User involvement in adolescents' mental healthcare: a systematic review.

More than one out of ten adolescents suffer from mental illness at any given time. Still, there is limited knowledge about their involvement in mental healthcare. Adolescents have the right to be involved in decisions affecting their healthcare, but limited research focuses on their engagement and decision-making. Therefore, this systematic review aims to explore the existing experiences with, the effectiveness of, and safety issues associated with user involvement for adolescents' mental healthcare at the individual and organizational level. A systematic literature review on user involvement in adolescents' mental healthcare was carried out. A protocol pre-determined the eligibility criteria and search strategies, and established guidelines were used for data extraction, critical appraisal, and reporting of results. Quantitative studies were analysed individually due to heterogeneity of the studies, while qualitative studies were analysed using thematic synthesis. A total of 31 studies were included in the review. The experiences with user involvement were reported in 24 studies with three themes at the individual level: unilateral clinician control versus collaborative relationship, capacity and support for active involvement, the right to be involved; and two themes at the organizational level: involvement outcomes relevant to adolescents' needs, conditions for optimal involvement. The effectiveness of user involvement was reported in seven studies documenting fragmented evidence related to different support structures to facilitate adolescents' involvement. The safety associated with user involvement was not reported in any studies, yet a few examples related to potential risks associated with involvement of adolescents in decision-making and as consultants were mentioned.

Medical pluralism in the aftermath of cancer: health seeking actions and cancer patients' shaping of trajectories to healing.

Improved treatment methods for cancer are increasing the number of survivals in Norway. In turn, the group of people struggling with late effects after the treatment is growing. Late effects could be physical, psychological or existential conditions caused by treatment or the experience of illness. This qualitative study explores health-seeking actions among nine Norwegian people with cancer, and how they shape their trajectories to healing. Various health-seeking actions were identified through content analysis, and categorized as conventional, CAM, self-care, religious coping and traditional healing. Medical pluralism particularly flourished in the aftermath of cancer. We found that the phenomenon is characterized by: 1) implementation of contradicting models of reality and making pragmatic choices, 2) continuity and change of health seeking actions, 3) medical pluralism as a process, and 4) increased use of CAM and self-care to improve health and well-being in situations where the conventional care system has few available treatment options. To support people with long-term conditions, we need to know how they choose and make sense of their health-seeking activities. We argue that trajectories to healing are dynamic and shaped by people making choices. This process could be understood in greater depth by applying the concept of medical landscapes.

"Then I went to a hospital abroad": acknowledging implications of stakeholders' differing risk understandings related to use of complementary and alternative medicine in European health care contexts.

BACKGROUND: Complementary and alternative medicine (CAM) is a rather novel issue within public healthcare and health policy-making. CAM use in Europe is widespread, patient-initiated, and patient-evaluated, and the regulation across countries has been evaluated as disharmonized. CAM users are left in an uncertain position, and patient safety may be threatened. How "risk" is understood by individuals in health policy-making and clinical encounters involving the use of CAM has not yet been much debated. The aim of this article is to explore and discuss the existence and possible consequences of differing risk understandings among stakeholders maneuvering in the complex landscape of CAM practice and CAM regulation contextualized by European public healthcare systems. METHODS: Qualitative data were derived from two studies on CAM in European healthcare contexts. Findings from the EU project CAMbrella on legislation and regulation of CAM were mixed with data from an interview study exploring risk understandings, communication, and decision-making among Scandinavian CAM users and their doctors. In a secondary content analysis, we constructed the case Sara as a typology to demonstrate important findings with regard to risk understandings and patient safety involving European citizens' use of CAM in differing contexts. RESULTS: By combining and comparing individual and structural perspectives on risk and CAM use, we revealed underexplored gaps in risk understandings among individuals involved in European CAM regulation and legislation, and between CAM users and their medical doctors. This may cause health risks and uncertainties associated with CAM use and regulation. It may also negatively influence doctor-CAM user communication and CAM users' trust in and use of public healthcare. CONCLUSION: Acknowledging implications of stakeholders' differing risk understandings related to CAM use and regulation may positively influence patient safety in European healthcare. Definitions of the concept of risk should include the factors uncertainty and subjectivity to grasp the full picture of possible risks associated with the use of CAM. To transform the findings of this study into practical settings, we introduce sets of questions relevant to operationalize the important question "What is risk?" in health policy-making, clinical encounters and risk research involving European patients' use of CAM.

