Opioid use is a significant problem in Alaska. Medication-assisted treatment for opioid use, including buprenorphine, reduces withdrawal symptoms and the harm associated with opioid abuse. Understanding consumers’ treatment-seeking process is important for addressing barriers to treatment, facilitating effective service utilization, and informing policy.To understand treatment-seeking behavior, we examined the attitudes, perceptions, and knowledge of those who would benefit from the medication-assisted treatment (MAT) buprenorphine. Qualitative data from 2 focus groups (each including 4 participants) and 3 in-depth interviews with people who have used or considered using buprenorphine in treatment for an opioid use disorder were analyzed using grounded theory and directed content analysis approaches.Key findings suggest that individual  and systemic  factors frame the treatment seeking process. Participants’ progress on the treatment-seeking road was affected by models of addiction and MAT, which related to facilitators and barriers encountered in seeking treatment . These factors shaped the longer-term road to recovery, which was seen as on ongoing process.The findings of this study suggest it is crucial for interventionists to take a contextual approach that considers individual and systemic factors involved in opioid addiction, treatment, and recovery. This study highlights ways policy makers and treatment providers can address the barriers consumers face in their treatment-seeking process in order to increase treatment access. Opioid use disorder involves continued misuse of opioids despite recurrent problems occurring from use . Due to Medication-assisted treatment (MAT) for opioid use disorders, which use psychotropic drugs usually combined with psychosocial treatment, has been empirically indicated to reduce withdrawal symptoms, opioid abuse, and the harm associated with opioid use –14. For In 2002, the FDA approved buprenorphine as a new MAT for opioid use disorders under the Drug Addiction Treatment Act of 2000 . BuprenoIt is important to understand the attitudes and perceptions of those who would benefit from treatment (now referred to as consumers) as these factors influence the utilization of services. Studies assessing treatment-seeking tendencies for addictive disorders highlight barriers including stigma, misattunement to patient needs , and financial cost , 17. WhiUnderstanding treatment seeking from the consumer perspective has implications for policy. For instance, restrictive federally imposed limits on the number of buprenorphine patients a provider can treat may serve as a barrier for receiving services , particuThis research was based on a larger mixed-methods study that explored how both treatment providers and potential treatment consumers understand MAT. The aim of the current project was to explore what factors influenced Alaskan MAT consumers (including those who sought or considered using MAT) treatment-seeking process.The study was conducted in Fairbanks, a city of about 32,000 people in the Interior region of Alaska . AlthougThe study sample included people 18 years or older living in Alaska who: (1) met criteria for an opioid use disorder at some point in their life, and (2) had been impacted by medication-assisted service delivery . Exclusion criteria included individuals that were actively suicidal, experiencing psychosis, or who directly received services from the researchers who collected data.n = 7). Nine participants had received MAT at some point in their lives, seven had been or were currently in a methadone treatment program, and two had been in a buprenorphine treatment program.Focus groups and semi-structured interviews explored participants’ perceptions relevant to MAT. There were a total of 11 participants; the majority were female  experiences seeking treatment including barriers to entering and remaining in treatment  (2) treatment preferences , (3) success in MAT , and (4) beliefs about the cause of addiction . Participants were also asked about perceptions and attitudes related to MAT for themselves and for others .10 software.Following the grounded theory techniques of theoretical sampling , data coUsing grounded theory, data were coded using open, axial, and selective coding techniques . The resThe first two authors collectively coded each transcript into the major content domains, developed an initial codebook for each domain, and began to code the domains using the initial codebook. After agreeing on the dependability of the codebook, they independently coded the domains and routinely checked for agreement. Discrepancies were collaboratively discussed. These strategies served to enhance reliability and protect against coder drift.The conceptual model emerging from the analyses illustrates an overarching meta-theme  as well as domains that influenced the treatment-seeking process .Individual factors included intrinsic attitudes, beliefs, values, and motivations in seeking and completing treatment. Systemic factors included broader social support, family, treatment, public policy, and culture. The individual and systemic influences interacted bidirectionally along each individual’s unique treatment-seeking road. For instance, one participant recalled, “once I started going and hearing from others, hearing what the program means, going to meetings, I started experiencing strength and hope…I wanted what they had…I’m sick and tired of being sick and tired.” In this example, the participant had internal factors (being “sick and tired of being sick and tired”) that interacted with external influences (supportive others engaged in treatment), and influenced their treatment-seeking road through social learning (“experiencing strength and hope”). This meta-theme is present throughout the three key domains as they relate to the consumer’s experience before and during treatment, and in recovery.models of addiction and MAT, (b) barriers and facilitators, and, (c) the road to recovery. Models of addiction and MAT included implicit factors that inform the participants’ treatment-seeking process. Facilitators and barriers included experiences that made it easier or harder to obtain treatment. All of these constructs shaped the participants’ road to recovery, which was primarily described as a process that happens later in, or after, treatment.While the meta-theme encompasses broad elements framing participants’ experiences, three key domains represent qualities that affected how participants navigated their treatment-seeking road, including: (a) models of addiction and MAT, or they might describe facilitators that influence their road to recovery.This process is represented as a road in Fig. For me there are both individual and social factors. Individually… genetically, I come from a long line of people who are addicted to substances. Socially, culturally, (substance abuse in) my neighborhood where I grew up was culturally appropriate. A man drank; got loaded; it was actually a rite of passage. And I think after that particular point, it kind of woke up the dragon biologically and almost created a downward spiral in a lot of scenarios. Physically, emotionally, and the fact that I came from an area that I guess you could say struggled. The whole community struggled with addiction so it was kind of like this acceptance of everybody kind of like abus(ing). That was a contributing factor. It was a way of coping with things—to medicate with substances.Participants shared their lived experiences, beliefs, and understandings related to addiction and MAT, which established internal models. These models operated as inherent frameworks that influenced their treatment-seeking process. Specifically, participants described how they understood or explained the cause of addiction, beliefs about getting clean, and the withdrawal process. One participant highlighted the individual and systemic influences involved in his understanding of addiction:Explanatory models of addiction such as the example above informed participants’ beliefs about getting clean. For instance, believing that addiction is caused by biological and contextual factors may lead someone to believe that biological and social components must be addressed in order to recover . These explanatory models had implications for treatment, as many participants in this study believed recovery was a lifelong process.Additionally, withdrawal was described as a difficult aspect of addiction that sometimes led people to go back to misusing opioids. As this participant illustrated: “ was physical, mental, emotional, spiritual. I was a disaster for like…I think I made it…four days, and then I went back.” Participants reported withdrawal made it challenging to quit or stay off opioids without support. As one participant noted, “So I had to come off of it cold turkey, and it was a terrible, terrible experience, so I just went back to heroin.” As such, participants described MAT as being helpful in decreasing withdrawal symptoms, which allowed it to be used as a “stepping stone” to recovery.I hear it all the time: ‘you’re not sober’. And it really hurts my feelings because I worked hard…from where I was to where I (am) now…I got my own place, I got my disability, I got everything on track. And all she said was, ‘you’re still not sober’.In addition to their models of addiction, participants discussed their models of MAT. This included perceptions of how others feel about MAT, and participants’ own implicit beliefs about MAT. Participants primarily perceived others as having negative views, including stigma and judgment, about MAT. Negative societal views, including the belief that people on MAT were still addicts and not in the recovery process, interfered with participants’ progress along the treatment-seeking road. Participants believed that these views were communicated overtly  and covertly . For example, one participant stated:Looking back on it, (buprenorphine) was my miracle drug because I know I couldn’t do it without that. That first three months was so painful, I felt I was being ripped apart by wolves, the cravings were so intense.Nevertheless, participants had varying personal beliefs about MAT, including believing it was a good aid in the recovery process, thinking it was trading one drug for another, and having negative emotions associated with MAT. For instance, one participant stated:It took me a long time to realize how important [buprenorphine] was to my recovery—it was that stepping stone from before and after. I wouldn’t be [here] if it wasn’t for the in-between with the […] program.However, another noted, “I guess I felt like, looking back on that, I feel like I put like a Band-Aid® on my gunshot wound.” Regardless of whether individuals felt that MAT was beneficial or detrimental, all participants discussed feeling that MAT alone was not enough and should be paired with support or treatment. In terms of recovery, one participant noted the importance of an integrated buprenorphine program:Participants discussed four facilitators and barriers including attitudes, support (or the lack thereof) in treatment, resources, and the structure and context of treatment. These facilitators and barriers shaped participants’ attempts to seek MAT.“People are like, ‘drug addicts are evil. Evil junkies, evil!’ So I don't even think people are really educated on drugs, much less treatments or [buprenorphine]…that is where every goes wrong…because most people don’t want to get help or talk about it cause you’re [assumed to be] evil.”Certain attitudes, including social and internalized stigma (for utilizing MAT) that were affected by societal values, and a personal decision to change emerged from participants’ stories as being relevant to their ability to enter treatment. These attitudes, which served as facilitators or barriers to treatment, were necessarily influenced by the implicit models discussed above. Social stigma, including negative public beliefs about addiction, presented a roadblock to seeking MAT by affecting receptivity to treatment. One participant noted:This example depicts how societal stigma stems from a lack of health literacy about MAT. This societal stigma can stymie consumers’ reaching out and getting into MAT, even if they believe it is effective.Participants highlighted the need to change negative attitudes about addiction, substance abuse treatment, and MAT on a systemic level. One participant suggested, “creating a culture that is conducive and attractive for people in recovery for all different manifestations of recovery whether it’s medically-assisted or abstinence, whatever.”I think being Alaska Native and having addiction and trying to get help, there’s a huge stigma to that. It’s kind of like, you’re a shame. It’s like very shameful. We’re very prideful people, you know? It’s a lot harder for people to get clean.Relatedly, values that spur from our “Puritan Society” could contribute to societal or internalized stigma. Societal stigma, such as the belief that those who have an addictive disorder have a poor character or the de-emphasis on the biological contributions on addiction, were described as barriers to seeing MAT as an acceptable option for some. Additionally, an individual’s culture  influenced his or her treatment-seeking experience. One participant stated:This example accentuates the importance of considering how an individual’s cultural context impacts the societal stigma they face and the obstacles they encounter in seeking treatment. It also illustrates how societal stigma may be internalized, thereby effecting consumers’ feelings about themselves as they try to access treatment, including the experience of shame.While social and internalized stigma could make it difficult to seek treatment, personal decision to change accelerated participant progress along the treatment-seeking road. For instance, one participant noted, “you have to want it,” and another accentuated that staying clean was the most important thing in his life: “I want it more than anything. Stay clean first. That’s about it. I have nothing without it.”Some participants believed their therapists’ support, unconditional positive regard, and collaborative treatment environment are what got them through treatment challenges. One participant discussed the role of a compassionate and collaborative treatment environment: “What I’ve seen be very successful is just compassion and like, ‘let’s do this. Like let’s figure it out together.’”Others felt that treatment was nontherapeutic and unglamorous, and that providers were unhelpful, “jaded”, and/or lacked health literacy, which presented significant barriers to seeking and staying in treatment. Likewise, another participant discussed how stigma and the lack of support in the treatment environment could negatively impact recovery: “Well, I guess if you’re on [buprenorphine] and you go to meetings and you just hear whisperings and there was stigma …You don't want to go to a meeting where it’s not unconditional love.”When you’re using, you have a tribe. When in recovery and I go to NA, I have a tribe. When I relapsed, what made me do that was I betrayed my using tribe…People are necessary for recovery. It’s necessary for me. Connection. That’s it…it’s saving my life.Support and connection across different systems  was also described as a contributing factor in addiction, treatment seeking, and recovery. One participant noted:This powerful quote illustrates how support and connection affect the entire treatment-seeking process, from addiction to relapse to recovery. Clearly, support and connection have an important role in why participants do or do not seek MAT.“there’s a very narrow window of opportunity in somebody’s addiction to get in (treatment) so when they finally decide, okay I think I need something, and then there’s nothing available, then that window has passed and you have to wait for the next one.”The lack of resources, including health literacy, access/availability, and financial resources, were primarily discussed as barriers to MAT. For instance, one participant highlighted the detrimental influence of limited treatment availability:This acute description demonstrates the need for availability and swift action on the part of treatment facilities. Additionally, finances served as a barrier for many as illustrated by this participant: “I think the financial aspect is one of people’s biggest fears. Because they don’t have money. And even the willingness to make payment plans is more incentive for people to get help.” As a result of the lack of treatment availability and financial barriers, many participants were left feeling hopeless and getting high, having to travel long distances in dangerous circumstances to seek treatment, or committing a crime to go to jail to “get clean.”Finally, participants attributed stigma and misassumptions about MAT to a lack of health literacy: “There’s no knowledge about it, people just don’t understand it. And they’re not going to unless they’re told.” Nevertheless, our analysis revealed that education alone is not enough. One participant stated, “Education may not always be the answer…I do believe information, education…those are things that for all providers might be helpful; not so much if the person presenting it has their own biases.” In other words, it is important to increase health literacy while also addressing implicit and systemic stigma about MAT. Undoubtedly, access to both physical and informational resources are important for progression along the treatment-seeking road.In regards to treatment structure, participants discussed a strict treatment structure as beneficial in the beginning of treatment, while noting that more autonomous functioning can facilitate recovery later in treatment. In this way, some participants implied that MAT could itself become a source of oppression and restriction that kept them locked in through an “umbilical cord”. Alternatively, MAT that offered more freedom and flexibility, especially when the consumer was stable, was described as having the ability to foster strength. As this participant noted: “I honestly, first time in my life, took it like I was supposed to. Took it like the bottle told me to. And it was kind of a liberating experience. To be in control and in possession of something like that.” This speaks to the importance of matching the treatment structure with where consumers are developmentally.Overall, the various treatment facilitators and barriers interacted with each other to influence the road to recovery. For example, barriers such as stigma and access to care were especially difficult to overcome for consumers with less support . On the other hand, motivation to change was a primary source of strength, inspiring individuals to seek treatment even in the face of barriers.models of addiction and MAT and barriers and facilitators, participants discussed their experiences and expectancies later in treatment, or their road to recovery. This included reaching a critical mass point, internal factors , contextual factors , and living a program of recovery .In addition to Reaching a “critical mass point” was key in participants’ transition toward recovery. This was characterized as dramatic moments that prompted participants to change including having a relapse, hitting rock bottom, perceiving that they had a choice to make changes, “being sick and tired of being sick and tired”, and realizing that misusing opioids was no longer an effective coping mechanism. After the critical mass point was reached, both internal and external factors helped people move toward recovery.I think there are people who are strong enough to get through (the stigma). I probably wouldn’t give a shit, I want to get clean you know? I know what I want. But other people are not like that. They’re not that strong willed or minded.Internal factors seen as necessary to longer-term “recovery” included will, dedication, clarity of values, and spirituality. These factors were often described as influential in helping participants overcome adversity. In the following example, will and clarity of values helped an individual persist through difficult situations to remain in the living program of recovery after treatment:In addition to will, motivation and believing in oneself were described as important. For instance, one participant stated, “I feel like you can’t push somebody. You got to come to it on your own.” Another participant pointed out, “You have to change. That was a huge epiphany for me: that I’m the problem.”Every time I would think of feeling like I wanted to use again, I would just think about losing [my kids]. I would never, ever want to lose them or leave them or do anything—and it’s a big one for me. It’s kept me sober for the last 4 years.External factors  helped participants continue moving forward on their road to recovery. One participant described how her dedication to her family kept her “sober”:Even so, participants did not discuss recovery as a permanent point, but they believed it was important to have a living program of recovery. They generally believed this living program of recovery was an individualized process that is different for every person, but likely included an investment to themselves to stick to treatment, changes in thought processes, using MAT as a stepping-stone toward recovery, and going through a process of change that was not a “quick fix.” Participants discussed the progress they had made, and many were able to look back and notice how they progressed. For instance, one participant recalled, “If you really do look at everybody in here and where they were compared to where they are now, like most of us have gotten back on track, we all have our kids, gone back to school.” Continuing to progress was also a component of the living program of recovery. As this person noted, “I can’t stop. It never stops, the disease doesn’t go away.”The current study is one of the few studies to examine the attitudes and perceptions of consumers who may benefit from the MAT, buprenorphine. It illustrates the individual and systemic factors that affect the treatment-seeking process and elucidates the importance of contextual factors, such as stigma, access to resources, and support. Ecological systems theory  providesIn our study, each person’s addiction, treatment-seeking process, and recovery can be framed within the nested systems. These systems include macrosystem , exosystem , mesosystem , microsystem , and individual .The important role ecological factors play in the development, maintenance, and treatment of substance abuse is well established  and is aThe role individual and systemic factors play in MAT seeking found in this study corroborates with the construct of recovery capital –31. The For example, macrosystem, exosystem, and mesosystem  influences frequently served as barriers, whereas participants’ individual and microsystem resources  more frequently served as facilitators to treatment and recovery. As such, policy makers might take these findings into consideration by creating policy and allocating funds that support microsystems from the bottom-up, rather than dictating the operation of treatment from the top-down. This may include providing funding for rural areas or in areas that are affected by opioid misuse, or allowing treatment programs to decide their own treatment operations (including the number of patients a provider can serve) as opposed to having to meet a federally imposed standard. Also, treatment practitioners may want to focus on individual strengths that can serve as personal resources for recovery.Importantly, the source of power affecting MAT seeking could originate in any system and could change overtime. For instance, someone may originally seek MAT because of their children (microsystem level influence) yet remain in treatment because of their children and their own individual motivation . Likewise, practitioners should keep in mind that the source and degree of motivation fluctuate, and refine interventions accordingly, flexibly drawing on shifting sources of recovery capital.Participants in our study discussed willpower, believing in one’s ability to change, and motivation to change as