Objective. Describe perceived cause, environmental influences, and consequences of falls or near-falls in ambulant adults with cerebral palsy (CP). Methods. Adults with CP completed postal surveys and follow-up semistructured interviews. Surveys sought information on demographic data, self-nominated Gross Motor Function Classification Score (GMFCS-E&R), falls, and near-falls. Interviews gathered additional information on falls experiences, near-falls, and physical and psychosocial consequences. Results. Thirty-four adults with CP participated. Thirty-three participants reported at least one fall in the previous year. Twenty-six participants reported near-falls. Most commonly, falls occurred indoors, at home, and whilst engaged in nonhazardous ambulation. Adults with CP experienced adverse falls consequences, lower limb injuries predominant (37%), and descriptions of fear, embarrassment, powerlessness, and isolation. Discussion. Adults with CP may experience injurious falls. Further investigation into the impact of falls on health-related quality of life and effective remediation strategies is warranted to provide comprehensive falls prevention programs for this population. Cerebral palsy (CP) is the commonest cause of neurological disability in childhood . With noThe issue of falls in adults with CP is of concern, as persistent falls may occur earlier than the typical “older adult” focus in nondisabled populations. One or more falls in the previous two years has been reported by 18% of a normative group aged 20–45 years and 21% of a normative group 46–65 years  showed tPrecipitators, patterns of injury, and psychosocial outcomes have been well published arising from falls in older adults and those with acquired neurological disorders , 11–13. Emerging evidence suggests that moderate or serious injuries do result from falls in adults with CP  and peopThe aim of this preliminary mixed methods study was to explore the lived falls experience of adults with CP. Specifically, this included an exploration of the perceived cause, environmental influences, and consequences of falls and near-falls in ambulant adults with CP. A further aim was to explore the relationship with falls and age in adults with CP.Ethical approval was gained from Monash University . The study comprised two elements, an initial survey and a follow-up semistructured interview.Flyers advertising the study were placed at physiotherapy clinics, health facilities, and community agencies. Interested participants were invited to contact the researcher whereby further information about the study was provided and a short interview clarified inclusion criterion. Inclusion criteria for the study were adults with CP (age 18–65 years), with Gross Motor Function Classification System–Expanded & Revised (GMFCS-E&R) levels I–III . ParticiA survey was developed and piloted whereby consumer feedback was sought regarding the language, descriptors, and layout. The survey was then modified to improve clarity. The survey provided initial lay-definitions of both a fall   and nearParticipant demographic characteristics were recorded in the areas of age, gender, and CP subtype (if known) . CurrentParticipants recorded their estimated number of falls in the previous 12 months. A series of linked survey questions probed the circumstances and consequences of the individual's most recent fall, either by selection of multiple choice items or by open questions (free text options). Thus participants reported the likely fall cause  , locatioA semistructured interview guide was developed to explore the following topics: experiences of falls/near-falls; perceptions of change in falls and/or near-falls type and frequency since adolescence; physical health consequences of falls/near-falls; and psychosocial health consequences of falls/near-falls. To clarify responses and identify examples, the interviewer rephrased the questions and asked follow-up questions if required . The intA mutually convenient interview appointment was made for participants who chose to be interviewed. Interviews were conducted face to face at the person's home, with the option of a telephone interview if geographical distance necessitated. A consent form was forwarded seeking signed permission for participation, audio-taping of the interview, and subsequent transcription. The interview lasted up to an hour, with rest breaks available if requested. Two research assistants conducted the interviews. The interviewers, a final year health science student and a physiotherapist, had basic knowledge in disability care and had no treatment connections with the participants. The interviewers completed a mock interview on another member of the research team to refine their interview technique prior to commencing data collection. rho (rs) correlation coefficient, with significance set at P < 0.05.Quantitative data were entered into the SPSS statistical software version 19.0 . Descriptive statistics were used to report age, gender, CP subtype, GMFCS-E&R level, reported falls, and reported near-falls. Based on the methodology used by O'Loughlin and colleagues , particiText responses regarding the most recent fall were entered into a spread sheet. PM and a research assistant independently matched responses against categories previously defined by Hill and Stinson  to descrInterview data were transcribed to written text, checked by a second researcher, and then imported into Nvivo software . Researchers used a phenomenological approach to uncover the meaning of an individual's experience of a specified phenomenon  through focusing on a concrete experiential account grounded in everyday life . AnalysiData from the interviews were nested within the qualitative analysis in order to produce greater insight and give deeper context to the quantitative results than would be gained by a single method. Furthermore, the qualitative data enabled the gathering of the specific language and voices about experiences with falls as described by this population .The mean age of the 34 adults with CP who participated in the study was 44.2 years . Nineteen participants were female, with ten each of spastic bilateral and unilateral CP subtypes. There were four each of the subtypes of athetoid and mixed (athetoid/spastic) with remainder unknown or unstated. Five participants rated their gross mobility as GMFCS-E&R Level I, 14 as GMFCS-E&R Level II, and 15 as GMFCS-E&R Level III. The participant group is reported elsewhere .rs = −0.261, P = 0.136).Thirty-three of 34 participants reported at least one fall in the past 12 months, ranging from no falls to an estimation of 200 falls, that is, around 4 falls per week . Further details regarding the falls profile of the participants are provided in n = 33)  and 28 participants were classified as frequent fallers (fell > 2 times). Frequent falls were experienced in individuals across all levels of mobility ability, with 5/5 frequent fallers at GMFCS-E&R Level I, 11/14 at GMFCS-E&R Level II, and 12/15 at GMFCS-E&R Level III. The activities being undertaken at the time of the most recent fall (n = 33) , location = 33) . Two injn = 33) .Six participants , five female, were self-selected from the original cohort for the follow-up interview. Five interviews were performed face to face, with one being completed via telephone. Three participants were at GMFCS-E&R Level II, and three at GMFCS-E&R Level III. Five of the six interview participants lived with family members or defacto, and three were currently employed .A range of experiences regarding perceptions of falls and near-falls and the physical and psychosocial health consequences of these were described throughout the six interviews. Key themes that emerged were experiences of falls and near-falls and the impact of falls on physical and psychosocial health. Key themes and qualifiers are summarised in “falling over is just a part of life, I do not enjoy it but there's not much I can do about it” (Participant 5) and “I can fall over in the kitchen and nobody sees me, I do not give a s…, I do not even remember ok? I just pull myself up and get on with my life” (Participant 5).Other participants echoed this concept of tolerance of falls that had been experienced over an extended period of adulthood: “I had a really big fall just a couple of days ago…but you just have to get up and keep going” (Participant 6)or“falls being second nature, you learn to get on with them” (Participant 2).This implied that the falls experienced by adults with CP were not troublesome nor something to be overly concerned about, but a normal inoffensive part of their day that they had learned to live with as they “got on with their life.”By middle age (40 years onwards), most adults have established a routine in their daily life involving repetition of activities, employment, leisure, and relationships. Most people accept that part of living or “getting on with life” is dealing with minor obstacles or challenges along the way through either resolving that challenge, eliminating that obstacle, or developing tolerance or acceptance of the renewed situation . All int“I was falling a lot - up the stairs, in the hallway, walking along the street, uneven surfaces, flat surfaces, it just did not matter…” (Participant 3). This risk awareness was not necessarily related to falls frequency, with concern expressed by all participants regarding the potential for falls and the adverse impact of falls. For those who were not frequent fallers, managing the increasing falls risk had become a more prevalent aspect and an important focus of their daily life: “Even though I do not fall that often I'm constantly aware of it” (Participant 4).The experience of falling throughout adolescence and young adulthood was becoming more problematic and more intrusive in daily life for some interviewees as the impact of the falls increased. A greater awareness of the potential to fall and the reality of a fall was now more dominant, requiring attention and focus in a range of environments:“I've always fallen over, but I was able to get up, and just dust myself, and get on with life. But now, if I fall over, I cannot get up. So I'm sort of like a beached whale” (Participant 1).In addition to the fall itself, an increased awareness of the need to manage the sequelae was also becoming a necessity. For those who have valued independence in mobility, a fall could potentiate an inability to get up off the floor resulting in increased dependency. This added to the impact of a fall and required sustained attention to reduce the subsequent risk:“I did some pretty awful damage to an elbow, I dislocated a finger, I ended up having a CT scan because I fell down the stairs and landed on a wall headfirst” (Participant 3), and “I'm finding out that when I fall over, I cannot get up, and it causes me to get…have so much pain in my lower back, and I've broken it, so every fall I have, whether it's just…even if it's a near miss, where I've jolted myself, I have to take Valium” (Participant 1).The impact of falls on physical health was a focus of many participants' interviews. For any adult sustaining an insult to their physical health, there is the immediate pain or “crisis,” followed by a period of recovery that can be relatively brief or long term. Adults with CP reported increasing concern with the adverse physical consequences of a fall, with descriptions of musculoskeletal damage to arms, hands, head, and spine and resultant symptoms of stress. They reported a range of short and longer term physical injuries as a result of falls that had minor or more serious implications, although these were typically reported in a pragmatic manner:“I broke a tiny bone in my hand from falling and it meant that my hand was out of action for 6 weeks. I had to go to hospital, had to be in plaster. How do you push a wheelchair with one arm in plaster? It