Which risk understandings can be derived from the current disharmonized regulation of complementary and alternative medicine in Europe?

BACKGROUND: Many European citizens are seeking complementary and alternative medicine (CAM). These treatments are regulated very differently in the EU/EFTA countries. This may demonstrate differences in how risk associated with the use of CAM is perceived. Since most CAM treatments are practiced fairly similarly across Europe, differing risk understandings may influence patient safety for European CAM users. The overall aim of this article is thus to contribute to an overview and awareness of possible differing risk understandings in the field of CAM at a policymaking/structural level in Europe. METHODS: The study is a re-analysis of data collected in the CAMbrella EU FP7 document and interview study on the regulation of CAM in 39 European countries. The 12 CAM modalities included in the CAMbrella study were ranked with regard to assumed risk potential depending on the number of countries limiting its practice to regulated professions. The 39 countries were ranked according to how many of the included CAM modalities they limit to be practiced by regulated professions. RESULTS: Twelve of 39 countries generally understand the included CAM treatments to represent "high risk", 20 countries "low risk", while the remaining 7 countries understand CAM treatments as carrying "very little or no risk". The CAM modalities seen as carrying a risk high enough to warrant professional regulation in the highest number of countries are chiropractic, acupuncture, massage, homeopathy and osteopathy. The countries understanding most of the CAM modalities in the study as potentially high-risk treatments are with two exceptions (Portugal and Belgium) all concentrated in the southeastern region of Europe. CONCLUSION: The variation in regulation of CAM may represent a substantial lack of common risk understandings between health policymakers in Europe. We think the discrepancies in regulation are to a considerable degree also based on factors unrelated to patient risk. We argue that it is important for patient safety that policy makers across Europe address this confusing situation. This could be done by applying the WHO patient safety definitions and EU's policy to facilitate access to "safe and high-quality healthcare", and regulate CAM accordingly.

Use of complementary and alternative medicine in patients with cancer or multiple sclerosis: possible public health implications.

BACKGROUND: The use of complementary and alternative medicine (CAM) among Scandinavian patients with cancer or multiple sclerosis (MS) may be perceived as closely connected to their experiences from conventional care and thus contextualized by Scandinavian public healthcare systems. This study aimed at providing more insight into such patients' widespread, complex, self-initiated and unregulated use of CAM, analysed from a public health perspective. METHODS: Twenty-nine qualitative in-depth interviews with 31 CAM users diagnosed with cancer or MS were conducted. Qualitative content analysis was used to interpret the data. RESULTS: The participants were 'active patients' because they initiated their use of CAM and wanted to take part in decision-making and contribute to positive health outcomes. They moved in and out of CAM and public healthcare contexts as 'boundary walkers'. Experience-based knowledge such as bodily experiences as well as scientific knowledge was perceived as relevant sources of knowledge in decision-making. CAM treatments were in general perceived as safe and conventional treatments as being potentially risky. CONCLUSION: Boundary walkers often challenge the understandings of illness behaviour, evidence and treatment traditionally incorporated in Scandinavian public healthcare systems. CAM may be perceived as a healthcare system that acknowledges experience-based knowledge and patient involvement in treatment processes. Patient-centeredness is an important goal in current European public health programmes, but is often not recognized by CAM users in clinical practice. Thus, studies of CAM users' healthcare needs and their strategies to meet them may provide crucial knowledge to future development of patient-centred public health and medical education programmes.

Reasons for continuing use of Complementary and Alternative Medicine (CAM) in students: a consumer commitment model.