individual factors important for seeking treatment and maintaining recovery. Similarly, self-efficacy –34, defiIn this study, specific individual factors, including self-efficacy and motivation to change, facilitate MAT seeking. Thus, interventionists should target their efforts with self-efficacy and motivation to change in mind. Perhaps a practitioner could work to increase self-efficacy by taking a strength-based approach and cater treatment to the consumer’s motivation to change by using a motivational interviewing approach. Additionally, a community psychologist could emphasize these individual strengths when developing community interventions.Participants in this study also emphasized the importance of contextual factors in treatment-seeking decisions, including support from family, others in treatment, treatment providers, and the broader community and context. Family history and social support are recognized as important external factors that affect addiction and treatment . In one Because some factors of the community and cultural context could serve as facilitators or barriers, it is important for interventionists to take this into account when working with people in MAT. For instance, therapists should consider the individual in their cultural context. Additionally, societal stigma should be addressed by considering the cultural context in which it is nested.Health literacy and the treatment environment also influenced participants’ ability to get what they needed out of treatment. Many participants described being “uninformed” when seeking treatment. While health literacy can combat some barriers, societal stigma must also be addressed by challenging attitudes. Thus macrosystem interventions should inform those who would benefit from MAT about treatment options and educate people globally about MAT to challenge attitudes and fight societal stigma.While MAT facilitated recovery for some participants, it was also described as a barrier to furthering recovery when consumers felt trapped in the system. This corresponds with findings from a previous qualitative study where participants described methadone as “liquid handcuffs” that prevented them from actualizing recovery . ThankfuFinally, there are unique challenges that rural citizens face due to distinctive cultural and geographical context, including higher rates of substance abuse, limited access to health care, travel barriers, and stigma associated with behavioral health services . The parThese barriers to access have significant practical implications for society because, while substance abuse may commonly be assumed to be an individual disease, its social impacts on health and judicial systems exceed $510 billion annually . MAT is A major limitation of this study is that it included a small sample. While we used snowball-sampling procedures to attempt to reach a broad range of those who would benefit from MAT, most participants were aware of some treatment services, and we were limited in our ability to reach individuals who do not access treatment services. Thus, this convenience sample may not be representative of those who are very limited in resources. The limited sample warrants caution for generalizing results. Additionally, our model is derived from a sample that has contextual factors that may not generalize directly to other communities. Therefore, specific influences that affect MAT treatment seeking may vary. Future research exploring MAT treatment seeking in underserved communities should attempt to obtain larger, diverse and representative samples of those who would benefit from MAT.However, like another qualitative study , the samWhile research has explored attitudes towards methadone, this is one of the few studies to qualitatively examine the perceptions of those who would benefit from buprenorphine treatment. Although this treatment has demonstrated efficacy –14, the The current study highlights that addressing the interrelated individual and contextual factors affecting treatment-seeking is critical. Further, there are discrepancies between what is needed for optimal progress on treatment-seeking road and the political and contextual barriers consumers may face in obtaining timely treatment that addresses their needs. As such, interventionists should recognize individual strengths while prioritizing the cultural milieu when advising clinical and community change efforts to improve the delivery of MAT and buprenorphine services. In doing so, health literacy, compassion, and understanding should be increased and disseminated across the different systems  while combatting negative and misinformed beliefs that perpetuate stigma. Finally, our findings echo that it is important to increase access to MAT programs that integrate medication with psychosocial components in substance use disorder treatment , 46.


Intentional use of complementary and alternative medicine (CAM) has previously only been researched in small, possibly biased, samples. There seems to be a lack of scientific information regarding healthy individual’s attitudes and presumed use of CAM. The aim of this study is to describe prevalence and characteristics of participants who intend to see a CAM provider compared to participants who intend to see a medical doctor (MD) only when suffering from a chronic, non- life-threatening disease and in the need of treatment. Further to describe differences between the groups regarding expected reasons for CAM use and expected skills of CAM providers.The survey was conducted in January 2016 as part of the “TNS Gallup Health policy Barometer”. In total, 1728 individuals aged 16–92 years participated in the study, constituting an overall response rate of 47%. The survey included questions regarding opinions and attitudes towards health, health services and health politics in Norway.The majority of the participants (90.2%) would see a MD only if they were suffering from a chronic, non- life-threatening disease and were in the need of treatment. Men over the age of 60 with a university education tended to see a MD only. Only 9.8% of all respondents would in addition visit a CAM provider. Being an intentional user of a MD + CAM provider was associated with being a woman under the age of 60. The respondents believed that CAM providers have professional competence based on formal training in CAM. They also believed that individuals seeing a CAM provider have poor health and are driven by the hope of being cured. Further, that they have heard that others have good experience with such treatment.Intentional use of CAM is associated with positive attitudes, trustworthiness, and presumed positive experiences in the CAM-patient-setting. Intentional CAM users also have the impression that CAM providers have professional competence based on formal training in alternative therapies.The online version of this article (10.1186/s12906-018-2179-8) contains supplementary material, which is available to authorized users. Complementary and alternative medicine (CAM) consists of a group of diverse medical and health care systems, practices and products that are not considered to be a part of conventional healthcare. These interventions are mostly used in conjunction with (complementary to) conventional health care .The use of CAM in general and the use of a CAM provider more specifically is widely used both worldwide, in Europe and in Norway –4, rangiThe typical user of a CAM provider is a well-educated young to middle-aged women –5, 7 whoThe definition of CAM varies widely: from the utilization of a CAM provider to the inclusion of over-the counter products, CAM techniques, special diets, exercise and prayer . While oIn Norway CAM providers are defined as providers other than authorized health professionals who give health-related treatment that mainly is offered outside public health care . There aAll Norwegian citizens are provided with a regular MD that offers medical services in primary care. Visits to the MD are co-paid with a small fee  in contrThe contextual and sociocultural factors influencing CAM use are still not well understood. Patient surveys are often selective and the representativeness of the target group is often questioned. One of the obstacles is that most studies reporting prevalence and epidemiological data are undertaken in patients within the conventional healthcare system. Already being a CAM user might bias survey results even more.Intentional CAM use has previously only been researched in small, possibly biased samples . There sIn this study, the intentional use of a CAM provider as an adjunct to an MD, are compared to intentional use of MD only.Prevalence and characteristics of participants who intend to see a CAM provider in addition to an MD compared to participants who intend to see an MD only when suffering from a chronic, non- life-threatening disease and in the need of treatment.The participants expected reasons for why individuals see a CAM providerWhat skills and qualifications the study participants expect the CAM providers to have.Describe differences between the two groups regarding:The aims of the study presented here are to describe the:TNS Gallup is a Norwegian commercial group conducting interview-based marketing analyses for different stakeholders. TNS Gallup is part of the market research company Kantar TNS.TNS Gallup Health policy Barometer, a population-based survey focusing on health-related issues derived from different stakeholders engaged in commercial interests, idealistic work and research institutions. With regard to attitudes to, and intentional use of CAM, the questions were developed at the Norwegian National research center in complementary and alternative medicine (NAFKAM) for this study. See Additional file The current web based survey was conducted in January 2016 as part of the TNS Gallup has an access panel for surveys consisting of about 45,000 individuals who have given consent to participate and who regularly answering surveys. Among these, a sample of 3702 potential participants were selected for this survey.This TNS Gallup panel is put together in terms of representativeness reflecting the Norwegian population. Members of the panel are mainly recruited through representative surveys conducted by telephone, using probability sampling. This sampling method implies that every member of a population has a chance (greater than zero) of being selected in the sample. This probability can be accurately determined by weighting sampled units according to their probability of selection.The sample used in the TNS Gallup Health policy Barometer was stratified by gender, age and geography. After data collection, data were weighted to correct for random sampling error and non-response. The sample was weighted by gender, age, geography and highest level of education.In total, 1728 individuals 16–92 years of age participated in the study, constituting an overall response rate of 47% representing 39–50% of the stratified groups. Four hundred and eighty-eight were excluded in the analysis presented here, because they did not provide an explicit choice of an MD or MD + CAM provider, resulting in 1240 included participants in the analysis . Significance level was defined as Of 1240 presumed healthy respondents who had explicitly indicated a choice regarding intentional use of MD and/or a CAM provider, 1118 (90.2%) indicated that they usually only would see an MD if they had a chronic, but not life-threatening disease, while 122 respondents (9.8%) indicate that they would see both an MD and a CAM provider , and respondents under the age of 60 (p = 0.034) to a higher degree intended to add CAM to their MD treatment. Men, individuals over the age of 60, and individuals with university education intended to a higher degree to only see an MD.When comparing intentional MD + CAM users with the MD users, we found that women , household income nor education was associated with being an intentional MD + CAM user or intentional MD user Table .Table 1Bhealthiness of diet”, “self-reported health”, “physical activity” and “body mass index (BMI)” based on reported height/weight