57 research outputs found

    The experience of palliative patients and their families of a family meeting utilised as an instrument for spiritual and psychosocial care: A qualitative study

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    Background: This study explores the experience of palliative patients and their family members of a family meeting model, utilised as an instrument for the provision of spiritual and psychosocial care. In doing so the study embraces a broad understanding of spirituality which may or may not include formal religious practice and a concept of psychosocial care that includes: social and emotional well-being, communication, self esteem, mental health and adaptation to illness. The meeting of spiritual and psychosocial needs is considered to be an important aspect of palliative care. Methods. This qualitative study, philosophically underpinned by hermeneutic phenomenology, investigates the participatory experience of palliative care patients and their significant family members of such a family meeting. People registered with two large metropolitan palliative care services, who met selection criteria, were referred by medical staff. Twelve of the 66 referred took part in family meetings which also included significant others invited by the patient. A total of 36 family members participated. The number of participants of individual family meetings ranged from two to eleven. After the family meeting every participant was invited to take part in an individual in-depth interview about their experience of the meeting. Forty seven interviews were conducted. These were audio recorded and transcribed. Results: Data analysis, utilising Ricoeur's theory of interpretation, revealed seven main themes: personal experience of the meeting, personal outcomes, observation of others' experience, observation of experience and outcomes for the family unit, meeting facilitation, how it could have been different and general applicability of the family meeting. Throughout these themes were numerous references to aspects of the web of relationships which describe the concept of spirituality as it is defined for the purpose of this study. Conclusions: The findings indicate the potential of the type of family meeting reported for use in the spiritual and psychosocial care of people receiving palliative care and their families. However further research is needed to explore its application to more culturally diverse groups and its longer term impact on family members.Heather M Tan, Anne Wilson, Ian Olver and Christopher Barto

    Repeated Assessments of Informed Consent Comprehension among HIV-Infected Participants of a Three-Year Clinical Trial in Botswana

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    Informed consent (IC) has been an international standard for decades for the ethical conduct of clinical trials. Yet frequently study participants have incomplete understanding of key issues, a problem exacerbated by language barriers or lack of familiarity with research concepts. Few investigators measure participant comprehension of IC, while even fewer conduct interim assessments once a trial is underway.We assessed comprehension of IC using a 20-question true/false quiz administered in 6-month intervals in the context of a placebo-controlled, randomized trial for the prevention of tuberculosis among HIV-infected adults in Botswana (2004-2009). Quizzes were offered in both Setswana and English. To enroll in the TB trial, participants were required to have ≥ 16/20 correct responses. We examined concepts understood and the degree to which understanding changed over three-years. We analyzed 5,555 quizzes from 1,835 participants. The participants' highest education levels were: 28% primary, 59% secondary, 9% tertiary and 7% no formal education. Eighty percent of participants passed the enrollment quiz (Quiz1) on their first attempt and the remainder passed on their second attempt. Those having higher than primary education and those who took the quiz in English were more likely to receive a passing score on their first attempt (adjusted odds ratios and 95% confidence intervals, 3.1 (2.4-4.0) and 1.5 (1.2, 1.9), respectively). The trial's purpose or procedures were understood by 90-100% of participants, while 44-77% understood randomization, placebos, or risks. Participants who failed Quiz1 on their initial attempt were more likely to fail quizzes later in the trial. Pass rates improved with quiz re-administration in subsequent years.Administration of a comprehension quiz at enrollment and during follow-up was feasible in a large, international collaboration and efficiently determined IC comprehension by trial participants. Strategies to improve understanding of concepts like placebos and randomization are needed. Comprehension assessments throughout a study may reinforce key concepts

    Common variation near CDKN1A, POLD3 and SHROOM2 influences colorectal cancer risk

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    We performed a meta-analysis of five genome-wide association studies to identify common variants influencing colorectal cancer (CRC) risk comprising 8,682 cases and 9,649 controls. Replication analysis was performed in case-control sets totaling 21,096 cases and 19,555 controls. We identified three new CRC risk loci at 6p21 (rs1321311, near CDKN1A; P = 1.14 × 10(-10)), 11q13.4 (rs3824999, intronic to POLD3; P = 3.65 × 10(-10)) and Xp22.2 (rs5934683, near SHROOM2; P = 7.30 × 10(-10)) This brings the number of independent loci associated with CRC risk to 20 and provides further insight into the genetic architecture of inherited susceptibility to CRC.Swedish Research Council et al.Manuscrip

    The family meeting addressing spiritual and psychosocial needs in a palliative care setting :usefulness and challenges to implementation

