A critical review of the Family Affluence Scale (FAS) concluded that FAS II was no longer discriminatory within very rich or very poor countries, where a very high or a very low proportion of children were categorised as high FAS or low FAS respectively . The review concluded that a new version of FAS - FAS III - should be developed to take into account current trends in family consumption patterns across the European region, the US and Canada. In 2012, the FAS Development and Validation Study was conducted in eight countries - Denmark, Greenland, Italy, Norway, Poland, Romania, Slovakia and Scotland. This paper describes the Scottish qualitative findings from this study. The Scottish qualitative fieldwork comprising cognitive interviews and focus groups sampled from 11, 13 and 15 year-old participants from 18 of the most- and least- economically deprived schools. These qualitative results were used to inform the final FAS III recommendations. In the WHO European region there are gross social and economic inequalities within and between countries. Health inequity accompanies these inequalities  within a population still in full-time education and without occupational status; the socioeconomic status of parents is usually used as an indicator of adolescent SES. However, within survey collections cross-nationally, adolescent reporting of parental SES measures suffers from high rates of missingness  Study originally developed a Family Affluence Scale (FAS) in 1998 to measure material affluence, a proxy for socioeconomic status measured by more traditional means of parental occupation or education , comprising items that reflect market forces, economic trends, technological advances, as well as cultural, social and geographical norms in consumption across Europe and North America. To achieve geographic and socioeconomic diversity, albeit mainly within the developed economies, eight countries were selected to participate in this study: Denmark, Greenland, Italy, Norway, Poland, Romania, Scotland and Slovakia. The validation study sought to test a list of new candidate items for FAS III, and to check that items comprising FAS III enable segmentation of populations in these economically different countries. FAS III was required to provide a highly flexible way to compare absolute and relative inequalities between groups of children, both within and between countries. The ultimate aim was to develop a new version of FAS, FAS III, that would be relevant for the measurement of material affluence among young people across Europe and North America in 2012.Specifically, the aim of this paper is threefold. First, to present the research methods of the FAS III Validation Study; second, to present detailed qualitative findings from one country, Scotland, that took part in the study; and third, to detail the findings from qualitative work in Scotland, which, in tandem with the FASIII DVS qualitative data from the other countries and the quantitative data (reported elsewhere), will inform this latest version of FAS (FAS III).a school-based pupil survey which tested new items of family affluence;a school-based test-retest survey on a subset of the original pupil sample;a parent survey on a subset of the pupil sample;cognitive interviews with individual pupils who were surveyed;focus group discussions with pupils who were surveyed on their perceptions of family affluence and wealth.A mixed-method design was developed, combining qualitative and quantitative data. The design had the following core components:qualitative data from Scotland: that is to say, the data generated from “4” and “5” above. A sub-sample of children was invited to participate in qualitative work to explore cultural differences, as well as issues of comprehension, item relevance, ethics and the sensitivity of the candidate FAS items. The protocol recommended ten cognitive interviews and ten focus groups per country. The Scottish data were collected in the autumn of 2012. This involved visiting 18 schools and sampling from the most- and the least-economically deprived schools, and from ages 11, 13 and 15 years ; holidays/activities ; material possessions ; family life . In order to facilitate full participation and to protect participants’ privacy, a range of ‘activity sheets’ were designed. Each pupil was encouraged to respond to questions on the sheets without recourse to others in the group. A discussion then followed centred around the answers given.All focus groups lasted between 30 and 50 min. The focus groups were carried out in a flexible way to respond to particular group dynamics and/or to the time available. The focus group exercise aimed to (a) determine young people’s understanding of potential items/question wording, and age-group differences in understanding, (b) highlight sensitive questions or items, and (c) reveal bias in response by SES, gender and/or geography. The key themes for every focus group were: Individual cognitive interviews were held with one participant from each school class. These participants completed the same questionnaire as their classmates, but, whilst doing so, were asked to tell the researcher what they were thinking when they answered each of the questions. Participants were prompted with questions such as, ‘Why did you pick that answer?’ or ‘Can you explain more about your decision?’ This was a valuable technique that generated useful data. Due to both the number of items under examination and time constraints, some of the items were assessed by interview only. These were generally more objective items , although in some cases interviews were a preferred method to gain a more in-depth understanding of the pupils’ response to the item .The qualitative analysis was carried out in order to assess ways in which participants interpret and understand the items, investigating in particular the sensitivity and suitability of items.refined items. C25ownbed. Do you have a bed of your own? was clearly understood, and every participant reported having their own bed, therefore it would not differentiate affluence and so is not recommended, although it may have discriminatory power in developing countries. The item C32owncomp. Do you have your own computer? was generally well-understood, but it generated two common participant queries. The first was: did it ‘count’ if the computer was shared with a sibling or parent; and the second was did it ‘count’ if it was broken? This latter might be an especially relevant consideration during times of economic recession. Overall there was not enough detail from the data to judge whether this item was a valid indicator of family affluence from a qualitative perspective.To repeat, we are dealing here with only the qualitative analysis for Scotland, and we shall consider first the ‘refined’ items, and thereafter the ‘new’ items. Take the C26holhome. Does your family have a holiday (vacation) house/apartment? was discussed in cognitive interviews. The main matter of interpretation was what constituted ‘family’, and whether that included family holiday homes owned by extended family such as grandparents, aunties and uncles; and, related to this, whether or not visiting extended family in their main home counted as having a family holiday home. The second refined holiday-related item was C21abroad. How many times did you travel abroad for holiday/vacation last year? It was generally well-understood. There were, however, four matters arising from it. First, there was confusion over whether going to England counted as ‘abroad’. Second, often participants answered the question based on all of their holiday experiences, not just those from the last year. Third, sometimes participants described family holidays as accompanying their parents on a work-related trip to another country. Fourth, this item has the potential to be sensitive for those who have not been away on holiday. Overall, this item did appear to capture the difference in family affluence, but, given these considerations, it was decided that this should be re-worded as, ‘How many times did you and your family travel out of (name of country) for a holiday/vacation last year?’There were two refined items which referred to holidays. The first new items are now considered. With respect to item NewC20: NEW C20welloff: children were asked to imagine that the ladder pictured shows how Scottish/Danish/etc. society is made up. At the top of the ladder are the people who are the best off. They have ‘the most money, the highest amount of schooling and the jobs that bring the most respect’. At the bottom of the ladder are the people who are the worst off. They have ‘little or no education’, ‘no job’, or ‘jobs that make little money’. Children were then asked to ‘think about your family. Please tell us where you think your family would be on this ladder. Fill in the circle that best represents where your family would be on this ladder ’. This item generated a range of responses. The first was the matter of relative status. When the participant is answering the question, we cannot know what their reference group is: that is, their community; those whom they see on television; their friends at school. The qualitative data made it clear that the participants referred to a variety of groups, and for this reason the subjective perception of wealth is not comparable to objective measures of actual wealth. Take Beth (Sch6IIGirlP7LowDeprivation), for example: her estimation of her family wealth was: ‘And we’re not, like, poor, but we have enough money, but we don’t have, like, millions of pounds.’ Her father had a ‘good’ job and her mother was a trainee teacher. She wavered between a ‘seven’ and an ‘eight’ rating on the scale.The Sch8IIBoyP7HighDeprivation) was asked whom he included when he rated his family, he opted for his extended family because he felt that their jobs would increase his family’s score. His rating was a ‘seven’. For Matthew, his family comprised his mother (a nurse), his grandfather (who had a breakdown recovery business), his father (a farmer), his uncle Barry (who designed sheds), his auntie Jacqui (who was a holiday-let house-keeper), and his auntie Julia and uncle Peter (who worked in a carpentry business). Matthew thought his father’s occupation would keep the rating at a ‘six’, but by including his uncle Barry it would rise to a ‘seven’ because not only did he design sheds, he had ‘quite a big house as well’, and ‘he’s quite rich’ [Laughter]. Matthew’s mother, a nurse, also attracted a ‘seven’.The item also highlighted the conceptual complexity of the construct ‘family’: is it their nuclear family; their extended family; or, if their parents are separated, which family is being rated? The qualitative data showed that participants often selected that segment of their family whom they considered to be the ‘best off’. For example, when Matthew (Sch13IIBoyS4HighDeprivation) compared his family to those wherein there was drug addiction:I’d say zero were drug addicts and that. People that all they do is try to get money to get their fix. Then, when you go up, it’s just less fortunate people. I’d say I was eight because nobody in my family are drug addicts; we’ve all just got what we need. There’s no family rows with other families.This item is also a sensitive one, and raises ethical issues. Especially for the younger participants, the impression they often gave was that this was the first time they had been asked to consider ‘rating’ their family. The FAS validation process in general was extremely sensitive for those who were most deprived, but this item in particular forced a consideration of a comparison which hitherto they might not have made. Even so, the power of relativity appeared to work at times as a buffer, even for the most deprived participants. Ryan ? This item was discussed both in the cognitive interviews and in the focus-group discussions. Four issues emerged. The first was that participants tended not to focus on the ‘affording’ part of the question. Take Jake’s (Sch11IIBoyP7HighDeprivation) responses:I: And how many times in the last month have you not been able to afford to do something you wanted to?Jake: I’d, probably, just say once.I: Okay, can you think of what it was?Jake: It was going to this Climbing Centre. It’s, you get, you pay two pound for the shoes, and then you pay, like, 20 pound just to get a card for a couple of hours.I: Yeah.Jake: Yeah, but, like, the card’s for the whole day, so, it’s good.I: Okay, okay.Jake: But we normally end up going at night, because my dad works, and then he tries to get away.I: Okay, but this time in the last month it was a time that you didn’t have the money for it?Jake: No, I went with my dad but not my friends.We turn here to item Here, therefore, is an example of a response which had more to do with a non-financial reason.Sch6IIGirlP7LowDeprivation) was reluctant to ask her mother for money for certain things because she knew her mother could not afford it, even though her mother would not admit it. Beth explained: ‘Well, but, usually, mum doesn’t say I can’t afford it. She says, ’I don’t really want to go there, because it’s too babyish’, or something. […] Well, she doesn’t say it’s too babyish she just says, ‘No, I don’t think so, because we should do this’. ‘And I’m, like, okay, right, I’ll do this.’ The third issue was that this item did not address the family’s daily financial status. Often participants would cite the things they could not afford, such as a private jet, a tropical holiday, or other expensive leisure pursuits, rather than day-to-day things that would give a more accurate reflection of the family’s daily financial status. Other participants found it difficult to imagine real things they could not have. The final matter arising from this item was an ethical one. This is a potentially sensitive item for those who have experienced not being able to afford something, as Ryan’s (Sch13IIBoyS4HighDeprivation) comments suggest. Ryan stated that he had been unable to afford things in the last month, but then added the slightly defensive caveat that he could have afforded them, but that he ‘just never had it at the time’, which implies that he felt the need to justify his inability to afford things.Secondly—and still with the ambiguity which attached to the concept of ‘being able to afford’ something—there were a few occasions when participants assumed they would not be allowed to go, possibly because of monetary restrictions, and for that reason they did not even ask their parents; they had an awareness of the financial constraints within which their parents lived. Beth  was discussed in cognitive interviews. It was a generally well-understood item, with no apparent comprehension, ethical or sensitivity concerns. But there is a proviso. An ‘outdoor space’ could range from the two-acre garden of a large mansion to a communal garden at the bottom of a high-rise apartment block. This definitional imprecision would warrant clarification for it to be included in the FAS III main study.The next new item NewC27dishwash. At home do you have the following: Dishwasher?, NewC27dryer. At home do you have the following: Tumble dryer?, NewC27washer. At home do you have the following: Washing machine? were unproblematic and therefore could be recommended as items to be considered for FASIII. NewC28internet. Do you have Internet access at home? was also generally unproblematic, bar the fact that all participants appeared to have internet access; therefore this item would not discriminate between groups. Similarly, NewC33bathroom. How many bathrooms (room with a bath or shower) are in your home? generated no concerns. As for NewC34ipod. Do you have an iPod or other personal music player?, it prompted three matters. The first is the use of the wording ‘iPod’: does it mean only an Apple brand of mp3 player, or should this be re-worded as ‘mp3 player or other personal music player’? The second issue is that these categories of technology very quickly become obsolete. Already the smartphone has, in many cases, replaced the iPod, and this too will be replaced by new technology. The third issue is a methodological issue. Many participants queried whether or not the item was asking specifically about their own ownership, or did it ‘count’ if there was an iPod or other personal music player that they shared with a sibling or parent? This item, therefore, is not recommended. Although it could be updated with different wording, the matters of technological obsolescence and ownership would remain problematic.New items C27,28, 33 and 34 were all considered in the cognitive interviews and can be dealt with briefly; C29 and 31 require further consideration. Briefly, NewC29paywork. Do your parents pay people to do work in your home ? This item was discussed both in the cognitive interviews and in the focus group discussions. A number of concerns emerged, the first of which was that some participants did not take the item ‘seriously’, presumably because they thought that having paid help in the home seemed like such a fanciful and unlikely notion. A focus-group discussion with some girls (Sch11FGGirlsP7HighDeprivation) drew a distinction between realistic paid help, such as caring for an elderly relative, or having windows cleaned, and the somewhat unrealistic presence of a ‘maid’, a ‘butler’, a ‘bouncer’ or a ‘chauffeur’. The intended meaning in the item is that paying people to work in the home is on-going, not a one-off event, but participants cited ad hoc work, such as a builder coming to fix the roof, or someone to landscape the garden. The inference to be drawn from these responses is that the item does not indicate the family’s affluence. And, for some participants, like Ross (Sch8FGMixedP7HighDeprivation), paid work included doing chores in exchange for pocket money: ‘Mum and Dad pay for me and my brother to wash the dishes; we get a tenner a month’. Finally, there is an ethical consideration: it was apparent that having paid home help was a social-class signifier. For example, in one focus group, upon learning to her surprise that her ‘best friend’ Ruth had a cleaner and a babysitter at home, Jenny (Sch3FGGirlsS2HighDeprivation) said in ‘jest’ that she did not want to be friends with her anymore. An interpretation of this exchange is that Jenny became aware of a hitherto hidden social-status signifier which she felt separated her from Ruth as it implied a different state of affluence. The item did appear to be a valid socio-economic discriminator, but could be refined along the lines of ‘Do your parents pay people from outside the family to work at your home on a regular  basis?’Unlike the foregoing items C27,28, 33 and 34, items NewC29 and NewC31 merit further consideration. Take NewC31clothes: Do you wear clothes that belonged to others before you (second-hand clothes) or share clothes with your siblings? generated a range of issues in the cognitive interviews and the focus-group discussions. To be sure, this item seemed to stir the emotions, attracting a variety of very lively responses, even somewhat risque hilarity and teasing. The weight of opinion seemed to show a preference for shared rather than second-hand clothes, especially within a family. Ruth (Sch3FGGirlsS2HighDeprivation), for example, stated: ‘I just think of sharing clothes with my mum, because I’ve just kind of reached the same sort of size as her, so usually share clothes with my mum for things.’ But another girl from the same focus group, Anna, pointed out that siblings sometimes were disinclined to share their clothes. As for sharing clothes with school friends, the opinion was mixed. Scott (Sch6FGMxdP7LowDeprivation) stated that ‘when someone comes round to my house or we go out to play football and they come back and you get really muddy and they didn’t bring a spare change of clothes, I’ll give them some of my clothes.’ But then, to the amusement of the others, he wavered: ‘I don’t really know…because they’re my clothes and my privacy and I don’t want any person’s germs’, a view echoed by Jimmy (Sch13FGBoysS4HighDeprivation) who thought the wearing of a friend’s clothes felt ‘weird’ and ‘sweaty’. The girls were less disinclined either to share clothes, or to have second-hand clothes, provided they were ‘cool’ and ‘vintage’. On balance, this item may have benefited from having discrete sub-categories for swapping, choosing to share, having to share, and wearing second-hand clothes by choice? However, because ‘second-hand clothing’ was not separate from ‘shared clothing’ in the questionnaire it cannot be recommended as a new FAS item.Like item NewC29, item Based on the foregoing analysis of the qualitative data, Table The FAS must take account of the economic, technological and social changes which are afoot, and be refined accordingly. The qualitative study reported here has been part of that endeavour. The purpose here has been to refine the HBSC Family Affluence Scale (FAS), a measure of material affluence which can be administered to young people who are not in a paid occupation. The scale does not rely upon the need for accurate information about parental education and occupation. The findings reported here relate only to the Scottish data. Comparable qualitative studies were also conducted in each of the other countries participating in the FAS III DVS - Denmark, Greenland, Italy, Norway, Poland, Romania and Slovakia. A recurring theme has been to be mindful of constructs which no longer are as fixed in their meaning as they used to be; that of ‘family’ is an example. The study here has attempted to gain some understanding of how these young participants are influenced by their own lived experiences when they responded to items in the survey, and to try to discern the meanings which they intended by their responses. By refining the wording in some items, or even rejecting items, the recommendations list in Table