was equally distributed in the two groups.The health-related measurements “professional competence based on formal training in CAM therapies”,  intend to see only an MD assuming they should suffer from a chronic, not life-threatening disease and were in the need of treatment. Only a small proportion (9.8%) would also see a CAM provider. Being an intentional CAM user was associated with being a woman and younger than 60 years old. These respondents believe that CAM providers have professional competence based on formal training in CAM and that individuals seeing a CAM provider are not healthy and driven by the hope of being cured.In this study, the intentional use of a CAM provider, is surveyed in a questionnaire which includes other non-related questions developed by many other interests and contributors. The responses with regard to potential use of CAM might therefore depend on opinions, attitudes, feelings and beliefs towards other aspects and interest areas. The content and order of questions might also influence the responses, as the internal validity of the questionnaire as a whole has not been scrutinized specifically. However, the TNS Gallup methodology has been in common use for many years. The large cohort and the relatively high response rate also ensure the content validity of the questionnaire.I usually go to….” might imply that the responses rely on earlier experiences with health care. The situation description is, however, prospective, and responses to the question must therefore be seen as indicative of intentional use in the future.The focus in this paper is healthy individuals’ intentional use of CAM. The phrasing of the question could also, in part, be regarded as being based on previous healthcare experience. The term “intention to use, is associated with some limitations. What people say they intend to do if they should be ill in the future is often different from what they actually do when they become ill. Optimistic bias refers to the phenomenon that a person claims to be less at risk than others, even though the general risk constellation is similar [The variable  similar . StudiesThis phenomenon has been shown for a variety of health risks and is not dependent on age, gender, education or occupation . In healAs might be expected, considering the phenomenon of “optimistic bias”, 9.8% intentional use of a CAM provider if suffering from a chronic, not life-threatening disease, is slightly lower than what was found in a Norwegian study finding that 13.3% of the participating seeing an MD last year also saw a CAM provider , 16.The higher presumed use of a CAM provider among women and individuals at a younger age, is in line with previous findings in individuals already using CAM providers , 4, 21. The similarity of the two studied groups regarding “education”, “household income”, “place of residence”, “healthiness of diet”, “self-reported health”, “physical activity” and “BMI” shows that the individuals intending to add a CAM provider to their future health care choice, is similar to those not intending to make that choice in most respects except gender and age. This is in line with previous research  showing The intentional use of CAM is, however, lower than predicted use of CAM found in a comparable Israeli study where 54% of the respondents replied that they intended to use CAM within the next year. Similarities were found with regard to the fact that predicted future use was similar to reported use within the past year . IntentiAs described earlier, there are no educational requirements to legally practice as a CAM provider in Norway , 15. TheProfessional competence based on formal training in CAM therapies”. This is in line with the requirement of most of the CAM associations and therefore also the requirement of the official register for CAM providers in Norway.The highest proportion of respondents in both groups presume that CAM providers have “authorized health care personnel or have medical knowledge at the level of nurses, shows that respondents are fairly knowledgeable with regard to CAM providers’ educational level.The majority of intentional CAM users see CAM providers as professionally qualified. The reason a lower proportion of intentional MD users seeing CAM providers as professionally qualified, could be due to low effort in searching this knowledge about CAM providers, as they do not intend to use this service themselves. Assuming a low level of competence among CAM providers might also justify their choice of not intending to add CAM treatment to their future use of an MD. The high proportion of the total study population that did not expect CAM providers to be The spiritual healer association in Norway requires only documented healing skills for membership and not formal education in healing. These CAM providers might be in mind for the 130 respondents . This is somewhat higher than what is found in studies mapping cancer patient’s reasons for CAM use [The most commonly reported assumed reason for CAM use was “ CAM use . This exThey are generally open to try whatever” is reported by nearly 40% of participants in both groups. These findings are in accordance with a recent study on German cancer patients, finding that approximately 45% reported the reason for CAM use to be “To not miss any chance” [.The reason “ chance” .Others having good experience with such treatment” as the expected reason for CAM use. The result underpins the idea that word of mouth is an important source of information for the decision of adding CAM to the treatment. This reason is found also in other studies, however less frequently [Others having good experience” less frequently than the intentional CAM users.Most of the intentional CAM users (57.4%) reported “equently , 28. TheThe majority of the participants intend to see an MD only, if suffering from a chronic, not life-threatening disease. Only a small proportion would in addition see a CAM provider. Intentional use of CAM is associated with positive attitudes, trustworthiness, and presumed positive experiences in the CAM-patient-setting. Intentional CAM users also have the impression that CAM providers have professional competence based on formal training in alternative therapies. This study shows that a similar pattern of prevalence of use and attitudes towards CAM found in the general population, is also found with regard to intentional CAM use in healthy individuals. Our results might, with great caution, be introduced into the debate of who are stakeholders for priorities in the general healthcare debate; the patients or the healthy people? According to our results, healthiness does not disqualify a healthy person from having the viewpoint of the patient in mind.Additional file 1:The questions used in this study. (DOCX 17 kb)


For infectious diseases caused by highly pathogenic agents  which have the potential to spread over several continents within only a few days, international Health Protection Authorities have taken appropriate measures to limit the consequences of a possible spread. A crucial point in this context is the disinfection of an aircraft that had a passenger on board who is suspected of being infected with one of the mentioned diseases. Although, basic advice on hygiene and sanitation on board an aircraft is given by the World Health Organization, these guidelines lack details on available and effective substances as well as standardized operating procedures (SOP). The purpose of this paper is to give guidance on the choice of substances that were tested by a laboratory of Lufthansa Technik and found compatible with aircraft components, as well as to describe procedures which ensure a safe and efficient disinfection of civil aircrafts. This guidance and the additional SOPs are made public and are available as mentioned in this paper. Since there are flight connections to nearly all regions of the world, Health Protection Authorities of all countries must focus on the problem of epidemic spread via civil aviation. Fortunately, it does not happen often that passengers become infected by contagious co-passengers . NeverthIn recent cases of infectious diseases caused by highly pathogenic agents  which have the potential to spread over several continents withinonly a few days, international health protection authorities took measures – which are, in part, of high economicrelevance – to limit the consequences of a possible spread –8. The mBased on the framework of the International Health Regulations, a number of recommendations, standard procedures, and guidelines focusing on the operational needs of civil aviation have been published. Basic advice on hygiene and sanitation on board an aircraft is specified by the “Guide to Hygiene and Sanitation in Aviation”, published by the WHO . Neverththe aircraft structure ,electronics and avionics ,sensors ,interior .Every aircraft undergoes cleaning based on a standard cleaning procedure (SOP) prior to the next departure. In case of a suspicious or confirmed passenger suffering a highly infectious disease (HID), a special, additional disinfection of the aircraft is mandatory. For this purpose, all used disinfectants must be aircraft component compatible, i. e., must not have any negative effects on individual parts or the structure of the aircraft, while also fulfilling national healthcare requirements , 14. Whesafety of passengers and crew,operability of aircrafts,aircraft installations, andaircraft certifications.To this day and considering national and international law and regulations, sufficient recommendations from aircraft manufacturers and WHO are not available . Their rdelays and rebookings,flight cancellations and additional accommodation of passengers,ferry flights, andstorage/transport of material and equipment for disinfection (dangerous goods).Apart from obvious aspects of health, internationally accepted requirements and specifications of authorities, the financial aspects of airlines must be taken into consideration. Concerns areThe purpose of this paper is to fill in these gaps and to give guidance on a selection of substances that were tested and found compatible with aircraft components, as well as to describe procedures that ensure a safe and efficient disinfection of civil aircrafts.This guidance and these additional standard operating procedures (SOP) are made public and are available as indicated in the references  or via QIn 2014, the Lufthansa Group  operated a worldwide network with 217 destinations in 107 countries and carried out over one million flights, transporting nearly 106 million passengers. Lufthansa considers it as absolutely necessary to implement the SOPs in accordance with local Health Protection Authorities to ensure international air traffic without interruption. The airline will apply these SOPs worldwide and would like them to be accepted by all sides . These SOPs include procedures forThe process should be kept as simple and cost efficient as possible for all concerned parties, such as local authorities, affected airlines, and airports. The goal is to reach a conclusive, internationally accepted medical and legislative procedure for disinfection which enables a safe, rapid, and cost effective further utilization in case of a passenger with a highly infectious disease on board any civil aircraft.The authors took these critical topics into consideration and worked closely with local Health Protection Authorities (HPA) as well as colleagues from the Frankfurt International Airport (FRAPORT AG) while testing different disinfectants and techniques before implementing them.Lufthansa Technik AG (LHT) is a wholly owned subsidiary of Lufthansa German Airlines. It is an internationally licensed maintenance, production, and development organization and is an authorized design organization . Therefore, LHT is authorized to test the use of disinfectants and related procedures in aircraft interiors based on international, standardized testing methods. In Lufthansa Technik Central Laboratories, a comprehensive evaluation was performed to confirm the compatibility of aviation materials with substances and agents