was just an absolute nightmare” (Participant 4).One participant described the serious consequence of a minor physical injury from a fall:“scared, worried, concerned about the future” (Participant 4); “I constantly have near misses, every day. And they do scare me quite a bit” (Participant 1). In contrast to earlier expressions of tolerance and acceptance, psychosocial subthemes of fear, embarrassment, powerlessness and isolation were identified. In alignment with reports of fear of falling in older adults, most participants associated the falls and near-falls with negative emotions related to fear or increasing concern and described the subsequent adverse impact on their psychosocial health:“You do that  in a public place and everyone is like ‘adults do not fall over, little kids fall over…', so it's very embarrassing. It's something that I should get over but I haven't” (Participant 5) or“ I'm getting too old to fall, I'm 42, I cannot get away with it anymore. When you're a kid you can get away with it and everyone thinks you're being an idiot but I just cannot tolerate it anymore” (Participant 3).Participants described incongruence between their perceptions of appropriate adult and childhood motor behaviour, with “falls” being associated with more immature activity, a feature that should not persist into adulthood. Several participants described the embarrassment, humiliation, and negative impact on their self-esteem of continued or increased falls throughout adulthood:“One time I fell on the road and I couldn't get up and then I couldn't orientate myself and I'd fall again, I must have looked like a drunk” (Participant 3). For one participant, repeated falls were particularly problematic, resulting in disorientation and concerns of negative perceptions of self by others. The humiliation that arose from the public fall was particularly difficult to endure: “I've always valued my independence, and that's the thing that I miss most” (Participant 1) and “I'm not chronically depressed about it or anything but it's sad to know that I cannot really fix anything  so I just have to go day by day and do the best I can” (Participant 4).Adults typically value control over their health. Some participants acknowledged adverse mood, depressive symptoms, or feelings of “loss” associated with their experience of falls and subsequent repeated injuries. A sense of powerlessness arose associated with the unpredictability but inevitability of the ongoing and escalating falls behaviour: “now that I do not have that balance, I cannot negotiate the steps, which has really curtailed my social life” (Participant 1).The falls, near-falls, declining balance, elevated falls risk, and associated health complications added to a strain on some people's capacity to maintain social contacts with a consequent developing sense of isolation:This study reported falls frequency, falls precipitators, and consequences  and the relationship of falls to age for a group of ambulant adults with CP. There is a dearth of information in this area regarding the prevalence and consequences of falls in this group in order to guide both adults with CP and health professionals in best practice in falls prevention and management. Furthermore, there has been limited emphasis by both health care providers and health care seekers, on falls in those growing older with CP who may have experienced a “life time” of falls and near-falls.Almost all survey respondents (33/34) reported one or more fall in the previous 12 months. This is an alarming number, exceeding that previously identified , 10 and In normative populations, falls frequency is typically low in those under 65 years . This stSerious injury reports by this cohort are slightly higher than that published after falls in older adults 5–10%)  and prev–10%  andAmbulation has been cited as the predominant activity undertaken prior to a fall in normative studies, in all gender and age groups . In the To our knowledge, there have been no other qualitative studies describing psychosocial consequences of falls and near-falls experienced by adults with CP. It was apparent from the interviews in this study that although falls had been a frequent occurrence throughout adolescence and young adulthood, with many acquiring “expert faller” status , the incAdults with CP may have lived their life managing mobility and balance difficulties and hence may be quite used to experiencing falls, finding them a not unexpected disruption. Interestingly, there was tension in the qualitative data between the two themes of “getting on with life” and adverse psychosocial effects . For all participants, both themes were alluded to within the same interview, although often the “getting on with life”  was the first theme to be raised. It may be that as familiarity with the interviewer developed over the session participants became more willing to expose their vulnerabilities. This study suggests that even those who have a long history of falls may find the ongoing falls experience or escalating falls experience intolerable in adulthood, with adverse psychosocial consequences. This phenomenon has not previously been described. Less than half of a large cohort of adults with CP surveyed by Jahnsen and colleagues  reportedSix community falls were reported by this cohort, of which two required ED attention. There is increasing public interest in accessibility for people with disabilities. For example, both US and Australian standards , 46 for The main limitation of this study was a bias in selection. A sample of convenience was sought through advertisements at clinical and community facilities, resulting in bias toward those who may already identify concerns regarding falls. It is also possible that recall bias influenced both underreporting and overreporting of falls details. However, we would argue that subjective experiences, such as falls are best explored by collecting data directly from those who experience them, rather than third party reports, although there is a risk that survey questions may be misunderstood or interpreted differently by the participant . In addiIn conclusion, this study has illustrated that adults with CP may experience falls and incur both adverse physical and a range of psychosocial consequences. Falls may occur due to balance dysfunction, occur indoors and outdoors, and occur predominantly at home and whilst people are undertaking nonhazardous activities. Further investigation into the impact of falls on participation, health related quality of life, and effective remediation strategies is warranted in order to develop appropriate falls prevention strategies for this population.


Self-management has received growing attention as an effective approach for long-term condition management. Little is known about which outcomes of supported self-management are valued by patients, their families, health professionals and those who commission self-management services. This study systematically reviewed published empirical evidence in accordance with PRISMA guidelines to determine the outcomes of self-management valued by these key stakeholder groups, using three prominent exemplar conditions: colorectal cancer, diabetes and stroke.To systematically review the literature to identify which generic outcomes of self-management have been targeted and are considered important using three exemplar conditions , which collectively have a range of features that are likely to be representative of generic self-management issues.Systematic searching of nine electronic databases was conducted in addition to hand searches of review articles. Abstracts were identified against inclusion criteria and appraised independently by two reviewers, using a critical appraisal tool. Synthesis of findings was conducted using mixed research synthesis.Over 20,536 abstracts were screened. 41 studies which met the review criteria were fully retrieved and appraised. The majority of evidence related to diabetes. Few studies directly focussed on stakeholders’ views concerning desired self-management outcomes; the majority of evidence was derived from studies focusing upon the experience of self-management. The views of health care commissioners were absent from the literature. We identified that self-management outcomes embrace a range of indicators, from knowledge, skills, and bio-psychosocial markers of health through to positive social networks.Patients’, families’, health professionals’ and commissioners’ views regarding which outcomes of self-management are important have not been clearly elicited. The extent to which bio-psychosocial indicators relate to successful self-management from the perspectives of all groups of stakeholders is unknown. Further investigation regarding which self-management outcomes are considered important by all stakeholders is necessary to guide the commissioning and design of future self-management services. Long-term conditions (LTC), or Chronic diseases, are health problems that require ongoing management over a period of years or decades . LTCs arThe provision of support to enable patients and families to be confident and capable in managing health conditions underpins effective SM ,10. VariSM support interventions for LTCs use a diverse variety of outcome indicators to assess effectiveness. A recent review of research identified over 70 different potential variables used to evaluate self-management programmes . ResearcA scope of the outcomes commonly targeted by self-management support interventions, and which are valued by stakeholders, is urgently needed to inform future practice and research. This systematic review and mixed research synthesis specifically aims to investigate which generic high level outcomes of self-management have been considered important by differing stakeholders thus far.*In the UK context, commissioners are responsible for planning, agreeing and monitoring health services.www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42014.007316.)A mixed-research synthesis was adopted. Mixed-research synthesis  allows bTo focus the review, three exemplar conditions, where SM features as a major component and which reflect a range of factors relevant to SM, were selected: diabetes (type I and II), stroke and colorectal cancer. Each condition has markedly different disease trajectories, treatments and core care pathways and generates differing physical, social and cognitive issues. Consequently, SM foci vary in each: SM for stroke focuses upon recovery and adaptation ,36; for Published literature was systematically searched using the following electronic databases; Allied and Complimentary Medicine database (AMED), British Nursing Index (BNI), Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMbase, Medline, Psychinfo, Web of science, in addition to hand searches of reference lists of review articles. A formal database search strategy using a combination of free text search terms and subject headings was created in consultation with an information scientist (VF). This is shown in Studies were restricted to English language reports. Since little is known about the preferences of stakeholder groups, and which study design these might be represented by, inclusion criteria were kept broad and were not excluded based on the length of time that a person had been living with the condition. Studies which arguably have relevance to self-management, for example, secondary prevention or shared decision making, but which did not use the terms self-manag* or self care*  were notEmpirical literature published 1995–June 2014Studies which specifically concerned self-management in relation to diabetes, stroke or colorectal cancer. Studies where treatment was completed and where treatment was ongoing were included.Inclusion criteria:Study populations under 18 years of ageGestational diabetes.Exclusion criteria:Empirical evidence derived from any research design was included. Papers were not excluded on the basis of quality judgements; however, quality was rated to aid interpretation of findings. In the absence of a critical appraisal tool suitable for comparing quality across different study designs, we adapted a tool developed by reviewers at the Evidence for Policy and Practice Information centre ,45 throuTitles and abstracts were independently screened for inclusion by two reviewers (EB & JE). Abstracts which met the inclusion criteria were rated in terms of relevance to the aims of the review on a 1–5 scale using pre-established criteria . DisagreManagement, synthesis and analysis of findings were conducted by EB and JE using NVivo 10 software for qualitative data analysis . Qualita20,536 citations were retrieved in total. After the removal of duplicates and non-English language papers, 901 abstracts were screened, those not meeting the inclusion criteria were excluded. Of 427 abstracts, 306 were relevant to the aims of the review . 