Performance in Massachusetts). SETTING: Primary care practices in Massachusetts. PARTICIPANTS: General internists and family practitioners in Massachusetts. MEASUREMENTS: Seven measures of physician satisfaction, including satisfaction with quality of care, the potential to achieve professional goals, time spent with individual patients, total earnings from practice, degree of personal autonomy, leisure time, and incentives for high quality. RESULTS: Physicians in open- versus closed-model practices differed significantly in several aspects of their professional satisfaction. In 1997, open-model physicians were less satisfied than closed-model physicians with their total earnings, leisure time, and incentives for high quality. Open-model physicians reported significantly more difficulty with authorization procedures and reported more denials for care. Overall, physicians in 1997 were less satisfied in every aspect of their professional life than 1986 physicians. Differences were significant in three areas: time spent with individual patients, autonomy, and leisure time (P < or =.05). Among open-model physicians, satisfaction with autonomy and time with individual patients were significantly lower in 1997 than 1986 (P < or =.01). Among closed-model physicians, satisfaction with total earnings and with potential to achieve professional goals were significantly lower in 1997 than in 1986 (P < or =.01). CONCLUSIONS: This study finds that the state of physician satisfaction in Massachusetts is extremely low, with the majority of physicians dissatisfied with the amount of time they have with individual patients, their leisure time, and their incentives for high quality. Satisfaction with most areas of practice declined significantly between 1986 and 1997. Open-model physicians were less satisfied than closed-model physicians in most aspects of practices.

Adult↗
PubMed1998

A map to a new treasure island: the human genome and the concept of common heritage.

While the 1970's have been called the environmental years, the 1990's could be seen as the genome years. As the challenge to map and to sequence the human genome mobilized the scientific community, risks and benefits of information and uses that would derive from this project have also raised ethical issues at the international level. The particular interest of the 1997 UNESCO Declaration relies on the fact that it emphasizes both the scientific importance of genetics and the appropriate reinforcement of human rights in this area. It considers the human genome, at least symbolically, as the common heritage of humanity.

Advisory Committees↗
PubMed2006

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Anesthesiology↗
PubMed2002

A sex police for adults with "mental retardation"? Comment on Spiecker and Steutel.

This article is a rebuttal of the claim by Spiecker and Steutel that sex between people with mild and moderate "mental retardation" is morally permissable only with the substitutive consent of caregivers. After a review of historical, empirical and practical considerations, an ethical analysis is undertaken which concludes that Spiecker and Steutel's arguments are deeply flawed and their proposed policy morally objectionable.

Adult↗
PubMed2002

Rights not restrictions for learning disabled adults: a response to Spiecker and Steutel.

What follows is a response to an article by Spiecker and Steutel in which they pose the question of whether sex between people with "mental retardation" (sic) is morally permissible and in which they argue that since many such people cannot give "valid consent", the additional consent of caretakers may be required. However, we argue that the term "mental retard" is offensive and that either the UK terminology ("the learning disabled") or the internationally accepted term ("intellectually disabled") are more acceptable. Moreover, we point out that Spiecker and Steutel are mistaken. Many "learning disabled" people can and do give "valid consent". In any case, their question is itself dubious. Why should two learning disabled people who want to have sex together need anyone else's consent? In addition, we briefly address the rights of the learning disabled to the same sexual freedom as others, on the one hand, and to freedom from sexual exploitation on the other hand. Finally, we consider the implications of these issues for moral education. We suggest that carers need to develop empathy and, where necessary, advocacy skills. We point to the existence of training programmes on sexuality and protection issues.

Adult↗
PubMed2002

Reasonable paternalism and the limits of sexual freedom: a response to Greenspan and Leicester and Cooke.

This response argues that Greenspan's comment is basically incoherent, and that the position taken by Leicester and Cooke has unacceptable practical consequences. Greenspan admits that many people with 'mental retardation' lack adult decision-making capacities, but at the same time assumes that they have these very capacities in assigning them freedom rights. Leicester and Cooke consistently argue that people with 'mental retardation' do have adult reasoning powers and therefore should be given freedom rights. But this point has the rather disquieting implication that both the practice of treating 'mental retardation' as an exempting condition and the practice of giving them important special welfare rights seem to loose their justification.

Adult↗
PubMed2006

Patient satisfaction and treatment environment: a 20-year follow-up study from an acute psychiatric ward.

The aim of this study was to examine to what extent the different subscales of the Ward Atmosphere Scale (WAS) are related to patient satisfaction on wards for psychotic patients. We wanted to examine if it was possible to replicate previous findings from cross-sectional studies and improve the understanding of which of the WAS subscales that should be considered the most important for patient satisfaction. From 1981 through 2000, the ward atmosphere, in an acute psychiatric ward, was evaluated 11 times with the Ward Atmosphere Scale (WAS). A total of 129 patients completed the WAS as well as a General Satisfaction Index (GSI) comprising three items. Z-scores were calculated to describe the fluctuations in the GSI and the WAS subscales. Four of the WAS subscales, Involvement, Practical orientation, Angry and aggressive behavior and Staff control, strongly co-varied with patient satisfaction. Unexpectedly, the Support and Order and organization subscales correlated only moderately with patient satisfaction. The remaining five WAS subscales (Spontaneous behavior, Autonomy, Personal problem orientation, Program clarity and Staff attitude to expressed feelings) were only weakly correlated with patient satisfaction. This study confirms that four of the six assumedly most important WAS subscales are strongly related to patient satisfaction on wards for psychotic patients. Changes in these WAS subscales seems to be paralleled by changes in patient satisfaction in the expected direction.

Acute Disease↗