for surface treatment and cleaning.With a broad variety of tailored LHT evaluation programs, producers, suppliers, and users can check, prove, and substantiate that subject agents do not cause damage or compromise the airworthiness of the aircraft and its components. For the disinfection process several products have been determined as useful according to officially nominated disinfection methods . Thus, LThe products taken into service are belonging to to the family of alcohol-based agents, formaldehyde-based agents, and oxygen-releasing disinfectants. The use of formaldehyde-based agents reveals an increased ablation of magnesium, which shows that it can be used for single purposes, but not for regular interval cleaning. Based on the testing, the group of oxygen-releasing disinfectants shall not be used on surfaces with magnesium due to a high risk of material corrosion and on seals because of the possibility of embrittlement and consecutive malfunction. Alcohol-based disinfectants were tested without any restriction. Nevertheless, it must be noted that alcohol-based agents are flammable and the explosive level has to be closely observed during their use. It is mandatory to refer to the HID Form from Lufthansa Technik  or via tMultiple test procedures were used to examine the interdependencies between typical aviation materials and the substances tested. The LHT Central Laboratories provide services to perform the tests in its chemical and metallographic laboratories and also according to specific standards of Lufthansa, Boeing, Airbus, American Standard Methods (ASTM), etc. They tested effects on aircraft materials such as metal, glass, electric conduits, synthetics, leather, and fabric seat covers, windows, and monitors. All disinfectants are approved by the airline engineering and can be used on the Lufthansa fleet. Gathered results deviating from common aircraft manuals, for example, the Aircraft Maintenance Manual (AMM), are documented in the LHT Standard Practices Manual (SPM), which is mandatory for the Lufthansa fleet and, if accepted, for clients.integration into manuals for cockpit crewsinformationon notification procedures to air traffic control and operational control center (OCC),for cabin crews,for passengers,for Health Protection Authorities at Port of Destination (POD) or Port of Entry (POE),on products and generics,for disinfectors,for aircraft maintenance and ground personnel, andfor release to service (RTS).With regard to the SOPs, different procedures are defined and reduced to simple, reproducible processes . The folThe above-mentioned procedures are available at Lufthansa destinations worldwide, published in the Station Emergency Reaction Plan (SERP). The SOPs are available in a document on board DLH aircrafts  was tested and approved by the United States Environmental Protection Agency (EPA) and is authorized for use in the US and Asia, but does not comply with requirements of Health Protection Authorities in Germany . Thus, Lformaldehyde,hydrogen peroxide, andalcohol.Only a small number of disinfectants were chosen to facilitate worldwide transportation and the storage of necessary products with tested component compatibility as well as to reduce the complexity of the matter. Products were selected based on the componentsThese components are effective against HID and they are aircraft component compatible if used properly. In addition, they are available worldwide. Formaldehyde, hydrogen peroxide, and alcohol allow the varying techniques of standard disinfection of surfaces.Lufthansa Technik, with its certification and expertise, is able to disinfect and to certify the affected aircrafts for release to service effectively and in a time-efficient manner. The past has shown that the negative consequences of missing or uncoordinated procedures could be immense. Abilities and capacities of major airports and involved health protection authorities could be quickly exceeded. Thus, it is highly urgent to define global measures and procedures to ensure that all involved players worldwide coordinate and accept them.In case of an emergency, being well prepared will ensure optimal processes while minimizing the rate of errors. As a consequence of this, Lufthansa German Airlines developed together with the German competent authorities a High Infectious Diseases (HID) Form which is also available for technical/expert groups via email (FRAPXO@DLH.DE).


To explore how young people (ages 16–25 years) with inflammatory arthritis evaluate the risks and benefits of treatment, particularly treatment with biologic therapies.This qualitative study involved in‐depth interviews (n = 44) with young people, trusted others , and health professionals; audio‐recordings (n = 4) of biologic therapy–related consultations; and focus groups (n = 4). Analysis used techniques from grounded theory .Young people aspired to live what they perceived as a “normal” life. They saw treatment as presenting both an opportunity for and a threat to achieving this. Treatment changes were therefore subject to complex and ongoing evaluation, covering administration, associated restrictions, anticipated effects, and side effects. Information sources included expert opinion  and personal experience. Previous treatments provided important reference points. Faced with uncertain outcomes, young people made provisional decisions. Both trusted others and health professionals expressed concern that young people were too focused on short‐term outcomes.Young people value treatment that helps them to live a “normal” life. There is more to this than controlling disease. The emotional, social, and vocational consequences of treatment can be profound and lasting: opportunities to discuss the effects of treatment should be provided early and regularly. While making every effort to ensure understanding of the long‐term clinical consequences of taking or not taking medication, the wider impact of treatment should not be dismissed. Only through understanding young people's values, preferences, and concerns can a sustainable balance between disease control and treatment burden be achieved. There is increasing consensus that patient preferences are both important and unpredictable. What patients want is not necessarily what doctors think they want Box 1Prior research on patient treatment preferences has focused on older adults with rheumatoid arthritis. Young people with inflammatory arthritis have different circumstances and concerns.Young people see treatment as presenting both an opportunity and a threat to their desire to lead a normal life. They describe a wide range of consequences  arising from their treatment regimens.In evaluating treatment changes, young people take this wide range of outcomes into account; where outcomes are uncertain they consider decisions to be provisional.Young people need active encouragement to discuss their treatment concerns and difficulties with the care team, so that a sustainable balance between disease control and treatment burden can be achieved.Like older adults, young people with inflammatory arthritis (IA) can have severe disease warranting aggressive treatment, including biologic agents Choice is exercised within and outside the clinic. Patients make decisions about treatment options in the context of consultations, and then, on a routine basis, whether and how to enact their agreed upon regimen. Evidence of the link between patient preferences and adherence is increasingly convincing: where treatment decisions align with patient preferences, clinical outcomes are better There are a variety of reasons that young people's treatment preferences might differ from those of older adults. Understanding how they inform treatment choices matters, due to the profound and lasting impact that such decisions have. Our study therefore explored how young people evaluate the risks and benefits of treatments, in particular biologic therapies. It considered their priorities and concerns and the challenges treatment presented. Other aspects of the work (relating to the influence of “trusted others” on decision‐making) have been reported elsewhere We report findings from a qualitative study conducted in England, 2012–2014. The study explored decision‐making about biologic therapies by young people, ages 16–25 years, with a diagnosis of IA . Subject to meeting nationally agreed upon criteria, young people in England can access a range of treatments, including biologic therapies, without charge, from the National Health Service (NHS).The study used multiple methods and sources, an approach termed methodological and data triangulation Twenty‐five young people were interviewed, recruited purposively to ensure diversity  and support exploration of emerging issues . Trusted others were identified by the participating young people. In 5 instances they were interviewed with the young person. Trusted others who did not accompany young people to interviews were approached through them. Young people gave trusted others written information on the study and asked for permission to pass on their contact details. Most agreed to participate; those declining included a close friend and a partner.Six health professionals were interviewed, including nursing and medical staff from all 3 types of clinic and trusts, recruited to provide a range of perspectives. Interviewees were proposed by the research team and approached directly by the researcher with written information.Interviews lasted 40–120 minutes. Most were conducted face‐to‐face, at a location of the interviewee's choice. All interviews were semistructured, using schedules informed by the team's experience, a review of the literature, and the emerging analysis. These addressed a set of core topics  but differed in detail and emphasis to reflect individual circumstances .Four consultations were recorded involving 11 participants . We hoped to compile a larger body of recordings, but negotiating and arranging these proved challenging. The recordings should be considered a convenience sample. However, they include a short first conversation about biologic therapies and a lengthier counseling session. They provide a detailed record of how biologic therapies are explained and the questions and concerns that arise.Four focus groups were convened at the end of the project to explore the face validity of findings. Focus group A comprised 7 young people  and focus group D comprised 3 young people . Focus group B comprised 8 health professionals with interests in adolescent rheumatology. Focus group C comprised 4 trusted others . Recruitment to the focus groups was purposive (invitations being extended to people with and without prior involvement in the research). The groups provided a forum in which participants could comment on the intelligibility, credibility, and significance of findings and invite further reflection on the analyses.Interviews, focus groups, and consultations were audio‐recorded and transcribed verbatim for analysis. Transcripts were analyzed by an author (RIH) using techniques foundational to grounded theory  to identify patterns and relationships We report here on a series of related themes in our data, all underpinned by the concept of “being normal.” This was a high priority for young people in our study, informing the processes of making and evaluating decisions. Put simply, young people aspired to live a normal life (theme 1); treatment was perceived as both an opportunity for and a threat to this (theme 2). Powerful emotions were a context for and a consequence of treatment decisions (theme 3). Information relevant to such decisions was acquired from different sources (theme 4), which did not always align. Decisions were considered provisional (theme 5) and were reviewed against experience. The focus on short‐term outcomes (theme 6) was a concern to trusted others and professionals.Many of the young people interviewed talked of how they aspired to live what they perceived as a normal life, or as one put it, “to get back to … a normal way of life … not really too different from anybody else's” . Not all the young people taking part in the focus groups connected with the term “normal,” but they accepted that its components had resonance: “Living a normal life is a priority? I would agree with [that], but don't like the word ‘normal”’ .