Occupation as marker of self: Occupation in relation to self among people with advanced cancer.

BACKGROUND: Living with advanced cancer can have a profound impact on the person's self. A person's self is influenced by various aspects of daily life, including engagement in occupation. From an occupational perspective, little research has been done to explore how the self of people with advanced cancer is formed through their engagement in occupation. AIM: The purpose of this study was to explore how people with advanced cancer experience that their sense of self is formed through engagement in occupation. METHODS: A total of 28 interviews were conducted with 22 people with advanced cancer. Grounded theory guided the collection and analysis of data. RESULTS: 'Occupation as marker of self' was identified as the core category. Occupations served as markers of the participants' self (1) by mirroring their abilities and positioning of their self in the illness trajectory; and (2) as means of expressing their self. The core category provided explanations about how the participants' experiences of occupation influenced their self-perceptions, as explained in the sub-categories 'defining the self through occupation' and 'reassessing self and accepting limitations'. CONCLUSIONS: For people with advanced cancer, engagement in occupation influences their self as current abilities become apparent and positions of their self can be created and expressed.

Morality in clinical space: treatment of youngsters with functional somatic symptoms in a Western clinical context.

This paper explores the moral implications of treatment of young people with functional somatic symptoms. Based on an ethnographic field study at a Danish pain clinic for youngsters (age 8 to 18), the paper seeks to unearth the cultural, moral values that clinical practice steers by and upholds, and the implications this has for the assessment and management of ill body-selves. Through an exposition of the general practice of the clinic and an investigation of two specific cases of youngsters, it is found that the assessment of symptoms and selves and the goals of treatment are informed by cultural ideals of 'the good self' and 'the good life' in which agency and work ethic - both pertaining to the notion of individual responsibility - figure as prevalent virtues. The study underpins the findings of other researchers who have found that ideals of individual autonomy and responsibility for own life and health permeate the Western health care system and the discourses of ill individuals. The contribution of this article is to portray in ethnographic detail how such a cultural ethics manifests in practice and what implications this have for the treatment of young people with functional symptoms at a specific location and in specific cases. The two cases illustrate that the underlying norms and values can give rise to very different moral assessments of symptoms and selves within the same diagnostic category.

Mothers' informational needs when deciding to have their newborn infant vaccinated with BCG. A Mixed-methods design.

OBJECTIVE: To explore the informational needs of mothers with different levels of education in order to improve counselling about vaccination. METHODS: In the setting of a large vaccination trial, mothers' assessments and yield of written information in combination with telephone consultations were evaluated in a survey. Furthermore, searching strategies for additional information were investigated. Mothers' perspectives on informational needs were explored in focus group discussions. RESULTS: Out of 2025 mothers, 95% felt well-informed. Of the 4% not feeling well-informed, there were significantly more mothers with basic schooling and nontheoretical education. There was no correlation between searching for additional information and feeling well-informed. The telephone consultation was found to be very supportive for the decision. CONCLUSION: The written information was digestible over time. The telephone consultation ensured the mothers' understanding by tailoring and deriving meaning from the information to her special needs. Moreover, it helped the mothers gain an overview of risks and benefits and inspired confidence. These findings indicate that the telephone consultation improved health literacy. PRACTICE IMPLICATIONS: Individual counselling about vaccines is required in addition to information about side effects and accurate instructions on how to react upon them.

"Lay epidemiology": an important factor in Danish parents' decision of whether to allow their child to receive a BCG vaccination. A qualitative exploration of parental perspective.