BACKGROUND: Research on continued CAM use has been largely atheoretical and has not considered the broader range of psychological and behavioral factors that may be involved. The purpose of this study was to test a new conceptual model of commitment to CAM use that implicates utilitarian (trust in CAM) and symbolic (perceived fit with CAM) in psychological and behavioral dimensions of CAM commitment. METHODS: A student sample of CAM consumers, (N = 159) completed a survey about their CAM use, CAM-related values, intentions for future CAM use, CAM word-of-mouth behavior, and perceptions of being an ongoing CAM consumer. RESULTS: Analysis revealed that the utilitarian, symbolic, and CAM commitment variables were significantly related, with r's ranging from .54 to .73. A series hierarchical regression analyses controlling for relevant demographic variables found that the utilitarian and symbolic values uniquely accounted for significant and substantial proportion of the variance in each of the three CAM commitment indicators (R(2) from .37 to .57). CONCLUSIONS: The findings provide preliminary support for the new model that posits that CAM commitment is a multi-dimensional psychological state with behavioral indicators. Further research with large-scale samples and longitudinal designs is warranted to understand the potential value of the new model.

Perception of risk and communication among conventional and complementary health care providers involving cancer patients' use of complementary therapies: a literature review.

BACKGROUND: Communication between different health care providers (conventional and complementary) and cancer patients about their use of complementary therapies affects the health and safety of the patients. The aim of this study was to examine the qualitative research literature on the perception of and communication about the risk of complementary therapies between different health care providers and cancer patients. METHODS: Systematic searches in six medical databases covering literature from 2000 to 2015 were performed. The studies were accessed according to the level of evidence and summarized into different risk situations. Qualitative content analysis was used to analyze the text data, and the codes were defined before and during the data analysis. RESULTS: Twenty-nine papers were included in the primary analysis and five main themes were identified and discussed. The main risk situations identified were 1. Differences in treatment concepts and philosophical values among complementary and conventional health care providers. 2. Adverse effects from complementary products and herbs due to their contamination/toxicity and interactions with conventional cancer treatment. 3. Health care physicians and oncologists find it difficult to recommend many complementary modalities due to the lack of scientific evidence for their effect. 4. Lack of knowledge and information about complementary and conventional cancer treatments among different health care providers. CONCLUSION: The risk of consuming herbs and products containing high level of toxins is a considerable threat to patient safety (direct risk). At the same time, the lack of scientific evidence of effect for many complementary therapies and differences in treatment philosophy among complementary and conventional health care providers potentially hinder effective communication about these threats with mutual patients (indirect risk). As such, indirect risk may pose an additional risk to patients who want to combine complementary therapies with conventional treatment in cancer care. Health care providers who care for cancer patients should be aware of these risks.

Use of complementary and alternative medicine in patients with health complaints attributed to former dental amalgam fillings.

BACKGROUND: The dental filling material amalgam is generally well tolerated. However, a small proportion of dental patients experience health complaints which they attribute to amalgam. The symptom pattern is often similar to patients with medically unexplained physical symptoms (MUPS) and the health complaints may persist after amalgam removal. Among patients with MUPS, the use of complementary and alternative medicine (CAM) seems to be high. The aim of this survey was to describe the prevalence and range of CAM use among people with health complaints attributed to dental amalgam fillings in which the health problems persist after the removal of all amalgam fillings. Specific attention was paid to (1) self-reported effects of CAM, (2) differences in CAM use dependent on self-reported health, and (3) gender differences in self-reported CAM use. METHODS: A survey was distributed to all members of The Norwegian dental patient association (NDPA) (n = 999), the response rate was 36.4%. The anonymous questionnaire asked for socio-demographic data, health complaints related to former amalgam fillings, subjectively perceived health status, symptoms, and experience with therapeutic interventions, mostly from the spectrum of CAM. Only participants who had all their fillings removed, which was the vast majority, were analysed. RESULTS: A total of 88.9% of included respondents had used at least one CAM modality, with a higher proportion of men (95.7%) compared to women (86.2%, p = 0.015). The most frequently used therapies were dietary supplements, vitamins and minerals recommended by a therapist (used by 66.7%) followed by self-prescribed dietary supplements, vitamins and minerals (59.0%), homeopathy (54.0%), acupuncture (48.8%) and special diets (47.5%). Use of CAM was similar for participants reporting normal to good health compared to participants reporting poor health. For all but two CAM modalities, the self-reported treatment effect was better in the group reporting normal to good health compared to the group reporting poor health. CONCLUSIONS: CAM was widely used by participants in our study, a finding similar to findings from studies of MUPS patients. To date, health problems associated with the use of dental amalgam is not an accepted diagnosis in the healthcare system. Consequently, people suffering from such complaints experience a lack of adequate treatment and support within conventional health care, which might have contributed to the high number of CAM users in this study.