41 abstThose studies which scored ≥3 stars originated from 13 different countries, most predominantly the USA and UK . A varieThe mean quality score for the 40 included papers was 10.26 (range 3–14). Inter-rater reliability for quality ratings was strong at 0.742 (Pearson’s’ r). No paper explicitly aimed to seek stakeholders’ views on valued SM outcomes. In quantitative papers preferred outcomes were inferred from indicators used to measure the effectiveness of interventions: in qualitative papers, they were discernible from participant’s perspectives on and experiences of SM and SM support more generally. Studies rated at ≥3 stars provided data from the perspectives of patients (n = 1620), health professionals (n = 1559), and family members (n = 44) . CommissSix broad themes were identified which together describe the self-management outcomes in use expressed in the included papers; applicable knowledge, independence, positive network, being me, self-management skills and attributes and optimal bio-psychosocial health. No outcome can be claimed to be more important than the others. Each theme is next described and evidenced using exemplar data extracts. Quotation sources have been identified in parentheses using the information provided in the primary source; where this is absent it is because it was not reported upon in the primary source. ‘‘I would like them (patients) to have their own monitoring systems, we try to get education classes. The problem is they haven't been taught how to buy healthy food”, family members (stroke) and health professionals (diabetes). There were, however, differences in how knowledge was conceptualised. Diabetes health professionals advocated knowledge that was focused around the diabetes disease process and prevention of deterioration:‘‘I know what to do, but not how, it’s not realistic”(diabetes )‘‘People  give you such broad useless information…but there must be some parameters in which I could work”‘‘ I have tried to get it (medicine) on the phone, but they never answer… a machine answers in English and I don’t understand anything”.In contrast, patients with diabetes and colorectal cancer wanted personally relevant knowledge that was applicable and sensitive to their personal situation. Patients often received knowledge, but found it difficult to access or apply, or irrelevant to their cultural identity:‘‘I think continuity is important, seeing the same people  and not get different advice from different people”The bulk of the evidence for this theme was generated from the patients’ perspective. One quantitative study concerning family members’ perceptions of self-care needs following stroke  identifi‘‘I believed in the medical system- stupid me. There was so much concentration on the importance of tests that you didn’t need to pay any attention and you ignored what your body was telling you because the tests told you something else.”“We don’t know to whom we can trust. Every doctor says something (different)”Conversely, some research reflected patient’s views that health systems and professionals were not the primary source of knowledge, preferring to trust their own knowledge of their bodies and diabetes:Based on the included papers, condition knowledge appeared to be a key outcome to target in self-management support, however patients and families wanted different forms of knowledge, tailored to their situations, compared to a perceived emphasis by health professionals on disease specific knowledge.and being independent from others:‘‘ My husband says 'come let me do it!'…I always have to explain that I want to do that myself”.Family members’ perspectives on independence were not evidenced. Common to all three conditions, patients viewed independence as a desired outcome of self-management. For patients, this meant both independence over the areas of health and well-being important to them, and which they felt confident to manage, Physical independence, in particular to avoid being a burden to family members or dependent on health professionals, was also an important aim for patients.‘‘That is my goal, to remain independent, and of course, I do not ever want to become a burden to my sons”(T2 diabetes patient )‘‘That gives me control, and that's what I was striving for, I don't want to be reliant on a nurse to control my blood sugar level”.Independence seemed to relate to having control over and responsibility for managing the condition. However who had ultimate responsibility for control of the condition was not always made explicitly clear for patients.‘‘I thought my doctor had the responsibility for all this (diabetes). But now I understand that it’s me. I have to make the decisions myself, and I feel that I have taken control”.‘‘empowering them (patients) to maximise their potential from within themselves”  the patient taking ownership for guiding their therapy”. Descrierapist, ).‘Empowerment’ was identified as an important outcome indicator of a self-management education intervention co-created with people with diabetes  suggestiFrom the perspectives of patients, a positive social network that contributed towards an individuals’ ability to manage their health and well-being was both an important outcome of self-management, and a factor important to enabling successful self-management. The perspectives of health professionals and families were not evidenced in the selected papers. Two clear contributors to a positive network were identified; informal relationships and health professionals and services.‘‘It’s another thing to talk to someone who has gone through the treatment” …it's been very lonely” . ‘‘It’siabetes, ). People‘‘My wife is my manager, self-management is something you do together.”.‘‘It is best to be united in taking care of the diabetes. Take supper, for instance. My wife, she’s on low-calorie diet, so we actually have to eat the same thing. I think it’s easier when we are two.”.‘‘I need to feel my doctor is interested in my health, I need to feel I can talk to him and he is trying to understand me” .‘‘My doctor is maybe 90% medicine and very little information of what to do”.Evidence from the selected papers suggests that the relationship between patients and health professionals is fundamental to ensuring professional support for self-management is effective. Patients, across all conditions, expressed a need to be treated as individuals by health professionals: patient, ). People‘‘When I have eaten a lot of sweet fruits, for example almost a kilo(gram), I try not to eat anything one week after, especially before I see the doctor for a blood test”..‘‘ I would take the insulin with me and went out to a pub or something and have a beer with dinner… Sometimes I’d be having low blood sugars or high blood sugars and it was a hit and miss sort of thing. But I didn’t tell anybody. I didn’t tell my nurses that I was doing that because they had said this is how many units of insulin you need to be taking”.Within diabetes, where lifestyle-related behaviours are particularly important to management, patients often sought to create a ‘good impression’ and broker a positive relationship by appearing to follow health professionals’ recommendations. Some patients wanted to fit the ideal of the "perfect patient," one who conforms to the "ideal standards," even if this meant concealing behaviour:‘‘I missed [having] somebody to guide me after discharge—to stay active, to direct me”  is usually very accessible and I feel strong support from her”. . In conpatient, ).Both formal and informal elements of support appeared to contribute to patients feeling enabled to self-manage and were important outcomes for self-management interventions from the perspectives of patients and professionals. Recognition is needed that developing positive support networks is a process necessary to aid self-management.‘trying to be as normal as possible and trying to just be you’ .Patients from all three conditions expressed a sense that their respective health conditions should not define nor dictate their lives. There were slight differences between conditions. Following colorectal cancer and stroke, people often talked in terms of regaining their pre-diagnosis lives: ‘ patient ).‘‘keebe normal”  part of your life! This is self-management! I always integrate diet and exercise into my daily life” , this w patient ). People patient ), ‘‘It’sdiabetes ). Peoplediabetes ). Unlessdiabetes ).There was evidence from health professionals, patients and family members of people that a positive outcome of self-management support would be for patients to develop the skills or attributes necessary to assist management of health and well-being. Diabetes health professionals felt that patient motivation for self-management was a key requisite of success. Goal-setting was also cited by stroke and diabetes professionals as a key self-management skill , 71. In ‘‘The physical pain is bearable, but the emotions and grief. . . there are no ‘emo-tablets! “‘(stroke patient )‘‘They don't give you nothing for stress they never talk to you about stress.”‘‘Personally I would like to see some sort of survivorship audit where they’re looking at…. and also stress and anxiety … which is as much a side-effect as diarrhoea and neuropathy”.Patients from all conditions identified the need to develop skills in managing emotions and stress in order to maintain health and well-being.My patient was a brilliant example of how important self-efficacy is for success in rehabilitation and self-management”  that I probably would be in much worse physical shape, and I probably would have had many more complications, and I probably would have been killed by some over-zealous intern or whatever defining it as for my own good  stay around a little bit longer so I can take care of my family” . Family patient .Achieving optimal health appears to be a result of a complex interplay between three equally important elements, physical, emotional and social health. An important outcome of self-management may therefore be the achievement of optimal biological , psychological, and social health.This review is the first to investigate the outcomes of self-management that are valued by differing stakeholder groups , drawn from international research and from a range of study designs. Our review and synthesis demonstrate different emphases and interpretations of the outcomes that matter between stakeholder groups.Commissioner / decision-maker / policy maker views are not represented in our review, despite extensive search terms, which were developed with assistance from an information scientist and which attempted to capture this. Such decision makers are responsible for funding services that support self-management, and have a key role to play in the shift in culture and values of health systems towards supporting self-management , yet thevalue that