BACKGROUND: Vaccination is used worldwide to prevent infectious diseases. However, vaccination programmes in western countries face challenges in sustaining high coverage rates. The aim of this study was to explore how parents in Denmark make a decision about whether to allow their child to receive a Bacille Calmette Guerin vaccine at birth for the purpose of achieving non-specific effects on the immune system. METHODS: A total of five focus groups were conducted with expectant mothers and fathers. Written information about the vaccine and information about the hypothesis of non-specific effects of the vaccine were delivered in order to discuss considerations and determinants of parents' decisions. RESULTS: Heritable factors and the possibility of stimulating the immune system of the child to achieve less atopic diseases and fewer infections were identified as arguments in favour of receiving the BCG vaccine. Arguments against receiving BCG mainly focused on concerns about its described and non-described side effects. Both arguments for and arguments against the vaccine were seen as parents attempt to make an individual risk evaluation for their child. Attitudes and beliefs in the local network were identified as important for parents' decisions. DISCUSSION: It is discussed how "lay epidemiology" characterizes parents' risk evaluation as an individual addition to the population-based risk declaration. It is furthermore discussed how health professionals should engage with both the empirical element and the value element of "Lay epidemiology". CONCLUSION: "Lay epidemiology" forms the basis for the parental decision of whether to allow their child to receive a BCG vaccination. Attitudes and beliefs about the causes and distribution of illnesses in the family or local network influence parents' risk evaluations. It would be ideal for parents if health professionals focused their communication about the BCG vaccine on individual risk evaluations.

Fathers' Needs and Masculinity Dilemmas in a Neonatal Intensive Care Unit in Denmark.

BACKGROUND: Most healthcare professionals in neonatal intensive care units typically focus on the infants and mothers; fathers often feel powerless and find it difficult to establish a father-child relationship. In family-centered healthcare settings, exploring fathers' experiences and needs is important because men's roles in society, especially as fathers, are changing. PURPOSE: To describe fathers' needs when their infants are admitted to a neonatal intensive care unit and to discuss these needs within a theoretical framework of masculinity to advance understanding and generate meaningful knowledge for clinical practices. METHODS: This qualitative study used participant observation, interviews, multiple sequential interviews, and a focus group discussion. Data were analyzed using grounded theory principles. RESULTS: Analysis of the fathers' needs generated 2 primary themes: (1) Fathers as caregivers and breadwinners and (2) fathers and emotions. Fathers wished to be involved and to take care of their infants but have to balance cultural and social norms and expectations of being breadwinners with their wishes to be equal coparents. IMPLICATIONS FOR PRACTICE/RESEARCH: Health professionals in neonatal intensive care units must be aware of fathers' need and desire to be equal coparents. Nurses should play a key role by, for example, showing that fathers are as important to their infants as are the mothers, helping them become involved in childcare, and ensuring that they are directly informed about their children's progress. Further research in other cultural settings would contribute to knowledge regarding fatherhood and the role of fathers in childcare.

Development of a Web-Based Health Care Intervention for Patients With Heart Disease: Lessons Learned From a Participatory Design Study.

BACKGROUND: The use of telemedicine technologies in health care has increased substantially, together with a growing interest in participatory design methods when developing telemedicine approaches. OBJECTIVE: We present lessons learned from a case study involving patients with heart disease and health care professionals in the development of a personalized Web-based health care intervention. METHODS: We used a participatory design approach inspired by the method for feasibility studies in software development. We collected qualitative data using multiple methods in 3 workshops and analyzed the data using thematic analysis. Participants were 7 patients with diagnosis of heart disease, 2 nurses, 1 physician, 2 systems architects, 3 moderators, and 3 observers. RESULTS: We present findings in 2 parts. (1) Outcomes of the participatory design process: users gave valuable feedback on ease of use of the platforms' tracking tools, platform design, terminology, and insights into patients' monitoring needs, information and communication technologies skills, and preferences for self-management tools. (2) Experiences from the participatory design process: patients and health care professionals contributed different perspectives, with the patients using an experience-based approach and the health care professionals using a more attitude-based approach. CONCLUSIONS: The essential lessons learned concern planning and organization of workshops, including the finding that patients engaged actively and willingly in a participatory design process, whereas it was more challenging to include and engage health care professionals.

Worldwide utilization of topical remedies in treatment of psoriasis: a systematic review.