“Normal” is a complex, multifaceted, situational, and dynamic concept concerning not only bodily function and experience, but also mental well‐being and performance of social and vocational roles. One professional explained: “They want to be able to get up in the morning and just be able to move. They want to go to work. They want to stay at college. They want to complete their university degree. They want to travel. They want to do normal things” .Young people constructed their ideas of normal through reference to alternate selves (pre‐diagnosis or on a good day) and to others. They engaged in processes of implicit and explicit comparison, with unknown, idealized others (young people in the abstract) and known others . These known others seemed a particularly important reference point. Young people wanted to feel, look, think, and act like them. They largely wanted their peers to think they were like them, and to treat them accordingly. For some young people this hope was realized, but for others, the sense of being different  ran deep.In the context of aspiring to live a so‐called normal life, treatment appeared to be both an opportunity and a threat. Most young people confronted with treatment decisions were keen to experience relief from symptoms. A change in treatment might reduce pain, improve mobility, and get life “back to normal.” Effective management of their condition enabled young people to make plans for the future. This included taking steps into education or employment, or toward independent living: “I'm thinking of going back to college in September. Just because I feel like everything is being managed now. I feel I've a better chance of going to college and actually being able to stay there” .However, those experiencing side effects from prior treatments were acutely aware of the potential for less positive outcomes, presenting threats to normal life. Some young people (and trusted others) described how steroids had caused changes in face shape and weight. Many talked of how methotrexate had triggered nausea, vomiting, and vocational underperformance: “Every Monday, you could guarantee that I wasn't at school … 'cause I was still sick from the medicine” . Others explained how increased susceptibility to infections had diminished their general sense of well‐being and disrupted their lives.Even where a drug proved effective in controlling inflammatory processes, relieving associated symptoms, and had minimal side effects, it could be highly intrusive. Several young people explained how their plans and routines were dictated by their treatment schedule. The loss of freedom to engage in activities taken for granted by their peers was lamented, compounding a sense of being different: “All my friends are going out, going clubbing, going camping. And I always have to think about my medication and that first, before I even think about anything else” .Many young people revealed anxieties about aspects of treatment. Methotrexate cast a long shadow over some young lives: “The look of it, the smell of it, the very thought of it made me shake” . The psychosocial sequelae of treatment included familial tensions, isolation, and bullying. Decisions about treatment changes were consequently highly charged: seemingly small adjustments to dosage, routines, or mode of administration could unleash strong emotions. Escalation of treatment forced young people to confront their condition, challenging efforts to perceive and present themselves as normal. Such decisions also brought them face‐to‐face with the uncertainties of the future. Most recognized that no treatment was guaranteed to work, and that their options were becoming more limited. Young people tried to maintain an optimistic outlook, but past disappointments bred caution: “The methotrexate worked for a little bit and then it stopped working … to put all your hopes on  seems a bit … I can't really do that” .In evaluating treatment changes, young people drew on information from various sources. They gained much of their knowledge, particularly about biologic agents, from health professionals delivering their care. However, this was supplemented by information from family or friends with relevant experience or expertise, research done by and for young people, and, critically, direct personal experience.Evidence from personal experience played a powerful role in shaping young people's understanding of their condition and the treatments used to manage it. Prior treatments, including for other conditions, provided important reference points: “My attitudes toward potential outcomes with things like this are colored by a lot of the treatments I've received as a child” . Often experiential evidence aligned with clinical measures, but not always: “Sometimes I feel like I'm just a blood results number. They, they're looking at my blood results—yes, my blood result may be sky high, but I feel perfectly fine” . Conflicting evidence could lead to frustration  and fueled a sense of uncertainty.Young people emphasized the uncertainty associated with a new treatment, with respect to both its effects and challenges: “Nobody knows which one's best  … it's a bit of a shot in the dark” . New treatments were judged against other (past or present) treatments and, less frequently, the uncontrolled condition. Often the push of a certain (and intolerable) past or present treatment outweighed the pull of a future treatment: “I was willing to try it (etanercept) because I hated methotrexate” .In the face of uncertainty, treatment decisions were considered provisional and open to review. Having gathered information on treatment administration, associated restrictions, anticipated effects, and potential side effects, the approach most often adopted was “try it and see.” Ultimately the test was whether treatment made life “easier … rather than harder” . This required more than just an improvement in symptoms; also important were side effects that were at most “annoying,” minimal restrictions, and a relatively simple and stable regimen. Collectively, these things acted to increase or diminish the sense of living a “normal” life. Where life did not feel more normal, commitment to treatment waned. Commitment could be reinforced by experiential evidence acquired from suspension of treatment: “When I came off medication, and I'd flare a bit or something, I realized how much difference it's doing … that has made me understand how they are, how it is doing me good … although sometimes, some days, it feels like it's making me worse” . Both young people and trusted others described trialing withdrawal of treatment; other reasons for breaks included infection, surgery, travel, conception, and oversight.Where the impact of treatment was rapid and clear cut, as was often the case with biologic agents, the “try it and see” approach was unproblematic. However, with drugs such as methotrexate, where benefits took longer to emerge and initial side effects could be onerous, decisions were often reconsidered. Some young people (or trusted others) consulted care teams about alternatives. However, not all were aware that there were alternatives, and could wait until their next appointment to discuss them. In such circumstances the potential for unilateral discontinuation or partial nonadherence to treatment was high, with care teams becoming fully aware of young people's difficulties only when a crisis point was reached.Trusted others and health professionals perceived young people as focused on short‐term outcomes: “My worry is always years ahead, where [my daughter] wouldn't worry about [the future] at all. That will not even feature in her, in her mind” . They expressed concern that young people might not take on the longer‐term risks of, on the one hand, taking treatment and, on the other, not taking treatment: “You're giving [treatment] to them to help them live a normal life. But there's much more to it than that. You give it to them … to stop things happening that they couldn't even begin to imagine” .Short‐term concerns are more prominent in the data from young people than longer‐term concerns. The minority vocalizing longer‐term concerns had more complex treatment histories or a history of cancer in the family. More commonly, young people noted the long‐term risks briefly, framing them as low probability and easily resolved. A common assertion was that doctors would not propose treatment options if the risks were unreasonable: “The view I take is that if it's been offered to me, it's safe” . However, a small minority reflected that when beginning certain treatments, they had not appreciated that they might be taking them long term.Lack of attention to the long‐term risks was for some young people an active choice. Many stressed how difficult it was to think beyond the immediate future when life was made so challenging by their condition and/or treatment. They felt bound to accept the long‐term uncertainties or, as one interviewee put it, the “what ifs,” in order to get on with life in the short term. They acknowledged, but tried not to dwell upon, the future effects of treatment: “If something bad happens, I'll cross that bridge when I come to it. For now, it's just keeping me normal. I know that sounds a bit reckless, and I don't mean it like that, but like, I can't worry about what, you know, what would happen” .Despite the growing interest in patient preferences, to date little attention has been given to those of young people with IA. Lipstein et al Our study shows clearly how young people with arthritis, similarly to those with other chronic conditions Treatment developments in rheumatology have challenged thinking about the disruptive nature of chronic illness Our research highlights the preferences of a diverse group of young patients, but is no substitute for careful exploration of the concerns of individuals. Other authors have stressed the importance of dialogue with older patients before and after the initiation of treatment A key concern of trusted others and health professionals was young people's perceived focus on the short term. Care must be taken not to discount prioritization of short‐term gains as a reflection of the adolescent brain. While neuroscience offers plausible explanations for such a short‐term perspective, social context has been shown as important Our research has both strengths and weaknesses. The nature of qualitative work is that it is in‐depth but small scale, with a consequent strength being the richness of data and a weakness being the low number of cases. However, the body of data compiled during this study is relatively substantial and the number of participants (n = 68) relatively large. Conducting serial and triangulated interviews enabled us to confirm stories and capture evolving perspectives In conclusion, this study provides important insights into young people's circumstances and preferences and how these may inform treatment decisions. It challenges assumptions, implicit in much of the previous research, that studies of the typical  patient provide a basis for understanding young people's priorities. Our data reveal age as an important factor in the evaluation of treatment options, underpinning perceptions of “normal” life, issues achieving and maintaining this, and the consequences of not doing so. But to find out what matters to any particular young person, we must ask questions, set aside our assumptions, and listen to what he or she has to say. Only through understanding young people's values, preferences, and concerns can a sustainable balance between disease control and treatment burden be achieved.All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. Ms Hart had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.Study conception and design. McDonagh, Thompson, Foster, Kay, Rapley.Acquisition of data. Hart, McDonagh, Thompson, Foster, Kay, Myers.Analysis and interpretation of data. Hart, Rapley.


