second generation antipsychotic prescribing to young people under 25 years of age is increasing internationally [ 112 ] . the rise in prescription trends has generated controversy given available pediatric evidence for second generation antipsychotic effectiveness and safety data and the unknown long - term consequences with intermittent or continuous exposure [ 1316 ] . antipsychotic - related weight gain and changes in the metabolic profile ( e.g. , glucose and lipid homeostasis ) that occur following , or in concert with , weight gain are frequently discussed as significant treatment - related issues . the explicit mechanisms of antipsychotic - related weight gain are not fully understood [ 1724 ] nor are the best management approaches ( e.g. , lifestyle , pharmacologic ) , but research in these areas continues [ 17 , 2533 ] . predictive or risk factors for antipsychotic - related weight gain are also unknown but some inferences can be made from available syntheses of the literature . these factors include lower pretreatment body mass index ( bmi ) , triglyceride levels , more negative symptoms , polypharmacy , concomitant antidepressants , and younger age [ 34 , 35 ] . predisposing factors are similar for pediatrics and antipsychotic - nave patients , and younger age groups appear to be at highest risk [ 36 , 37 ] . weight gain may also be more dramatic with younger patients compared to adults . given the local and international trends in utilization and controversies regarding effectiveness and safety of antipsychotics , we explored the lived experience of youth taking antipsychotics , their caregivers , and prescribers through a qualitative study using an interpretive phenomenological approach . this paper focuses on the experience of weight gain for youth taking antipsychotics , their caregivers , and the prescribers . in stage one , all transcripts were read by am and dg as a whole to gain a complete picture or overall understanding of the data considering weight gain . in stage two , we summarized sections of the transcripts and identified categories within weight gain . we met weekly for a month to discuss our interpretations of the categories and provided text quotes to demonstrate support . , we continued with independent analysis of transcripts and compared interpretations of the categories with supporting text . in stage four , we sought to examine relational themes . throughout the process we engaged in reflexivity through journaling . among other strategies , transferability may be limited to an extent as the study occurred within a canadian province with a predominantly publically financed system ( 70% public , 30% private ) . we recruited low income youth , defined as youth receiving government income assistance , aged 11 to 25 years , who were prescribed antipsychotics within the last two years . general practitioners and psychiatrists who prescribed antipsychotics to youth in the last six months and licensed to practice in nova scotia , a canadian province , were eligible and were informed of the study for physician recruitment purposes and also to facilitate youth and caregiver recruitment . all participants were offered the choice of a one time interview or focus group , and each participant was paid a one - time honorarium . separate interview guides ( available upon request ) with main and probing questions were developed for each group of participants . youth , caregiver , and physician interviews and one physician focus group were conducted between january of 2010 and august of 2010 . all interactions with participants were recorded and transcribed except one face - to - face interview ( one youth refused to be recorded ) . all audio recordings were transcribed , and , during cleaning of transcripts by the interviewer , field notes and jottings were used to insert comments and reflections when appropriate . responsive interviewing techniques were used with an iterative process of data analysis occurring during data collection . once cleaned , transcripts were stored and organized using atlas.ti 6.2 . ethics approval was obtained from the research ethics boards ( reb ) of capital district health authority and the iwk health centre given that our population spanned young people and adults . the theme of weight gain emerged from an analysis of approximately 13 hours of audio from 18 youths who ranged in age from 13 to 26 . the two 26-year olds were included in the analysis as their most recent antipsychotic exposures were in their 25th year of life . one youth and caregiver pair were related ( i.e. , mother and son ) in our study , and they were interviewed separately . we collected 11 audio hours from 10 female caregivers , who will herein be referred to as parents  given all caregivers described themselves as a  parent  and 7 audio hours from 11 prescribers ( n = 5 prescribers in a focus group and n = 6 prescriber individual interviews ) . eleven of 18 youth , six of ten parents , and all prescribers discussed antipsychotic - related weight gain . participants were highly attuned to the number in pounds as a metric for weight changes . within the theme of weight gain , we further categorized and coded the data with body image , adherence and persistence , managing weight gain , and metabolic effects . within the experiences of participants , these concepts changes in body weight affected body image and the potential to experience stigma related to weight gain . youth were not only coping with their own emotions with weight changes but also managing the responses of others to their physical appearance . parents and prescribers similarly discussed the concept of body image , but the concerns more shifted towards long - term implications of weight gain from a safety lens or adherence to medications . prescribers ' perceptions of the youth consciousness with weight changes were an underlying consideration in the prescriber choice of antipsychotic and anticipated adherence patterns in youth . people are like ,  oh , you got chubby in the face . ' and i 'm like , people are like ,  oh , you got chubby in the face . ' and i 'm like , youth 11 : 