different stakeholders place on these outcomes; this is beyond the scope of this review. Our review found that self-management outcomes for patients included a focus on the maintenance and prolonging of health and independence. Patients in our review identified that receiving support for self-management which is meaningful and relevant to the context of their lives is an important outcome. However, services often focus upon process driven outcomes, such as length of stay, or change in blood glucose, without necessarily considering the meaningfulness of this for the patient [We identified that SM outcomes embrace a range of indicators, from knowledge, skills, and bio-psychosocial markers of health, through to ‘being me’ and having positive social networks. There were differences between stakeholders with regard to the outcomes of self-management which were identified . Identif patient . Therefo patient ,80. PatiDespite wide acknowledgment that families play an important part in self-management support , 82 few In healthcare, there may be an overreliance on the use of biomedical markers as indicators of health care quality and self-management support . In the Our findings indicate that whilst there was consensus around broad outcomes, different stakeholders often appeared to interpret the same outcomes in different ways and emphasised the value of different aspects of those outcomes. This is likely to relate to different stakeholder conceptualisations of self-management and self-management support . How conand, to be meaningful to all stakeholders, seek to select outcome measures that capture outcomes generated from and/or are relevant to stakeholder perspectives [The majority of evidence included in the synthesis was generated from patient and health professional perspectives, indicating a need for the perspectives of other stakeholder groups to be more thoroughly investigated. For the purposes of this review, three conditions were selected for potential differences in self-management foci, however the majority of included evidence was generated from diabetes (32 of 40 papers). Other long-term conditions may feasibly generate different outcomes of value, which should be considered as the self-management knowledge base develops. Given that an aim of this review was to prioritise studies which explicitly sought different stakeholders’ perspectives, it is unsurprising that the majority of evidence originated from qualitative findings. The majority of potential research identified was excluded  because there was no rationale stated for the outcomes selected. Feasibly, authors of the identified studies had acceptable justification for the selection of outcome measures but overlooked specifying this, narrowing the potential evidence and representing a possible limitation of this synthesis. In future trials of self-management, and as set out by others, researchers should clearly specify the theoretical link between the measure and self-management pectives , 91.per se. Additional evidence may be available from studies that did not explicitly specify they concerned self-management, but nevertheless have a similar focus, for example on health behaviour change or secondary prevention. A lack of evidence for the importance of an outcome is not necessarily a reflection of a lack of importance to the different stakeholders but, rather, may reflect a lack of previous research explicitly seeking their views on this topic. Further research is therefore required to build on these early findings from the existing literature to identify which outcomes of self-management are important from the perspectives of differing stakeholders.This review and synthesis is not without some limitations. No included study explicitly focused upon the outcomes of self-management The absence of a universally recognised quality criteria tool for studies drawn from mixed research designs is a limitation. Although studies were not excluded on the basis of quality, quality judgements from well conceptualised and validated assessment tools would add rigour to interpretation of these findings. Arguably, the methodological quality of most of the included studies was weak . OverarcThis review identified which SM outcomes have been articulated by different groups of stakeholders. Although the quality of evidence is limited, we identified that SM outcomes should embrace a range of indicators, from knowledge, skills, and bio-psychosocial markers of health through to positive social networks. An important subject that ran through the findings was the need for SM outcomes to be applied to patients’ everyday lives. Few studies have sought to explicitly identify the desired outcomes of self-management from the perspectives of stakeholders, and commissioner perspectives are currently absent. Further research is required to identify both the conceptual underpinnings of self-management from each stakeholder perspective and which self-management outcomes they consider important to guide the commissioning and design of future self-management services.S1 Fig(PDF)Click here for additional data file.S2 Fig(PDF)Click here for additional data file.


Background: Despite its benefits and importance, clinical counseling affects the patient both psychosocially and socially. Illness labeling not only leads to many problems for patient and his/her family but also it imposes high costs to health care system. Among various factors, doctor-patient relationship has an important role in the clinical counseling and its medical approach. The goal of this study is to evaluate the nature of clinical counseling based on critical approach.Methods: The context of research is the second major medical training center in Shiraz, Iran. In this study, Critical Conversation Analysis was used based on the methodologies of critical theories. Among about 50 consultation meetings digitally recorded, 33 were selected for this study.Results: Results show that the nature of doctor-patient relationship in these cases is based on paternalistic model. On the other hand, in all consultations, the important values that were legitimated with physicians were medical paraclinical standards. Paternalism in one hand and standardization on the other leads to dependency of patients to the clinic.Conclusion: Although we can’t condone the paraclinical standards, clinical counseling and doctor-patient relationship need to reduce its dominance over counseling based on interpretation of human relations, paying attention to social and economical differences of peoples and biosocial and biocultural differences, and focusing on clinical examinations. Also, we need to accept that medicine is an art of interaction that can’t reduce it to instrumental and linear methods of body treatment. Generally, two macro-approaches can be defined as to this subject. The first approach is related to sociological Parsons’s theory2 and his definition of ‘sick role’ model at the doctor- patient relationship. According to Parsons’ sick role, ‘we may distinguish the role of patient as the recipient of the services of a scientifically trained professional physician’.2Doctor-patient relationship is an important subject in medical sociology and anthropology of medicine. Although this topic dates back to the time of Plato,Critical approach that has developed in sociological and anthropological theories. This approach is based on the critical paradigm, the main debate of which is that human life consists of the hermeneutical, interpretive, and humanistic dimensions. So, human life is complex and meaningful, based on its cultural and historical context. ‘In a crucial theoretical move, the critical theorists pointed out that the ideals of objectivity, efficiency, prediction, control, and value-freedom are themselves values’.3 Habermas and Foucault are two prominent thinkers that have had a critical view against the modern science including medicine.4,5Another approach has defined This research has focused on the nature of clinical counseling as a main issue at medical sociology and anthropology of medicine. So, the goal of this study is to evaluate the doctor- patient interaction, with a critical approach and emphasis on the nature of this relationship in clinical counseling. The significance of this research is due to two issues.6 Despite these changes, costs of medical care in Iran are very high.7-9 This is due to expensive costs of various medical tests and paraclinical examinations. It seems that the widespread social changes, weakness of critical approach in medicine in Iran, commercialization of medicine, legal obstacles in medicine, and socio-cultural issues are related to this problem. Many of these issues can be explored in Clinical Counseling. When a patient is consulted, the doctor’s approach has the main effect on his/her management of disease.First, Iranian society is in transition while experiencing expansive transformations in different societal arenas including the medical system.th of April 2012. The Plan contains about 19 instances of the concept of “ethics”, the first three principles of the document being concerned with ethics, accountability, and justice.10 Because one main part of clinical counseling is related to medical ethics, this research focuses on the doctor-patient relationship in the clinics with a focus on ethics. So, the research questions this study are:On the other hand, Iranian health care policy-makers’ consideration of ethical issues reveals the second importance of the topic at stake. The Islamic Republic of Iran’s Development Plan was approved by Board of Ministers on 14-What is the fundamental construct used as the criterion for diagnosis in clinical counseling?   -How is this construct represented in the doctor-patient interaction and how is it linguistically circulated?  -What other constructs can be represented or conceptualized by this construct? 11 these cases were purposively selected due to their close representation of the objective of the present study. Accordingly, sampling depends on the goal of the research11 and the researcher’s interest. It means that which sample is useful for the study to fulfill the research aim. Despite a range of sampling in qualitative research, in this study, available samples were used, i.e. the samples who were willing to participate in the research since any reluctance could lead to research bias.Based on the qualitative research, the sampling in this study was purposive. Selecting the sample in qualitative research, particularity in case studies, is purposeful. Since the investigator’s sampling strategy depends ultimately on the study’s aim,The study was conducted in the second major medical training center of Shiraz city, southern Iran. The researchers consulted a number of doctors of the Medical Center about the study, and the purposes of the study. 9 doctors accepted to participate in the study. Obtaining consent was done orally.  12 Thus, according to ethical considerations, the names of the doctors and patients were kept confidential. The conversations were recorded in Jan. 2014. So, among about 50 consolations recorded, 33 were selected for the case study. This selection was done based on qualitative logic named saturation. When new data doesn’t yield any new concepts, saturation happens.About 50 consultation meetings were digitally recorded. Throughout all of the stages from recording the conversation to preparing the paper, the researchers followed the ethical codes of American Sociological Association.13 The overriding goal of critical analysis is to evaluate various dimensions of formation of a discourse in unequal relations of power. Because, according to Foucault, discourse is composed of two major elements, namely, knowledge and power, critical approaches seek to study the effects of such relations on particular social issues.  