The World Health Organization (2002) considers that a balance between government, community, and individual action is necessary for health education and promotion, recognizing that non-governmental organizations, local groups, and community institutions are central in this process. This argument reinforces the idea that individuals should be empowered and encouraged to make use of accurate health-related information. This paper highlights the potential of a socio-political perspective for the development of health literacy within children and adolescents and presents two studies conducted in two daily life contexts: a community organization and a school. Both studies are based on methodological pluralism and collaborative research approaches and explore the promotion of health knowledge in formal and informal settings. Study 1 is based on a mixed methodology, using focus group discussions and questionnaires with children and youth with chronic diseases to explore the perceived impact of their participation in support associations. Study 2 presents four intensive case-studies in schools where adolescents used community profiling, a participatory research methodology, to explore health rights and access to healthcare in both a historical and prospective vision. The results enable a deeper understanding on how powerful tool ccommunity resources can be for individual and collective empowerment on health issues. During the last decades, the concept of primary health care has made significant progress throughout the world: today people have an inalienable right to health and health care without prejudice with regard to gender, age, religion, ethnic grouping, social class, material circumstances, political affiliation, or sexual orientation . The conIn parallel to these statements of access to health as a human right, the scope of the conception of health has also expanded to reflect a range of factors , 8. The In recent decades, a number of authors have recognized that traditional scientific approaches are not the only possibilities for social research and scientific knowledge production –24. PartTogether with this trend toward pluralism in methods, there has also been support for the use of collaborative research , 27–29, The potential of such as approach to the promotion of public health literacy and health education lies in the fact that collaborative perspectives promote the co-production of participant knowledge within the research itself , 28, 31.In this paper, we will present two different studies carried out in 2010 and 2012 with Portuguese children and youth in two daily life contexts: a community organization and a school. Both studies share a socio-political and ecological perspective on health and disease, and use methodological pluralism and collaborative research to explore the experience of living with a chronic disease and the development of public health literacy. In our view, ecologically based research and the use of participatory approaches can contribute significantly to health research projects  and it iA chronic disease is a “disease of long duration and generally slow progression” most often associated to non-communicable diseases . SymptomThe main goal of this study is to understand how these community organizations contribute to the lives of children and adolescents with chronic diseases, considering the acquisition and improvement of health literacy and the promotion of the well-being and empowerment. Support associations are conceived as non-formal health education contexts, where children and adolescents can acquire relevant information regarding their own health condition, share strategies to cope with the disease and with the physical and attitudinal barriers they face in their daily life, and develop a critical consciousness regarding their health rights and their role as citizens in a community. The study uses a mixed-methodology design with an emphasis on collaborative approach toward participants.This study is part of wider research on the role of support associations in the promotion of the well-being of children and young people with chronic diseases  and their families. Assuming that methodological pluralism may allow for a more comprehensive and complex understanding  of this mellitus) in their life contexts and, on the other hand, their perceptions of the benefits of involvement in support associations. In this paper, we will refer to two focus group discussions: one with three children (two boys and one girl), with diabetes, aged between 8 and 12, with and without involvement in support associations; another with three members and leaders of support associations, all of them boys with diabetes, aged between 19 and 24 years old. Even if the number of participants was smaller than typical focus groups, the interactive nature of the discussion was fully accomplished certainly due to the participants’ engagement with the topic. The focus group occurred in contexts familiar to the participants . In all cases, confidentiality and anonymity were assured, and the participation of children was approved by their parents. As Miller and Shinn (mellitus) and, on the other hand, explored an active involvement of children and young people in the discussion of their life and health conditions. The data analysis was based on content analysis , and took about 20 min to complete. The questionnaire included several scales adapted from other instruments; all items were scored on five points Likert-type scales, from 1 (strongly disagree) to 5 (strongly agree) or from 1 (not frequently) to 5 (very frequently). Data analysis was performed using the Statistical Package for the Social Sciences (SPSS), version 18, and Analysis of Moment Structures (AMOS) software. Confirmatory factorial analysis was conducted in order to test the dimensionality of the questionnaire and the adjustment of the data to the theoretical models. The scales include the following dimensions: (a) Well-being  adapted from the European Social Survey (2(8) = 10.03, p < 0.262; CFI = 0.96; RMSEA = 0.037] adapted from the WHO Quality of Life-BREF (WHOQOL-BREF) (2(9) = 18.93, p < 0.026; CFI = 0.97; RMSEA = 0.077] adapted from WHOQOL-BREF, OMS, 2004 and the Quality of Life Index (2(8) = 9.44, p < 0.276; CFI = 0.99; RMSEA = 0.035] adapted from the International Classification of Functioning, Disability and Health (ICF) (2(32) = 48.88, p < 0.029; CFI = 0.94; RMSEA = 0.053] a scale constructed for this study    and QualOL-BREF)  (“I needfe Index  (“The hoth (ICF)  (“I haveis study  includinmy friends don’t know.“Ted (11 years) – … – Mine think it’s cool when I’m pricking my finger.John (12 years) – When I present myself to a new friend in class I generally say I’m diabetic.Maria (8 years) not me … when I know a friend I wait he’ll be a real friend and then I say I have diabetes.Ted – – [when they ask me anything about diabetes] it’s a sign they are interested in meeting me.John No, we don’t talk about it [diabetes].”Ted – Results from the focus groups show that children appear to be cautious in managing their relationship with their peers when it comes to sharing their health condition – the dichotomy between the visibility and invisibility of a chronic disease, in this case diabetes, suggests that these children rethink strategies for fostering integration into groups. Their dialog reinforces how powerful this invisibility might be and peers’ indifference for their social inclusion, as well as the pressure to “be equal” to other children:the problem is not so much the people who are around you, but our tendency to give them a wrong idea.“Peter – We shouldn’t be seen as poor or miserable people!Sam – – We might not be equal to our friends but we can do everything they do.”Adam (24 years) Similarly, young members and leaders of support associations recognize that some families are “afraid of the social stigma” , and support associations can help people gain more autonomy and power through self-knowledge. As Sam (20 years) said “knowledge is power, so the best way to be different is to know the tricks you can do [referring to take the advantage of pricking the finger in several ways]”. They all agreed that sometimes:Therefore, they seem to assume that their rights are ensured if their specific needs were taken into consideration , making Finally, the role of associations clearly depends on the age and experience of participants. Even if children are not very familiar with support associations, two of them already participated in leisure events they view as important because “it helps people live with diabetes, and thus relax” (Maria). Informal networking was also emphasized by Peter who considered participation fostered “the motivation and consequent sociability of people with chronic illness” and by Sam who considered “the emotional balance and sharing of experiences” was instrumental for adaptation and well-being. But associations can also facilitate access to privileged knowledge about therapeutic innovations and “the update for existing therapies” (Adam) thus promoting the health literacy of young people with chronic diseases.F = 5.833, p < 0.001] reveal significant differences with advantages for the young participants in terms of satisfaction with health  and self  and hetero-centered  behavioral empowerment; there are no significant differences for well-being, satisfaction with life contexts and school integration. Thus associative involvement seems to have a significant impact on relevant dimensions of the quality of life of children and adolescents with chronic disease: participants do feel more satisfied with their health condition, more capable of making decisions regarding their own health and to influence other people regarding issues related to chronic diseases  can be defined as a participatory and collaborative research methodology based on a process of describing the needs and resources of a particular community, considering various profiles: e.g., territorial, demographic, economic, services, institutional, anthropological, psychological, and future . This prMore recently, CP has been used in the field of education as a strategy for learning citizenship as young people can interact with service users and other members of the community  in research projects to identify needs and to evaluate existing resources . It is eIn the present study, CP was used as a collaborative research tool for participatory citizenship and health education, involving pupils and teachers from various public schools. Given that Portugal has a recent democratic history – only in 1974 a military revolution restored democracy after a period of dictatorship that lasted for 48 years – pupils selected one of various possible topics  and implemented a community-based research to develop three profiles: past (before the democratic transition of 1974), present, and future (in 35 years). This paper discusses both the