OBJECTIVE: To review published literature describing the global use of topical antipsoriatics. MATERIALS AND METHODS: Search for English-language articles in Embase, Pubmed, PsycINFO and Cochrane Library. RESULTS: Fifty-four selected publications were found, describing psoriasis patients' use of topical antipsoriatics, using six different methods to collect data. The eight most frequently used topical treatments from the regions North/South America, North/Central/South Europe, Asia, Middle East and Australia were: corticosteroids used by 16-79%, complementary and alternative medicines used by 10-62%, phototherapies used by 0.4-75%, calcipotriol used by 4.2-73%, corticosteroid/calcipotriol combinations used by 3.3-71%, tar used by 0.8-66%, anthralin used by 15% and emollients used as monotherapy by 1-23%. Rates of patient-reported adherence to topical remedies ranged from 51% to 90% and rates of patient-reported satisfaction with topical as it pertains to symptom control ranged from 12% to 52%. CONCLUSION: The identified use patterns are varying and reflect a lack of data from large parts of the world and noncomparable studies using heterogeneous study designs. However, this study emphasizes the importance of medical professionals involvement of the patient with respect to choosing prescribed topical treatment and the possibility of patients' use of alternative treatments. More drug utilization studies, both survey and register based, from different parts of the world are needed to provide more conclusive evidence about patients' use of topical antipsoriatics.

Medical adherence to topical corticosteroid preparations prescribed for psoriasis: A systematic review.

OBJECTIVE: Topical corticosteroids and corticosteroid combinations are the principal treatments in psoriasis. The aim of this study was to investigate published literature dealing with medical adherence to topical corticosteroid or corticosteroid combinations in patients with psoriasis. MATERIALS AND METHODS: Systematic electronic searches in English language literature were done until September 2015 without publication date restriction. RESULTS: We identified 11 studies consisting of five surveys, two prospective studies, one qualitative study, one mixed-method study, one register study, and one interventional study. Observation periods varied and rates of nonadherence ranged from 8% to 88.3%. The rates were reported by patients on eight nonvalidated scales and one validated scale, measured by medication weight in two studies, and in two studies rates of nonadherence were measured using prescription registers. Thirty-four multifactorial determinants of nonadherence were found. One designed intervention consisted of a disease management program, which improved adherence in the study period. Overall, the studies included were heterogeneous in design and had a high risk of bias. CONCLUSION: To improve health outcome in topical treatment of psoriasis, further studies should be conducted addressing determinants of nonadherence and test interventions to improve adherence. Validated measurements of medical nonadherence, prescription registers, or medication-weight are needed.

Everyday burden of musculoskeletal conditions among villagers in rural Botswana: A focused ethnography.

OBJECTIVE: To examine the perspectives of villagers in rural Botswana about the everyday life burden and impact of their musculoskeletal disorders. METHODS: Ethnographic fieldwork for 8 months included 55 in-depth interviews with 34 villagers. Interviews were typically conducted in Setswana with an interpreter. Audio recordings were transcribed verbatim, with Setswana contextually translated into English. The theoretical lens included Bury's biographical disruption, in which he distinguishes between "meaning as consequence" and "meaning as significance". RESULTS: Interviews revealed co-existing accounts for the consequences and significance of musculoskeletal burden related to 3 themes: (i) hard work for traditional lives; (ii) bearing the load of a rugged landscape; and, (iii) caring for others with disrupted lives. Physical labour with musculoskeletal symptoms had economic and subsistence consequences. The loss of independence and social identity to fulfil traditional roles held meaning as significance. Outmigration for wage labour and other shifts in family structure compounded everyday musculoskeletal burden. CONCLUSION: Uncovering burden is an important first step to address musculoskeletal care needs in developing country settings. Community-engaged partnerships are needed to develop rehabilitation programmes to ease the burden of musculoskeletal disorders in rural Botswana.

Participatory Action Research in the Field of Neonatal Intensive Care: Developing an Intervention to Meet the Fathers' Needs. A Case Study.