   i 've gained at least 15 pounds . and probably but i 'm completely unhappy with my body .  
  participants in our study discussed strategies that were used in mitigating weight gain or managing potential or existing weight gain through various choices . these included consideration of the initial choice of antipsychotic in terms of its potential to cause weight gain , switching of antipsychotics , lifestyle interventions ( e.g. , diet , exercise ) , pharmacological treatments , and nonadherence or eventual antipsychotic discontinuation .   for youth , there was a frustration expressed when results of their efforts to minimize weight gain were not what they expected . youth employed lifestyle strategies such as diet and exercise or talked about planning to initiate these strategies . discontinuation initiated by youth themselves was also used as an approach to stopping weight gain . one prescriber in the focus group was the only prescriber to discuss nonswitch pharmacologic options such as metformin to manage antipsychotic induced weight gain , and other members of the group appeared unaware of this option based on the ensuing discussion . for initial antipsychotic choice , several prescribers discussed their previous experiences with patients who had gained weight and also their own values as being influential in how they made their antipsychotic choices . parents discussed youth engaging in behaviours to manage weight including exercising and dieting and also stopping medications . it was also evident from several parents that they made distinctions among antipsychotics , including newer  versus  older  agents , about which were better or worse for causing weight gain , and revealing preferences for agent choice for their youth . 
 youth 7 : 

   and i was exercising , eating the same way . youth 13 : 

  well , i had a lot of weight gain on the risperdal . youth 13 : yes , it 's supposed to be better and it has been because i 've actually lost weight on it since    interviewer : can you put a number on what you think you 've gained ? youth 13 : yes , it 's supposed to be better and it has been because i 've actually lost weight on it since    interviewer : can you put a number on what you think you 've gained ? youth 13 : overall , it was like 100 pounds .  
 
 parent 7 : 

   the seroquel is not as bad as the risperdal . but the seroquel has a weight gain thing too but it 's not as bad for her anyway . but the seroquel has a weight gain thing too but it 's not as bad for her anyway . prescriber 4 : 

  and a situation where i have 2 parents who are [ profession ] [ and ] a child with autism . they were so desperate to keep him on medication because it changed his life , it changed their life . and a situation where i have 2 parents who are [ profession ] [ and ] a child with autism . they were so desperate to keep him on medication because it changed his life , it changed their life . it will make you feel better but you will gain 30 pounds , ' i 'd say ,  no thanks ' .  

 
   if somebody told me , it will make you feel better but you will gain 30 pounds , ' i 'd say ,  no thanks ' . adherence is described as the extent that patients follow instructions provided for treatments   including conforming to dosing , frequency , and timing of medications . persistence is defined as the length of time that a therapy is taken from initiation to discontinuation . participants in our study discussed adherence , nonadherence , and choices made with persistence to medication directly in the context of weight gain . it seems that youth who were committed to adhering to , and persisting with , their antipsychotics had realized or perceived a benefit from treatment or understood it to be important . youth 7 discussed exercising in response to gaining  40 pounds in nine months  after he  agreed to take  his medication and also stating , for one youth , she discussed discontinuing her antipsychotic due to sedation and weight gain and that this decision irreparably altered the patient - prescriber relationship . prescribers similarly discussed how weight gain would promote nonadherence , and this mainly centred on the belief that youth would be concerned with body image . weight gain was generally seen as a barrier to adherence and a reason for nonadherence and lack of persistence . one prescriber 's experience was that youth often withheld information about whether they persist with therapies . it also became evident that , for some prescribers , they too were challenged regarding adherence and persistence with intended treatment courses for their patient in light of weight gain . one prescriber shared information around ambivalence when weight gain occurs in the face of benefits . youth 2 : 

  like january / february 2008 when i stopped taking this medication , i went to him and i was like , well , if you 're not going to take the medication i prescribed you , there 's nothing more i can do for you . i can have your files transferred to a different psychiatrist , ' which is closer to where i live so i would n't have to go to [ city ] every time .  