Hierarchical regression analysis indicated that reading imagery was related to phenomenological characteristics of inner speech and proneness to hallucination-like experiences. However, qualitative analysis of reader’s accounts suggested that vivid reading experiences were marked not just by auditory phenomenology, but also their tendency to cross over into non-reading contexts. This supports social-cognitive accounts of reading while highlighting a role for involuntary and uncontrolled personality models in the experience of fictional characters.Readers often describe vivid experiences of voices and characters in a manner that has been likened to hallucination. Little is known, however, of how common such experiences are, nor the individual differences they may reflect. Here we present the results of a 2014 survey conducted in collaboration with a national UK newspaper and an international book festival. Participants ( In partTo a certain extent, it is intuitive to understand why a text – even if not read out loud – would need to be voiced in some way to be read. This is sometimes conceptualized either as inner speech – namely, the various ways in which people talk to themselves  – or morReaders’ expectations of character and narrator voices can also affect how a text is processed. For instance, readers adjust their reading times for texts written by authors with a slow or fast-paced voice. People reading difficult texts, and those who report more vivid mental imagery, show greater evidence of such “author voice” effects on reading speed . When chA second strand of research has emphasized the role of social cognition in the reading experience, largely in response to literary fictional texts. Many readers strongly personify characters and narrators by making inferences about their described thoughts and behaviors  and assiTaken together, the above studies highlight some of the separate perceptual and social-cognitive processes that could explain accounts of ‘hearing’ the voices of characters. But, although the experiences they are based on are intuitively familiar, phenomenological data on the reading experience in the words of readers themselves is surprisingly lacking. Indeed, almost all of the above work has involved either experimental manipulation of texts, or analysis of responses to specific literary texts. Systematic surveys of readers’ experiences of characters in general – that is, as part of their day-to-day experience of reading for pleasure – are largely absent.Yahoo! Answers). Of these, over 80% reported vivid experiences when reading, the majority describing specific auditory properties including volume, pitch, and tone. Qualities that are perhaps more indicative of social representation – such as identity and control – were also reported in some cases, but were often hard to classify or lacking in detail. However, the open-ended structure of the source material used by We know of only one recent exception: As such, it is unclear whether vivid examples of characters’ voices – or indeed other kinds of character representation – are actually a common part of the reading experience. It could be that the act of reading about characters simply involves combining such features in an additive and largely automatic way: if so, phenomenological reports may be expected to consist of vivid perceptual imagery plus some kind of mental state representation – a clear experience of a character’s voice and their emotional state, for example. But such skills also vary considerably in the general population  and may Guardian), to survey a large sample of readers about their inner experiences. Instead of focusing on the experience of a particular text , but also their dynamics, namely the processes by which the experiences seemed to occur. While this analysis was primarily driven by the main themes apparent in the data, our descriptions in some cases required the creation of new terms or their importing from narratological and linguistic research on fictional narratives. For example, here we have used the term “mindstyle” – a concept borrowed from linguistics  without attempting a unified account of how all these aspects relate to each other and trigger other, richer processes. To address this, readers’ descriptions in our study were coded in terms of representational guistics  – to ref22.1Guardian website (‘Inner Voices’), publicity at the Edinburgh International Book Festival (EIBF) 2014, social media, and a project website (www.hearingthevoice.org). A total of 1566 participants  took part in the survey, with responses primarily coming from English-speaking countries Do you ever hear characters’ voices when you are reading?(ii)Do you have visual or other sensory experiences of characters when reading?(iii)How easy do you find it to imagine a character’s voice when reading?(iv)How vivid are characters’ voices when you read?(v)Do you ever experience the voices of characters when not reading?A reading imagery questionnaire was devised specifically for the present study based on commonly used measures of imagery, including Betts’ Questionnaire upon Mental Imagery  and the To elicit more phenomenological detail about the experience, a further question asked: ‘If you feel that you have had particularly vivid experiences of characters' voices, please describe them in the box below’. Responses up to a 500-word limit were allowed. Qualitative analysis was then conducted on the readers’ responses to this question specifically (see below).2.2.2dialogic inner speech ; evaluative/motivational inner speech ; other people in inner speech (‘I hear other people’s voices nagging me in my head’); and condensed inner speech (‘I think to myself in words using brief phrases and single words rather than full sentences’). Participants rated their agreement with these statements on a 6-point Likert scale ranging from “Certainly does not apply to me” to “Certainly applies to me”. Each subscale has good internal and test-retest reliability  analyse the relations between questionnaire measures collected in Sections k = 0.82). The coding scheme classified answers in two ways: firstly, for their general features, including presence of specific sensory properties; and secondly in terms of dynamics, or descriptions of the overall experience and imaginative process described by the reader. Although each response could only receive each code once , any given answer could be classed as having several different features and dynamics. Along with the term “mindstyle”, our novel codes included “blending”, a term used by Free-text responses from Section 33.1Less than 1% of responses were left blank in Section 3.2Within the sample, 1522 participants also completed measures of inner speech (the VISQ) and hallucination-proneness (the LSHS). Less than 3% of responses were left blank. As the internal reliability of the five RIQ items was good , scores across the five items were summed to provide a total score of readers’ susceptibility to vivid reading experiences.r = 0.25), other people in inner speech (r = 0.38), dialogic inner speech (r = 0.23), and evaluative/motivational inner speech . Reading scores also negatively correlated with condensed inner speech (r = −0.13), i.e. participants with more expanded than condensed inner speech also had more vivid reading experiences.Correlational analysis indicated that total score on the RIQ was positively related to auditory hallucination-proneness  accounting for 18% of the variance. Significant predictors retained by the model were: LSHS ; dialogic inner speech ; other people in inner speech ; and condensed inner speech . Age, gender, education level, and evaluative inner speech were all non-significant .3When these factors were assessed in a hierarchical regression model, only a subset of predictors was retained see . Using t3.3M = 41.71 words, SD = 35.26 words).Further description of reading experiences was provided by 413 participants. Free text responses ranged from 1- to 320-word answers  that I want when I read a novel.I become so engrossed in a novel that the characters become real to me. I know that they are not real, but As may be expected, descriptions of hearing characters’ voices and references to specific characters were very common, occurring in 291 cases (70%). Many participants reported a strong and vivid engagement with the characters of a text. For example, one participant stated [emphasis added throughout]:a narrator’s voice comes through, almost as if one was listening to someone reading it […]There are times when reading, that the narrative draws me in such that the words are no longer words just the world they describe. But in a few cases, a sense of 'listening' to a real conversation with varied tones and accents for me. I can also feel as if a strong first person narrative voice is “speaking” fully to me […].Well composed dialogue often creates Characters, however, were not the only voices present, despite the questionnaire focusing on characters specifically. 49 participants (12%) described vivid perceptions of the author and/or narrator’s voice in a text. For example:male and female, young and old, accents that I can't speak myself [….]I can hear , I hear them speaking with that dialect – even without relying on the author's use of it in writing what they say.When I read books whose characters are English, Scottish, Irish, or any of the strong American dialectsAuditory characteristics of voices were reported in the large majority of cases. In 80 cases (19%) this involved the specific mention of accents without any reference to other auditory properties:tone and voice inflexions depending on what the character is saying.I can hear the the tone is distinct, particular words may be over-pronounced or roll together excitedly. Depending on the situation, if the character becomes stressed or scared for e.g., the voice changes pitch and speed…Usually No other specific auditory properties were mentioned as regularly . Auditory characteristics described in 250 cases (61%) included references to volume, tone, and speed of speech:mindstyle , the experience of a character did not consist in the quasi-sensory perception of their voice, but rather their manner of speaking, thinking, and experiencing the world – i.e. their indstyle :It's notplays like a movie, I don’t really realize it while I’m reading but when I stop I go to find where I’m up to in the book and I don’t recognise reading the words but I know and have “heard” and “ seen” what has happened.Every good book I read that I get in depth with, Visual characteristics were described in 57 cases (14%). In many cases this was described as an immersive, cinematic experience:I could hear it and feel it on my neck.Lyra whispering to Will in Pullman's “His Dark Materials”. He describes