implementation and results of CP for those groups involved in researching about health rights and healthcare needs and resources.The present study involved four intensive and comparative case-studies within state schools (ranging from primary to secondary level), between January and June of 2012, with more than 100 children and young people organized into 25 workgroups ” .In this paper, we have addressed formal and non-formal health education for promoting health literacy and well-being under a socio-political and ecological perspective that conceives of health issues beyond an individual and biomedical view, and considers how community institutions, organizations, and networks can be a tool for individual and collective empowerment regarding health rights. We illustrate this perspective with two studies that share a mixed-methodology design and a collaborative research approach with children and youth. The results of both studies demonstrate that children and young people are interested to know more about health rights and access to healthcare not only because they relate to their individual situation but also because they recognize these are sensitive public issues.In what concerns study 1, learning with and from the communities – in this case, community support organizations that focus on health rights of children and youth with chronic diseases – might be seen as a very relevant way to develop health literacy, empowerment, and well-being, once they reinforce local values and act more effectively in local contexts . Our focStudy 2 describes the implementation of CP in schools and considers its impact as a source of learning about citizenship rights, including health rights, and of developing public health literacy. Based on intensive case-studies in state schools, the project involved the collection of data using different methods in relation to different topics, and gave pupils the opportunity to apply theoretical knowledge to the “real world” and to develop knowledge that normally is not included in the curriculum. Thus, this collaborative research strategy may constitute a useful tool in health education, empowering young people to undertake “critical citizenship in practice citizenship that is learned in practice, not guided by an activation perspective, but by an agency perspective” .Both studies consider the promotion of health literacy through formal and non-formal health education in community contexts, namely the school and support associations. In both cases, there are also concerns with the promotion of participants’ empowerment and an emphasis on collaborative approaches to research, even if with different degrees that clearly appear especially relevant with potentially vulnerable populations. Furthermore, the two studies explore the potential of interaction in and between community contexts that, as Rappaport  states, But the studies presented here have several limitations, mainly because of limited sample sizes, the use of correlational designs or the sole focus on self-report data collection methods. Although the results support our claims for the potential value of formal and non-formal health education with an ecological and collaborative focus, more research is necessary using quasi-experimental designs and combining self-report data with other methods. Still, it is expected that the experiences presented in this paper can contribute to the development of collaborative approaches in health research projects, encouraging critical reflection about its potential strengths and weaknesses when undertaken with children and adolescents. Furthermore, we hope this paper contributes to disseminating the idea of a participatory, pluralistic, and co-responsible definition of health education, where children, families, professionals, communities, and political structures play an essential role .The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Limited research has been conducted on contemporary spiritual healing in European countries. The aim of this article is to report how German healers and their clients experienced and perceived the outcomes of spiritual healing and which explanations they use to describe the perceived effects.Semistructured interviews and participatory observation was used to collect data from spiritual healers and their clients. Analyses were based on the methodological concept of directed qualitative content analysis. Data was analyzed using MAXQDA software, discussed and reviewed by a multidisciplinary research team consisting of medical anthropologists, medical doctors and a religious studies scholar.In total 15 healers and 16 clients participated in this study, 24 interviews with healers, 20 interviews with clients and 8 participatory observations were analyzed. Healers and clients reported outcomes as positively perceived body sensations, increased well-being, positive emotions and symptomatic relief of medical complaints. Clients often described changes in their self-concepts and adapted life values. Explanations for perceived effects included connecting with transcendent sources, construction of meaning, as a result of the client-healer relationship, and as empowerment to make changes. Because the interviewed clients were recruited by the healers, a selection bias towards positive healing experiences is possible.We hypothesize that concepts of meaning construction, resource activation and the utilization of the clients’ expectations help to explain the data. Grounded in the emic perspective, we propose to use the following outcomes for further prospective studies: positive body sensations, changes of self-concepts and values, changes of medical symptoms and complaints. From the etic perspective, physical, emotional, social and spiritual wellbeing, sense of coherence, meaningfulness of life, empowerment, resource activation, change and symptom control should be further explored as potential outcomes. Healers, also often called “spiritual healers”, are people who exercise above all the practice of laying on of hands and distant healing . Due to Over the past two decades some quantitative studies on spiritual healers were conducted in the field of medical and psychological research -9. Many Many of the quantitative studies on spiritual healing presented inconclusive and heterogeneous results. Spiritual healing itself is not well understood and remains difficult to define. Therefore, it has been argued that qualitative research strategies might help to develop better hypotheses and study designs and thus should be applied before designing further quantitative studies .While there is a large body of anthropological research about indigenous healing systems in non-western countries, not much anthropological research has been conducted on contemporary European spiritual healing Addressing this lack of literature on European healers, we therefore conducted a qualitative study with German spiritual healers and their clients from 2010 to 2012. This qualitative study, performed by a multidisciplinary study team, collected data about the subjective experiences, biographies, concepts and motivations of healers and their clients. The aim of this paper is to report how healers and their clients experienced, perceived, described and explained the outcomes of spiritual healing and to generate hypotheses for future research.Semistructured interviews and participatory observations of healing treatments were used as qualitative research methods to collect data. The study was approved by the ethics committee of the Charité - Universitätsmedizin Berlin (02.11.2010 - EA1/238/10).A snowball sampling technique  was usedThe following inclusion criteria applied:Healers: 18 years of age and older, providing written informed consent. Clients: above 18 years of age, previous or current treatment by the healer, providing written informed consent.The following exclusion criteria applied:Healers: Lack of knowledge of the German language.Clients: disease that makes the participation in the study impossible .Based on the research questions and a literature review of publications about spiritual healing in the last 20 years a semi-structured comprehensive interview guide for healers and clients was developed by the research team. The interview guide was used to support the interviewers and allowed flexibility to vary and deepen interesting aspects. After the first interviews, the interview guideline was critically reviewed by the research team and revised accordingly. Table The interviews were digitally recorded and transcribed verbatim including a pseudonymization of personal data. The text files were then added to a MAXQDA-database for the qualitative analysis. Written memos of the interviews and participatory observations of the researchers added further information on the setting, non-verbal expressions of the interviewees, as well as the researchers’ subjective experiences.Analyses were based on the methodological concept of a directed qualitative content analysis  by usingIn total 15 healers and 16 clients participated in this study. We conducted and analyzed 24 interviews with healers and 20 interviews with clients; in addition we conducted and analyzed eight participatory observations of healing sessions.The mean age of the healers was 55 ± 7.9 (mean ± sd) years , four healers were medical doctors, four healers were non-medical CAM practitioners (“Heilpraktiker”), another seven healers were lay practitioners. Seven healers used combinations of healing methods, nine healers practiced mainly psychic healing, eight practiced healing by hands, and seven by prayer, one healer used incantations. Of the healers that used prayer, two healers were Christian Science Practitioners. Christian Science is a faith community in which healing is considered to be a basic mission for practitioners. The other healers related to different philosophies and religions such as Christianity, Buddhism, Sufism and also Shamanism. Very often healers related to a mixture of religions and philosophies.The mean age of the clients was 56 ± 13.8 years , six clients were employed, three clients were working in healthcare, two in the media industry, one as a lawyer, one client was unemployed and four were pensioned.The interviews lasted between 45 and 120 minutes each.Perceived outcomes of the healing sessions were described by all clients, but also by many healers. They can generally be assigned to the following categories:1) Changes in sensations and feelings,2) Changes of self concepts and values,3) Changes of medical symptoms and complaints.1) Changes in sensations and feelings“Yes, in the first treatment, I’ve found so much peace and relaxation, (…) I perceived my body (…) with a pretty strong relaxation, and heat went throughout my body, which I found to be very pleasant. (…) And there’s no sense of time.” The majority of the interviewed clients reported experiencing pleasant sensations and feelings during the healing