 
  like january / february 2008 when i stopped taking this medication , i went to him and i was like , well , if you 're not going to take the medication i prescribed you , there 's nothing more i can do for you . i can have your files transferred to a different psychiatrist , ' which is closer to where i live so i would n't have to go to [ city ] every time . parent 8 : 

   then she started to gain some weight with the invega . and my daughter is very petite and very , very conscious of her appearance and things like that .    and gaining weight just was n't in the cards . and the barriers really are around the weight gain and then they do n't want to stay on it . and my daughter is very petite and very , very conscious of her appearance and things like that .    and gaining weight the barriers really are around the weight gain and then they do n't want to stay on it . prescriber 1 : 

  so even though they may not be getting diabetic , the fact that they 've gained 25 pounds on one of the antipsychotics , they may stop taking it . they do n't tell you .  

 
  so even though they may not be getting diabetic , the fact that they 've gained 25 pounds on one of the antipsychotics , they may stop taking it . they do n't tell you .  
 
 prescriber 4 : 

   antipsychotic medications to some extent i have a little more concern about . and yet parents are a little less aware of that , unless they are well informed parents . or until the child has been on the medication for 3 months and they start to see the child is gaining a bit more weight than they need . the child might be functioning really well but now they are uncertain what to do about the weight gain , and they do n't want to lose the well functioning . they feel as though they 've got a child in their home for the first time . antipsychotic medications to some extent i have a little more concern about . and yet parents are a little less aware of that , unless they are well informed parents . or until the child has been on the medication for 3 months and they start to see the child is gaining a bit more weight than they need . the child might be functioning really well but now they are uncertain what to do about the weight gain , and they do n't want to lose the well functioning . they feel as though they 've got a child in their home for the first time . parents discussed concerns of the long - term consequences based on current weight or weight gain and married this information with family histories of conditions such as diabetes . one prescriber discussed heart disease and cholesterol whereas others that discussed metabolic side effects in the context of weight gain focused on diabetes and glucose . participants such as youth 7 were concerned about diabetes in light of existing lab values , but his experience indicates he may not fully understand the possible risk or potential likelihood of having the  list  of side effects . prescribers expressed concern regarding the side effects , and one pleaded for judicious and rational use because of limited long - term pharmacovigilance data . prescriber 3 through encouraging the rational use of the medications also shed light on wider systems issues . quick fix  for some in a cost - constrained system , the potential long - term implications would not be offset by immediate gratification . they also expressed concern regarding adequacy of knowledge translation efforts regarding the use of the medications . youth 7 : 

  the only other side effect i 'm worrying about actually with risperdal  well , one other side effect is it can cause permanent diabetes . and my blood sugar levels are a little bit high since i 've been taking the pill . and the other one is the inability to conceive children . but i mean i get this list of side effects , and i 'm like , ah , what am i going to get ? ' .  

 
  the only other side effect i 'm worrying about actually with risperdal and my blood sugar levels are a little bit high since i 've been taking the pill . but i mean i get this list of side effects , and i 'm like , ah , what am i going to get ? ' .  
 
 parent 9 : 

  so i had major , major concerns because he put on 70 pounds . parent 5 : 

  yes , i do have a family doctor but she i do n't think [ psychiatrist 's name ] had mentioned it , or i did n't actually pick it up , was [ son 's name ] should probably actually have blood work done so he has a base to go by . because if there 's any problems with cholesterol or anything like that , he should kind of be watched . you can get in to her right quick and she can give you a pad and then out you go . i do n't think [ psychiatrist 's name ] had mentioned it , or i did n't actually pick it up , was [ son 's name ] should probably actually have blood work done so he has a base to go by . because if there 's any problems with cholesterol or anything like that , he should kind of be watched . you can get in to her right quick and she can give you a pad and then out you go . focus group discussion 
 
 prescriber 1 : 

  i am seeing younger people like in the early 20s , even in late teens , where if they have a family history of diabetes as well , it 's really important to get baseline blood work because it can happen . i am seeing younger people like in the early 20s , even in late teens , where if they have a family history of diabetes as well , it 's really important to get baseline blood work because it can happen . interview , prescriber 2 : 