Gee has similar views indicating that critical approach beside the descriptive presentation of interactions in social relations also focuses on distribution of power and goods in interactions.14Method of analysis is Critical Conversation Analysis (CCA) that is based on the conversation analysis (CA) and critical discourse analysis (CDA). Different approaches have been proposed for conversation analysis. According to Fairclough, these approaches could be divided into two categories: critical and non-critical. Critical approaches not only describe discursive practices, but also present the relations of power and ideologies, and discursive effects upon social identities, social relations, and systems of knowledge and belief.1,15-18 In the present study, models of Mishler15 and Fairclough13 were drawn on to evaluate a case of doctor-patient conversation from a critical perspective. Based on the model under the study, there is an interaction control exerted by the doctor in interacting with his/her patients. In this study, the aspects of this interaction were analyzed by selecting 33 cases out of 50 consultations of doctor-patient relationship that was evaluated critically with an emphasis on the notion of interaction control.As mentioned above, critical approaches to doctor-patient relationships have been studied by some researchers through mostly interdisciplinary methods.19 The second reason is the nature of this research. Because this is based on the critical view and our approach was critical to engage physicians’ interactions; the use of member check has its own ambiguities. So, we used  new validation strategies.In any research project, one main topic is validation. Because this research is a qualitative study and specially was focused on the poststructuralist method, we dealt with other issues for validation. One general approach in the qualitative research is member check. We did not use this method for two reasons. First, it is related to the problems of member check that was referred to by Marvasti.20 This means that the researcher must observe ethical issues more than other issues. On the other hand, according to Riessman, one criterion of research validity in qualitative research is trustworthiness. Riessman offered persuasiveness, correspondence, coherence, and pragmatic use as ways for approaching validation.21 In this research, we used persuasiveness criteria for validation. It means that during the study, the researchers tried to access the justified and reasonable analysis. In this way, research analysis in reflexive process of results and data and attention to the context of the study are the main strategies of the researchers. Also, researchers were committed to the ethical criteria of research according to Atkinson and Housley,20 as mentioned earlier. In this strategy, presentation of what is truth without any manipulation, and avoidance of any seduction interpretation are the main ethical strategies.As Atkinson and Housley mentioned, the postmodernist position recognizes multiple criteria for the validity of research – allowing ethical and local criteria rather than universalistic criteria to regulate the research.Results of the research showed some of constructs, one of which is clinic-dependency. On the other hand, asymmetrical pattern of conversation between doctor and patient is the main point of the results.Pattern of Conversationspaternalistic model in Emanuel and Emanuel22 view. Also, Mishler’s15 model and the patriarch model both postulate that there are active unequal relations in interactions, similar to the relations in this study.Results showed that the pattern of doctor-patient relationship was the same as On the other hand, results showed that the discourse governing the consultations was influenced by general standards and universal medical standards. The common chunks representing this discourse were: “Where are your echo test results?”, “My tests are incomplete”.  As the ultrasonography test reveals,  “Have you brought your previous test?”,  “Your previous test results are better than this one”,  “You should go for the test and return in a month’s time”,  “I’ll prescribe a re-test”,  “Repeat the re-test”,  “Just do these tests”,  “For the time being do these tests”,  “Bring the results to me later”,  “An endoscopy re-test might be needed”,  “Let me check out your blood sugar, too”,  “I’ll add a mammography, too”,  “You should get scanned in two months”  and so on. In such chunks, both doctors and patients were dependent upon test results and other clinical tests, showing two general functions: first, evaluating the illness progress though trials in which the consultations, rather than the history of the illness, were more concerned with physical examinations, and other issues about test results such as changes in numbers and figures. In the consultations under the study, the doctors played the role of an interviewer while the patient or the person accompanying the patient played the role of a respondent. The following is an excerpt from a case of hypothyroidism (Consultation #7):Doctor: Hey, how old are you?Patient: 45.Doctor: Do you experience monthly periods?Patient: Yea. Doctor: Is it regular? Patient:  Yea.Doctor: Is it little or too much?Patient: No, it’s normal.Doctor: Isn’t it irregular: too late or too early?Patient: No.Doctor: Does your belly work well? Don’t you have constipation? Patient: No.Doctor: Don’t you feel too tired? Patient: No.Doctor: How’s your appetite? Patient: Good.Doctor: Has your weight changed? Patient: No, it’s fine.This exchange shows the one-sided relationship which is observed in most of consultations. The qualitative evaluation of the consultations revealed that unequal power relations gave the following specifications to the dialogues:The doctors are the ones who start the dialogue.The doctors are the ones who determine how much a specific topic about the patients’ disease should be discussed. In cases in which patients’ opinion about their diseases does not correspond to the doctors’ views, doctors’ tend to change the subject.    Doctors finish the dialogue with a mix of verbal and non-verbal interactions.   Doctors explicitly or implicitly suppress the consultations.The frequency of words used by doctors is higher than that of patients.  Patients in all of the consultations show absolute obedience toward doctors .  Some of the consultations are finished while patients are not sufficiently persuaded. In all consultations, the tone of the dialogue and the nature of words emphasize the imperative tone of doctors and the subordinate position of patients.  Questions are close-ended and patients usually answer yes/no .  Paraclinical Standards and Patients’ Clinical Dependency Making patients clinic- or hospital-dependent is one of the easily observed aspects of the consultations. Such chunks as “Get a test in a month and get back for the next month”,  “Bring your test for me to check them out next month”,  “We’ll re-do the tests next month”,  “Bring the results to me”,  “Bring them along next month”,  “An ultrasonography test should be done next month and come here after that”, “Come back here in a 6 month’s time” are all related to the topic under the study and can be collectively called clinic-dependency. Generally, another function and dimension of medical discourse is to make patients clinic-dependent, which refers to establishing a discoursal atmosphere in which the patient or the one accompanying him/her are persuaded to come back while it does not seem to be necessary.This tendency is only possible by relying on universal paraclinical standards. What doctors intend to do by making patients dependent appears to be complicated, although its output seems to be closely related to commercialization of medicine. Still, generally speaking, increasing clinic-dependency has a scientific aspect. For example, from a certain age, males should check for prostate cancer once a year and females should refer to doctors for their papanicolaou test. Moreover, for many cardiovascular diseases, etc., doctors make patients clinic-dependent in a procedure called follow-up. Yet, sometimes in doctor-patient interactions there is no reason for further follow-up, or personal conditions of patient such as mental, economical and social situations don’t let to do the follow-up, but doctors use universal standards to make patients clinic-dependent. As an instance, consultation #8 is about a patient with extreme thinness. In the previous consultation, the doctor had prescribed a series of tests and ultrasonography examinations. The patient referred to the doctor with test results, which did not show anything except for some blood that might have been secreted by a kidney stone. The doctor thus recommended the patient,  “There was some blood in you urine, and repeat the text just one more time; if blood is seen again, a kidney ultrasonography test would be necessary, and if not it’s OK, nothing has happened”. In this consultation, the patient wanted his thinness to be cured, but the doctor prescribed a kidney ultrasonography test, recommending the patient to get back in three days. In this case, the thinness problem, which was diagnosed to be genetic by the doctor, is used as a criterion for labeling the patient ill and making him clinic-dependent. This procedure led the doctor to overextend his diagnosis to other body organs, which is a conduct influenced by political economics in medicine, from the viewpoint of critical anthropology. Consultation #5 was a conversation between a doctor and the mother of an 11.5 year-old girl who referred to the doctor because of her daughter’s short stature. In the conversation, which lasted for 7:30 min, the doctor and the girl’s mother were engaged in an argumentative dialectic. The girl’s mother referred to the doctor from a remote village in Fars province, Iran, to find a cure for her daughter’s short stature. In the previous session, the doctor had prescribed a series of examinations to be conducted on the girl including abdominal ultrasonography. Bringing all of the examination results, the mother referred to the doctor’s office for the second time. The mother, who was concerned with her daughter’s short stature disorder, was now facing another problem: the activation of her daughter’s ovaries. The doctor tried to persuade the mother that through delaying precocious puberty by injection, the problem could be solved and the patient’s stature would as a result increase. Because the doctor failed to persuade the patient, finally, he appealed to power and finalized the conversation. Mother: So you prescribe it all. How much are the injections, expensive? Wish they don’t have side-effects to cause more trouble…. What should be done for her growth?I’m not talking about her growth at all; this will prevent her monthly periods; I’ll check out her growth myself, get it?Doctor: Mother: So after the injections she should go for sonography to see her ovaries have stopped to grow?No,no, sonography is not needed, (yah…Um) I’ll recognize it myself; don’t worry about that stage [giggle], when necessary I’ll prescribe sonography or examination.Doctor: [the end of the conversation]I’ve come a long way from a village and spent so much money …”, which shows that she had financial concerns. Ignoring this concern, the doctor, however, introduced a new medical procedure (hormone injection) to delay the patient’s monthly periods, imposing even more costs as the result of his medicalization of the case. This new medical procedure would include costs of ampules, repeated ultrasonography, hormonal check-up, other blood tests, and dependence on clinic. Apart from the costs, the important question is whether such a procedure would bring about desired results (to increase the patient’s stature).This consultation shows the economic problems of the patient’s family clearly. But the doctor started a new