treatments, as well as in the subsequent time after the treatment. This was a consistent theme, irrespective of the type of healing treatment. Clients described multisensory perceptions with sensations of heat or light, and “energy” flowing through the body. Experiences of relaxation, inner peace, an increased feeling of harmony, inner balance and joy were most frequently reported. Some clients described and explained this perceived phenomenon as a process of “internal cleansing”. The state of consciousness during healing was described by some clients as a dreamlike condition in which the sense of time gets lost.After the treatment, clients reported experiencing more internal strength and power, e.g. “my energy level has increased”. Some clients reported changes that started with a treatment several years back, the results continued to persist until date. Side effects or aggravations were rarely reported, these were interpreted as “temporary aggravations” in the initial process of healing.2) Changes of self-concepts and values“So I can let go now at all times. I totally opened myself, to my own abilities. I perceive myself to be authentic, no longer playing the role that I had played for a long time.” “My whole outlook on life has changed since then. Yes, I’m actually much more conscious of my life, with my partner, with my children. Things that were important before, now no longer have any significance. Yes, it usually was the case that I felt happy when I went shopping, but this is no longer important to me.” Biographical similarities between healers and their clients in Germany – a qualitative study. Submitted). Healers explained these changes as the clients’ regaining abilities to live their own lives, follow their own path and to make important decisions independently of external influences.A majority of the interviewed clients reported having changed their lives significantly after participating in healing treatments. A process of change was described by many clients that resulted in changing self-concepts, values and lifestyles. Many clients expressed that after the healing they realized how important it is to use their lifetime for a meaningful purpose instead of shopping, tv-watching, smoking or other consumer-activities. Improving family life was an important topic in talks with the healers after the treatments for many clients. Many clients reported that healing treatments helped them to focus more on social relations and to enjoy family-life and friendships. Family life was reported to have changed for the better in many cases. Some clients also embarked on new career paths, others discovered religion and spirituality, or felt more connected with transcendent sources. Some of the clients even began to act as healers themselves , followed by a connection to spiritual forces and experiencing a process of change.3) Changes of medical complaints and symptoms“Yes, I’m actually very well since then. I slept for the first time, without the usual (…) drugs.” Most clients described an increase in general well-being as important outcome of the healing treatments. Ameliorations of medical symptoms and disease  were also described. Clients and healers, however, did not consider the medical outcomes as most important result of the healing treatments.Most healers had the opinion that an improvement of well-being and vitality are first signs of successful healing treatments. If this happens, an improvement of medical symptoms should naturally follow.Most healers and many clients had explanations and built hypotheses on how the healing treatments might work. The described explanations can be summarized under the following categories:1) Connecting with transcendent sources,2) Empowering clients to change,3) Making use of the client-healer relationship,4) Construction of meaning.1) Connecting with transcendent sources“You have to understand that at the moment you feel touched by the light, you do everything right and everything is fine. (…) Love is the divine. And (…) when the divine is not there to heal, then I can not heal. (…) I let the energy flow, and I know that the energy goes to (…) where it is needed” .“What means “higher spiritual force”? This is the force that breathes in every cell of your body. (…) This is the force that moves the universe. It is the intelligence that lets the entire galaxy dance, that they do not collide together (…), the intelligence acts as above, but also works in you. Acting always and everywhere. (…) there I have to go and this is I need to find, something that has always been there. (…) Yes, it is like (…) an act of love (…), on an energetic level. You are connecting and merging with something, everything flows together.” Connecting clients and healers with transcendent sources to enhance healing was the most important explanation of how spiritual healing might work. Clients and healers named as transcendent sources for example “god”, “spirits”, “beings of light”, “light”, “energy”, “sacred silence”, “love”, “divine love”, “inner voice” or “the divine in oneself”. Connecting to transcendent sources in our study can be understood as a communication about an experience of transcendence (beyond oneself), as referring to something that is not in the everyday consciousness of the here and now, or something that is not experienced as a genuine part of the self . The exp2) Empowering clients to change“My healing is basically (…) to make the patient aware that the responsibility lies within him, (…) my work is to lead the client to know what he needs. And then he has to do it.” “It is of course a great advantage that we have a selection of [clients] here who (…) want to pursue a different path, and all they need is support. They have already taken the road, that’s their energy, and all we need to do is to support them.” ......I’ve always visualized. (..) to be healthy (..) be happy again (…) and I've always imagined exactly how it will be. And (…) that is just what happened. Many healers reported that an important mechanism of healing is to enable and support clients to take more responsibility and make changes in their life. Healers reported supporting clients to change unhealthy behaviours, attitudes and lifestyles. To achieve this, healers reported utilizing pre-existing expectations and supporting the clients to activate personal resources. They guide clients to find solutions for problematic aspects of their life and to overcome psychological “blockades”. The clients’ perception of positive emotions such as “happiness” or “love” as result of healing was considered very helpful to encourage and maintain a process of change.3) Making use of the client-healer relationship“(I) have spoken about it with the healer, and [the psychological symptom] was subsequently gone.” “And then I met [the healer] and found out that this woman is actually the first and only person I’ve ever met that really does what she says (…) and is following a very high standard of ethics (…).” Healers and clients believed that their relationship to one another supported the healing process. Clients described the healer’s empathy, his personality, his life and healing-story as a model for their individual path to healing. Trust in the healer was considered to be an essential part of the treatment. From the healer’s perspective, being empathic and giving the client the feeling of being accepted and understood was fundamental to the healing process. Taking enough time to talk about all relevant aspects of healing and to answer all the questions of the client was considered of utmost importance. Healers were often characterized by clients as role models: following the spiritual path the healer himself walked could help to change oneself. Healers inspired the clients through their personal biography, personality, their appearance and actions of faith. In most cases in the past healers themselves went through difficult times, a spiritual crisis or suffered from disease. This seemed to inspire clients to adopt similar problem solving strategies (for more details compare ).4) Construction of meaning“We all have a heart. We can access our heart, our emotions. Healing means to gain knowledge about the symptoms we are seemingly suffering from, and what they mean.” “So, you learn a lot about yourself. And in the broadest sense, it has a lot to do with the realization of how big this universe is and how small we humans are, and how much intelligence there is around us. And that leads strongly to the fact that you will find more in yourself!” Clients and healers reported that healing treatments helped clients to gain a new perspective on their complaints and subsequently construct new meaning in their life.The healing sessions were most often structured as a phase of increasing the clients and healers awareness, of connecting with transcendent sources and “letting go”, and of intuitively trying to understand the meaning of symptoms and problems (e.g. “listening to your heart”). The formal healing treatment was often followed by lengthy talks between clients and the healer to interpret the experiences.In the process of problem identification and interpretation, religious, spiritual and psychological meaning attributions were used to construct meaning. The healer emphasized that the clients “listen to their inner voice” and try to intuitively understand problems. By connecting with spiritual sources, clients could be enabled to look at their problems from a different (e.g. “higher”) perspective, learn more about themselves and understand their problems in a broader context. This leads to the construction of new meaning and subsequently problem solving strategies. This should empower clients to overcome “blockades”, make significant changes which possibly lead to relief and cure. In this sense, complaints and problems were interpreted by healers and clients as symbolic carriers of meaning. Very often they were understood as a warning system that calls for a change.In the first part of the discussion we address the emic perspective of our research. In the second part, we introduce our own hypotheses and thoughts as etic perspective.Clients and healers perceived outcomes of spiritual healing as positively experienced body sensations, positive emotions, general wellbeing and as a symptomatic relief of medical complaints. Clients reported to have changed their self-concepts, values and lifestyle. Explanations for the perceived outcomes included connecting with transcendent sources, empowerment to change, the client-healer relationship and construction of meaning. The most important explanation was “becoming a channel for transcendent sources” and “letting go”, experiencing a “flow of energy”, a “release of blockades”, “love” or “heat” which would be followed by healing. A strength of this qualitative study is the inclusion of a range of spiritual healers and their clients, different settings , various (religious) traditions, multiple