  i tend to stay away from olanzapine because i 've had experience and  well , i tend to use quetiapine . and i do n't know  this is more like the art or the cookery , the recipe of medicine , but i 've had experience with clients becoming diabetic on olanzapine . i tend to stay away from olanzapine because i 've had experience and  well , i tend to use quetiapine . and i do n't know  this is more like the art or the cookery , the recipe of medicine , but i 've had experience with clients becoming diabetic on olanzapine . prescriber 3 : 

   and not just a bit of change in your blood sugar but diabetes , and changes in your cholesterol , and setting people up for heart disease later on . i just do n't know how widespread the caution is yet   . like , let 's think . for some people , they need them , but let 's be responsible . let 's think about how we monitor when they are on it to make sure we do n't cause them life - long problems but i do n't know how well that knowledge has been transmitted across the board in terms of people prescribing . and i think there are serious pressures because of resource issues , not just in [ location ] but everywhere in mental health , that it 's easier to  that drugs are more accessible in general , but it 's easier to get a drug than to get therapies in general .  

 
   and not just a bit of change in your blood sugar but diabetes , and changes in your cholesterol , and setting people up for heart disease later on . like , let 's think . for some people , they need them , but let 's be responsible . let 's think about how we monitor when they are on it to make sure we do n't cause them life - long problems but i do n't know how well that knowledge has been transmitted across the board in terms of people prescribing . and i think there are serious pressures because of resource issues , not just in [ location ] but everywhere in mental health , that it 's easier to  that drugs are more accessible in general , but it 's easier to get a drug than to get therapies in general . our qualitative study in the canadian context is unique in that it gives insights into the lived experiences of three groups ( youth , parents , and prescribers ) with antipsychotic - related weight gain and related implications in the broader context of the lived experience of antipsychotics . to our knowledge , this is the first study of this kind in canada . the experiences of youth , parents , and prescribers were largely negative regarding weight gain and impacted body image and adherence and persistence with medications . managing weight gain was a complex phenomenon , and various strategies were reported by participants . an overarching fear and concern related to metabolic side effects was evident in our data . the rising prevalence of obesity in canadian children and adolescents has become a public health concern [ 43 , 44 ] . ball and mccargar   conducted a review of prevalence and risk factor literature from studies in children and adolescents . the etiology of increasingly overweight and obese children and adolescents is thought to be multifactorial including such factors related to lifestyle ( e.g. , limited physical activity , rising physical inactivity ) , eating behaviours and nutrition , and higher height and weight subsequently leading to higher bmis with earlier maturation . medications , including psychotropics , can also cause weight gain in children and adolescents [ 45 , 46 ] . meta - analysis data ranking antipsychotic - related weight gain are available for adults , and mean weight changes with antipsychotics versus placebo in children up to 18 years of age show higher increases with olanzapine at 3.47  kg ( 95% ci 2.94 , 3.99 ) , risperidone with 1.72  kg ( 95% ci 1.17 , 2.26 ) , quetiapine with 1.41  kg ( 95% ci 1.10 , 1.81 ) , and aripiprazole at 0.85  kg ( 95% ci 0.58 , 1.13 ) . the experience of weight gain with antipsychotics as discussed in our study from youth , parent , and prescriber perspectives focused heavily on numeric values in pounds of weight with wide ranges of weight gain described . an inherent limitation in our study is the inability to determine if the changes self - reported by youth and parents were abnormal . we did not explicitly link weight gain with diet , physical activity , other concomitant medications , or family histories of cardiometabolic conditions . based on the experience of some youth and parents reporting weight gains of 70 to 100 pounds , we can infer that this would be considered abnormal and its consequences in some cases would be considered significant . there was a general concern from both the prescribers and parents that the weight gain they observed , regardless of the quantity , was a negative consequence of antipsychotics for youth . several anthropometric measures of body adiposity ( e.g. , weight , bmi , height to weight ratio , waist circumference , etc . ) are available , and a standardization regarding what metrics should be used remains to be established . the association of these metrics with cardiometabolic disease in adults is varied , and more research is required with the application of these metrics to long - term outcomes in children [ 34 , 36 , 43 , 4951 ] . the current canadian guidelines published in 2011 on the monitoring of weight - related measures in children and adolescents taking antipsychotics recommend bmi and waist circumference measurements . in our study , the guidelines provide a good basis for clinicians to engage in monitoring practices ; however , it is difficult in the context of individual patients to determine how much weight gain can be caused by individual psychotropics , the velocity at which it occurs , whether it plateaus , who is most at risk , how to manage it , and what significance is