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.

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.

"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.

"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.

"We own the illness": a qualitative study of networks in two communities with mixed ethnicity in Northern Norway.

BACKGROUND: When people in Northern Norway get ill, they often use traditional medicine. The global aim of this study was to examine the extended family networks' function and responsibility in cases of illness in the family, in two Northern Norwegian communities with a population of mixed ethnicity. METHODS: Semi-structured individual interviews with 13 participants and 4 focus group interviews with total 11 participants were conducted. The text data was transcribed verbatim and analysed based on the criteria for content analysis. RESULTS: The participants grew up in areas where it was common to seek help from traditional healers. They were organized in networks and shared responsibility for the patient and they provided practical help and support for the family. According to the networks, health-care personnel should make room for the entire network to visit the patient in severe and life-threatening situations. CONCLUSION: Traditional networks are an extra resource for people in these communities. The networks seem to be essential in handling and disseminating hope and manageability on an individual as well as a collective level. Health personnel working in communities with mixed ethnicity should have thorough knowledge of the mixed culture, including the importance of traditional network to the patients.

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.

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.

"There are more things in heaven and earth!" How knowledge about traditional healing affects clinical practice: interviews with conventional health personnel.

People with Sami and Norwegian background are frequent users of traditional folk medicine (TM). Traditional healing, such as religious prayers of healing (reading) and the laying on of hands, are examples of commonly used modalities. The global aim of this study is to examine whether health personnel's knowledge, attitudes and experiences of traditional healing affect their clinical practice. Semi-structured individual interviews (n=32) and focus group interviews (n=2) were conducted among health personnel in two communities in Northern Norway. The text data was transcribed verbatim and analysed based on the criteria for content analysis. Six themes were identified. The participants had acquired their knowledge of traditional healing through their childhood, adolescence and experience as health personnel in the communities. They all expressed that they were positive to the patients' use of traditional healing. They justified their attitudes, stating that "there are more things in heaven and earth" and they had faith in the placebo effects of traditional healing. The health personnel respected their patients' faith and many facilitated the use of traditional healing. In some cases, they also applied traditional healing tools if the patients asked them to do so. The health personnel were positive and open-minded towards traditional healing. They considered reading as a tool that could help the patients to handle illness in a good way. Health personnel were willing to perform traditional healing and include traditional tools in their professional toolkit, even though these tools were not documented as evidence-based treatment. In this way they could offer their patients integrated health services which were tailored to the patients' treatment philosophy.

Yoik experiences and possible positive health outcomes: an explorative pilot study.

BACKGROUND: Yoik is an old vocal music tradition of Sami, the indigenous people inhabiting Northern Fennoscandia and Kola peninsula in Russia. Studies of music therapy (MT) and especially singing have documented improvements in social and overall functioning in people with severe mental disorders and positive effect on depressive symptoms and sleep quality. Possible connections between yoik and health are so far underexplored. OBJECTIVES: The overall aim of this study was to explore whether yoik may have the potential to positively influence people's health and well-being. The research questions were: 1. What are different persons' experiences with yoik? 2. Can yoik experiences be related to health outcomes? METHODS: Explorative, qualitative interviews with 13 participants were conducted in the Norwegian counties Finnmark, Troms, Nordland, and Trøndelag. FINDINGS: The findings suggest qualities in yoik that are comparable to positive effects of Music Therapy (MT) in general. Yoik may contribute to emotion management, i.e. processing negative emotions and inducing positive ones in people acknowledging yoik as something positive. CONCLUSION: Yoik may be considered an important marker of social and cultural belonging for many Sami people. Yoik seems to have an underresearched potential as an intervention in culture sensitive healthcare and health promotion work that deserves to be further investigated.

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.

"My cancer is not my deepest concern": life course disruption influencing patient pathways and health care needs among persons living with colorectal cancer.

BACKGROUND: The concept of "patient pathways" in cancer care is most commonly understood as clinical pathways, operationalized as standardized packages of health care based on guidelines for the condition in question. In this understanding, patient pathways do not address multimorbidity or patient experiences and preferences. This study explored patient pathways understood as the individual and cultural life course, which includes both life and health events. The overall aim was to contribute to supportive and targeted cancer care. MATERIALS AND METHODS: Nine Norwegian patients recently diagnosed with rectal cancer Tumor-Node-Metastasis stage I-III participated in qualitative interviews, five times over 1 year. Five patients later participated in a workshop where they made illustrations of and discussed patient pathways. RESULTS: Patient pathways including both health and life events were illustrated and described as complex and circular. Stress, anxiety, and depression caused by life events had significant disruptive effects and influenced patient-defined health care needs. The participants experienced the Norwegian public health service as focused on hospital-based standardized cancer care. They expressed unmet health care needs in terms of emotional and practical support in their everyday life with cancer, and some turned to complementary and alternative medicine. CONCLUSION: This study suggests that acknowledging life course disruption before cancer diagnosis may have significant relevance for understanding complex patient pathways and individual health care needs. Approaching patient pathways as individual and socially constructed may contribute important knowledge to support targeted cancer care.

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.

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.

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.

From the conventional to the alternative: exploring patients' pathways of cancer treatment and care.

BACKGROUND: Complementary and alternative medicine (CAM) use is widespread and on the increase among cancer patients. Most research to date has involved a cross-sectional snapshot of CAM use rather than an exploration into the longitudinal, nonlinear treatment trajectories that cancer patients develop. Our aim is to explore and describe different treatment and decision-making pathways that individuals develop after receipt of a diagnosis of either breast, colorectal, or prostate cancer. METHODS: The study was part of a larger mixed-methods pilot project to explore the feasibility of conducting a five-year international study to assess cancer patients' treatment pathways, including health care use and the perceived impact of different patterns of use on health outcomes over the course of one year. The results presented in this paper are based on the analysis of personal interviews that were conducted over the course of 12 months with 30 participants. RESULTS: Five pathways emerged from the data: passive conventional, self-directed conventional, cautious integrative, aggressive integrative, and aggressive alternative. Factors that shaped each pathway included health beliefs, decision-making role, illness characteristics, and the patient-practitioner relationship. CONCLUSIONS: The results of this examination of the longitudinal treatment and decision-making trajectory provide important information to support health care professionals in their quest for individualized, targeted support at each stage of the patient pathway.

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.