healing techniques, and professional backgrounds. Another strength is the multidisciplinary research team that enabled us to approach the data from different perspectives and utilize a large variety of scientific expertise in the process of analysis.It was interesting to note that the answers to our interview questions between healers and clients resembled each other. This may be explained by the fact that our interviews took place after the process of healing had already occurred and healers and their clients constructed new meaning together and shared beliefs. For further studies, it would be very interesting to study this process of creating shared meanings and beliefs with a longitudinal qualitative research design, observing healing treatments over time.A limitation of this study is a potential bias, as clients and some healers were included in this study by snowball sampling. Included healers could have thus chosen clients and other healers for the study whom they considered to be an expedient interviewee. Therefore, the reported outcomes and explanations might present a biased picture of successful healing sessions and stories of clients that improved during the healing process. We tried to minimize a potential community bias by approaching very different healer networks, which we retrospectively consider to have been successful. Nevertheless, our results may possibly reflect the more positive aspects of healing sessions. Also the fact that we observed many similarities between healers and clients might be influenced by this bias.The subsequent research step therefore should be to include clients prospectively and analyze healing treatments qualitatively and quantitatively right from the first meeting of clients and healers. This would, in the long run, be less selective and allow for better descriptions of how the healing process develops, the experience is described, meaning is constructed and change might take place.The described explanations for spiritual healing could be understood as interdependent mechanisms: Connecting with transcendent sources may lead to an increase in positive sensations and well-being, which is embedded in a process of creating mutual meaning between healers and clients. This might empower the client to change and help to solve problems and relieve complaints. Successful change in return may lead to positive feelings and sensations, which confirms the whole process and motivates clients to maintain the changes.So far our analysis and discussion was closely based on the emic perspective. We now would like to introduce our etic hypotheses that should be understood as complementary interpretations of the emic explanations of our interviewees. We consider meaning construction, resource activation and utilizing the clients’ expectations as the most important hypotheses to explain the reported outcomes from an etic perspective.Healing consists of bodily processes such as balancing, homeostatic regulation and repair, but also making sense of suffering . To explTransforming illness experience by cognitive reframing could play a crucial role in spiritual healing. Framing in social science refers to a schema of interpretation that individuals rely on to understand and respond to events. The choices people make in their lives are influenced by their creation of frames. The concept of cognitive reframing is based on the ideas of Ludwig Wittgenstein  and concTaking into consideration that cognitive reframing is a therapeutic technique used in many therapeutic systems, most prominent in psychotherapy, spiritual healing may not be that different in its mechanism, but its concepts, utilized metaphors and meanings make it particular and distinguishable from other systems. If this is true, a convergence of concepts, meanings and world views between healer and clients would be an essential condition to enable reframing and the healing process . AlreadThe concept of resource activation may also be very helpful in understanding spiritual healing from the scientific point of view. A resource can be considered as a “source” of support, including every aspect of life that can be activated and utilized as helpful in the therapeutic sense ,27. The Our data also supports the paradigm shift that has occurred in psychology in recent decades: Overcoming illness and disease and the development of an attitude that promotes healing is associated not only with positive cognition, but also with positive emotions ,32. In oThe utilization of clients’ pre-existing expectations was frequently described as an important instrument for healing by the healers. Today there is evidence that expectation of a therapeutic effect can lead to physiological changes and effects . In placcomprehensibility: a belief that things happen in an orderly and predictable fashion and a sense that you can understand events in your life and reasonably predict what will happen in the future; (2) manageability: a belief that you have the skills or ability, the support, the help, or the resources necessary to take care of things, and that things are manageable and within your control and (3) meaningfulness: a belief that things in life are interesting and a source of satisfaction, that things are really “worth it” and that there is good reason or purpose to care about what happens. Significant changes were reported by the clients of our study in all three SOC components. Comprehensibility is generated by experiences of consistency. The manageability component would receive special strengthening: it does not match any personal focus of control (“I control the action”), but, on the contrary, is associated with the confidence that there are other people and spiritual forces helping when one’s own resources are exhausted [A helpful model to interpret our data and to integrate our findings might be the theoretical framework of the salutogenisis model of Antonovsky , positivxhausted . Also acThis would mean that spiritual healing may enable clients to use their resources more effectively to better deal with stressors and move on the health-disease continuum towards health. Nevertheless, it must be noted that the SOC was conceived by Antonovsky as a relatively stable global orientation. He believed that only small modifications would be possible over lifetime. However, a recent literature review  suggestsThe results of this study point to the following outcome parameters for future prospective quantitative studies on healing:Outcomes derived from the emic perspective:1) Positive body sensations2) Changes of self-concepts and values3) Changes of medical symptoms and complaintsOutcomes derived from the etic perspective:1) Physical, emotional, social and spiritual wellbeing2) Sense of coherence3) Meaningfulness of life4) Empowerment5) Resource activation6) Change7) Symptom controlIt should be remembered that spiritual healing may only fit to certain clients and problems, applying the therapeutic system to a general population might not work. In designing a prospective study on spiritual healing this should be considered. Advertising participants for a clinical trial on spiritual healing might attract completely different clients than those who naturally attend the healing treatments. Therefore, a naturalistic approach, e.g. including cohorts of routine clients of healers in prospective observational trials or comparative cohort studies might be an essential condition to further investigate spiritual healing.The authors declare that they have no competing interests.All authors designed the study. BS, FB, FJ and MT collected the data. BS, FB, FJ, CH and MT analyzed the data, MT prepared the manuscript. CW and MT had the overall responsibility and received the funding. All authors were involved in interpreting the results of the analyses and critically reviewed the manuscript. The final version was approved by all authors.The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6882/14/240/prepub


Novel psychoactive substances (NPS) are continuously and increasingly appearing on the international drug market. Global Internet forums are a publicly available reality where users anonymously discuss and share information about NPS. The aim of this study was to explore and characterize the discussions about NPS on international Internet forums.The most post-frequent NPS discussions were collected from three “leading edge” international Internet forums. A total of 13,082 posts from 60 threads of discussion were systematically examined and interpreted to reveal recurring topics and patterns. Each thread was coded with emerging topics and supporting quotations from the data set. Eventually, codes with coherent meaning were arranged into 51 broader categories of abstraction, which were combined into four overarching themes.uncovering the substance facts, (2) dosage and administration, (3) subjectively experienced effects, and (4) support and safety. The first theme dealt primarily with substance identification, pharmacology, and assessed not only purity but also legal status and acquisition. The second theme focused on administration techniques, dose recommendations, technical talk about equipment, and preferred settings for drug use. The third theme involved a multitude of self-reported experiences, in which many different aspects of intoxication were depicted in great detail. The users emphasized both positive and negative experiences. The last theme incorporated the efforts of the communities to prevent and minimize harm by sharing information about potential risks of the harmful effects or contraindications of a substance. Also, online support and guidance were given to intoxicated persons who experienced bad or fearful reactions.Four themes emerged during the analysis: (1) The findings showed that the discussions were characterized by a social process in which users supported each other and exchanged an extensive and cumulative amount of knowledge about NPS and how to use them safely. Although this publicly available knowledge could entail an increase in drug use, the main characteristics of the discussions in general were a concern for safety and harm reduction, not for recruiting new users. Drug-related Internet forums could be used as a location for drug prevention, as well as a source of information for further research about NPS. A profound shift in the market for recreational drugs has occurred. The availability and number of unregulated novel psychoactive substances (NPS) have continuously increased and expanded into a global phenomenon-3. For fNPS, also referred to as “legal highs”, “designer drugs”, or “research chemicals”, often mimic the effects of corresponding illicit drugs and are intentionally produced to circumvent existing drug laws. Legal rThere are very limited information and published data on NPS available to either users or health-care personnel,16. ThesRegardless of the degree of validity, publicly available