protocol, with no attention to poverty condition, based on paraclinical standards. In one chunk of this consultation, the patient’s mother said “Paraclinical Standards as a General lawillness to these cases and then they get dependent on clinic. So, the paraclinical standard is a “regulation”, based on which the doctor defines his/her diagnosis and treatment that leads to clinical dependency. For example, a doctor said to a patient with helicobacter pylori ,The paraclinical standards let the doctor to label RULE [to get back in a month] is to stop taking antibiotics and pantoprazole two-four weeks before the procedure; well, well, then we have to repeat the procedure for H.pylori (Consultation #13).Your H.pylori infection test is negative, but the “The rule is…” shows an unbreakable standard for the doctor. Prescribing or repeating examinations has been observed as universal standards in different consultations: repeated full blood test, mammography, abdomen ultrasonography (Consultation #15); a full procedure for H. pylori, repeated endoscopy, neurophysiological consultation, repeated consultation (Consultation #16); repeated ultrasonography, bladder strips, repeated consultation (Consultation #18); brain C.T scan, ultrasonography, repeated H. pylori test (Consultation #14). RULES imposes heavy mental pressure and costs on the patient and family and make them dependent on the clinic with these prescriptions: “You should go for the test and get back in a month”, “I’ll prescribe a re-test”, “Repeat the re-test”, “Just do these tests”, “For the time being do these tests”, “Bring the results to me later”, “An endoscopy re-test might be needed”, “Let me check out your blood sugar, too”, “I’ll add a mammography, too”, “You should get scanned in two months” and so on.There is no doubt that these On the other hand, doctors would like the patients to follow the instructions when they recommend making a follow-up appointment in future, generally. For example, in Consultation #14, the doctor, having examined the tests within the standards, found out that the patient had not obeyed the doctor’s recommendation of a follow-up. The following is the doctor-patient reaction:  Doctor: After, after you went on the diet, we emphasized that your stomach infection would go away.Patient: I, I….Doctor: You were supposed to get back [giggle].Patient: I’m sorry I didn’t. And I didn’t even get tested for some of the tests you had kindly prescribed.  confession to justify that he did not make a follow-up appointment because it was a simple unintentional mistake, and he implicitly requested the doctor not to consider this negligence. This confession is due to dominance of the doctor’s authority over the patient’s lifeworld. The patient knows that if he doesn’t any confession, the doctor may not provide him with a suitable counseling. So, besidess paraclinical standards, use of medical authority is a complementary technique for making patient clinic- dependency, as shown in consultation #14.Here, the patient expressed a kind of 15 which was called paternalistic model in Emmanuel and Emmanuel.22 When a paternalistic approach governs the interaction, the doctor uses an interactive dialogue that is different from participatory interaction. Accordingly, the nature of power relations affects the criteria considered by the doctor. Under such circumstances, the doctor, would pay attention to the patient’s opinion and experience of his/her illness more than him/her, has to follow more valid norms , and from among these norms, medical standards are the most important medical diagnosis tools.Clinical counseling depends on the nature of doctor-patient interaction. These power relations affect the structure and specifications of medical diagnosis procedures. The present study showed that the doctor-patient interaction was in line with Mishler’s classic model,On the other hand, response to the question “how do the physicians the make the patient dependent on their authority and clinic, according to results is simple; paraclinical standards as a more powerful instrument. When a physician says to the patient that ‘the lab data are suspected to … disease’, s(he) is making the patient dependant on the clinic or medical procedures. So, to ‘RULE OUT’ this diagnosis, the patient inevitably does the ‘FOLLOW UP’ and the first result of this reality is patients’ dependence on clinic and physician. 23 In addition to the psychological and socio-economical problem of illness labeling for the patient, making clinic-dependency is the main malfunction of this procedure.Results showed the all consultations were dominated by paraclinical standards, so that the atmosphere of the consultation was so influenced by the norms of trials that led to a situation which Petryna describes this way: “WE Don’t SEE PATIENT, WE SEE DATA”. The words of one clinical trial scientist, “I don’t see patients, I see data,” reflect the recasting of the patient’s role as data to be captured, transferred, and even manipulated.24 So, we confront with a form of political economy of clinics. This political economy has two main features as follows:Making dependency is one part of political economy of the clinic. Generally, as Oliver points out, dependency can have two aspects: first, people’s dependency on states and particularly welfare state, which is a macro-dimension, and second, people’s dependency on specialists and professionals. Concerning the second aspect, Oliver believes that economic structures determine the roles of professionals as gatekeepers of scarce resources; legal structures determine their controlling functions as administrators of services, career structures determine their decisions about whose side they are actually, and cognitive structures determine their practice with individual people who need help. Otherwise, why would they be employed to help them?.25 or context of neoliberalism.26 In this context, the main result of paraclinical standards is the patients’ dependency on the clinic that reproduces the medical power on the one hand and increases the development of political economy of medicine in the other. Clinic-dependency is another part of physician-dependency. So, this dependency is reproducing the physician’s authority on the one hand, and economical gain of clinic on another. Economical gain of dependency is called commercialization of the clinic.Preserve the physician authority. Clinicians as professionals of the clinic try to control their clients (patients) with power-knowledge authority that can be called political economy of the clinic. According to researchers, political economy of the clinic is due to the context of modern imperialism26 This commercialization forms in micro, messo and macro level of the society. This study shows one dimension of commercialization of clinics in the micro level. Recommendation of many lab data tests, different graphs, X-rays, and MRI by physicians help to develop the paraclinical industries on one hand. Due to clinic- dependency and, specially to the physician-dependency, patients must come back for better evaluation based on paraclinical standards and this is another dimension of this commercialization. To realize this commercialism, doctors would need to control the society.Commercialization of the clinical procedures. From the perspective of political economics, the basis for medical standardization and medicalization is medical commercialism.26So, clinic-dependency at the micro level can lead to increased physician income. However, increase in population growth, increase in diseases, especially NCDs, lifestyle changes, and increased life expectancy should also be considered. Such cultural and social conditions that make people sensitive to their health, and with the least suspect, they refer to the clinic, and doctors based on medical power with specific tools , make them dependent on the clinic. As a result, medical system is confronted with inequality and also increase in the costs, as Hart has mentioned.27 so it can be argued that there is a close relationship between clinic and medicalization. Govender and Peen- Kekana believe that medicalization occurs due to economic abuse so that it leads to over-medicalization for the patient, especially females.28 Also, Cornard believed that ‘widespread medicalization, perhaps over-medicalization, of human conditions is a trend that shows no signs of abatement’.29 So, physicians’ patriarchal authority based on paternalism and medical standards forms a discursive atmosphere that leads to the patients’ clinical dependency , and social issue. These lead to better understanding of the patient.33This change suggests other models of relationship such as informative, deliberative, and interpretive model, as Emanuel and Emanuel mentioned.34 but they need to be further adapted to cultural and economic contexts of a society and diversities of patients’ socio-economical and psychological conditions. Also, although medicalization cannot be restricted, paraclinical and medical services should be provided by a due consideration of the patient’s concerns and his/her social, economical and cultural conditions on the on hand and attention to medical prescription possible (side-)effects on the another. As Cornard argues, it is hard to imagine a world in which medicalization diminishes. Whatever the medical and social consequences, medicalization will remain a dominant approach for an increasing range of human problems. The questions remain that what is the relationship between medicalization and society’s organization; and what is the result of this relationship?.35 However, as Kleinman points out, medicine should be used as an art in the interaction with the patient or those accompanying the patient, rather than a mere focus on scientific data.36 Political economy of clinics has its ethical limitations since in clinics and also in any part of health care system “the consumers are not ‘merely consumers’- they are patients - people that are in a particular condition or state regarding a health issue”. 37The important point is that medical standards cannot be simply overlooked,The main limitation of the study was the exclusion of non-verbal variables of the interaction. When a patient enters the clinic, many non-verbal interactions occur between the patient and doctor that need to be analyzed. The nature of non-verbal interaction plays an important role which can be studied in future research. So, in future studies, it is recommended that researchers should focus on video recorded data and analyze them. Paternalism model of doctor-patient relationship and also the dominance of paraclinical standards over the diagnosis and treatment. In this context, many issues such as humanization of relation, medical ethics, attention to physical exam and clinical standards, attention to sociocultural and economical differences between patients, and non-commercialization approach in clinic were ignored. Therefore, while we cannot condone the role of paraclinical standards in clinical counseling, its dominance needs to be reduced. Furthermore, doctor-patient relationship needs to use new approach such as informative and deliberative models.This study shows that patients’ clinic dependency is the subject of clinical political economy which is the result of two elements,