BACKGROUND: In neonatal intensive care units (NICUs) health care professionals typically give most of their attention to the infants and the mothers while many fathers feel uncertain and have an unmet need for support and guidance. This paper describes and discusses participatory action research (PAR) as a method to improve NICUs' service for fathers. Our goal is to develop a father-friendly NICU where both the needs of fathers and mothers are met using an approach based on PAR that involves fathers, mothers, interdisciplinary healthcare professionals, and managers. DESIGN AND METHODS: This PAR process was carried out from August 2011 to July 2013 and included participant observations, semi-structured interviews, multi sequential interviews, workshops, focus groups, group discussion, and a seminar. The theoretical framework of validity described by Herr and Anderson's three criteria; process-, democratic-, and catalytic validity were used to discuss this PAR. RESULTS: Twelve fathers, 11 mothers, 48 health professionals and managers participated in the PAR process. The collaboration ensured the engagement for viable and constructive local changes to be used in designing the concept of the father friendly NICU. CONCLUSIONS: This paper contributed new knowledge of how PAR can be used to ensure that participants engaged in the field are involved in the entire process; consequently, this will ensure that the changes are feasible and sustainable.

Barriers to communication between HIV care providers (HCPs) and women living with HIV about child bearing: A qualitative study.

OBJECTIVES: In the context of HIV clinical care, open discussion regarding sexual health and reproductive plans has become increasingly relevant. The aim of this paper is to explore barriers to communication between providers and women living with HIV regarding childbearing. METHODS: In-depth interviews (IDIs) were conducted with 48 HIV infected women receiving ART at 7 different HIV clinics providing comprehensive HIV care services in four districts in Uganda, between July and August 2012. All women were aware of their HIV diagnosis prior to pregnancy or had given birth while living with HIV. RESULTS: Four themes emerged describing barriers to communication, from the HIV-positive women's point of view: (i) provider indifference or opposition to childbearing post HIV diagnosis, (ii) anticipation of negative response from provider, (iii) provider's emphasis on 'scientific' facts, (iv) 'accidental pregnancy'. CONCLUSION: Existing evidence regarding effective provider-patient communication should be considered for its application for reproductive counseling among HIV infected women. PRACTICE IMPLICATIONS: These data demonstrate the need for current counseling guidelines to explore approaches that encourage open, non-judgmental, non-directive discussions with HIV positive individuals around their reproductive desires and intentions in a health care setting.

Psoriasis patients' experiences concerning medical adherence to treatment with topical corticosteroids.

Nonadherence to topical treatment of psoriasis is a common cause of treatment failure. This focus group study was conducted to obtain the patients' own experiences and explanations regarding medical adherence. The participants consisted of eight primary adherent patients with moderate psoriasis treated with corticosteroid or corticosteroid-calcipotriol combinations, purposefully sampled by age and sex at a dermatology outpatient clinic. Secondary medical adherence was supported by accessibility of the prescribing physician, the prescriber taking time to listen, having a more manageable disease, using a nonstaining product, and establishing routines around treatment at home. Secondary medical adherence was affected negatively by changes in daily routines, if the treatment influenced the patient's sexual life, having too little time in the consultation room, lack of confidence in the prescriber, diverging information from health care personnel, experiencing side effects, having fear of side effects, impractical formulations of topical products, and impatience regarding time before an effect of the treatment was observed. From this study, the recommendations for the prescribing doctor to improve medical adherence are, the doctor needs to take time to listen to the patient, prescribe a topical product that is easy to apply and less greasy, inform the patients about benefits from treatments, and explain the rationale behind the treatment plan.

Botlhoko, botlhoko! How people talk about their musculoskeletal complaints in rural Botswana: a focused ethnography.