Youth blogging and serious illness.

In recent years, a growing number of young people who experience illness tend to blog about it. In this paper, we question whether and how illness blogs illustrate the intercommunicative aspect of blogging by bringing forth both the literary concept of the implied reader and the sociological concepts of empowerment and agency in the analysis. We argue that young people blogging about serious illness demonstrate the inherent intercommunicative potential of blogging. We also argue that youth blogging about serious illness may represent a fruitful strategy for ill young people to create meaning, stay front-stage in youth communities and build self-esteem and confidence out of chaos. Furthermore, we argue that these blogs may contribute rather unique experience-based knowledge and reflections about existential issues to other young blog readers, who may otherwise not get access to this aspect of life. Youth blogging about serious illness thereby reflects a patient group so far not very visible and through the genre youth stand out as more competent when it comes to illness and healthcare issues than what is often presumed.

Gender differences in prevalence and associations for use of CAM in a large population study.

BACKGROUND: Self-reported use of Complementary and Alternative Medicine (CAM) varies widely from 10% to 75% in the general populations worldwide. When limited to use of a CAM provider 2% to 49% reported use is found. CAM use is believed to be closely associated with socio demographic variables such as gender, age, education, income and health complaints. However, studies have only occasionally differentiated CAM use according to gender. Therefore, the aim of the study presented here is to describe the prevalence of CAM use on the background of gender and to describe the specific characteristics of male and female users in the total Tromsø 6 population. METHODS: A total of 12,982 men and women aged 30-87 in the municipality of Tromsø, Norway went through a health screening program and completed two self-administered questionnaires in 2007/2008. The questionnaires were developed specifically for the Tromsø study and included questions about life style and health issues in addition to socio demographic variables. RESULTS: A total of 33% of the participants reported use of any CAM within the last 12 months, women more often than men (42% and 24%, respectively). When limited to visits to a CAM provider, we found 17% use among women and 8% among men. The relationship between the demographic variables and being a CAM user differed significantly between men and women with regard to age, household income, and marital status. We did not find significant differences between men and women concerning education and self-reported health. CONCLUSIONS: Findings from this study suggest that the prevalence and associations for use of CAM differ between men and women concerning several socio demographic variables (age, education and household income). Neglect of women's health care needs in public health care may contribute to the fact that women to a higher degree than men turn to CAM and CAM products.

Doctor-patient communication and cancer patients' choice of alternative therapies as supplement or alternative to conventional care.

Cancer patients' use of complementary and alternative medicine (CAM) is widespread, despite the fact that clinical studies validating the efficacy of CAM remain sparse in the Nordic countries. The purpose of this study was to explore possible connections between cancer patients' communication experiences with doctors and the decision to use CAM as either supplement or alternative to conventional treatment (CT). The Regional Committee for Medical and Health Research Ethics and the Norwegian Data Inspectorate approved the study. From a group of 52 cancer patients with self-reported positive experiences from use of CAM, 13 were selected for qualitative interviews. Six used CAM as supplement, and seven as alternative to CT, periodically or permanently. Communication experiences with 46 doctors were described. The analysis revealed three connections between doctor-patient communication and patients' treatment decisions: (i) negative communication experiences because of the use of CAM; (ii) negative communication experiences resulted in the decision to use CAM, and in some cases to decline CT; and (iii) positive communication experiences led to the decision to use CAM as supplement, not alternative to CT. The patients, including the decliners of CT, wanted to discuss treatment decisions in well-functioning interpersonal processes with supportive doctors. In doctors' practices and education of doctors, a greater awareness of potential positive and negative outcomes of doctor-patient communication that concern CAM issues could be of importance. More research is needed to safeguard CAM users' treatment decisions and their relationship to conventional health care.

The Red flag! risk assessment among medical homeopaths in Norway: a qualitative study.