the loud, busy closeness of her whisper, and , weather, smells, touch, sounds etc.It feels like I'm sharing the surroundings with the characters or simply experience the landscapeOther feelings, such as tactile or olfactory experiences, were also described in a smaller proportion of cases :3.3.2internal blending, or the process of adapting one’s own inner voice to represent a particular character or narrator. Twenty-two participants (5%) referred to “putting on the voices rather than hearing separate people” or that voices were similar to their own in some way, e.g.:a version of mine usually. I probably overlay class, accent etc.I think the voice is ” spoke very calmly and cooly but it was not very different from my own.Howard Roark in “The FountainheadWhile almost all responses provided some information of the features of vivid reading experiences, not all answers could be coded with a specific dynamic. In those that could be classified in such a way , the dynamics of vivid reading experiences were very varied. The first dynamic coded was external blending, occurring in 62 cases (15%). In this, participants drew on their experience of others’ voices to simulate a character .sounds like a friend of mine who shares many of Zooey's character traits, including a resonant voice.The voice of Zooey in Salinger's “Franny and Zooey” always the actors would generally override anything I might originally have imagined.If the book has been made into a film then I would tend to hear the actor's voice. Even if I read the book first, More common was a kind of experiential crossing of voices:my everyday thoughts are often influenced by the style, tone and vocabulary of the written work. It's as if the character has started to narrate my world.If I read a book written in first person, They continue a life between bouts of reading.Whenever I'm reading a novel I always hear the characters talking even while not reading. Slightly more frequent than both, however, were responses in which the experience of characters’ voices (or thoughts) appeared to break across into new situations, outside of the immediate experience of reading. 77 cases (19%) described this imagined what her reactions to different situations. I'd walk into a Starbucks and feel her reaction to it based on what I was writing in my essay on the different selves of this character.Last February and March, when I was reading “Mrs. Dalloway” and writing a paper on it, I was feeling enveloped by Clarissa Dalloway. I heard her voice or In some cases this was experienced just as a continuation from reading the book; as in one participant’s description of reading Virginia Woolf:Hannah Fowler, from the book of the same name was the voice I heard while walking with my family in the area of Kentucky (USA) where the book took place. I loved the book and heard her dialogue as I walked through the woods.[…]The character In others this crossing was specifically prompted by familiar or new but similar contexts, i.e. the characters would appear when it would be consistent with their own persona or surroundings:inner simulation occurred in 77 cases (19%), e.g.,see the book as a movie and I am barely aware of the pages. I hear voices, music, and other sounds as described by the author or imagined by me….I visualize and imagine what the characters sound and look like. The voices, how they express themselves, verbally and non-verbally.I can Other than this, participants would often describe their experience of voices and characters in general, non-specific terms that implied an intentional imaginative construction of characters and scenes. This dissonance of voices could in some cases noticeably interfere with enjoyment of the text. One participant, for example, stated that their experience of voices was:different they sound than the “narrator” in my head. It's the same with films; characters often sound “fake” compared to how I have imagined them.Vivid enough that when I hear an author speak, I am often surprised how A small number of responses  also described a specific sense of voices “fitting” characters in particular ways, or failing to fit following depiction by an actor or narrator. This actual voice whilst falling asleep or awakening, which can be related to what I've been reading before sleep.I have hypnagogic sleep, so will sometimes hear an Finally, 24 responses (6%) appeared to describe actual hallucinatory phenomena. Many of these described states in which hallucinations are relatively common, such as in the transition to and from sleep.4The aim of the present study was to survey phenomenological qualities of voices and characters in the experience of readers. Our results indicated that many readers have very vivid experiences of characters’ voices when reading texts, and that this relates to both other vivid everyday experiences (inner speech) and more unusual experiences . However, the features and dynamics of readers’ descriptions of their voices were varied and complex, highlighting more than one way in which readers could be said to “hear” the voice of specific characters. This included quasi-perceptual events across a variety of sensory modalities; personified, intentionally and cognitively rich agents; and characters that both triggered and echoed previous experiences and extra-textual connections.On the RIQ, the large majority of participants often “heard” character’s voices when reading, with visual and other experiences also occurring frequently. Most found it very easy to imagine characters’ voices during reading, but the vividness of this varied considerably: 1 in 7 participants reported voices that were as vivid as hearing an actual person speak, but double that proportion described either no voices being present or only vague experiences of voice. As such, the experiences reported here should be considered particularly vivid examples of auditory mental imagery, in line with an experiential – and not merely propositional – view of imagery . This isThe relevance of inner speech to this topic is emphasized by the observed relations between the overall vividness of reading experiences and individual differences in the ongoing internal self-talk reported by participants. Regression analysis indicated that participants who reported more elaborate inner speech on the VISQ – being expanded in form, containing dialogue, and the voices of others – were those who also had more vivid experiences of voices and characters during reading. This is a unique demonstration  of the more positive and valuable correlates of phenomenologically diverse inner speech, which in prior studies has correlated with anxiety, depression, low self-esteem, and unusual experiences . NotablyThe other factor relating to reading imagery was auditory hallucination-proneness (i.e. LSHS), despite the fact that relatively few participants reported character voices that were as vivid as hearing another person speak. While it is possible that these experiences may nevertheless be linked on a continuum of quasi-perceptual phenomena, the qualitative analysis of readers’ accounts sheds some light on what may link these experiences. Descriptions of vivid auditory imagery were common, but the ways in which this was experienced were highly varied: for some participants this was an intentional, constructive process, for others an automatic immersion, and for others again an experience that appeared to seep out into other, non-reading contexts.For example, one notable way in which participants talked about their experience of characters was via what we termed “experiential crossing”. We coined this term to refer to instances of characters and voices being experienced outside of the context of reading; a phenomenon that as far as we know has never been studied either in psychological or narratological research. The presence of experiential crossing in nearly a fifth of participants points towards a perfusion of voice- and character-like representations that apparently transgress the boundary between reading and thought. In some cases this was described almost as an echo of prior reading experiences, with auditory imagery re-emerging in a particular context or scenario, but in other accounts it appeared to shape the readers’ style and manner of thinking – as if they themselves had been changed by a character.mindstyle . What these data can say about the readers’ experiences of voices and characters is therefore limited by the ability of readers to report on their experiences accurately, and what experiences they choose to describe. Some have argued that readers cannot be relied upon to report on their own experiences accurately and reliably see . Moreoveprima facie factors that were important to consider. The consequences of this are twofold: (a) it may have led participants to describe predominantly auditory and agent-like experiences over other, more vivid factors , and (b) it means that other potentially relevant factors, such as transportation and absorption  to probe participants’ experiences. Similarly, our choice of other measures to include reflected this focus, as inner speech and hallucination-proneness are sorption  were notsorption  and narrsorption , and we sorption  specificsorption .Finally, it is important to recognize the nature of the sample surveyed. Having been promoted by an international reading festival and a newspaper with global readership, the sample surveyed is much larger and more diverse than most studies of fiction and narrative, which primarily use undergraduate samples. However the sample is still not necessarily representative of a general population, as it is likely skewed towards a well-educated, highly literate readership who may be passionate about fiction (71% reported enjoying reading classics) but engage very little with other genres (only 4% read books on sport). It was also completed by three times as many women as men. As such, the extent to which these results can be generalized to the wider reading population is limited.Despite these concerns, the present study is to our knowledge one of the only large-sample phenomenological surveys of the reading experience. We argue that the combination of questionnaire items concerning vivid reading experiences in general and more detailed, qualitative analysis of free-text answers offers a broad and varied resource on what it is like to engage with voices and characters in a text. Accounts of the kind collected here pave the way for further analysis of the role played by the reader’s “experiential traces”  in relatAnd while our data support the existence of vivid voices and characters in the experience of readers, they ultimately highlight a wide range of quasi-sensory qualities and simulatory dynamics in the reading process. As in debates on mental imagery , the rea