BACKGROUND: Conflicting interpretations about the structure and function of the body contribute to discordance in communication between healthcare professionals and lay people. Understanding musculoskeletal (MSK) complaints presents additional complexities when discussed in more than one language or in cross-cultural settings. In low- and middle-income countries (LMICs), few healthcare professionals have specialist MSK training and not all practitioners speak the primary language of patients. OBJECTIVE: Our goal was to understand how people in rural Botswana perceive and express MSK complaints. DESIGN: Ethnographic fieldwork for 8 months in the Botswana Central District included participant observations and interviews with 34 community members with MSK complaints. Audio-recorded interviews were typically conducted in Setswana with an interpreter, transcribed verbatim, and contextually translated into English. Abductive qualitative analysis was used as the interpretive methodology. RESULTS: Whereas initial responses about MSK troubles yielded the exclamation botlhoko, botlhoko! combined with animated non-verbal gestures and facial expressions indicating widespread body pains, in-depth interviews revealed the complexities of pain expression among respondents. MSK pains were described as 'bursting, exploding, aching, numbness, hot, pricking, stabbing, swollen, and pain in the heart'. Language subtleties manifested during interviews, where 'meat' or 'flesh' implied soft tissue pains; waist pains were voiced yet portrayed as low back or sacroiliac pain; and 'veins' variously referred to structural and functional types of pain. Psychological and social stressors accompanied many accounts of MSK troubles. CONCLUSIONS: Respondents offered diverse MSK symptom descriptions consistent with biopsychosocial illness models, yet few communicated complaints using the biomedical language of healthcare providers. Although research interview and transcription processes may not be practical for clinicians, working with interpreters who communicate detailed patient accounts for MSK troubles will complement patient-provider encounters. Community member perceptions of their MSK pain and associated conditions should be explored and incorporated into healthcare interventions and innovations for rural communities in LMICs.

How can we assess the burden of muscle, bone and joint conditions in rural Botswana: context and methods for the MuBoJo focused ethnography.

BACKGROUND: Musculoskeletal diseases are the most common causes of long-term pain and disability worldwide and a growing international public health concern. However, the everyday burden and impact of musculoskeletal conditions are not well understood, especially among people living in low- and middle-income countries in Africa. Since 2011, World Spine Care, a nongovernmental organisation, has collaborated with the Botswana Ministry of Health to open spine care centres and to conduct research. The broad aim of the Muscle, Bone and Joint (MuBoJo) research project is to examine the sociocultural, organisational and clinical characteristics for the burden of living with and caring for people living with musculoskeletal conditions in rural Botswana. In this paper, we describe the community context, theoretical framework, and research methods to address the project aim with a qualitative study. METHODS/DESIGN: This focused ethnography is based on eight months (November 2011, April 2013, October 2013-March 2014) of fieldwork in Botswana. The project was theoretically informed by the concepts of explanatory models of illness, social suffering, and biographical disruption. Data collection included fieldnotes, non-participant and participant observations, and informal and in-depth interviews with villagers and healthcare providers. Villager interviews were typically conducted in Setswana with an interpreter. Audio recordings were transcribed verbatim in the language spoken with Setswana contextually translated into English. Computer software supported qualitative data management. Analysis is ongoing using constant comparison and a template organising style to facilitate pattern-finding and reveal insights for the burden and care of musculoskeletal conditions. DISCUSSION: Findings from the MuBoJo Project will document the context of musculoskeletal burden, illness beliefs, self-care behaviours, and healthcare options in a Botswana rural village. These data will inform ongoing efforts to establish spine care clinics for underserved populations in low-middle income countries and sustain these healthcare services through local providers and volunteer health professionals. This study also will generate new knowledge about the burden and impact of muscle, bone and joint disorders for cross-cultural comparisons and patient-centred interventions. CONCLUSIONS: Our systematic and transparent methodology to conduct musculoskeletal research in more than one language and in a cross-cultural setting may be useful for investigators and NGO healthcare personnel.

The use of complementary and alternative medicine after the completion of hospital treatment for colorectal cancer: findings from a questionnaire study in Denmark.