Virtual Patients (VPs) have been in the focus of research in healthcare education for many years. The aim of our study was to analyze how virtual patients are described in the healthcare education literature, and how the identified concepts relate to each other.We performed a literature review and extracted 185 descriptions of virtual patients from the articles. In a qualitative content analysis approach we inductively-deductively developed categories and deducted subcategories. We constructed a concept map to illustrate these concepts and their interrelations.We developed the following five main categories: Patient, Teacher, Virtual Patient, Curriculum, and Learner. The concept map includes these categories and highlights aspects such as the under-valued role of patients in shaping their virtual representation and opposing concepts, such as standardization of learner activity versus learner-centeredness.The presented concept map synthesizes VP descriptions and serves as a basis for both, VP use and discussions of research topics related to virtual patients.The online version of this article (doi:10.1186/s12909-016-0655-8) contains supplementary material, which is available to authorized users. Virtual Patients (VPs) in healthcare education is a broad umbrella term for computer-based programs to simulate real-life clinical scenarios . A body To further describe VPs, researchers have suggested frameworks and categorizations. For example, Huwendiek et al. developed a typology of VPs based on the four categories general, educational, instructional, and technical . More reThe common thread between such frameworks is that they focus on categories and concepts, but not on how these may influence each other or how they are influenced by their environment or actors. However, these aspects have implications on how teacher design VPs and integrate them into courses, and consequently, how students use VPs as learning resources. Therefore, we believe that “zooming out”  is imporOur aim was to follow a broad approach by analyzing descriptions of VPs in the healthcare literature, since the process of introducing and explaining a concept often also involves presenting relations of concepts. We aimed to capture and synthesize these concepts and relations to provide both, an overview for educators on using VPs, and a basis for planning research studies with VPs.How are virtual patients described in the healthcare literature?How do the identified concepts influence each other?We formulated two research questions to guide our work:The first step of our study was a literature review to extract text passages that describe virtual patients. This included both, explicit definitions and characterizations of virtual patients. In a second step we applied a qualitative content analysis to synthesize and analyze these descriptions.articles in a language other than English.short conference abstracts (less than one page).“virtual patient” not mentioned within the articles (only in abstract or title).non-educational articles.We searched PubMed, Scopus, EMBASE, PsycINFO, CINAHL/EBSCO, and ERIC for citations on virtual patients  extracted the VP descriptions into two separate files and composed a single list by consensus. We included statements characterizing the essence or nature of VPs. The descriptions could be composed of multiple text passages from the manuscript, although most of the descriptions originated from introductions. Any specific VP description, such as a specific type of VP implemented at an author’s institution have been excluded.We applied a qualitative content analysis following the approach of Schreier  to synthIn a second step, we applied the coding frame to 20 % of the descriptions, which were coded independently by two authors . Inconsistencies were resolved by consensus and the coding frame refined to be more specific in some instances. The coding of the remaining 70 % of the descriptions was done by IH; 20 % of these were double-coded by DT and 80 % were re-coded by IH two months after the initial coding. We did not encounter any inconsistencies at this stage. The following flow chart Fig.  illustraWe documented the data analysis in MS Excel and used color codes to segment the descriptions.We decided to visualize the identified concepts and relations in a concept map. Concept maps are particularly suitable to visualize the organization of knowledge. They represent a set of concepts and their relations in a way that new concepts are linked with what is already known . We usedWith our search strategy we identified and included 375 educational articles that ranged from 1991 through to the end of 2014  required to develop and deliver VPs. The “process of creating quality VP cases is both expensive and time consuming”  and resuConcerning the challenges of developing and using VPs, mainly legal and technical challenges were mentioned. Legal issues included management of rights, permissions, and copyright issues , 28; tecVPs were described as “real life clinical scenarios”  and authVPs “can […] permit a high level of interactivity” and “fall in the high interactivity range of the continuum  but “intThis subcategory encompasses aspects of variability, variety, and adaptability within and across VPs. VPs can “demonstrate a variety of clinical or interview scenarios, for example changing the gender or race of the patient” . They caTo describe the underlying technology of VPs researchers used a great variety of terms such as “computer”, “web-based”, and “simulation”, but also “e-learning”, “virtual reality”, or “game”. Some researchers described the VP technology in more detail, like the use of “multimedia devices such as still images, video, and audio clips”  and userThe descriptions also included aspects related to availability and accessibility of patients and VPs. Many factors “limit student exposure to real patients; these include reduced patient time in hospitals, increasing hospital specialization and pressure on clinical budgets.” ; VPs “caThis subcategory encompasses instructional design aspects of VPs, such as how a learner navigates through a VP. In a linear VP, “the user is prevented from going down any wrong paths by immediate correction” ; brancheThree different aspects - learning (including teaching and training), assessment and self-assessment - were pointed out by the researchers: VPs “have been proposed for both training and assessment”  and “havVPs were seen as part of a blended-learning strategy, as “preparation for interaction with SPs and real patients”  and to “Compared to bedside teaching or teaching with standardized patients (SPs), “virtual patients offer true standardization across interactions creating a more consistent but less flexible experience for learners” . “The usOpinions varied about whether VPs are well adopted, an upcoming activity or not (yet) well adopted in healthcare education. Statements ranged from “resulting in lower adoption rates than might be expected” , “growthThe target group of VPs were mainly described as students, less often as healthcare professionals. But, also non-healthcare personnel, such as a policemen, fire-fighters , and carVPs “allow students to adopt the role of a health care provider” . This inVPs provide a “safe environment for students to practice” , “practiResearchers described the use of VPs as “self-paced, independent, and self-directed environment” . VPs “alCompetencies that can be addressed by VPs include knowledge acquisition, clinical reasoning, teamwork, communication, and clinical skills training. These competencies are also reflected in the frameworks of Talbot  and KonoResearchers pointed out a variety of other characteristics of VPs, such as validity, effectiveness, and reliability of VPs.Finally, we visualized the relations between the categories and subcategories identified in the analysis in a concept map Fig. .Fig. 3CoFigure3shows a concept map of the categories and subcategories. Categories are displayed in orange, subcategories in blue, and related concepts in gray. A full-size map is available underhttp://map.virtualpatients.net.We synthesized VP descriptions from the healthcare education literature into categories and related concepts and visualized these in a concept map Fig. . This maPatients are the center and basis of VPs. However, they do not seem to be regarded and valued as significant actors and their role is often one of a passive receiver of care. This is reflected in the lack of subcategories and only a few relations to other concepts in the concept map. But, patients could be much more involved than being mere donors of material. For example, they could act as reviewers or feedback-givers to ensure that their perspective is adequately represented and valued. Especially when thinking of VPs that present a patient’s perspective , a deepeFuture VP development and research should focus on including patients into the VP development beyond multimedia elements and investigate effects on the perceived authenticity of a VP and learner engagement.Teachers face time, resource, and technical demands, as well as legal challenges when creating and integrating VPs . On the Despite such challenges, teachers appreciate the fact that their students VP activities and performances are recorded, documented, and can be evaluated for learner and quality assessment purposes. The documented data (such as time spent on a VP or interactions within a VP) can be used for learning analytics and data mining purposes to support the learning processes. However, this raises new issues about data ownership, privacy issues, and disempowerment of learners .We subsumed six different aspects under the virtual patient category: technology, authenticity, interactivity, feedback, instructional design, and variations. Although the research focus most often lies in didactical aspects of VPs, the technical basis and variety, ranging from text-based VPs to high-fidelity simulations, are important characteristics that are included in classification frameworks , 5 and iMany concepts of the “Virtual Patient” category have been addressed individually in earlier studies and review articles , 36 and When offering VPs to learners it is important to consider how they can be integrated into the overall curriculum. Studies have shown that VPs should not be provided as isolated add-ons to a curriculum  and thatAlso, for this category, it is important to be aware of the relations to other concepts when integrating VPs into a curriculum: Standardization and assessment to some extent contradict the aspect of a learner-centered and dynamic VP and also the navigation model of a VP influences the degree of standardization. For example, in branched VPs learners can choose diverse learning paths potentially covering different learning objectives.Different opinions have been expressed when describing how well VPs have been adopted by the medical education community. This is an interesting side-finding which could be followed-up, for example, by conducting surveys among healthcare educators to identify factors that foster or hinder VP uptake.The learners interacts with the VP in a role-play approach; often they are allowed to make their own clinical decisions from the “driver’s seat” . AccordiAlso, when thinking of a learner-centered embedding of VPs into a curriculum, learners could benefit from collecting and connecting content, learning experiences, feedback, or any other VP-related activity in their personal (e-)portfolio. Portfolios have become widespread in healthcare education in the recent years  but to oLearner-centeredness could also be reflected by diversity in role-play, for example, by enabling the learner to choose a role (including the patient’s role) in an inter-professional VP setting. The form of the learner’s role differs depending on the type of VP and ranges from a written explanation of the scenario and the user’s role to the learner steering an avatar in a virtual reality. How this aspect influences learning with a VP or perceived authenticity, especially when looking at different role-play levels, remains in our opinion an interesting open research question.The presented concept map highlights the most prevalent and important topics for the VP community. We encourage researchers and educators to use this map as a basis for designing VPs, developing VP systems, and introducing faculty development courses about virtual patients.Our analysis