content on the Internet is an undeniable reality, which remains the major source of information for youths with sensitive or health- and drug-related issues of concern,25,26. IThe aim of this study was to explore, define, and characterize the discussions about novel psychoactive substances on international Internet forums.The data were retrieved from the “leading edge” Internet forums, as presented by the Psychonaut Web Mapping Project, which iThe 20 most recent threads of discussion in each subcategory of each forum were collected into a list (one for each forum), containing thread title and number of posts. Threads unrelated to NPS were removed. Each list was sorted by number of posts to find the threads most discussed in each forum. We labeled these threads “post-frequent” for future reference. The top 20 threads from each forum  were selected for further investigation and analysis. The total number of posts from all three forums was 13,082. All collected posts were in the English language. The gathering of data took place during October 2013, and the latest retrieved post was written October 22.Big n Dandy 2-FA (2-fluoroamphetamine) thread” contained the following post: “I used this substance for the first time and experienced chest pains and aches all over the body”, which was coded as “Sharing experienced side effects”. Furthermore, the thread titled “Dose - The true Methylone dosage?” contained the post “My recommendation is wrapping 150-200 mg of Methylone in a rolling paper and ingest it on empty stomach”, which was coded as “Dosage suggestion” and “Administration suggestion”. The coding was done manually in a Word document. Eventually, all 60 discussion threads had a set of codes and multiple accompanying quotations to support the codes. Also, the codes were repeatedly checked for consistency through confirmation by comparison with other posts on the same topic in the same thread. On occasion, previously coded threads were re-read as new topics emerged in other threads, which could have been missed. At one point, the codes were saturated, meaning no new topics emerged, which was interpreted as indicating that the largest part of discussion topics was covered by the analysis. Next, codes with coherent meaning were arranged into 51 categories  dosage and administration, (3) subjectively experienced effects, and (4) support and safety.The 60 discussion threads were analyzed individually by reading all posts in each of them in pursuit of recurrent topics of discussion. The analysis process was characterized by openness and a bias-free attitude and was undertaken through a systematic exploration of discussion topics and patterns in each thread. More specifically, each post was examined and interpreted for its underlying topic. Every time a new topic emerged in each specific thread, a code was created and related to that thread. For example, the thread titled “Our research involved the collection and analysis of already existing information that were published on public Internet forums. No terms of access or special permissions restricted the discussions from public access. A discrete and observational approach was undertaken, and no interactions or interventions with forum discussions or members were made. The information available was therefore considered to be an observation of public behavior online, in compliance with the ethical guidelines and recommendations provided by SACHRP. In ordeuncovering the substance facts, (2) dosage and administration, (3) subjectively experienced effects, and (4) support and safety. The themes are presented below with some representative quotations.The analysis of post-frequent and drug-related discussions on international Internet forums generated 51 categorized topics based on 13,082 user posts, which were combined into four overarching themes of discussion: (1) Vendor will not reveal the molecule”. / “I have used both chemicals and believe they are different. ‘Sunshine’ is not Methylone either”. It was very common to compare the NPS discussed with traditional counterpart drugs or previously occurring NPS and rate them accordingly. Another recurring topic was how and where a substance was acquired: “I really want to try this, could anyone post where to get it?” to which another user responded: “Hello, you have an email”. Selling drugs via the forums or linking to sites that offered drugs was officially not allowed, so these discussions were mostly moderated or continued nonpublicly: “Can someone pm [Personal Message] me a vendor in the US?” Different vendors were nevertheless mentioned in talks about their offered products or in discussions related to price, shipping, and the overall evaluation of the vendors’ service. General discussions about NPS availability were also found, which often included descriptions of where the NPS was encountered, such as online or in real life. In addition, the reports of availability were closely linked to discussions of the legal status in different countries: “Canada’s drug act does not list Ethylphenidate, and no analog law for Methylphenidate exists so you should be legally safe here”. Potentially legal consequences of possession or purchase of NPS were also mentioned.This theme incorporates the users’ discussions about specific NPS and their objective properties and appearance. A wide variety of known NPS, such as different types of synthetic cannabinoids, stimulants, dissociatives, and hallucinogens, were discussed. See Table Both stereoisomers are most likely active (as with amphetamine). In that case, it’s a matter preference: dopaminergic or noradrenergic effects. Choose for yourself”. The origin and history of certain NPS were discussed as well. Furthermore, users talked about how the use of certain chemicals could have contraindications with both traditional substances and other NPS. Related to pharmacology was the topic of tolerance from repeated use of the same substance and cross-tolerance between chemically similar substances. Toxicity was also found to be of interest for the users, and many discussions focused on theoretical speculation of a substance’s overall harm potential: “The neurotoxicity of 4-Fluoroamphetamine derive from the release of large amounts of serotonin from the neuron, as well as general inhibiting effects of neuronal processes”. Moreover, discussions focused on the exterior appearance of different NPS and the assessed purity. Users described if the NPS was produced in the form of a pill, powder, or other. The users gave detailed reports on appearance, feel, smell, and taste. They also assessed the identity, quality, and purity from the appearance, for example, “My powder has a distinct benzene-like chemical odor and a blueish/greenish color. Unlike former yellowish odorless batches, I think this one might have impurities”.Other more in-depth substance talk involved chemistry and pharmacology. Users speculated about how substances were built molecularly and how specific chemicals interacted with the brain and body to produce certain effects, for example, “I think 15 mg is perfect for moderate effects - great for watching movies! Then at 30 mg the visual impressions and euphoria increase dramatically”. The route of administration was given much attention. Users described several different ways in which different NPS were taken, such as nasally, intravenously, and orally. Opinions about the best way to ingest a specific substance were very common: “I don’t recommend insufflation and the taste is awful. Rectal administration is recommended for a rapid onset”. Technical talk about things such as do-it-yourself smoking devices and weighing and purification of a substance were found: “Did you wash the crystals before recrystallization? If so, which solvent(s) did you use?” Taking a specific NPS in combination with other drugs and how the different effects would interact with or supplement each other were also discussed: “I want to experience Methylone, Mephedrone and MDPV in one go. Who has tried this or can give advice on dosage?” The circumstances and surroundings in which the drugs were administered were shared among users. They also asked for, or proposed to others, several settings and recreational activities: “How would this substance suit a nightclub setting?” Users also discussed their expectations of the upcoming experience of NPS and their mood or state of mind when taking the drug. They were suggesting and sharing different purposes of using drugs, for example, study aid, recreation, self-medicating, curiosity, and personal development.This theme consists of topics related to circumstances surrounding the administration of NPS. Dosage was found to be a widely debated topic of discussion. Many opinions and estimations about dosing and re-dosing were stated. Users also asked for advice on specific dose recommendations with regard to individual traits as previous experience, body weight, built-up tolerance of the drug, etc. They also speculated about how the dose could affect the experience and intensity of effects and suggested different doses for specific purposes, for example, “I felt a boost in confidence and was more social, verbal and energized. I was also more curious and present.” Potency and duration of effects were central and recurring topics in this theme. Specification of the time at which different phases of the experience occurred was mentioned. The discussions of effects were found to consist of physiological, emotional, and cognitive aspects of the experience. Also, users were talking about perceptual and sensory alterations. In addition to the positive effects, many side effects or negative experiences were shared: “I used this substance for the first time and experienced chest pains and aches all over the body”. Residual effects or aftereffects were also given attention in the discussions. Users who had not tried a specific NPS asked others to share their experienced effects. There were not many debates or arguments found among the effect discussions; instead, it appeared that the whole community contributed to complete a picture of the overall effects: “I also experienced that the ‘magic’ of Methoxamine decreased over several successive trips”. The first posts about experiences with a novel substance were often scientifically depicted: “T + 0:00 2 mg allergy check intranasally. T + 0:22 Calibration dose 15 mg sublingually. T + 1:10 Subject experiences euphoria equivalent to 40 mg 4-methylephedrone but less stimulation. T + 2:10 Subject confirms a return to baseline.” References to, and comparisons with, traditional substances and their effects were made to explain the experience to others: “4-fluoroamphetamine definitely feels like MDMA. The empathy is there and I’m socializing and experiencing a pleasant wellbeing. The stimulation and sharp focus also reminds me of amphetamine”. In addition, if the NPS in focus had a traditional counterpart substance, it was often used