BACKGROUND: Little is known about the use of complementary and alternative medicine (CAM) for colorectal cancer, despite the high incidence of colorectal cancer and the frequency of CAM use for cancer-related symptoms. This is the first Danish study to examine the use of CAM by individuals who completed hospital treatment for colorectal cancer. METHODS: In 2011-12, a pragmatic trial on energy healing as rehabilitation after colorectal cancer was conducted in Denmark with participants who had completed cancer-related hospital treatment within the past 18 months prior to study inclusion. As part of the trial, participants (n = 247) completed a questionnaire on the use, motivations, pathways and perceived benefits of CAM. Socio-demographic information was obtained via the Danish National Patient Registry and self-report. Descriptive statistics were generated, using SPSS, version 18, and logistic regression analysis was carried out. RESULTS: Of 247 individuals, 49.4% used some form of CAM in the past month. Nearly half of the CAM users (49.2%) used natural medicines and/or dietary supplements only; 32% consulted an alternative therapist; 18.9% used both. Those who consulted alternative therapists were most commonly women (OR: 3.36; p = .002; CI: 1.54-7.33) with high educational levels (OR: 2.77; p = 0.010; CI: 1.28-6.01); more women than men used natural medicines and/or dietary supplements (OR: 1.83; p = .047; CI: 1.01-3.30) independent of educational levels. A majority commenced CAM on their own initiative; CAM was predominantly used to achieve better physical wellbeing. Beneficial effects were reported particularly in relation to physical health; few harmful effects were reported. Of those using CAM, 51.5% did not disclose its use to their physician; 8.5% of participants reported to have been asked by their physician about CAM use. CONCLUSION: The use of CAM following completion of hospital treatment for colorectal cancer seems widespread in Denmark. The identified extensive CAM use suggests a need for more reliable and diverse information about CAM for both patients and biomedical providers, and improved communication about its use in the clinical context.

Effectiveness of energy healing on Quality of Life: a pragmatic intervention trial in colorectal cancer patients.

PURPOSE: Our aim was to explore the effectiveness of energy healing, a commonly used complementary and alternative therapy, on well-being in cancer patients while assessing the possible influence on the results of participating in a randomized controlled trial. METHODS: 247 patients treated for colorectal cancer (response rate: 31.5%) were either (a) randomized to healing (RH) or control (RC) or (b) had self selected the healing (SH) or control condition (SC), and completed questionnaires assessing well-being (QoL, depressive symptoms, mood, and sleep quality), attitude toward complementary and alternative medicine (CAM), and faith/spirituality at baseline, 1 week, and 2 months post-intervention. They also indicated, at baseline, whether they considered QoL, depressive symptoms, mood, and sleep quality as important outcomes to them. RESULTS: Multilevel linear models revealed no overall effect of healing on QoL (p = 0.156), depressive symptoms (p = 0.063), mood (p = 0.079), or sleep quality (p = 0.346) in the intervention groups (RH, SH) compared with control (SC). Effects of healing on mood were only found for patients who had a positive attitude toward CAM and considered the outcome in question as important (SH: Regression coefficient: -8.78; SE: 2.64; CI: -13.96 to -3.61; p = 0.001, and RH: Regression coefficient -7.45; SE: 2.76; CI: -12.86 to -2.04; p = 0.007). CONCLUSION: Whereas it is generally assumed that CAMs such as healing have beneficial effects on well-being, our results indicated no overall effectiveness of energy healing on QoL, depressive symptoms, mood, and sleep quality in colorectal cancer patients. Effectiveness of healing on well-being was, however, related to factors such as self-selection and a positive attitude toward the treatment.

[A research roadmap for complementary and alternative medicine - what we need to know by 2020].

