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1.  Does feeling respected influence return to work? Cross-sectional study on sick-listed patients’ experiences of encounters with social insurance office staff 
BMC Public Health  2013;13:268.
Background
Previous research shows that how patients perceive encounters with healthcare staff may affect their health and self-estimated ability to return to work. The aim of the present study was to explore long-term sick-listed patients’ encounters with social insurance office staff and the impact of these encounters on self-estimated ability to return to work.
Methods
A random sample of long-term sick-listed patients (n = 10,042) received a questionnaire containing questions about their experiences of positive and negative encounters and item lists specifying such experiences. Respondents were also asked whether the encounters made them feel respected or wronged and how they estimated the effect of these encounters on their ability to return to work. Statistical analysis was conducted using 95% confidence intervals (CI) for proportions, and attributable risk (AR) with 95% CI.
Results
The response rate was 58%. Encounter items strongly associated with feeling respected were, among others: listened to me, believed me, and answered my questions. Encounter items strongly associated with feeling wronged were, among others: did not believe me, doubted my condition, and questioned my motivation to work. Positive encounters facilitated patients’ self-estimated ability to return to work [26.9% (CI: 22.1-31.7)]. This effect was significantly increased if the patients also felt respected [49.3% (CI: 47.5-51.1)]. Negative encounters impeded self-estimated ability to return to work [29.1% (CI: 24.6-33.6)]; when also feeling wronged return to work was significantly further impeded [51.3% (CI: 47.1-55.5)].
Conclusions
Long-term sick-listed patients find that their self-reported ability to return to work is affected by positive and negative encounters with social insurance office staff. This effect is further enhanced by feeling respected or wronged, respectively.
doi:10.1186/1471-2458-13-268
PMCID: PMC3623723  PMID: 23522034
Encounters; Ethics; Long-term sickness absentees; Return to work; Social insurance office staff; Sweden
2.  De-tabooing dying control - a grounded theory study 
BMC Palliative Care  2013;12:13.
Background
Dying is inescapable yet remains a neglected issue in modern health care. The research question in this study was “what is going on in the field of dying today?” What emerged was to eventually present a grounded theory of control of dying focusing specifically on how people react in relation to issues about euthanasia and physician-assisted suicide (PAS).
Methods
Classic grounded theory was used to analyze interviews with 55 laypersons and health care professionals in North America and Europe, surveys on attitudes to PAS among physicians and the Swedish general public, and scientific literature, North American discussion forum websites, and news sites.
Results
Open awareness of the nature and timing of a patient’s death became common in health care during the 1960s in the Western world. Open dying awareness contexts can be seen as the start of a weakening of a taboo towards controlled dying called de-tabooing. The growth of the hospice movement and palliative care, but also the legalization of euthanasia and PAS in the Benelux countries, and PAS in Montana, Oregon and Washington further represents de-tabooing dying control. An attitude positioning between the taboo of dying control and a growing taboo against questioning patient autonomy and self-determination called de-paternalizing is another aspect of de-tabooing. When confronted with a taboo, people first react emotionally based on “gut feelings” - emotional positioning. This is followed by reasoning and label wrestling using euphemisms and dysphemisms - reflective positioning. Rarely is de-tabooing unconditional but enabled by stipulated positioning as in soft laws (palliative care guidelines) and hard laws (euthanasia/PAS legislation). From a global perspective three shapes of dying control emerge. First, suboptimal palliative care in closed awareness contexts seen in Asian, Islamic and Latin cultures, called closed dying. Second, palliative care and sedation therapy, but not euthanasia or PAS, is seen in Europe and North America, called open dying with reversible medical control. Third, palliative care, sedation therapy, and PAS or euthanasia occurs together in the Benelux countries, Oregon, Washington and Montana, called open dying with irreversible medical control.
Conclusions
De-tabooing dying control is an assumed secular process starting with open awareness contexts of dying half a century ago, and continuing with the growth of the palliative care movement and later euthanasia and PAS legislation.
doi:10.1186/1472-684X-12-13
PMCID: PMC3602181  PMID: 23496849
Taboo; Death; Dying; Euthanasia; Physician assisted suicide; Palliative care; Sedation therapy; Grounded theory
3.  The tip of an iceberg? A cross-sectional study of the general public's experiences of reporting healthcare complaints in Stockholm, Sweden 
BMJ Open  2012;2(1):e000489.
Objectives
To investigate the hypothesis that complaints of adverse events related to encounters with healthcare personnel are underreported and to identify barriers to filing such complaints.
Design
A cross-sectional study, where a questionnaire was sent to the respondents asking whether or not they have filed complaints of adverse events. Respondents were also asked whether they have had reasons for doing so but abstained, and if so their reasons for not complaining. The authors also asked about participants' general experience of and trust in healthcare.
Setting
The County of Stockholm, Sweden.
Participants
A random sample of 1500 individuals of the general population registered by the Swedish National Tax Board as living in the County of Stockholm in April 2008. Of the selected group, aged 18–99 years, 50% were women and 50% men. Response rate was 62.1%, of which 58% were women and 42% were men; the median age was 49 years.
Primary and secondary outcome measures
Primary outcome measures were whether the participants have filed a formal complaint with the Patients' Advisory Committee and whether they have had reason to file a complaint but have refrained from doing so. Secondary outcome measures were the participants' general experience of and trust in healthcare.
Results
Official complaints have been filed by 23 respondents (2.7%, 95% CI 1.7% to 3.7%), while 159 (18.5%, 95% CI 15.9% to 21.1%) stated that they have had legitimate reasons to file a complaint but have abstained (p<0.001). The degree of under-reporting was greater among patients with a general negative experience of healthcare (37.3%, 95% CI 31.9% to 42.7%) compared with those with a general positive experience (4.8%, 95% CI 2.4% to 7.2%). The reasons given for abstaining were, among others, ‘I did not have the strength’, ‘I did not know where to turn’ and ‘It makes no difference anyway’. Respondents with a general negative experience also had lower trust in healthcare.