BACKGROUND: Homeopathy is widely used, and many European physicians practice homeopathy in addition to conventional medicine. Adverse effects in homeopathy are not expected by homeopaths due to the negligible quantities of active substances in a remedy. However, we questioned if homeopathic aggravation, which is described as a temporary worsening of existing symptoms following a correct homeopathic remedy, should be regarded as adverse effects or ruled out as desirable events of the treatment. In order to improve knowledge in an unexplored area of patient safety, we explored how medical homeopath discriminate between homeopathic aggravations and adverse effects, and how they assessed patient safety in medical practice. METHOD: A qualitative approach was employed using focus group interviews. Two interviews with seven medical homeopaths were performed in Oslo, Norway. The participants practiced homeopathy besides conventional medicine. Qualitative content analysis was used to analyze the text data. The codes were defined before and during the data analysis. RESULTS: According to the medical homeopaths, a feeling of well-being may be a criterion to distinguish homeopathic aggravations from adverse effects. There was disagreement among the participants whether or not homeopathic treatment produced adverse effects. However, they agreed when an incorrect remedy was administrated, it may create a disruption or suppressive reaction in the patient. This was not perceived as adverse effects but a possibility to prescribe a new remedy as new symptoms emerge. This study revealed several advantages for the patients as the medical homeopaths looked for dangerous symptoms which may enhance safety. The patient was given time and space, which enabled the practitioner to see the complete picture. A more comprehensive toolkit gave the medical homeopaths a feeling of professionalism. CONCLUSION: This explorative study investigated how Medical Homeopaths understood and assessed risk in their clinical practice. A feeling of well-being emerging soon after taking the remedy was the most important criterion for discriminating between Homeopathic Aggravations and Adverse Effects in clinical practice. The Medical Homeopaths used the view of both professions and always looked for red flag situations in the consultation room. They combined knowledge from two treatment systems which may have advantages for the patient. These tentative results deserve further research efforts to improve patient safety among users of homeopathy. For further research we find it important to improve and develop concepts that are unique to homeopathy in order to validate and modernize this medical practice.

Modes of embodiment in breast cancer patients using complementary and alternative medicine.

Breast cancer patients are frequent users of complementary and alternative medicine (CAM). They often have complex reasons for, and experiences from, their use of CAM. Bodily experiences are important and almost unexplored elements in CAM use. Our aim was to explore the meaning and importance of bodily experiences among breast cancer patients who were using CAM as a supplement or an alternative to conventional treatment (CT). Our findings based on qualitative interviews with 13 women suggest that bodily experiences were particularly important when positioned outside conventional health care prior to medical diagnosis and as users of CAM as alternative to CT. We introduce three central modes of embodiment related to CAM use: the right to one's body, the body used as a gauge, and the body used as a guide. Patients' positioning between treatment systems should be further explored from a bodily perspective to safeguard and optimize their treatment choices.

Patient pathways as social drama: a qualitative study of cancer trajectories from the patient's perspective.

PURPOSE: The number of persons living with and beyond cancer is increasing. Such persons often have complex needs that last, and change, over time. The aim of this study is to get insights of lived experience of person diagnosed with colorectal cancer and to create an understanding of cancer trajectories as a dynamic process. This study thus explores Victor Turner's model of social drama in a cancer care context. METHOD: Turner suggests that crisis is a dynamic process structured by four phases: 1) breach of norm 2) crisis 3) redressive actions 4) reintegration or schism. The research team employed content analysis to explore material gathered through a series of qualitative interviews with nine Norwegian cancer patients over a period of one year. RESULTS: To the authors' knowledge, Turner's model has not earlier been applied to such materials. The results show that Turner's model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. CONCLUSIONS: The model of social drama may contribute to a deeper understanding of the processes patients are going through in long-term illness trajectories, demonstrating that illness is not a static matter.

Epistemological challenges in contemporary Western healthcare systems exemplified by people's widespread use of complementary and alternative medicine.