BACKGROUND: The CAMbrella coordination action was funded within the Framework Programme 7. Its aim is to provide a research roadmap for clinical and epidemiological research for complementary and alternative medicine (CAM) that is appropriate for the health needs of European citizens and acceptable to their national research institutes and healthcare providers in both public and private sectors. One major issue in the European research agenda is the demographic change and its impact on health care. Our vision for 2020 is that there is an evidence base that enables European citizens to make informed decisions about CAM, both positive and negative. This roadmap proposes a strategic research agenda for the field of CAM designed to address future European health care challenges. This roadmap is based on the results of CAMbrella's several work packages, literature reviews and expert discussions including a consensus meeting. METHODS: We first conducted a systematic literature review on key issues in clinical and epidemiological research in CAM to identify the general concepts, methods and the strengths and weaknesses of current CAM research. These findings were discussed in a workshop (Castellaro, Italy, September 7­9th 2011) with international CAM experts and strategic and methodological recommendations were defined in order to improve the rigor and relevance of CAM research. These recommendations provide the basis for the research roadmap, which was subsequently discussed in a consensus conference (Järna, Sweden, May 9­11th 2012) with all CAMbrella members and the CAMbrella advisory board. The roadmap was revised after this discussion in CAMbrella Work Package (WP) 7 and finally approved by CAMbrella's scientific steering committee on September 26th 2012. RESULTS: Our main findings show that CAM is very heterogenous in terms of definitions and legal regulations between the European countries. In addition, citizens' needs and attitudes towards CAM as well as the use and provision of CAM differ significantly between countries. In terms of research methodology, there was consensus that CAM researchers should make use of all the commonly accepted scientific research methods and employ those with utmost diligence combined in a mixed methods framework. CONCLUSIONS: We propose 6 core areas of research that should be investigated to achieve a robust knowledge base and to allow stakeholders to make informed decisions. These are: Research into the prevalence of CAM in Europe: Reviews show that we do not know enough about the circumstances in which CAM is used by Europeans. To enable a common European strategic approach, a clear picture of current use is of the utmost importance. Research into differences regarding citizens' attitudes and needs towards CAM: Citizens are the driver for CAM utilization. Their needs and views on CAM are a key priority, and their interests must be investigated and addressed in future CAM research. Research into safety of CAM: Safety is a key issue for European citizens. CAM is considered safe, but reliable data is scarce although urgently needed in order to assess the risk and cost-benefit ratio of CAM. Research into the comparative effectiveness of CAM: Everybody needs to know in what situation CAM is a reasonable choice. Therefore, we recommend a clear emphasis on concurrent evaluation of the overall effectiveness of CAM as an additional or alternative treatment strategy in real-world settings. Research into effects of context and meaning: The impact of effects of context and meaning on the outcome of CAM treatments must be investigated; it is likely that they are significant. Research into different models of CAM health care integration: There are different models of CAM being integrated into conventional medicine throughout Europe, each with their respective strengths and limitations. These models should be described and concurrently evaluated; innovative models of CAM provision in health care systems should be one focus for CAM research. We also propose a methodological framework for CAM research. We consider that a framework of mixed methodological approaches is likely to yield the most useful information. In this model, all available research strategies including comparative effectiveness research utilising quantitative and qualitative methods should be considered to enable us to secure the greatest density of knowledge possible. Stakeholders, such as citizens, patients and providers, should be involved in every stage of developing the specific and relevant research questions, study design and the assurance of real-world relevance for the research. Furthermore, structural and sufficient financial support for research into CAM is needed to strengthen CAM research capacity if we wish to understand why it remains so popular within the EU. In order to consider employing CAM as part of the solution to the health care, health creation and self-care challenges we face by 2020, it is vital to obtain a robust picture of CAM use and reliable information about its cost, safety and effectiveness in real-world settings. We need to consider the availability, accessibility and affordability of CAM. We need to engage in research excellence and utilise comparative effectiveness approaches and mixed methods to obtain this data. Our recommendations are both strategic and methodological. They are presented for the consideration of researchers and funders while being designed to answer the important and implicit questions posed by EU citizens currently using CAM in apparently increasing numbers. We propose that the EU actively supports an EU-wide strategic approach that facilitates the development of CAM research. This could be achieved in the first instance through funding a European CAM coordinating research office dedicated to foster systematic communication between EU governments, public, charitable and industry funders as well as researchers, citizens and other stakeholders. The aim of this office would be to coordinate research strategy developments and research funding opportunities, as well as to document and disseminate international research activities in this field. With the aim to develop sustainability as second step, a European Centre for CAM should be established that takes over the monitoring and further development of a coordinated research strategy for CAM, as well as it should have funds that can be awarded to foster high quality and robust independent research with a focus on citizens health needs and pan-European collaboration. We wish to establish a solid funding for CAM research to adequately inform health care and health creation decision-making throughout the EU. This centre would ensure that our vision of a common, strategic and scientifically rigorous approach to CAM research becomes our legacy and Europe's reality. We are confident that our recommendations will serve these essential goals for EU citizens.