Conclusions
The authors found a considerable discrepancy between the actual complaint rate and the number of respondents stating that they have had reasons to complain but have abstained. This indicates that in official reports of complaints, the authors only see ‘the tip of an iceberg’.
Article summary
Article focus
To test the hypothesis that patients' complaints about adverse events related to negative encounters in healthcare are under-reported.
To study barriers to filing complaints.
To investigate whether trust in and experiences of healthcare are related.
Key messages
Patient complaints about negative encounters are under-reported, disclosing only the tip of an iceberg.
The main barriers to complaints are that patients do not find the strength to make them, do not know where to turn or do not find it worthwhile since they do not believe it will make any difference.
Negative encounters seem to have a negative impact on the exposed patients' trust in healthcare.
Strengths and limitations of this study
The study reveals the barriers to complaining in a clear way, which enables healthcare personnel to work actively to provide a more supportive environment for the patients in case of adverse events.
The study sample was small and there was no time-limit regarding events respondents might consider and refer to, which means that our results cannot be compared with official complaint rates.
doi:10.1136/bmjopen-2011-000489
PMCID: PMC3269049  PMID: 22282539
4.  Hypothetical and factual willingness to participate in biobank research 
European Journal of Human Genetics  2010;18(11):1261-1264.
In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.
doi:10.1038/ejhg.2010.106
PMCID: PMC2987483  PMID: 20648060
biobanks; tissue banks; genetic databases; public attitudes; trust; public surveys
5.  Respectful encounters and return to work: empirical study of long-term sick-listed patients' experiences of Swedish healthcare 
BMJ Open  2011;1(2):e000246.
Aims
To study long-term sick-listed patients' self-estimated ability to return to work after experiences of healthcare encounters that made them feel either respected or wronged.
Methods
A cross-sectional and questionnaire-based survey was used to study a sample of long-term sick-listed patients (n=5802 respondents). The survey included questions about positive and negative encounters as well as reactions to these encounters, such as ‘feeling respected’ and ‘feeling wronged’. The questionnaire also included questions about the effects of these encounters on the patients' ability to return to work.
Results
Among patients who had experienced positive encounters, those who also felt respected (n=3327) demonstrated significantly improved self-estimated ability to return to work compared to those who did not feel respected (n=79) (62% (95% CI 60% to 64%) vs 34% (95% CI 28% to 40%)). Among patients with experiences of negative encounters, those who in addition felt wronged (n=993) claimed to be significantly more impeded from returning to work compared to those who did not feel wronged (n=410) (50% (95% CI 47% to 53%) vs 31% (95% CI 27% to 35%)).
Conclusions
The study indicates that positive encounters in healthcare combined with feeling respected significantly facilitate sickness absentees' self-estimated ability to return to work, while negative encounters combined with feeling wronged significantly impair it.
Article summary
Article focus
To what extent can positive and perceived respectful healthcare encounters influence long-term sick-listed patients' ability to return to work?
To what extent can negative and perceived unfair healthcare encounters influence long-term sick-listed patients' ability to return to work?
Key messages
Long-term sick-listed patients' self-estimated ability to return to work is significantly facilitated if healthcare encounters are perceived as respectful.
Long-term sick-listed patients' self-estimated ability to return to work is significantly impeded if healthcare encounters are perceived as unfair.
The net effect of feeling respected was highest among patients with somatic disorders, while the net effect of feeling wronged was highest among patients with psychiatric disorders.
Strengths and limitation of this study
The study sample was large and we obtained quite a high response rate.
The outcome measure was the respondents' self-estimated ability to return to work, not their actual ability.
The findings are based on the views of long-term sick-listed patients and so generalisation may not be possible.
doi:10.1136/bmjopen-2011-000246
PMCID: PMC3211048  PMID: 22021890
6.  Are enrollment sites the key to optimizing participation in genetic studies? 
Genome Medicine  2011;3(6):41.
In a time when the challenge of people being over-researched and experiencing research fatigue is increasingly discussed, low participation rates and potential sample biases are a growing concern in genetic research. In a recent study assessing factors relevant to successful recruitment of patients with myocardial infarction to a genetic study, enrollment site was identified as the most important factor associated with patient participation, whereas patient-level factors such as race, gender and education played a limited or no role. These results underline the importance of appropriate recruitment routines at enrollment sites in order to reach high levels of participation in genetic research.
See research article: http://genomemedicine.com/content/3/6/39
doi:10.1186/gm257
PMCID: PMC3218815  PMID: 21722348
Enrollment; ethics; genetic research; myocardial infarction
7.  European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion 
BMC Palliative Care  2010;9:20.
Background
The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care.
Discussion
We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why.
Conclusions
The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.
doi:10.1186/1472-684X-9-20
PMCID: PMC2945325  PMID: 20836861
8.  Patients’ refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study 
Objectives To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent.
Design Cross sectional study of register data.
Setting Biobanks used in Swedish health care, 2005-6.
Population Data on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties.
Main outcome measures Rates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent.
Results Patients refused consent to either storage or use of their samples in about 1 in 690 cases; about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19 000 withdrew their consent.
Conclusions Refusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and lack of consent to research is used as the default position. A system of presumed consent with straightforward opt out would correspond with people’s attitudes, as expressed in their actions, towards biobank research.
doi:10.1136/bmj.a345
PMCID: PMC2656925  PMID: 18617496

Results 1-8 (8)