as point of reference to evaluate the effects at large. Rating and evaluation of effects in general were found to be a very common topic: “I love it! Although it does not have the intensity of MDMA or Mephedrone, it reminds me of their chemicals qualities. This substance is deeper and more multifaceted than amphetamine”. They also discussed the impact of the experience on everyday life: “6-MAPB changed my worldview and helped me in a tremendous way”.This theme was the most prevalent and summarizes discussions about subjective and self-experienced effects induced by a wide variety of NPS. The effects were discussed in great detail and with precision. Many initial or onset effects were described. Also, the primary effects and positive aspects of an experience were shared thoroughly: “I advise you not to take it under those circumstances because serotonin will be released like with MDMA”. It was also found that users shared practical tricks and theoretical knowledge with one another to reduce potential problems such as sleep deprivation, contraindications, and the misidentification of substances. Experienced users were asked to verify the authenticity of substances by providing photographs or appearance descriptions. Furthermore, general caution and harm reduction was proposed throughout the forums: “At this forum we advocate taking a break of at least one month between uses, which applies to 5-MAPB as well”. Individual users who suspected a dangerous aspect of using a NPS cautioned the whole community. The first users who ordered and used a previously unknown NPS shared their firsthand experience of immediate risks and hazards with the rest of the community. For example, several early warnings about substances or combination of substances that constituted a perceived risk were found: “Purple Wave of any kind is toxic… do not purchase it, you will mess yourself up”. / “Be aware of this combo! Some people have had strong reactions to this”. Less immediate warnings of potential side effects accumulated in the threads of discussion as more users started to report back about the drug: “I warn you: the residual effects are bad if you binge on it for a while and abruptly stop”. The abuse potential of different drugs was also discussed: “In my experience it has highly addictive properties”. Furthermore, if the first users of an unknown NPS experienced it as safe and reliable, it was reported in the thread as well. Warnings also included notions of bad batches of a substance or scamming vendors.This theme emphasizes that the discussions involved social support and community help with drug-related issues of concern. Users often asked each other for specific advice on how to prevent or minimize harm. They also expressed the need for support with drug-related problems, to which other users would respond: “Is anyone online because I need assistance with an ongoing anxiety attack?” Different coping strategies were suggested by fellow users: “Relax, you will be fine. Put on a movie or occupy yourself by talking to friends.” Long-term problems like addiction and withdrawal were also topics that emerged. Users asked about abuse problems, and others were being supportive or offered their experience on how to solve them. Also, several recovery reports were shared publicly to other users, who responded with encouraging comments or grateful remarks.Discussions were oriented towards acute help and emotional support to users who were online to ask for guidance while intoxicated with fearful or bad reactions: “uncovering the substance facts, (2) dosage and administration, (3) subjectively experienced effects, and (4) support and safety. The findings indicate that the discussions involved an extensive exchange of knowledge about NPS and how to use them safely. The discussions were characterized by a communal process in which forum users supported each other and contributed with cumulative experiences and knowledge whenever a new thread of discussion brought awareness to a previously unfamiliar substance of interest. More specifically, the initial and continuous characteristic of this generative process was to uncover the substance facts, which incorporated elaborate theoretical speculation of origin, classification, and molecular structure, as well as pharmacological action, tolerance, and toxicity. Many users displayed a very high level of knowledge, which reflects a dedicated interest in NPS as well as a focus on preparation and safety. The accuracy of single posts of information is difficult to assess since reliable knowledge about these substances is scarce. The general principles of toxicology and pharmacology were however appropriately followed. More interesting is that every post contributed to a greater body of cumulative community knowledge which could be publicly assessed and continuously refined by anyone on the forum. Another interesting finding is that discussions occasionally focused on revealing the concealed or unknown psychoactive constituents in branded NPS with content specification intentionally left out. When possible, the actual appearance was used for identification and assessment of quality. As information about a NPS increased, and comparisons with similar types of substances were made, an overall assessment of expected effects and potential risks and benefits started to form. By then, the users also discussed both the legal status in different parts of the world and the availability and acquisition of the NPS. In addition, different vendors were evaluated for their customer service and quality of product, indicating the awareness of safe drug use.This study has explored and characterized the discussions about NPS on international Internet forums. The most post-frequent discussion threads from three “leading edge” international Internet forums were systematically analyzed for recurring topics. Fifty-one categories of discussion emerged, which were combined into four overarching themes that characterized the discussions: (1) dosage and administration. In short, users discussed virtually everything that was related to the knowledge of getting the drug into the body. Personal preferences and different individual conditions gave rise to many opinions and suggestions. Furthermore, effect- and purpose-specific dosing and method of administration were thoroughly requested and provided by users, so were different sets and settings in which the use of drugs occurred, as well as do-it-yourself techniques for enhancement of administration. Discussions about ingesting a combination of drugs for supplementary and interactive effects were also frequently discussed. The majority of these topics correspond to discussion characteristics found among a sample of online ecstasy users[As the uncovering of facts progressed, expectancies of the actual NPS started to emerge, and the process of information exchange was further characterized by an added focus on sy users, which nsubjectively experienced effects started to characterize the discussions, which was interpreted as an expression of a substance’s increased availability and popularity over time. Self-reports of firsthand experienced effects were very common and constituted the most prevalent theme. A whole spectrum of effects, as well as potency and duration, were depicted and shared with the community in a precise and technical manner. The connoisseur-like accounts of experience contributed to the value of using Internet discussions as a source of detailed data for scientific studies where triangulation is required or relevant data are scarce. Users were inclined to review and rate their experience, as well as compare it with effects of the NPS’s traditional counterpart drug. In addition, the descriptions of experiences were cumulative and appeared to generate a consensual evaluation of a substance’s usefulness. This might help explain why some NPS become more popular and widely spread than others. Interestingly enough, the users emphasized both positive and negative experiences of effects, which indicate that the reports were retold with a thorough and comprehensive ambition. In earlier studies based on self-reported data[Gradually, numerous and very detailed descriptions of ted data-23, it wsupport and safety of themselves and others. The result showed that the discussions were served as a user-governed early warning system where, for example, acute risks and side effects were posted whenever a dangerous or unhealthy aspect of a NPS was encountered. Furthermore, the discussions were characterized as a support system where different types of individual concerns were responded to with advice, practical tricks, and knowledge in order to prevent and minimize harm. In fact, harm reduction appeared both explicitly and implicitly as the common denominator that on the whole permeated the discussions. At a higher level of abstraction, harm reduction emerged as a characteristic that was present in all themes in this study. The significance of harm reduction is further supported by the findings in previous studies where drug-related discussion forums have been examined[The findings in the present study provide an additional explanation to the absence of one-sidedly positive and drug romanticizing discussions, namely that users were concerned with the examined,28,30. Hexamined have revexamined indicateexamined whether Discussions on drug-related Internet forums were characterized by a communal process in which users supported each other and exchanged an extensive and cumulative amount of knowledge about previously unfamiliar substances. The discussions uncovered the substance facts such as identity, origin, quality, legal status, acquisition, and pharmacology. Users also talked about circumstances related to the administration, including intentions, settings, individual dosing, safe combination of drugs, and administration techniques. Furthermore, a plethora of subjectively experienced effects were shared among users in a connoisseur-like manner. These reports were nuanced and comprehensive, which was suggested to reflect the users’ concern for support and safety. On the whole, harm reduction emerged as the main characteristic that permeated the discussions. In addition, users warned each other about potential risks and side effects and supported each other with advice and guidance. The findings in the present study contribute to the understanding of the online reality that faces youth in search of drug-related information. Also, the discussion forums could be used for drug prevention, as well as a source of information for further research about NPS.The authors declare that they have no competing interests.AK and CS conceived and designed the study, analyzed the data, contributed to the writing of the manuscript, and agreed with the manuscript results and conclusions. CS searched and collected the data from the forums. Both authors reviewed and approved the final manuscript.