High prevalence but limited evidence in complementary and alternative medicine: guidelines for future research.

The use of complementary and alternative Medicine (CAM) has increased over the past two decades in Europe. Nonetheless, research investigating the evidence to support its use remains limited. The CAMbrella project funded by the European Commission aimed to develop a strategic research agenda starting by systematically evaluating the state of CAM in the EU. CAMbrella involved 9 work packages covering issues such as the definition of CAM; its legal status, provision and use in the EU; and a synthesis of international research perspectives. Based on the work package reports, we developed a strategic and methodologically robust research roadmap based on expert workshops, a systematic Delphi-based process and a final consensus conference. The CAMbrella project suggests six core areas for research to examine the potential contribution of CAM to the health care challenges faced by the EU. These areas include evaluating the prevalence of CAM use in Europe; the EU cititzens' needs and attitudes regarding CAM; the safety of CAM; the comparative effectiveness of CAM; the effects of meaning and context on CAM outcomes; and different models for integrating CAM into existing health care systems. CAM research should use methods generally accepted in the evaluation of health services, including comparative effectiveness studies and mixed-methods designs. A research strategy is urgently needed, ideally led by a European CAM coordinating research office dedicated to fostering systematic communication between EU governments, the public, charitable and industry funders, researchers and other stakeholders. A European Centre for CAM should also be established to monitor and further a coordinated research strategy with sufficient funds to commission and promote high quality, independent research focusing on the public's health needs and pan-European collaboration. There is a disparity between highly prevalent use of CAM in Europe and solid knowledge about it. A strategic approach on CAM research should be established to investigate the identified gaps of knowledge and to address upcoming health care challenges.

Challenges in end-of-life decisions in the intensive care unit: an ethical perspective.

When making end-of-life decisions in intensive care units (ICUs), different staff groups have different roles in the decision-making process and may not always assess the situation in the same way. The aim of this study was to examine the challenges Danish nurses, intensivists, and primary physicians experience with end-of-life decisions in ICUs and how these challenges affect the decision-making process. Interviews with nurses, intensivists, and primary physicians were conducted, and data is discussed from an ethical perspective. All three groups found that the main challenges were associated with interdisciplinary collaboration and future perspectives for the patient. Most of these challenges were connected with ethical issues. The challenges included different assessments of treatment potential, changes and postponements of withholding and withdrawing therapy orders, how and when to identify patients' wishes, and suffering caused by the treatment. To improve end-of-life decision-making in the ICU, these challenges need to be addressed by interdisciplinary teams.

Explanatory models of depression and treatment adherence to antidepressant medication: a qualitative interview study.

BACKGROUND: Adherence to antidepressant medication is a challenging clinical issue, which reduces treatment efficacy: 30-60% of all patients commencing treatment with antidepressants are estimated to stop taking the medication within the first 12 weeks. Patients' personal beliefs about depression and antidepressants are regarded as central influences on adherence. OBJECTIVES: The aim was to gain detailed insight into patients' personal accounts of depression and use of antidepressant medication and to relate these accounts to the patients' self-reported level of adherence. METHODS: In-depth, qualitative interviews of 16 depressed patients one, four, eight and twelve months after hospital discharge supplemented by diagnostic interviews and self-report measures. Kleinman's notion of "explanatory model" was used as the theoretical perspective on the patients' illness narratives. Interview transcripts were analysed thematically with "explanatory models" as the starting point. RESULTS: Patients had ambiguous experiences of depression and antidepressants. Patients explained their illness and the medical treatment in experience-near terms. Explanations of the reasons for depression were psychosocial and biology and medicine were not central. However, taking antidepressant medication was a meaningful part of being admitted to hospital, and the adoption of the rhetoric and practices of biomedicine strengthened patients' sense of control and hope for recovery. If medicine was ineffective, the explanatory models legitimised alternative strategies towards recovery, including non-adherence. CONCLUSIONS: The patients' reasons for adhering to antidepressants included a range of diverse psychosocial issues, and could be regarded as a central part of their common sense illness management.