Modern Western public healthcare systems offer predominantly publicly subsidized healthcare traditionally based on biomedicine as the most important basis to cure persons who suffer from disorders of somatic or psychiatric nature. To which extent this epistemological position is suitable for this purpose is under scientific debate and challenged by some people's personal understandings of health and illness, their individual illness experiences and their decision-making. Current studies show decreasing levels of patient trust in Western public healthcare and a widespread patient-initiated use of complementary and alternative medicine which is often linked to unmet patient-defined healthcare needs. Patients'/complementary and alternative medicine users' understandings of their afflictions are often based on elements of biomedical knowledge as well as embodied and experience-based knowledge. We believe this points to the need for a phenomenologically and socially based understanding of health and illness. In this article, we analyze challenges in contemporary healthcare systems, exemplified by people's widespread use of complementary and alternative medicine and based on three ways of understanding and relating to unhealth: disease (the biomedical perspective), illness (the phenomenological perspective), and sickness (the social perspective). In public healthcare systems aiming at involving patients in treatment processes, acknowledging the coexistence of differing epistemologies may be of great importance to define and reach goals of treatment and compliance.

"What matters to you?" A longitudinal qualitative study of Norwegian patients' perspectives on their pathways with colorectal cancer.

PURPOSE: Person-centred care (PCC) is a well-acknowledged goal throughout the western world both within the health care services sector and for the patients themselves. To be able to create a future health care system that includes improved PCC, we need more in-depth knowledge of what matters to patients, how "what matters" might change over time, and tentative descriptions of commonalities across patients' perspectives. The aim of this study is to contribute to this knowledge base. METHODS: We conducted a qualitative interview series over one year with nine Norwegian patients who were recently diagnosed with rectal cancer tumor-node-metastasis stage I-III. RESULTS: We found that: (1) patients have an initial focus on "biological goals" and conventional treatment; (2) pathways are unique and dynamic; (3) family and friends affected patient pathways positively with respect to meaningfulness and quality of life, but for some participants also negatively because there were heavy burdens of caretaking; (4) receiving help in the health care system depended on the patients' navigation skills; (5) pluralism in health-seeking behaviour was important in all patient pathways. CONCLUSION: Long lasting illness may be a dynamic and complex journey. These results represent some features of a pathway with cancer and are important because they contribute with knowledge about what matters most seen from the cancer patients' point of view.

"The prayer circles in the air": a qualitative study about traditional healer profiles and practice in Northern Norway.

In Northern Norway, traditional healing has been preserved by passing down the knowledge through generations. Religious prayers of healing (reading) and Sami rituals (curing) are examples of methods that are used. We have examined traditional healers' understanding of traditional healing, the healing process and their own practice, as well as what characteristics healers should have. Semi-structured individual interviews and focus group interviews were conducted among 15 traditional healers in two coastal Sami municipalities in Norway. The traditional healers understood traditional healing as the initiation of the patient's self-healing power. This power was initiated through healing rituals and explained as the power of God and placebo effect. During the healing ritual, the doctor's medical diagnoses, the patient's personal data and a prayer in the name of The Father, The Son and The Holy Spirit were used in combination with steel and elements from the nature. The traditional healers stated that they had to be trustworthy, calm and mentally strong. Healers who claimed that they had supernatural abilities (clairvoyant or warm hands) were regarded as extra powerful. According to the participants in this study, the healers must be trustworthy, calm and mentally strong. Moreover, these traditional healers drew on information from conventional medicine when performing their rituals.

Sami yoik, Sami history, Sami health: a narrative review.

Music as a possible health-promoting agent has attained increasing academic and scientific interest over the last decades. Nonetheless, possible connections between indigenous singing traditions and health beyond traditional ceremonial healing practices are still under-researched worldwide. The Sami, the indigenous people living in Northern Fennoscandia, have a distinct ancient vocal music tradition called "yoik" practiced from immemorial times. The Sami share a history of assimilation with many indigenous people. During this period of nearly 400 years, yoik alongside other cultural markers was under hard pressure and even banned at times. Compared to other indigenous people in the Arctic, Sami public health shows few significant unfavourable differences to the majority population. The potential role of yoik as a protective health and resilience factor within the Sami culture is the topic of this review. We suggest a two stage model for the health promoting effects of yoik through i) emotion regulation and stress relief on the level of the individual, and ii) as a socio-cultural resilience factors within the Sami population. This review is to be understood as theory-building review article striving for a scholarly review of the literature.