contributes to an increased awareness of VP characteristics. However, there are several limitations to our study. First, there are other, more general, terms used for VPs, such as patient simulation or computer-aided, case-based learning, that have not been included into our analysis. Consequently, we cannot exclude that additional concepts might be revealed when expanding the study to such additional terms. Secondly, our study focused on the body of literature and thereby on the researchers’ and educators’ views. It is unclear to what extent this also represents other perspectives, such as the learners’. Thirdly, we are aware that in qualitative research the subjective perspective of the researchers and the perspectives expressed in the data is interwoven and in retrospective hard to separate.Finally, as our study aim was to follow a broad approach, we did not present subtle nuances and therefore recommend further, fine-grained research for the subcategories and their relations.This paper outlines healthcare education researchers’ descriptions of virtual patients structured in five main categories and related concepts. Many of the concepts, especially in the Virtual Patient category, have been considered in existing frameworks and have been researched upon in the past. However, we also point out aspects that have rarely been investigated, such as documentation, standardization of learning activities, or learner-centeredness in VPs. Further research is needed to explore these concepts in more detail.In the concept map, we visualize concepts related to VPs and their interrelations. We hope that the map will serve as a dynamic resource for both, educators and researchers, and new concepts and relations will be added as research progresses.The concepts and relations can serve as a basis for structuring a course, formulating learning objectives, evaluation, quality management, and implementing research studies with VPs. We believe that the interactions and relations of the identified concepts have not yet been fully explored and further research is needed. In particular, learner-centeredness seems to be of central importance and is influenced by aspects, such as standardization or interactivity. Finally, we believe that the involvement of learners and patients in virtual patient development and integration should be prioritized in the future.Not applicable.Not applicable.Additional file


We estimated the extent to which Canadian expectant parents would seek medical care in a febrile neonate (age 30 days or less). We also evaluated expectant parents’ knowledge of signs and symptoms of fever in a neonate, and explored the actions Canadian expectant parents would take to optimize the health of their child.We conducted a cross-sectional survey of a sample of expectant parents from a large urban center in Canada. We recruited participants from waiting rooms in an obstetrical ultrasound clinic located in an urban tertiary care hospital in Montreal, Canada. We asked participants nine questions about fever in neonates including if, and how, they would seek care for their neonate if they suspected he/she were febrile.Among the 355 respondents, (response rate 87%) we found that 75% of parents reported that they would take their febrile neonate for immediate medical assessment, with nearly one fifth of the sample reporting that they would not seek medical care. We found no significant associations between the choice to seek medical care and expectant parents socio-demographic characteristics.Despite universal access to high quality health care in Canada, our study highlights concerning gaps in the knowledge of the care of the febrile infant in one fifth of expectant parents. Physicians and health providers should strive to provide early education to expectant parents about how to recognize signs of fever in the neonate and how best to seek medical care. This may improve neonatal health outcomes in Canada. Febrile neonates aged <30 days) are a high-risk group for serious bacterial infections ,2. Reaso0 days arIn Canada, a contributing cause of death of neonates is sepsis. Sepsis is defined as the presence (probable or documented) of infection together with systematic manifestations of infection . Fever , evaluate expectant parents’ knowledge of signs and symptoms of fever in a neonate, and describe the actions Canadian expectant parents would take if they recognized fever in their child.In 2011, the population of Canada was 33.4 million persons, with an estimated 378,762 new babies born that year. At this time, Canada had an immigrant population of 6.1 million persons [This study was reviewed and approved by the institutional research ethics boards at the Jewish General Hospital in Montreal, Canada.We conducted a cross-sectional survey of expectant parents from February to April 2011 in a large Canadian urban setting. We invited English or French speaking expectant parents, aged 18 years and over, to participate in the study. We recruited participants from an obstetrics clinic at the Jewish General Hospital, a tertiary care center serving a diverse patient population in a largely immigrant-based area of Montreal, Quebec, Canada.We invited expectant parents to our study while they waited for their scheduled obstetrics appointments. If an individual agreed to participate, we asked him/her to provide informed written consent. Once consent was obtained, we asked participants to complete an anonymous survey in either English or French and drop the completed survey in an opaque box. After survey completion, or in the case of participants who did not consent to participate, we gave all individuals an educational pamphlet about the definition and significance of fever in the neonate see .Gender was coded as man or woman. Age was dichotomized into “≤27 years” or “>27 years”. First language spoken at home was coded as “English”, or “French/other”. Stage of pregnancy was coded as “0–26 weeks”, and “27–40 weeks”. Immigration status was coded as “born in Canada” or “moved to Canada”. Education was coded as “high school or less” or “more than high school”. Parent of a second child was coded as “yes” or “no”. Income was coded as “$0-$49,999” or “$50,000+”. All continuous variables were coded based on median values from found in the initial analysis of the data.In order to assess knowledge of fever, we asked expectant parents nine questions see . QuestioIf your baby less than 30 days old has a fever, you should bring them to seek medical care immediately”. We calculated crude odds ratios (OR) and 95% confidence intervals (CI) to ascertain the effects of age, gender, immigration status, education, language spoken, income, stage of pregnancy, and number of other children.As mentioned above, we assessed expectant parental knowledge in three ways. First, in order to estimate what proportion of expectant parents would seek medical care in the case they suspect fever in the neonate, we summarized the frequency that parents endorsed one item “Second, for the five questions asked about potential signs of fever, we summarized the number of parents who answered each question correctly or incorrectly. As we are in the exploratory phase of this research, and do not yet have a psychometrically sound screening tool, we did not add these items to produce a total score. Instead, we counted and displayed the individual responses and displayed the response to each item using frequency tables and cross tabulation.Finally, for the last three questions about the actions expectant parents would take if they suspected fever in their neonate, we counted the frequency that parents endorsed pre-selected categories for each question.For all questions in the survey, we also recorded the number of participants who completed each question. In order to test if missing data was missing at random, we performed chi-square tests to test whether there were differences amongst the individuals who completed the items, and those who did not.All calculations and analyses were performed using SAS software, Version 9.2 .We approached a total of 428 expectant parents for this study. As shown in The first objective was to estimate the extent to which Canadian expectant parents would seek medical care in a febrile neonate (age 30 days or less). The second objective was to evaluate expectant parents’ knowledge of signs and symptoms of fever in a neonate. As shown in The third objective was to describe the actions Canadian expectant parents would take if they recognized fever in their child. Participants reported accessing varying sources about fever in the neonate. Primarily, expectant parents would seek information from health care professionals, or from books or pamphlets given to them by a nurse or doctor . Participants reported that the Internet  and a family member  would be other sources of information to learn about how to manage fever in the neonate.Our study evaluated Canadian expectant parents’ knowledge of fever in the neonate. The main finding of this research was that nearly a fifth of expectant parents in the study reported that they would not take their neonate to seek medical care if they suspected a fever. No demographic variables predicted if expectant parents would seek care for a febrile neonate. Though we found that although most parents were able to identify the signs of a fever and why it may be dangerous, few parents were able to correctly identify the temperature at which a neonate is considered febrile. Although neonatal mortality is less common in Canada compared to developing countries, our findings suggest that further investigation is needed to understand the barriers to knowledge about fever in the neonate in this population.Most studies to date have examined this topic in populations of parents living in developing countries, summarizing a common need to enhance education about fever in mothers in antenatal care as well as those discharged from health facilities after delivery ,26,27. DIn our study, although immigration status was not a predictor of seeking medical care, we found a significant portion of participants were foreign born immigrants (55%). This was three times greater than the national average of 18% . EffortsFinally, we found that most expectant parents reported that they would seek information about fever in the neonate from a medical doctor or a nurse see . Even inOur study was not without limitations. First, given that the sample came from only one Canadian city, it may not be fully representative of the Canadian population. Specifically, our study lacked younger parents (aged 26 years or less), First Nations  representation, and parents with a low education. It is hard to know exactly how this would have influenced the results; however, we postulate that a population of younger, less experienced, less educated, marginalized parents may have had less knowledge around fever in the neonate. Second, our study was conducted in a single-center. Although the site chosen was quite ethnically and economically diverse, we recognize that a similar study conducted in other large Canadian urban hospitals may give different results. Third, we used a newly developed survey in this study. Further development and refinement of the survey is needed to justify content validity, reliability, and addition of items to produce a total score. Specifically, we acknowledge that future studies that survey expectant parental knowledge of fever in the neonate should include questions that capture other danger signs of severe illness such as those outlined by the World Health Organization in the Integrated Management of Newborn and Childhood Illness guidelines : 1) histS1 Appendix(TIFF)Click here for additional data file.S2 Appendix(TIFF)Click here for additional data file.S3 Appendix(TIFF)Click here for additional data file.S4 Appendix(TIF)Click here for additional data file.