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    Introduction: This study evaluated the use of a family meeting model to address the spiritual needs of palliative patients and their family members in the context of two metropolitan palliative care (PC) services offering hospital, hospice, and home care. Murphy's family meeting model that incorporates a broad understanding of spirituality was utilized. Here we report the acceptability of this model to staff and patients in these settings. Methods: Qualitative methods, informed by an interpretive approach and underpinned by Hermeneutic phenomenology, were used to evaluate a trial of the family meeting model. Participants included 12 palliative patients and 35 family members. Twelve family meetings were facilitated, by the lead author (H.T.). Following each meeting individual in-depth interviews were conducted with consenting participants. Interviews were also held with 14 PC staff from a variety of disciplines, who had referred patients to the study. Transcribed interviews were analysed utilizing Ricoeur's theory of interpretation. Findings: Patients, family members, and staff indicated that participation in a family meeting of this type would be a valuable addition to regular PC services. However, practical barriers to its application were identified and included the need for specific meeting facilitation skills, funding priorities, staff time, and possible language and cultural issues. Conclusion: This model of family meeting is potentially a very useful intervention in a setting which promotes holistic care of patients and their family members, including attention to psychosocial and spiritual care. Strategies to overcome barriers to implementation such as time and cost issues need further investigation.Heather Tan, Anne Wilson, Ian Olver, Christopher Barto

    The Evaluation of the King Rama VII Mining Museum in Mae Moh, Thailand

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    The Electricity Generating Authority of Thailand (EGAT) operates a lignite mine and power plant in Mae Moh, Thailand. In the 1990s the environmental and health effects of EGAT's operations caused them to reassess and improve their practices. As part of this effort EGAT built a museum to be an educational resource for the public regarding mining and EGAT's emissions controlling initiatives. - Our project goals were to uncover the objectives of the museum and to determine if these objectives were being met. After our analysis, short-term improvements were suggested for the museum's formal dedication ceremony by Princess Sirindhorn in June of 2007 as well as future long-term recommendations

    On the fragility of medical virtue in a neoliberal context: the case of commercial conflicts of interest in reproductive medicine

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    Social, political, and economic environments play an active role in nurturing professional virtue. Yet, these environments can also lead to the erosion of virtue. As such, professional virtue is fragile and vulnerable to environmental shifts. While physicians are often considered to be among the most virtuous of professional groups, concern has also always existed about the impact of commercial arrangements on physicians' willingness and capacity to enact their professional virtues. This article examines the ways in which commercial arrangements have been negotiated to secure medical virtue from real or perceived threats of erosion. In particular, we focus on the concern surrounding conflicts of interest arising from commercial arrangements that have developed as a result of neoliberal economic and social policies. The deregulation of medical markets and privatization of services have produced new commercial relationships that are often misunderstood by patients, publics, and physicians themselves. 'Conflicts of interest' policies have been introduced in an attempt to safeguard ethical conduct and medical practice. However, a number of virtue ethicists have critiqued these policies as inadequate for securing virtue. We examine the ways in which commercial arrangements have been seen to impact upon medical virtue, both historically and in the context of modern medicine (using the example of fertility services in Australia). We then describe and critique current efforts to restore clinical virtue through both conflict of interest policies and through virtue ethics. Finally, we suggest some possible ways of addressing the corrosive effects of neoliberalism on medical virtue.15 page(s

    Examining variation across treatment clinics in cancer patients' psychological outcomes: results of a cross sectional survey

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    The majority of research on psychological outcomes for cancer patients has focussed on the role of individual characteristics, and disease and treatment factors. There has been very little exploration of the potential contribution of the treatment clinic to these outcomes. This study explored whether there is variation among clinics in cancer patients' psychological outcomes. Cancer outpatients were recruited from 22 medical oncology and haematology clinics in Australia. Participants completed a pen and paper survey including the Hospital Anxiety and Depression Scale (HADS), as well as sociodemographic, disease and treatment characteristics. Of those eligible to participate, 4233 (82%) consented and 2811 (81% of consenters) returned the completed survey. There was no statistically significant variation in HADS depression scores across clinics. Some difference in anxiety scores derived from the HADS questionnaire between clinics (p = 0.03) was found with the percentage of between-clinic variation estimated to be 1.11%. However, once all demographic, disease and treatment predictors were adjusted for there was no statistical differences between clinics (percent of between-clinic variation = 0.53%; p = 0.1415). Psychological outcomes were not found to vary between clinics. Other sources of variation including patient characteristics may over-ride between-clinic variability, if it exists
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