produced by the outcome given that the research in this area is limited in high quality studies of ample quantity [ 47 , 53 ] . to date , studies that have examined monitoring practices show that of all parameters suggested for monitoring , weight measures are the most commonly performed . a major conundrum that is apparent in the literature on the topic of antipsychotic - related weight gain in youth , or as identified in our study as  ambivalence ,  emerged from our data and was aptly described by a prescriber discussing weight gain occurring in concert with much anticipated and hoped for benefits of therapy . the issue of what to do in response to weight gain is especially complex when perceived positive impacts occur . weight gain is really one of several surrogate markers of interest in relation to cardiometabolic diseases . the potential association with chronic disease ( e.g. , cardiovascular and endocrine ) development and related morbidity and mortality is of great importance given the significant strain on population health and economic and social welfare . the issue of weight gain is complicated in clinical scenarios by the fact that more than one medication in a regimen can be the cause ( e.g. , lithium and olanzapine used in managing bipolar disorder ) or even mitigating it ( e.g. , stimulants ) . weight changes are also set against a backdrop of physical changes occurring at developmental stages and changes in weight that may have occurred due to illness . further , more data is needed to provide clarity regarding weight gain and cardiometabolic risks in youth taking these medications . because of these simultaneously moving targets and need for better data , making decisions regarding the appropriate course of action can be extremely complicated for youth , families , and prescribers . how these factors are prioritized in decision making within these three groups is not well known . in our study , the concerns for metabolic side effects and weight gain were apparent and influential on behaviours . prescribers discussed their own personal values and tacit experience with treating patients and decisional dilemmas around choice of agents with one describing it as  such a crap shoot  . parents also described their knowledge of the side effects from what they observed and their concerns based on family histories of metabolic conditions ( e.g. , diabetes ) . although the concern by parents was expressed , there was little resolution in their conflicted feelings as it appears that the youth and prescriber ultimately would be making decisions about weight management . interestingly , the prescribers in our study tended to be focused on glucose related complications more so than cholesterol with only one prescriber discussing  heart disease  and cholesterol . the parent and youth experience of prescriber based monitoring appeared to be variable in quantity and quality . rates of guideline concordant monitoring of antipsychotic - related cardiometabolic side effects are often poor . the approach to managing and monitoring antipsychotic - related weight gain and potential cardiometabolic effects appears mainly reactive without forethought of a larger management plan for mitigating the effects . in addition to potential physical health concerns created by obesity , negative psychosocial consequences can result from being overweight and obese . , psychotropic related weight gain has been shown to impair quality of life proportionally with weight gain and increased feeling of hopelessness and decreased self - worth . further explication of the complex relationships with antipsychotic - related weight gain in youth and its effects on quality of life , self image , and its impact on adherence in younger people is warranted . this qualitative study demonstrates that antipsychotic - related weight gain is associated with significant physical , and mental consequences and there is a shared concern regarding these sequelae among youth , parents , and prescribers . more research is needed regarding the short- and long - term implications of weight gain and cardiometabolic effects and how the risks and benefits of treatment are managed by patients and prescribers in therapeutic decision making .
objectives . to explore the lived experience of youth , caregivers , and prescribers with antipsychotic medications . design . 
 we conducted a qualitative interpretive phenomenology study . 
 youth aged 11 to 25 with recent experience taking antipsychotics , the caregivers of youth taking antipsychotics , and the prescribers of antipsychotics were recruited . subjects . 
 eighteen youth , 10 caregivers ( parents ) , and 11 prescribers participated . results . 
 eleven of 18 youth , six of ten parents , and all prescribers discussed antipsychotic - related weight gain . 
 participants were attuned to the numeric weight changes usually measured in pounds . 
 significant discussions occurred around weight changes in the context of body image , adherence and persistence , managing weight increases , and metabolic effects . 
 these concepts were often inextricably linked but maintained the significance as separate issues . 
 participants discussed tradeoffs regarding the perceived benefits and risks of weight gain , often with uncertainty and inadequate information regarding the short- and long - term consequences . 
 conclusion . 
 antipsychotic - related weight gain in youth influences body image and weight management strategies and impacts treatment courses with respect to adherence and persistence . in our study , the experience of monitoring for weight and metabolic changes was primarily reactive in nature . 
 participants expressed ambiguity regarding the short- and long - term consequences of weight and metabolic changes .