Search

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

Introduction: Quality of life is included in the economic evaluation of health services by measuring the preference for health states, i.e. health state utilities. However, most intervention studies include a disease-specific, not a utility, instrument. Consequently, there has been increasing use of statistical mapping algorithms which permit utilities to be estimated from a disease-specific instrument. The present paper provides such algorithms between the MacNew Heart Disease Quality of Life Questionnaire (MacNew) instrument and six multi-attribute utility (MAU) instruments, the Euroqol (EQ-5D), the Short Form 6D (SF-6D), the Health Utilities Index (HUI) 3, the Quality of Wellbeing (QWB), the 15D (15 Dimension) and the Assessment of Quality of Life (AQoL-8D). Methods: Heart disease patients and members of the healthy public were recruited from six countries. Non-parametric rank tests were used to compare subgroup utilities and MacNew scores. Mapping algorithms were estimated using three separate statistical techniques. Results: Mapping algorithms achieved a high degree of precision. Based on the mean absolute error and the intra class correlation the preferred mapping is MacNew into SF-6D or 15D. Using the R squared statistic the preferred mapping is MacNew into AQoL-8D. Implications for research: The algorithms reported in this paper enable MacNew data to be mapped into utilities predicted from any of six instruments. This permits studies which have included the MacNew to be used in cost utility analyses which, in turn, allows the comparison of services with interventions across the health system. [ABSTRACT FROM AUTHOR]

Background: In contemporary Western liberal society, patient participation has become a key goal in psychiatric healthcare treatment. Health professionals must encourage patients to play an active and involved part in their treatment. According to Danish health law, patients have the right to participate in their treatment, and the mental health system therefore needs to be reformed in order to ensure that treatment is based on individual, liberal, values. However, patient participation is not clearly defined, and it is therefore a challenge to transfer it to clinical practice. Aims: This integrative review's aims are to explore how professionals perceive the challenges regarding patient participation in the treatment course in mental health care. Design: An integrative review. Findings: Seven studies met the inclusion criteria: six employed qualitative methodologies and one utilised a mixed‐methods approach. The empirical studies took place in Norway, the UK and Australia, all in a mental health setting. Three themes were identified: ‘Patient participation as collaboration between the healthcare professional and patient’, ‘Challenges to participation’ and ‘From a professional's perspective – what expectations do patients have when participating in decision‐making?’ Conclusion: Different synonymous terms describing the patient's active role during treatment – user participation, collaboration, partnership, user involvement and patient participation – are linked to a recovery‐oriented approach, shared decision‐making, shared ownership and care plans. This integrative review achieves specific knowledge around patient participation, comparing the situation for adult patients with various mental disorders. However, upon reflecting on the included studies, patient participation is not clearly defined, and it is therefore difficult to transfer it to clinical practice. [ABSTRACT FROM AUTHOR]

When investigating the association between brain tumors and use of mobile telephones, accurate data on tumor position are essential, due to the highly localized absorption of energy in the human brain from the radio-frequency fields emitted. We used a point process model to investigate this association using information that included tumor localization data from the INTERPHONE Study (Australia, Canada, Denmark, Finland, France, Germany, Israel, Italy, Japan, New Zealand, Norway, Sweden, and the United Kingdom). Our main analysis included 792 regular mobile phone users diagnosed with a glioma between 2000 and 2004. Similar to earlier results, we found a statistically significant association between the intracranial distribution of gliomas and the self-reported location of the phone. When we accounted for the preferred side of the head not being exclusively used for all mobile phone calls, the results were similar. The association was independent of the cumulative call time and cumulative number of calls. However, our model used reported side of mobile phone use, which is potentially influenced by recall bias. The point process method provides an alternative to previously used epidemiologic research designs when one is including localization in the investigation of brain tumors and mobile phone use. [ABSTRACT FROM AUTHOR]

Background and Aims Flaws in previous studies mean that findings of J-shaped risk curves for gambling should be disregarded. The current study aims to estimate the shape of risk curves for gambling losses and risk of gambling-related harm (a) for total gambling losses and (b) disaggregated by gambling activity. Design Four cross-sectional surveys. Setting Nationally representative surveys of adults in Australia (1999), Canada (2000), Finland (2011) and Norway (2002). Participants A total of 10 632 Australian adults, 3120 Canadian adults, 4484 people aged 15-74 years in Finland and 5235 people aged 15-74 years in Norway. Measurements Problem gambling risk was measured using the modified South Oaks Gambling Screen, the NORC DSM Screen for Gambling Problems and the Problem Gambling Severity Index. Findings Risk curves for total gambling losses were estimated to be r-shaped in Australia {β losses = 4.7 [95% confidence interval (CI) = 3.8, 6.5], β losses2 = -7.6 (95% CI = -17.5, -4.5)}, Canada [β losses = 2.0 (95% CI = 1.3, 3.9), β losses2 = -3.9 (95% CI = -15.4, -2.2)] and Finland [β losses = 3.6 (95% CI = 2.5, 7.5), β losses2 = -4.4 (95% CI = -34.9, -2.4)] and linear in Norway [β losses = 1.6 (95% CI = 0.6, 3.1), β losses2 = -2.6 (95% CI = -12.6, 1.4)]. Risk curves for different gambling activities showed either linear, r-shaped or non-significant relationships. Conclusions Player loss-risk curves for total gambling losses and for different gambling activities are likely to be linear or r-shaped. For total losses and electronic gaming machines, there is no evidence of a threshold below which increasing losses does not increase the risk of harm. [ABSTRACT FROM AUTHOR]

Background: The present study aims to illuminate the meaning of working in a person-centred way as experienced by staff in nursing homes. Insights into what working in a person-centred way mean for nursing home staff may contribute to a more comprehensive understanding of what gives staff satisfaction in their work and support further development of person-centred care approach in nursing homes. Methods: Interviews with 29 health care personnel who had participated in a one-year intervention focusing on person-centred care and thriving in three nursing homes in Australia, Norway and Sweden were performed, and a phenomenological-hermeneutical method was used to explore staffs' lived experiences of working in a person-centred way in nursing homes. Results: For nursing home staff, working in a person-centred way meant that they were able to meet individual resident's needs and expressed preferences in close family-like relationships, understanding the residents' rhythms and preferences as the basis of the daily work plans and being able to do 'the little extra' for residents. Also, working in a person-centred way meant meeting shared goals by working towards a collective practice in collaborative teams. As a whole, the staffs' lived experiences of working in a person-centred way in nursing homes was interpreted to mean thriving at work as a psychological state in which individuals experience both a sense of vitality and learning. Conclusions: Working in a person-centred way means staff thriving at work in nursing homes. The results further indicate that delivering care by only focusing on routines and practical tasks and not on residents' preferences and well-being would inhibit thriving among nursing staff, leading to the potential for dissatisfaction with work. [ABSTRACT FROM AUTHOR]